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Hospital-based palliative care 

Hospital-based palliative care
Chapter:
Hospital-based palliative care
Author(s):

Patricia Maani-Fogelman

and Marie A. Bakitas

DOI:
10.1093/med/9780199332342.003.0003
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I had the pleasure of meeting with you in my mother’s room a few weeks ago and wanted to let you know that although it was a very difficult time for me, your patience, listening and compassion really helped put me at ease and your wisdom helped guide me into making some responsible decisions. I really believe that with your help I was able to stand up for what my mother wanted and I did the right thing even though it was the hardest to do. Thank you for all you did for me and for all of the others you assist.

A patient’s daughter’s note to a palliative medicine nurse practitioner after a consult for her mother

An invasion of armies can be resisted, but not an idea whose time has come.

Victor Hugo

Key points

  • The structure, clinical processes, and measurement of outcomes of specialized palliative and hospice services, organized as hospital-based palliative care (HBPC) programs, have grown in sophistication in response to documented, poor end-of-life (EOL) care, growth of the elderly and advanced chronic illness populations, and documented successes of pilot and maturing clinical palliative care programs.

  • Standards, guidelines, and other resources are now available to assist health systems to develop, sustain, or expand palliative care services for persons of all ages and stages of illness, along the entire care continuum. All hospitals and healthcare systems should develop palliative care services that are consistent with these standards and the mission, size, and scope of the health system.

  • Processes of “best-practice” palliative care should address the right person at the right time and to the appropriate degree. Fundamental processes of HBPC include introduction of palliative care services to patients and their families at the time of diagnosis with life-limiting illness; triggers for palliative care referral; standardized assessment; proactive advance care planning; treatment decision-making; crisis prevention; expert symptom management; attention to psychosocial, spiritual, and physical needs; family care; and bereavement.

  • Processes and infrastructures of care should exist “upstream” from palliative care services so that advance care plans documenting patients’ values and preferences for care (including proxy decision maker, site of care, symptom management, artificial nutrition and hydration, and resuscitation) can be honored.

  • Establishing standardized assessment, measurement, and reporting of patient, family, and institutional outcomes is an essential component of every HBPC program both for program evaluation and research.

  • Institutional resources, both internal (e.g., quality improvement and ethics committees) and external (e.g., The Joint Commission [TJC], Center to Advance Palliative Care [CAPC]), can assist with the development or improvement of a high quality, cost-effective HBPC program.

Hospital-based palliative care (HBPC) is a continually evolving moral imperative: the number of Americans living with chronic illness exceeds 90 million, and seven of every 10 Americans die from complications of a chronic illness.1,2 This burden is significantly higher in the Medicare population where the majority of deaths are attributable to nine diagnoses: congestive heart failure, chronic lung disease, cancer, coronary artery disease, renal failure, peripheral vascular disease, diabetes, chronic liver disease, and dementia.3 As the 2012 Dartmouth Atlas of Healthcare notes, “Patients with chronic illness in their last two years of life account for about 32% of total Medicare spending, much of it going toward physician and hospital fees associated with repeated hospitalizations.”3Moving forward with better integration of palliative care in the end-of-life care of inpatients, one must consider the following: What do our patients desire at the end of their lives? Where do they want to spend the time they have left—closer to home, in the hospital, or at home? When medical interventions are deemed medically inappropriate or unlikely to yield a meaningful benefit, do patients want to pursue treatment or cease and desist with transition to a different plan of care?

Comparisons of location of death for Medicare beneficiaries during the period 2005–2009 versus 2000 reveal fewer numbers died in hospital yet use of intensive care unit services and healthcare transitions increased most in the last few weeks of life.1,3,4 Although research confirms that patients with advanced illness report a preference to die at home, the majority are still dying in the hospital. Care was rarely aligned with reported preferences: among the patients who indicated that they preferred to die at home, the majority (55%) died in the hospital. The evidence demonstrates the vital importance of high-quality delivery of palliative care services within the context of inpatient care, especially when the admission is likely to become the patient’s terminal admission. This understandably highlights the importance of pioneering methodologies to end-of-life care to facilitate engagement of patients and their families in early discussions of preferences for end-of-life care in advanced medical illness before catastrophe strikes and aggressive interventions are initiated at end of life.3,4,5 Chronic illness and longer life were the legacy of the 20th century. However, the healthcare system did not keep pace with medical advances. The hospital became a common location for a good portion of EOL care despite Americans’ stated preference for death at home.4,5 An analysis of the experience of dying among chronically ill Medicare recipients revealed more hospice care in 2007 than in 2003. Although a percentage of seriously ill patients experienced their final admission in a critical care unit, by and large hospital deaths occurred in non-critical-care units and could have been anticipated for hours or days before death actually occurred. Despite this opportunity to provide comfort measures during the dying process, patients dying in the acute care hospital experienced pain, dyspnea, anxiety, and other distressing symptoms.6,7,8 Hospitals were designed primarily to provide acute, episodic care to persons with acute illness rather than comfort and continuity to persons who were not expected to survive a particular disease or episode of illness. Therefore, fundamental system reform and redesign was needed to improve (and possibly prevent) hospital care of persons with life-limiting illness. As Berwick9 wrote, “Academic medicine has a major opportunity to support the redesign of healthcare systems; it ought to bear part of the burden for accelerating the pace, confidence, and pervasiveness of that change. …‘Where is the randomized trial?’ is, for many purposes, the right question, but for many others it is the wrong question, a myopic one. A better one is broader: ‘What is everyone learning?’” Asking the question that way will help clinicians and researchers see further in navigating toward improvement. This is a call to action, particularly for nurses, since nursing care is the primary service provided during hospital admission and much of the care and the system that patients experience could be influenced by nurses at all organizational levels. The way nurses learn and share their knowledge will further direct the process of patient care. Most other types of care, such as physician consultation, diagnostic tests, and pharmaceutical treatments, do not generally require inpatient admission.

Hospital-based palliative care programs have begun to change the quality and quantity of hospitalized deaths.10,11 Nurses have served as leaders and active team members to define, direct, and lead multidisciplinary and interdisciplinary teams and modify efforts at multiple levels of the hospital care system to improve the complex care process for persons with life-limiting illness.12 Improved palliative care structure, standards for care processes, and measurement of outcomes have begun to come about as a result of the development of HBPC programs. The new millennium marked the “end of the beginning” of the discipline of palliative care.

This chapter provides nursing leaders and others with historical and foundational information on HBPC for the purpose of improving access to high-quality palliative and hospice services for the right person, at the right time, and in the right amount. The chapter begins with two cases. The first case illustrates how many patients experience life-limiting illness in many of our current health systems. The second case illustrates how serious illness can be experienced differently in a health system with a comprehensive HBPC program. The cases are followed by discussion of a variety of HBPC structures or models, palliative care delivery processes, quality improvement (QI) and outcomes measurement, and future directions in the evolution of HBPC programs. The information contained in this chapter is important for all nurses who care for persons with life-limiting illness, including senior nursing leaders, clinical nurse specialists, nurse practitioners, nurse managers, educators, quality improvement nurses, nurse researchers, and especially nurses on the front lines at the bedsides of patients with serious illness.

Case study

Mrs. O, an 80-year-old female with altered mental status, urosepsis, and respiratory failure

Mrs. O, an 80-year-old female, was admitted to the medical/surgical unit with altered mental status, dehydration, and urinary tract infection. After initial labs and urine cultures were sent, she was started on broad-spectrum antibiotics and intravenous fluids for gentle rehydration. Her past medical history was significant for emphysema, hypertension, and breast cancer in remission since age 50.

Mrs. O developed further confusion, hypotension, agitation, cough, and dyspnea. A chest radiograph reveal bilateral infiltrates, and the medical team ordered supportive oxygen therapy, nebulizer treatments, and transfer to a special care unit for close observation. Labs later confirmed sepsis.

Her respiratory status continued to decline, with increasing oxygen demand, and a face mask was added. As Mrs. O was declining, the resident asked her, “Do you want us to do everything for you, to save your life?” She continuously nodded her head “Yes” to the question. Shortly after this “discussion,” Mrs. O suffered a respiratory arrest, received cardiopulmonary resuscitation (CPR) including intubation and mechanical ventilation, and was transferred to the intensive care unit (ICU) in critical condition. No family members were identified to assist the medical team with decision-making.

While she was in the ICU, a Swan-Ganz catheter and central line were inserted, multiple daily blood draws were taken, and Mrs. O remained heavily sedated to prevent dislodging her tubes. Her medical condition progressively deteriorated, and the medical and nursing staff became increasingly frustrated, feeling helpless and not knowing Mrs. O’s goals of care. Her primary care physician had not held prior discussions with her and did not have any record of advance directives. After multiple attempts, a cousin from out of state was located who advised the medical team that he did not really have a relationship with the patient and could not make any decisions for her. Over the second week of her ICU stay she arrested again, requiring compressions and defibrillation. She progressed to overwhelming septic shock with multiorgan failure that did not respond to aggressive interventions such as dialysis. On hospital day #20, Mrs. O died in the ICU.

Quality-of-care issues identified in this case

  • Discussion of advance directives should take place with patients when they have capacity and are not in crisis.

  • Early introduction of palliative care specialists may help to clarify and document patients’ goals of care and pain/symptom management preferences.

  • Lack of advance planning can result in healthcare provider frustration, fatigue, and moral distress.

  • Medical and nursing staff education about advance directives, palliative care, and EOL issues can establish baseline competence levels.

  • Unnecessary patient and staff suffering can be minimized if palliative care education, protocols, and policies are in place to support patient identification of goals of care.

Case study

Mr. X, a 47-year-old male Status post (s/p) motor vehicle accident

Mr. X is a 47-year-old male who was driving home from work when he swerved and lost control of his vehicle, which then went down over an embankment, and was entrapped. He was found unconscious by an oncoming driver, who called 911. His Glasgow Coma Score was 6T, and active medical problems upon admission to the Intensive Care/Trauma Unit included subarachnoid hemorrhage, subdural hemorrhage, multiple intraparenchymal hemorrhages, left parieto-occipital scalp laceration, and right upper lung collapse. Electroencephalogram revealed diffuse slowing consistent with encephalopathy without evidence of epileptiform activity. Magnetic resonance imaging (MRI) showed diffuse widespread axonal injury to the brain with large areas of contusion and hemorrhagic transformation.

The palliative care team (PCT) was consulted on admission and was present for initial and all subsequent meetings with the patient’s wife and extended family. There was noted conflict between family members with regard to the plan of care and perceptions about Mr. X’s preferences. Despite aggressive interventions, Mr. X did not demonstrate any neurological improvement and continued to decline with loss of reflexive maneuvers and ventilator-dependent respiratory failure. The medical teams were in agreement that his prognosis was extremely poor, and he would not recover to a meaningful level of function. Multiple family meetings were held, and his wife shared that her husband would not desire artificial means of support in the event he was not going to make a full and meaningful recovery to independent function (prior-to-admission baseline). His parents and siblings felt everything should be continued and escalated and that life in a nursing home was still better than death. His adult children were conflicted, feeling caught in the struggle between angry grandparents and their mother.

During a family meeting on hospital day #5, the patient’s father and brother asked when he would recover to return home. The PCT reviewed with the family that due to the devastating extent of the injuries, he would require continuous custodial care in a skilled facility and he would not regain any independent function. His siblings then replied that would not be an acceptable life for the patient, who was an outdoor enthusiast and enjoyed a very active lifestyle. His parents also agreed with this assessment. His wife and children were in agreement as well. The PCT reviewed the options for Mr. X’s plan of care with his spouse and extended family. The family decided to elected terminal extubation and transition to comfort measures and inquired as to how his comfort would be assured, that is, what parameters would be assessed for comfort and how they would be assessed.

Following the meeting, the family asked for immediate extubation with transition to comfort care. The PCT assisted with terminal extubation orders, and the comfort measures order set was started. The patient was medicated prior to extubation and placed on an opioid infusion to assure he remained free of respiratory distress and pain. After extubation, the critical care nurses assisted with personal care and removed all nonessential medical equipment (i.e., ventilator, infusion devices, code cart) from patient’s room to allow more room for family to remain with patient. The family returned to the room and remained with the patient until his death.

Quality-of-care issues identified in this case

  • The patient was identified early in the traumatic illness.

  • Patient and family’s values and preferences for care were identified early and integrated into the plan of care.

  • A team approach allowed for various members to assist with the patient’s diverse needs across the entire episode of illness.

  • Palliative care involvement occurred in the hospital setting. Continuity occurred across all settings.

  • The patient’s preference for location of death was met.

Brief history and definitions of hospital-based palliative care

In 1974, the Royal Victoria Hospital in Montreal, Canada, developed one of the first initiatives in North America to improve HBPC. They developed a palliative care service to meet the needs of hospitalized patients who were terminally ill within the general hospital setting.13 An integral part of the Royal Victoria Hospital, a 1000-bed teaching hospital affiliated with McGill University, the palliative care service consisted of five complementary clinical components: (1) the Palliative Care Unit, (2) the home care service, (3) the consultation team, (4) the palliative care clinic, and (5) the bereavement follow-up program. Members of an interdisciplinary team were involved with the care of these patients, and the focus was on holistic care with pain control and symptom management.

Three decades later, these basic palliative care concepts were becoming more prevalent in many US hospitals. In the United States, a number of milestones over the past four decades have shaped the evolution of care of the seriously ill (see Box 3.1). In the 1970s, the concept of home-based hospice programs (often volunteer only) migrated to the United States from Europe and Canada. Since that time, a number of professional, medical, societal, and academic endeavors have coalesced in the form of HBPC programs, which adapt and “upstream” many principles of hospice care into mainstream medicine. Although there is no requirement for all healthcare systems to have such a program, palliative care is gradually being recognized as a “standard of care.” For organizations that still need convincing, Meier14,15,16 the case for implementation of and early involvement of hospital based palliative care: (1) to improve clinical quality of care for seriously ill patients; (2) to increase patient and family satisfaction with care; (3) to meet the demand of a growing, chronically ill, elderly demographic; (4) to serve as “classrooms” for the next generation of clinicians who need to provide better care to the seriously ill; and (5) to provide value-added, cost-effective care in the face of a national healthcare and economic crisis.17 A recent review of palliative care studies presents a compelling argument that, based on the amount of available evidence, HBPC is state-of-the-art care.

Although much of the data to support the evolution of HBPC have come from care deficits identified in hospitalized patients at the very end of life1,2,3,4; the goal of HBPC is to improve the quality of life of persons with life-limiting illness much earlier in the course of illness across all settings of healthcare.10,13,15,16

A number of definitions of HBPC exist and contain similar elements. In 1990, the World Health Organization defined “palliative care” as care that “seeks to address not only physical pain, but also emotional, social, and spiritual pain to achieve the best possible quality of life for patients and their families. Palliative care extends the principles of hospice care to a broader population that could benefit from receiving this type of care earlier in their illness or disease process.”18 An HBPC program has been defined by the American Hospital Association (AHA) as “an organized program providing specialized medical care, drugs, or therapies for the management of acute or chronic pain and/or the control of symptoms administered by specially trained physicians and other clinicians; and supportive care services, such as counseling on advance directives, spiritual care, and social services, to patients with advanced disease and their families.”15,16 The Center to Advance Palliative Care (CAPC) defines HBPC as “an interdisciplinary medical team focused on symptom management, intensive patient–physician–family communication, clarifying goals of treatment and coordination of care across health care settings.”14 In Temel’s et al. (2010)19 landmark study, “Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer,” lung cancer patients who received palliative care along with conventional treatment survived 2.7 months longer than patients who received only standard oncological care. Published by the New England Journal of Medicine, this study clearly demonstrated the value, need, and importance of palliative medicine interventions for patients with advanced, life-limiting illness.18

The good news is that since the AHA survey began to measure the availability of HBPC programs in 2000, there has been a steady growth (see Figure 3.1).15 This positive movement is tempered by two issues. First, there is wide variability in patients’ access to palliative care programs across the United States (see Figure 3.2). In particular, the southern region of the United States, at 41%, has the lowest availability of programs.20 Second, despite definitions of HBPC, mandatory standards of care do not yet exist; therefore, programs vary in their quality, components, and emphasis on the missions of service, research, and education.


Figure 3.1 Percent of hospitals reporting an HBPC program.

Figure 3.1 Percent of hospitals reporting an HBPC program.

Source: Data from Goldsmith, Dietrich, et al. (2008), reference 20.


Figure 3.2 Variability in access to palliative care.

Figure 3.2 Variability in access to palliative care.

Source: Nurse Executive Watch, 2008. Reprinted with permission.

Primary, secondary, and tertiary models of hospital-based palliative care

Promoting HBPC requires a myriad of resources. Depending on the model of palliative care being introduced, the required resources can vary greatly. For example, some changes may require financial support via construction or addition of staff, whereas other changes are less resource intensive. Regardless of the healthcare system and the availability of resources, all healthcare practitioners have the ability to introduce palliative care concepts and use already established resources to develop or improve their palliative care services. According to von Gunten,21 “One way that patients and their families will get better care is to ensure that clinical services focusing on the relief of suffering are available in every hospital.” (p. 876) He suggests that hospitals (and healthcare systems) consider their mission and level of palliative care delivery (e.g., primary, secondary, tertiary), as they do other medical specialties, and incorporate a model of palliative care resources in accordance with that level. Institutions with limited resources may choose a primary model that focuses on enhancing existing services and clinician education, while secondary and tertiary palliative care programs may provide multiple services, including inpatient and/or outpatient consult teams, an inpatient palliative care/hospice unit, and a home care program, all under the jurisdiction of a single hospital system. A full-service approach can ease transitions among different levels of care and has the potential to provide the optimum in seamless palliative care. The CAPC also offers various consensus guidelines for operational and inpatient unit metrics that hospitals can use to measure programs for quality, sustainability, and growth.20 Table 3.1 lists a variety of different models that have been described by the CAPC. In addition to an extensive manual on developing a program,21 the CAPC offers a variety of other resources including individual consultation to developing programs via on-site visits and follow up consultations (see “Center to Advance Palliative Care Leadership Centers,” below).

Table 3.1 Program model options

Characteristics

Solo practitioner model

Full team model

Geographic model

The following chart is designed to help the planning team assess various options and their potential to provide this care in a manner that best meets hospital and patient needs.

Philosophy/approach

  • Consultative service

  • Consultative service with full team of doctor, ANP or nurse, and social worker assesses and follows patients referred by attending physician

  • Inpatient program with all patients on designated unit

  • Doctor (MD) or advanced nurse practitioner (ANP) provides initial assessment and communication with attending physician, nursing, and social work staff

  • Inpatient staff team (doctor, ANP, social worker, chaplain, therapists specially trained to provide palliative care) manages patients

  • Provides advice to primary physician, or may assume all or part of care of patient and/or write patient orders

  • May or may not write patient orders

  • Staff is trained in palliative care and focuses on creating an inpatient environment supportive of patients and families

  • MD or ANP refers patients to needed services (such as social work), discusses needs in conference, and communicates with clinicians

  • Doctor bills fee-for-service as a consultant physician

  • Approach is milieu intensive as well as individual patient focused

  • Team refers patient to needed services and discharges to appropriate setting(s), discusses needs in conference, and communicates with all team members

  • Assists patient and family with advance directives and plans for future

  • Care reimbursed under licensure and guidelines (e.g., acute care)

Service model

  • MD or ANP receives referrals from attending physician, hospital staff, patient, or family

  • Team works in unison to coordinate care plan and provide services

  • Patients referred to palliative care program are screened by team for appropriateness

  • Social worker on team may assume role of case manager

  • Appropriate patients are transferred to service when they meet admission criteria

  • All units in hospital deliver palliative care as part of their mission

  • Team develops and uses standing orders to manage patient

  • Palliative care team assumes responsibility for patient management and discharge planning

  • MD or ANP develops protocols for patient care in conjunction with treatment team, educates staff about palliative care and protocols

  • All hospital units deliver palliative care as part of their mission

  • Patient may be followed on an outpatient basis after discharge

Staffing and budget implications

  • One FTE MD or ANP

  • 0.5 to one FTE medical director

  • 0.5 to one FTE medical director

  • 0.2 FTE clerical support

  • One FTE ANP

  • One FTE ANP

  • Access to and time allotted for social worker, nursing, physical and occupational therapists (PT and OT), and pharmacy to respond to referrals (should be monitored for time requirements)

  • 0.5 medical social worker

  • 0.5–1.0 FTE medical social worker

  • One FTE clerical support

  • 0.5–1.0 FTE chaplain

  • Access to and time allotted for social work, nursing, PT, OT, and pharmacy to respond to referrals (should be monitored for time requirements)

  • 0.2 FTE finance person

  • Nurse manager

  • Inpatient unit staffing

  • 0.2 FTE finance person

  • Preferably, unit is situated where staff are likely to have training in fundamentals of palliative care

  • 0.2 FTE medical director (if ANP-led)

  • 0.2 FTE finance person

  • An allocation of DRG revenues may be required when a patient transfers from another unit to palliative care.

Patient volume thresholds

  • Patient coordination is intensive, and ANP spends time with patient providing psychosocial support as well as symptom management and family teaching. Staff teaching as well

  • Number varies, depending on whether patient is transferred to the team for all management

  • Geographic unit approach allows the institution to designate beds, yet allows the number of beds to flex with patient volume

  • Can reach the largest number of patients and does not restrict the number of beds occupied by patients requiring palliative care services

  • Most efficient staffing with 12 or more beds, preferably in rooms with space for family members to stay and room for staff and family members to meet

  • Literature does not define volume but anecdotal reports suggest maximum comfortable caseload of 4 new cases per day and average census of 10 patients/week

  • Because reimbursement is still acute-care oriented, the unit can flex to a capacity deemed appropriate to staffing levels and clinical expertise

Benefits/advantages

  • Lower start-up costs and financial risk

  • More medical expertise available

  • The program has a clinical milieu and staff to support it

  • Opportunity to develop a program based on existing patient population

  • Provides alternative to medical staff who struggle with implementing new skills and knowledge

  • Greater control over patient care

  • Less threatening to medical staff

  • Higher visibility and influence within the hospital

  • Builds on existing programs and services and uses them whenever possible

  • Consultative service reaches largest number of nurses and physicians through bedside and nursing station teaching and role modeling

  • Inpatient unit can be made patient- and family-friendly

  • May be easier to manage overuse of resources, length of stay

  • Builds on existing programs and services and uses them whenever possible

  • Opportunity for philanthropic support more easily developed

  • Can convert all or part of an existing unit to minimize additional staffing

Disadvantages/threats

  • Program rests on one individual’s shoulders

  • Added costs for team with limited, or no, additional revenue

  • Geographic patient concentration deprives staff in other parts of the hospital from exposure to the service and learning opportunities

  • Patient volume quickly limited by workload

  • Physician must establish rapport with many medical staff members; consultant serves as an advisor to the primary physician, and recommendations may or may not be followed

  • May be viewed as the “death ward,” making physicians reluctant to refer patients

  • Service effectiveness is dependent on staff knowledge and cooperation

  • Unless beds can be shared efficiently with an adjacent unit, underuse of continuous nursing coverage beds due to low referral volume will translate into losses for the unit

  • All units referring patients need to be educated

  • Service effectiveness is dependent on staff knowledge and cooperation

  • All units referring patients need to be educated

Source: Copyright 2013: Center to Advance Palliative Care (CAPC). Reprinted from CAPC website with permission: http://www.capc.org/building-a-hospital-based-palliative-care-program/designing/characteristics/program-model-chart/document_view.

Primary palliative care

Primary palliative care should be available at all hospitals. This level of care requires, at a minimum, clinician education in the basics of pain and symptom management. Primary palliative care refers to a level of care whereby basic skills and competencies are required of all physicians, nurses, and other healthcare practitioners who come in contact with persons with life-limiting illness. The National Consensus Project (NCP), the National Quality Forum (NQF), and the Joint Commission (TJC) have each identified standards that should be addressed in all hospitals and other settings (see later discussion). All practitioners should be competent at this level.

Clinicians can gain the knowledge, attitudes, and skills needed to provide palliative care to their patients through basic palliative care training and clinical practice. There is a growing availability of continuing education, including established formal programs for all disciplines to improve their knowledge of basic palliative care principles. The End-of-Life Nursing Education Consortium (ELNEC) and Education for Physicians on End-of-Life Care (EPEC) are two comprehensive educational programs that can provide such information. Both educational programs are further described later in this chapter and in chapter 66.

Secondary palliative care

Secondary palliative care refers to a model in which all providers have a minimum level of competence and specialists provide palliative care through an interdisciplinary team (IDT), specialized unit, or both. The development and success of these specialized services come about as a result of strong leadership, marketing, and accessibility.16,19,21 It is not necessary for an IDT or unit to evaluate every patient with palliative care needs who is admitted to the hospital, but these specially trained clinicians are available as a resource and guide for their colleagues.

Tertiary palliative care

Teaching hospitals and academic centers with teams of experts in palliative care are classified as tertiary organizations. A tertiary-level program may serve as a consultant to primary- and secondary-level practices in difficult clinical situations or as model programs to assist developing centers. These centers also serve as training programs for incoming palliative medicine providers, with fellowship programs ranging from 1 to 2 years for both physicians and nurses. Practitioners and institutions involved at the tertiary level of palliative care are also involved in educational and research activities.21,22,23,24,25Multidisciplinary training programs for nurses and physicians are an important function of a tertiary center (see below). Tertiary centers also have an obligation to perform research to enhance the evidence base for palliative care.

It is the responsibility of all hospitals and healthcare organizations to be competent, at a minimum, at the primary level of palliative care. Organizations at different levels may choose among different components of care to incorporate into their model. Some components are less resource intense (e.g., staff education, care pathways), while others may require additional allocations of budget and personnel. The latter resources include IDTs, specialized PCUs, outpatient/ambulatory palliative care clinics, and structured outreach or strong relationships with skilled nursing facilities (SNF) and home-based hospice programs.

The inpatient interdisciplinary consult team

A growing literature summarizes the development of palliative care consultation teams within hospitals to offer specialized consultation and expertise to patients, families, and other healthcare providers.24,25,26,27 Dunlop and Hockley published a manual in 1990 and a second edition in 1998 describing the experience in England. They described the movement as one that tries to take the hospice philosophy of care and bring it into the hospital using a consultancy team. A number of US and European hospital-based teams have described their experiences.28 ,29 Among the components of successful teams are an interdisciplinary approach, physician and nonphysician referral, rapid response to requested consultations, around-the-clock availability, and ability to follow patients through all care settings.

Interdisciplinary consultation teams can be effective in modeling behaviors that are supportive of appropriate HBPC but they should also recommend infrastructure and organizational changes as part of their approach to consultation. Gathering data about demographic statistics about the location and nature of regular consultations may help to identify the need for particular institutional policies and procedures. For example, if a particular unit or care provider has difficulty managing patients with dyspnea on a regular basis, targeted educational approaches and treatment algorithms or standardized orders may help achieve consistent and long-lasting change. Theoretically, an IDT could “put itself out of business” with such an approach. Conversely, teams may become “stretched too thin” in their attempts to meet the needs of their organization, however, the news remains positive: teams to date have not reported the need to dissolve as an outcome of implementing system changes.

Studies have begun to examine the impact of IDTs on the overall care of hospitalized, seriously ill patients.30,31 However, this is challenging research and, as in any multicomponent intervention, it is difficult to identify exactly which components or processes of the team are responsible for the outcomes. Valid, reliable measures and multimethod research are likely to be needed to capture this information.38 Maintaining an IDT can be costly; therefore, it is imperative to continue to evaluate programs and strengthen the evidence base to provide economic justification for many hospitals. A consensus panel has recommended minimum data that should be collected by all consultation services31 (see “Measurement,” later in this chapter).

Inpatient hospice and palliative care units

Some hospitals, faced with the problem of providing high-quality palliative care, have found the development of a specialized unit to be the solution. In the United Kingdom, these units have been developed from preexisting oncology units, as part of another unit, or sometimes in a separate building that is distinct but near the hospital it serves.30 Hospitals in the United States have varying amounts of experience with opening specialized units for the care of patients with hospice, or palliative care needs.32,33,34 An inpatient unit has some advantages and disadvantages. Advantages include the following:

  • Patients requiring palliative care have a familiar place to go during the exacerbations and remissions that come with progressive disease.35,36,37,38,39

  • Unit staff and policies are under the control and financing of experts trained as a team who are skillful at difficult care and communications.36,37

  • Patients may get palliative care earlier if other care teams see the advantages of this approach and trust that patients will receive good care.40,41,42,43

Providers who monitor their patients on these units (if allowed) can learn valuable lessons about palliative care that can be carried forward to future patients.44,45,46,47,48 These future patients may not require admission to the PCU for some types of care. Some disadvantages of creating a PCU include the following:

  • It can prevent others from learning valuable palliative care techniques if the PCU staff are seen as “specialized” and are secluded in one area.47,48

  • Care providers may come to rely on this expertise instead of learning palliative care techniques themselves.

  • If PCU transfer includes a transfer of doctors to a palliative care specialist, patients and families may feel abandoned by their primary team in the final hours.

  • Hospice providers fear loss of the hospice philosophy when a PCU exists in the context of the general hospital.

Outpatient/ambulatory palliative care clinics

In an ideal world, patients with life-limiting illness spend the majority of their time outside of the hospital with only occasional need for attention by a palliative care specialist. Transitions of care are a common area of difficulty for patients with palliative care needs. An outpatient service can serve as an initial point of referral for patients early in their disease process33 or it may allow a discharged patient to continue to have specialized management of their symptoms and other needs. A number of models of delivering outpatient care exist,33,34,35,36 from a consultative model in which palliative care clinicians participate in other disease-focused outpatient visits (e.g., in clinics serving patients with advanced lung disease, congestive heart failure, cancer, amyotrophic lateral sclerosis [ALS], etc.) to a model in which geographic space is dedicated to palliative care clinicians and patients. Outpatient services are still considered a novel, less frequent service component of HBPC in most organizations, however this has become a recognized service delivery need that is fast growing in demand and popularity across national health systems today.44,45,46,47,48,49

Liaisons with skilled nursing facilities and home hospice

Perhaps one of the most important ways to improve HBPC is to develop strong relationships with other healthcare agencies outside of the hospital, so that alternatives to inpatient admission for palliative care exist. Alternatives such as home hospice care or skilled hospice care within assisted-living centers, free-standing hospices, or specially designated areas in nursing homes or rehabilitation facilities can provide expert palliative and hospice care. However, some areas of the United States lack these options. For example, in some rural areas, healthcare services such as visiting nurses agencies, home care, hospice, and SNFs are sparse, or staff may feel unprepared to care for people who require intensive palliative care. Some visiting nurse and home care agencies may see so few symptomatic, seriously ill patients that it is difficult for staff to maintain adequate palliative care and hospice expertise in these agencies. There continues to be a need to develop models and strengthen relationships between HBPC programs and community agencies that will provide palliative care services prior to or following hospital palliative care services.50,51,52,53,54,55,56,57,58,59 An area for further growth and exploration is the branching out of palliative care delivery to satellite locations with advanced illness patients such as end-stage renal disease, Class III-IV heart failure patients, and nursing home residents with multiple advanced and complex comorbid medical conditions.

Bereavement services

Improving HBPC does not end with the development of mechanisms to ensure peaceful, pain-free patient death. Although accomplishing this goal is surely a comfort to family and friends, bereavement care for survivors is an important final step in the process of HBPC. Which families are most in need of specific services? Identifying families at the greatest risk has been the topic of palliative care research, particularly in evaluating the quality of palliative care services.60,61,62,63,64,65,66

Bereavement services for survivors are an important part of the total care plan after the patient’s death (see chapters 29 and 60). The NQF preferred practices standard for bereavement care indicates organizations should “Facilitate effective grieving by implementing in a timely manner a bereavement care plan after the patient’s death, when the family remains the focus of care.”63 Adverse physical and psychological outcomes of unsupported grief are known to occur during the bereavement period.67 Because of this, bereavement services are a typical component of the services offered to families when patients die as part of a hospice program. Because not all deaths in the United States have hospice involvement, a large portion of families must rely on bereavement follow-up offered by other care providers. Although historically few hospitals routinely offered bereavement services to families after patients died in the hospital,61 a growing interest in implementing such programs has come about as a result of implementing HBPC programs.

Bereavement services can address currently unmet needs of survivors, who can benefit from resources that offer information and support in coping with the loss.63,65,66,67,68 Having follow-up contact with decedents’ family members can also provide HBPC programs with information about the effectiveness of EOL care. Families’ perspectives should be sought about what went well and what could be improved. For example, results of a focus group of bereaved family members indicated that, although the family was quite satisfied with pain management, breathing changes and dyspnea were not anticipated and were very distressing.69 Hence, this became a target for improving EOL care in one hospital.

Use of family proxy perspectives is an emerging area of research and quality improvement.70,71,72,73,74,75 (Measurement issues are described later in this chapter.) Press-Ganey, a healthcare measurement and improvement company that is well known for collecting patient satisfaction data after hospital discharge, now also has a survey to collect family perspectives on the EOL experience in the hospital.76 This survey asks about topics such as care at the time of death; care provided by nurses, physicians, chaplains, social workers, and others; environment; family care; symptoms; and overall satisfaction with care.

Standardized bereavement care can take many forms and can result in improved family satisfaction with care.65 These actions might include sending a note of sympathy or establishing some other contact from a staff member, mailing a list of local bereavement resources or a pamphlet, and delaying the time before a hospital bill is mailed out to prevent its coinciding with funeral or memorial services. A variety of bereavement services have been developed for parents that specifically address their needs after the death of an infant or child.68,77

Interdisciplinary education: a key component of palliative care

It is imperative that staff that care for patients with life-limiting illness have sufficient and appropriate palliative care knowledge and skills. Organizations with or without HBPC programs should encourage staff members to participate in conferences on EOL and palliative care and also should support them through the continuing education process (e.g., becoming certified in a specialty). The value of improved education is not only in direct patient care, but in the role modeling that takes place. The majority of students in medical, nursing, and other healthcare disciplines receive clinical training for practice in hospitals. However, few hospitals provided role models for teaching palliative care practices. The following is one of several comments made by family members about the insensitive way the act of “pronouncing” the death of their loved one was handled by an inexperienced new medical intern.56,57,59

I was holding his hand when he stopped breathing. I called the nurse, who called the doctor. He went over and looked at him lying in the bed, listened for a heartbeat with his stethoscope and said, “He’s dead,” and walked out of the room. That’s it—not “I’m sorry.” No, “Is there anything we can do?” Just, “He’s dead.” It was painful, and made us think that the staff didn’t care.

A study by Ferris and colleagues58 documented that medical schools devote little time to care of dying patients. A survey of medical interns revealed significant concern and fear about providing these services with no or little supervision. The traditional “See one, do one, teach one” supervisory principle of medical education was ineffective. One resident explained that the pronouncing experience was not one that was perceived as causing harm when performed by the inexperienced. Another stated, “I felt really inadequate, I had absolutely no idea what to do when the nurse called me to pronounce this patient whom I had never met—my first night on call. I was never taught the steps—how long should I listen to the chest to be sure there was no heartbeat; what, if anything else, I should do; what should I say to the family. Thankfully, the death coordinator was there to help me fill out the paperwork.” Conversely, in states where nurses are allowed to pronounce deaths, some course work exists to teach a process that gives attention to the family. For resident education, there is a comprehensive, multimedia program called “The Art of Compassionate Death Notification.”59 The program includes a facilitator’s guide, manuals for learners, a pocket card of the process, and videos demonstrating communication skills. At our medical center, the residency program conducts real-world patient scenarios where residents are given random patient case scenarios (actors play the role of patients/family) and carry out their evaluation of the case. These scenarios are observed by senior physician reviewers, who then provide feedback to the resident regarding communication technique, body language, and so forth. The focus of such teaching formats is to provide trainees with honest feedback on their ability to navigate real-life scenarios and bring attention to both the areas in which they excel and those in which they need assistance or improvement, such as communication/choice of words, body language, and self-awareness.

The lack of role models for students in the clinical setting is further compounded by the lack of palliative care content in student curricula81 and major textbooks.60,61,62 When major medical and nursing texts were analyzed, they were found to be sorely lacking in the content that would inform students about the basics of palliative symptom management, decision-making, and critical communication skills.77,78,79,80 On a positive note, however, there is evidence that this situation is changing: the growing awareness of and need for palliative care has triggered more incorporation of palliative care-focused content in medical and nursing school curricula and textbooks. Teaching formats have also become more innovative: Ellison and Radecke (2005) conducted an “Issues at the End of Life” course as a joint effort between the office of a university chaplain and a palliative medicine program for college students. This course earned multiple teaching awards for originality, creativity, and collaboration. “Issues at the End of Life” divided the class into sessions focused on religious, spiritual, and theological issues and included guest presenters from Geisinger Medical Center in Danville, Pennsylvania, including physicians, nurses, bioethicists, hospice and social workers, and counselors. The objectives were to demystify aging, illness, and death while enhancing empathy and compassion to promote improved communication skills that could be used across various difficult situations. The most unique element of this course was its service-learning project for the creation of a personal legacy: Each student worked with a designated community member facing EOL issues (due to advanced age, terminal illness, or both) to create a lasting, meaningful record of the person’s life. Projects included audio- and video recorded life histories, memory books, and even a quilt made from scraps of symbolic garments such as wedding attire, outfits from special occasions, baby blankets, and baptismal gowns. The course was a brilliant recognition of the common human experience of life and death—highlighting the need for better awareness, recognition, and interventions that offer as much attention at the end of life as one receives throughout life.63

Listed here are other creative ways to actively engage learners in palliative care education:

  • Arrange for clinician role models to provide lectures to students and faculty.

  • Assist with curriculum review of current EOL care training.

  • Change elective coursework and clinical work in hospice and palliative care to required status, and include these subjects in other mandatory clinical assignments.

  • Use texts that contain clinically relevant palliative care content.

  • Include content on ambulatory-based symptom management and decision-making that defines patient preferences for care.

  • Encourage students to describe evidence-based approaches to palliative care and to challenge their mentors about approaches and interventions that increase the burden of care without clear patient benefit.

  • Encourage students to learn from staff role models appropriate ways of communicating bad news and of presenting options that respect patient preferences and values.

  • Identify opportunities for undergraduate or graduate fellowships in palliative care.

  • Encourage quality improvement teams to offer students opportunities to participate and to collect data from patients, charts, and staff.

Experienced healthcare providers also have needs for specialty palliative care educational experiences. (See chapter 66 for a detailed discussion on the topic.) Both the nursing and medical professions have embraced the concept of palliative care continuing education, advanced academic training, and certification.

In the area of continuing education, the ELNEC and EPEC are exemplary programs. The ELNEC program is a collaboration of the City of Hope Medical Center and the American Association of Colleges of Nursing, and the program has a variety of curricula for different audiences (undergraduate and graduate nursing faculty, nurses working in critical care, pediatrics, or geriatric settings, etc.). The American Medical Association (AMA) and EPEC programs address similar issues for physicians. Both curricula are widely available as a means to educate practicing nursing and medical staff.

The Harvard Medical School program in palliative care education and practice

Another example of palliative care continuing education is sponsored by the Harvard Medical School Center for Palliative Care. In response to the need for leaders in palliative care education in nursing and medicine, the Harvard program offers intensive learning experiences for physician and nurse educators who wish to become expert in the clinical practice and teaching of comprehensive, interdisciplinary palliative care, as well as to gain expertise in leading and managing improvements in palliative care education and practice at their own institutions. The program includes a special pediatric track. The course is delivered in two sections: Part 1 consists of 7 days of intensive learning, followed by a 6-month interim when participants work on an individual project and contribute to weekly e-mail discussions of problematic clinical, educational, and program development cases presented by other participants through e-mail exchanges. Part 2 is a second 7-day block that includes continued experiential learning and training focused on communication, teaching methods, teamwork, and leadership.

The curriculum features content on how to (1) teach the fundamentals of palliative care (assessment of physical causes of distress, psychosocial and spiritual assessment, ethical and cultural issues, palliative care in geriatric and pediatric populations, depression, and bereavement); (2) communicate at the end of life (understanding the experience of life-threatening illness, delivering bad news, communicating across cultural barriers, family meetings, providing feedback to learners); (3) manage challenges in palliative care education (principles of adult learning, understanding, learning styles, new teaching methodologies); and (4) develop and promote clinical and educational programs in palliative care (assessing institutional structure and culture, evaluating readiness to change, dealing with resistance, developing and financing palliative care programs, and fund-raising strategies).

The course faculty includes physicians, nurses, social workers, and educators from within the Harvard teaching hospitals as well as outside experts. Complete information can be accessed at http://www.hms.harvard.edu/cdi/pallcare/pcep.htm.

Advanced education and certification in palliative care

As standards of care are increasingly applied to HBPC programs, advanced specialty training in palliative care will likely become a requirement. Academic opportunities for education and preparation as an advanced palliative care practitioner currently exist in a number of programs (see chapter 66 for additional details).

Following these programs and other specialized training, nurses may take advanced certification in palliative care through the National Board for Certification of Hospice and Palliative Nurses (NBCHPN). Eligible nurse practitioners and clinical nurse specialists can acquire the credential of ACHPN (Advanced Certified Hospice and Palliative Nurse). Certification exams are also available for registered nurses, licensed vocational nurses, nursing assistants, and nurse administrators. Nationally, hundreds have become board certified as palliative care specialists since the examinations’ inception.

A major advance in the field came about in 2007 when the American Board of Medical Specialties (ABMS) voted to approve hospice and palliative medicine as a recognized medical subspecialty. The application to recognize the subspecialty had broad support and was cosponsored by 10 medical specialty boards. As a result, physicians in a number of specialties—including internal medicine, family medicine, pediatrics, psychiatry, neurology, surgery, emergency medicine, and obstetrics and gynecology—are able to seek this certification. Prior to that time, this certification exam was offered by the American Board of Hospice and Palliative Medicine (ABHPM). In the first decade of certification, over 2100 physicians obtained certification from ABHPM. The ABHPM was not recognized by the ABMS, but worked successfully over the course of the decade to persuade the ABMS to recognize hospice and palliative medicine as a medical subspecialty. Although voluntary, this recognition is used by the government, healthcare systems, and insurers as evidence of high standards. There are currently 24 member boards of the ABMS (see www.abms.org). These 24 member boards constitute the officially recognized allopathic specialties of medicine in the United States.

Developing standards for hospital-based palliative care

A number of organizations have worked together to develop standardized palliative care practices.

National Consensus Project

In April 2004, the NCP for Palliative Care released its Clinical Practice Guidelines for Quality Palliative Care. An updated second edition of the guidelines was published in 2013. The guidelines, which can be downloaded free of charge (http://www.nationalconsensusproject.org), represent a consensus of four major US palliative care organizations: the American Academy of Hospice and Palliative Medicine, the CAPC, the Hospice and Palliative Nurses Association (HPNA), and the National Hospice and Palliative Care Organization (NHPCO). The guidelines identify core precepts and structures of clinical palliative care programs. Domains of palliative care from the guidelines are listed in Table 3.2. The domains were intended as a framework for HBPC programs to develop and evaluate their approaches to delivering comprehensive palliative care services. Although voluntary, one potential outcome for these guidelines is to provide a framework for certification or mandatory accreditation.66

Table 3.2 National Quality Forum preferred practices organized by National Consensus Project domains of quality palliative care

Ncp domains of quality palliative care

Nqf preferred practices

1. Structure and processes of care

1. Provide palliative and hospice care by an interdisciplinary team of skilled palliative care professionals, including, for example, physicians, nurses, social workers, pharmacists, spiritual care counselors, and others who collaborate with primary healthcare professional(s). [4. STAFFING]

2. Provide access to palliative and hospice care that is responsive to the patient and family 24 hours a day, 7 days a week. [3. AVAILABILITY]

3. Provide continuing education to all healthcare professionals on the domains of palliative care and hospice care. [8. EDUCATION]

4. Provide adequate training and clinical support to assure that professional staff are confident in their ability to provide palliative care for patients. [12. STAFF WELLNESS]

5. Hospice care and specialized palliative care professionals should be appropriately trained, credentialed, and/or certified in their area of expertise. [4. STAFFING]

6. Formulate, utilize, and regularly review a timely care plan based on a comprehensive interdisciplinary assessment of the values, preferences, goals, and needs of the patient and family and, to the extent that existing privacy laws permit, ensure that the plan is broadly disseminated, both internally and externally, to all professionals involved in the patient’s care.

7. Ensure that upon transfer between healthcare settings, there is timely and thorough communication of the patient’s goals, preferences, values, and clinical information so that continuity of care and seamless follow-up are assured. [11. CONTINUITY OF CARE]

8. Healthcare professionals should present hospice as an option to all patients and families when death within a year would not be surprising and should reintroduce the hospice option as the patient declines. [11. CONTINUITY OF CARE]

9. Patients and caregivers should be asked by palliative and hospice care programs to assess physicians’/healthcare professionals’ ability to discuss hospice as an option.

10. Enable patients to make informed decisions about their care by educating them on the process of their disease, prognosis, and the benefits and burdens of potential interventions.

11. Provide education and support to families and unlicensed caregivers based on the patient’s individualized care plan to assure safe and appropriate care for the patient.

2. Physical aspects of care

12. Measure and document pain, dyspnea, constipation, and other symptoms using available standardized scales. [5. MEASUREMENT & 6. QI]

13. Assess and manage symptoms and side effects in a timely, safe, and effective manner to a level that is acceptable to the patient and family. [5. MEASUREMENT & 6. QI]

3. Psychological and psychiatric aspects of care

14. Measure and document anxiety, depression, delirium, behavioral disturbances, and other common psychological symptoms using available standardized scales. [5. MEASUREMENT & 6. QI]

15. Manage anxiety, depression, delirium, behavioral disturbances, and other common psychological symptoms in a timely, safe, and effective manner to a level that is acceptable to the patient and family. [5. MEASUREMENT & 6. QI]

16. Assess and manage the psychological reactions of patients and families (including stress, anticipatory grief, and coping) in a regular, ongoing fashion in order to address emotional and functional impairment and loss. [5. MEASUREMENT & 6. QI]

17. Develop and offer a grief and bereavement care plan to provide services to patients and families prior to and for at least 13 months after the death of the patient. [9. BEREAVEMENT]

4. Social aspects of care

18. Conduct regular patient and family care conferences with physicians and other appropriate members of the interdisciplinary team to provide information, to discuss goals of care, disease prognosis, and advance care planning and to offer support.

19. Develop and implement a comprehensive social care plan that addresses the social, practical, and legal needs of the patient and caregivers, including but not limited to relationships, communication, existing social and cultural networks, decision-making, work and school settings, finances, sexuality/intimacy, caregiver availability/stress, and access to medicines and equipment. [4. STAFFING]

5. Spiritual, religious, and existential aspects of care

20. Develop and document a plan based on an assessment of religious, spiritual, and existential concerns using a structured instrument, and integrate the information obtained from the assessment into the palliative care plan. [4. STAFFING]

21. Provide information about the availability of spiritual care services, and make spiritual care available either through organizational spiritual care counseling or through the patient’s own clergy relationships. [4. STAFFING]

22. Specialized palliative and hospice care teams should include spiritual care professionals appropriately trained and certified in palliative care. [4. STAFFING]

23. Specialized palliative and hospice spiritual care professionals should build partnerships with community clergy and provide education and counseling related to EOL care. [4. STAFFING]

6. Cultural aspects of care

24. Incorporate cultural assessment as a component of comprehensive palliative and hospice care assessment, including but not limited to locus of decision-making, preferences regarding disclosure of information, truth-telling and decision-making, dietary preferences, language, family communication, desire for support measures such as palliative therapies and complementary and alternative medicine, perspectives on death, suffering, and grieving, and funeral/burial rituals.

25. Provide professional interpreter services and culturally sensitive materials in the patient’s and family’s preferred language.

7. Care of the imminently dying patient

26. Recognize and document the transition to the active dying phase, and communicate to the patient, family, and staff the expectation of imminent death.

27. Educate the family on a timely basis regarding the signs and symptoms of imminent death in an age-appropriate, developmentally appropriate, and culturally appropriate manner.

28. As part of the ongoing care planning process, routinely ascertain and document patient and family wishes about the care setting for the site of death, and fulfill patient and family preferences when possible. [11. CONTINUITY OF CARE]

29. Provide adequate dosage of analgesics and sedatives as appropriate to achieve patient comfort during the active dying phase, and address concerns and fears about using narcotics and of analgesics hastening death.

30. Treat the body after death with respect according to the cultural and religious practices of the family and in accordance with local law. [9. BEREAVEMENT]

31. Facilitate effective grieving by implementing in a timely manner a bereavement care plan after the patient’s death, when the family remains the focus of care. [9. BEREAVEMENT]

8. Ethical and legal aspects of care

32. Document the designated surrogate/decision maker in accordance with state law for every patient in primary, acute, and long-term care and in palliative and hospice care.

33. Document the patient/surrogate preferences for goals of care, treatment options, and setting of care at first assessment and at frequent intervals as conditions change.

34. Convert the patient treatment goals into medical orders, and ensure that the information is transferable and applicable across care settings, including long-term care, emergency medical services, and hospital care, through a program such as the Physician Orders for Life-Sustaining Treatment (POLST) program.

35. Make advance directives and surrogacy designations available across care settings, while protecting patient privacy and adherence to HIPAA regulations, for example, by using Internet-based registries or electronic personal health records.

36. Develop healthcare and community collaborations to promote advance care planning and the completion of advance directives for all individuals, for example, the Respecting Choices and Community Conversations on Compassionate Care programs.

37. Establish or have access to ethics committees or ethics consultation across care settings to address ethical conflicts at the end of life.

38. For minors with decision-making capacity, document the child’s views and preferences for medical care, including assent for treatment, and give them appropriate weight in decision-making. Make appropriate professional staff members available to both the child and the adult decision-maker for consultation and intervention when the child’s wishes differ from those of the adult decision maker.

* Boldface entries refer to corresponding domain from “Operational Features for Hospital Palliative Care Programs: Consensus Recommendations,” Weissman and Meier (2008), reference 65.

National Quality Forum

In 2007, in response to a need for national quality standards, the NQF released a document listing “preferred practices.”63 The NQF collaborated with the NCP in developing these 38 “best practices” or performance measures, which are organized under the NCP eight domains of care (Table 3.2). The practices are evidence-based or endorsed by expert consensus and apply to hospice and palliative care services across all care settings.

The NQF is a nonprofit, public-private partnership organization whose mission is to develop ways to improve the quality of US healthcare. The NQF has representation from national, state, regional, and local organizations representing consumers, public and private insurers, employers, professionals, health plans, accrediting bodies, labor unions, and other organizations representing healthcare research and quality improvement. They rely on or use consensus-building processes to develop national standards for measurement and public reporting of healthcare performance that is safe, timely, beneficial, patient-centered, equitable, and efficient. These standards have served in other areas of care as a method to link performance with reimbursement.

The NQF used the following definition of palliative care to develop the practices: “Palliative care is both a philosophy of care and an organized, highly structured system for delivering care. The goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies. Palliative care expands traditional disease-model medical treatments to include the goals of enhancing quality of life for patients and family, optimizing function, helping with decision making, and providing opportunities for personal growth.”66

Center to Advance Palliative Care

One of the major efforts to improve HBPC programs in the United States is led by the CAPC. Originally formed and funded by a 4-year grant from the Robert Wood Johnson Foundation in 2000, the national center was established at Mount Sinai School of Medicine in New York City. The Aetna Foundation, the Brookdale Foundation, the JEHT Foundation, and the John A. Hartford Foundation also provide support. The Center has a mission to make available to hospitals and health systems nationwide information on how to establish high-quality palliative care services.

The CAPC assists hospitals with the planning, development, and implementation of HBPC programs. In addition to assisting hospitals and other health systems in program development, CAPC facilitates collaboration among hospitals, hospices, and nursing homes; promotes educational initiatives in palliative care; and encourages growth and development of new and innovative mechanisms for financing palliative care programs.82,83,84 More recently, they have collaborated on the development of a strong evidence base and palliative care research with the National Palliative Care Research Center (NPCRC, described later in this chapter).

The CAPC has developed six palliative care leadership centers (PCLCs) to assist organizations that wish to learn the practical aspects of developing a palliative care program. The six organizations are Fairview Health Services, Minneapolis, Minnesota; Massey Cancer Center of Virginia Commonwealth University Medical Center, Richmond; Medical College of Wisconsin, Milwaukee; Mount Carmel Health System, Columbus, Ohio; Palliative Care Center of the Bluegrass, Lexington, Kentucky; and University of California, San Francisco. Each represents a different type of healthcare system and palliative care delivery model. They serve as exemplary organizations offering site visits, hands-on training, and technical assistance to support development of palliative care programs nationwide. Further information regarding the PCLCs can be found on the CAPC website (http://www.capc.org).

Building on the work of the NCP and NQF, in 2008 a consensus panel of CAPC staff, consultants, and PCLC faculty convened to determine which operational details were essential for program sustainability and growth for HBPC. They identified “must have” and “should have” elements that are arranged under 12 domains.67 Each of these activities is described further in Figures 3.3a, 3.3b, 3.3c.

The National Palliative Care Research Center

The mission of the NPCRC is to improve care for patients with serious illness and address the needs of their families by promoting palliative care research. In partnership with the CAPC, the NPCRC aims to rapidly translate these findings into clinical practice. The NPCRC uses three mechanisms to accomplish its aims:

  • Establish priorities for palliative care research;

  • Develop a new generation of researchers in palliative care;

  • Coordinate and support studies focused on improving care for patients and families living with serious illness.

The NPCRC, located in New York City, receives direction and technical assistance from the Mount Sinai School of Medicine. Prior to the establishment of the NPCRC, there was no organizing force promoting and facilitating the conduct of palliative care research. Because departments or divisions of palliative medicine do not yet exist in most medical schools, palliative care research is conducted by a small number of highly successful investigators working in isolation at a limited number of universities and clinical settings in the United States.

The NPCRC provides an administrative home to promote intellectual exchange, sharing of resources (e.g., biostatisticians), and access to data from ongoing studies to plan and support new research. Furthermore, the Center takes a collaborative approach to establishing its funding priorities. As such, it is a key force in the development of an evidence base from which standards of HBPC can be developed and measured. (For more information about its activities, see http://www.npcrc.org.)

The Joint Commission

The Joint Commission is one of the paramount accreditation organizations for hospitals and other healthcare organizations. Its purpose is to continuously improve the safety and quality of care provided to the public. The Joint Commission is an independent, not-for-profit organization, and perhaps its most important benefit is that TJC-accredited organizations make a commitment to continuous improvement in patient care. During an accreditation survey, TJC evaluates a group’s performance by using a set of standards that cross eight functional areas: (1) rights, responsibilities, and ethics; (2) continuum of care; (3) education and communication; (4) health promotion and disease prevention; (5) leadership; (6) management of human resources; (7) management of information; and (8) improving network performance.68,69

In 2004, a specific palliative care focus was introduced within two standards: (1) rights, responsibilities, and ethics and (2) the provision of care, treatment, and services. The goal of the ethics, rights, and responsibilities standard is to improve outcomes by recognizing and respecting the rights of each patient and working in an ethical manner. Care, treatment, and services are to be provided in ways that respect the person and foster dignity. The performance standard states that a patient’s family should be involved in the care, treatment, and services if the patient desires. Care, treatment, and services are provided through ongoing assessments of care; meeting the patient’s needs; and either successfully discharging the patient or providing referral or transfer of the patient for continuing care.68 More detailed information is available by contacting TJC or visiting their website at http://www.jcrinc.com.

These standards incorporated a stronger emphasis on palliative care practices within organizations. Hence, organizations are being held accountable for the manner in which they provide appropriate palliative care. It is in the public’s best interest that TJC requires organizations to adhere to these provisions for a successful accreditation. In 2008, a process to develop specific “Certification for Palliative Care Programs” was begun, and in 2011 TJC’s Advanced Certification Program for Palliative Care was launched: The standards for palliative care certification are built on the NCP’s Clinical Practice Guidelines for Quality Palliative Care and the NQF’s National Framework and Preferred Practices for Palliative and Hospice Care Quality. Standards and expectations were developed using experts in palliative care and key stakeholder organizations. The standards are published in the Palliative Care Certification Manual.

Chapters address the following issues:

  • Program management

  • Provision of care, treatment, and services

  • Information management

  • Performance improvement

To be eligible for Advanced Certification for Palliative Care, a palliative care program must:

  • Be provided within a TJC-accredited hospital. All types of hospitals are eligible, including children’s hospitals and long-term acute care hospitals. A dedicated unit or dedicated beds are not required.

  • Provide the full range of palliative care services to hospitalized patients 24 hours per day, 7 days per week.

    • Programs must have team members available to answer phone calls nights/weekend and the ability to come to the hospital to see patients 24/7 when necessary to meet patient/family needs.

    • Programs must be able to provide the same level of palliative care services during nights/weekends as during normal weekday hours.

    • Programs are not required to have palliative care team members physically present in the hospital 24/7.

  • Have served a minimum of 10 patients and have at least one active patient at the time of the initial TJC on-site review. Hospice patients are eligible for inclusion in the minimum patient count only if they were receiving inpatient palliative care from the program prior to transitioning to hospice care. These patients may be selected for tracer activity during the on-site review with the reviewer focusing on the episode of inpatient palliative care closest to the hospice transition.

  • Use a standardized method of delivering clinical care based on clinical practice guidelines and/or evidence-based practice.

  • Direct and coordinate the provision of palliative care, treatment, and services for the program patients (that is, write orders, direct or coordinate activities of the patient care team, and influence composition of the patient care team).

  • Follow an organized approach supported by an interdisciplinary team of health professionals.

  • Use performance measurement to improve its performance over time. Four months of performance measure data must be available at the time of the initial on-site certification review. At least two of the four measures must be clinical measures related to or identified in practice guidelines for the program. Measures selected by the program or service should be evidence-based, relevant, valid, and reliable. At this time, TJC is not defining the specific measures that are implemented; the emphasis is on the use of performance measures for improving palliative care services.

  • Updates on TJC progress on standard development can be obtained from TJC website under “certification programs”67: http://www.jointcommission.org/certification/palliative_care.aspx.

Veterans Health Administration initiatives

The US Department of Veterans Affairs (VA) healthcare system has shown leadership in improving palliative and EOL care in their hospitals through multiple initiatives that have been designed or implemented since the early 1990s. In 1992, Secretary Jesse Brown mandated that VA medical centers (VAMCs) establish hospice consultation teams to respond to the complex palliative care needs of patients with advanced disease. The VA provided training for team members during 1992 and 1993. One team reported success in pain and cost reduction while also undertaking significant institution-wide improvements through education of nurses and house staff and making pain management resources available.70

In 1997, the VA began an intensive, system-wide, continuous quality improvement (CQI) initiative to improve pain management. This endeavor resulted from a 1997 survey that found both acute and chronic pain management services to be inconsistent, inaccessible, and nonuniform throughout the system. Two major thrusts formed the basis of the initiative: issuing a system-wide mandate and forming a permanent National Pain Advisory Committee to provide direction and encouragement to the development of the program. Thus, this initiative incorporated two essential elements found in all successful system-wide improvement strategies: an influential champion at the highest level of the organization and a mandate for organizational commitment to this activity. The charge document offered a variety of suggestions for system improvement: making pain more visible by enhancing current measurement and reporting methods (using the “Fifth Vital Sign” approach in all patient contacts in the system); increasing access to pain therapy and increasing professional education about pain; adopting the Agency for Health Care Policy and Research and American Pain Society guidelines for pain management; pursuing research on pain therapies for veterans; distributing and sharing pain management protocols via a central clearinghouse; and exploring methods to maintain cost-effective pain therapy.

Also in 1997, the VA incorporated a palliative care measure in the performance criteria of its regional directors. In this program, performance of the directors is evaluated based on the number of charts that contain information about veterans’ preferences regarding various palliative care indicators.70,72

In 1998, the Robert Wood Johnson Foundation Last Acts program created a Clinical Palliative Care Faculty leadership program and awarded a 2-year grant to promote development of 30 faculty fellows from VA-affiliated internal medicine training programs. Their goal was to develop curricula to train residents in the care of dying patients, to integrate relevant content into the curricula of residency training programs, and to add internal medicine faculty leaders and innovators to the field of palliative medicine.

In 2001, the VA Hospice and Palliative Care initiative began. This was a two-phase initiative to improve EOL care for veterans. Phase 1 of the project was funded in part by the NHPCO and the Center for Advanced Illness Coordinated Care. This phase of the initiative was designed to accelerate access to hospice and palliative care for veterans. A major product of the program was the Hospice-Veteran Partnership Toolkit. It also created 2.5 full-time equivalent employee positions in geriatrics and extended care to be used for hospice and palliative care presence in the VA system.

In 2004, phase 2 of the project was launched. It was funded in part by Rallying Points and the NHPCO. It built on the success of phase 1 and developed a Hospice-VA Partnership in every state to build an enduring infrastructure for the Accelerated Administrative and Clinical Training Program. In a statement made in 2002 regarding the VA national initiatives, the VA made a clear commitment to improving hospice and palliative care for their patients. The Geriatrics and Long Term Care strategic plan states,70 “All VAMCs will be required to have designated inpatient beds for hospice and palliative care, or access to these services in the community, and an active hospice and palliative care team for consult, care and placement.” Funding continues to be designated to build palliative care consult teams at every facility, to fund new PCUs, and to enhance existing PCUs. For example, in 2009, the New England Network of VAs received awards for three new PCUs and enhancement funding for two existing units. Additional national efforts include partnerships with CAPC, HPNA, NHPCO, and EPEC and ELNEC to provide veteran-specific palliative and EOL education.

As the services have grown, the VA has also taken a leadership role in evaluating these services through the use of the Family Assessment of Treatment at End-of-life (FATE) tool.72,73 This 32-item tool assesses family members’ impressions of care received by the deceased veteran in the last month of life. It includes topics such as well-being and dignity, information and communication, respect for treatment preferences, emotional and spiritual support, management of symptoms, care around the time of death, access to outpatient services, and access to benefits and services after the patient’s death.73 To date this tool has demonstrated improved outcomes at the end of life (as judged by the family member) in those veterans who received specialized palliative care consultations.71 As a result of these initiatives, nearly 50% of veterans dying in VA facilities received the services of a palliative care team.74 Together, these initiatives address the need for improvement on multiple fronts and create a momentum in the VA system that can set an example for other large hospital-based systems of care. Also please see chapter 43 on veterans.

Professional societies contribute to palliative care development

Multiple professional societies have made contributions to the development of HBPC generalized or specialty population-specific palliative care standards, guidelines, or consensus statements by raising professional and public awareness of the unique issues of palliative care. A few selected organizations and their initiatives are described in this section.

National Hospice and Palliative Care Organization

The NHPCO was founded in 1978 as the National Hospice Organization. The organization changed its name in February 2000 to include palliative care. Many hospice care programs added palliative care to their names to reflect the range of care and services they provide, as hospice care and palliative care share the same core values and philosophies.

According to its website, the NHPCO is the largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. The NHPCO is committed to improving EOL care and expanding access to hospice care with the goal of profoundly enhancing quality of life for people dying in America and their loved ones. The NHPCO advocates for the terminally ill and their families. It also develops public and professional educational programs and materials to enhance understanding and availability of hospice and palliative care; convenes frequent meetings and symposia on emerging issues; provides technical informational resources to its membership; conducts research; monitors congressional and regulatory activities; and works closely with other organizations that share an interest in EOL care.

Hospice and Palliative Nurses Association

The Hospice Nurses Association was incorporated in 1987 to establish a network and support for nurses in this specialty. In 1998, the organization formally added palliative care to its mission to recognize the needs of nurses working in palliative care settings separate from hospice. The HPNA has become the nationally recognized organization providing resources and support for advanced practice nurses, registered nurses, licensed practical nurses, and nursing assistants who care for people with life-limiting and terminal illness. As such, to guide best practices they have developed a number of position statements and standards that are available to members and nonmembers on a variety of topics.

Processes for providing hbpc

While HBPC programs are increasing in number, many organizations are still at the stage of contemplating enhancing palliative resources or developing a program. Such an endeavor requires careful planning, as these programs are not “one size fits all.” Patience, persistence, and consensus building are key to successful program development.20,21,22,23,24,25,26,27,28 As described earlier, the CAPC has taken a leadership role in assisting organizations of all types to build a successful program that is suited to their unique patient population, resources, and organizational culture.

Particular to integrating palliative care principles into cancer centers through a multiyear grant, the City of Hope developed the Disseminating End of Life Education to Cancer Centers (DELEtCC).75 In this multiyear project, 2-person teams attended a 3-day workshop conducted by nationally recognized expert faculty to focus on best practices in palliative oncology care. The teams received additional follow-up support and assistance to help ensure successful program implementation. In all, 400 participants from 199 different cancer programs/institutions from 42 states attended one of the four programs.

A complete primer on developing a HBPC program is beyond the scope of this chapter; however, some of the most important care processes are described in this section. Those wishing more complete information are referred to the excellent resources mentioned earlier in the chapter.

Process of program development

Regardless of organizational type, the first step in developing a HBPC program is to perform a system assessment or “organizational scan” to identify existing organizational strengths, resources, potential partnerships, and collaborators.19 A task force or team of interested clinicians, administrators, and possibly consumers might be a good start. Examples of possible existing resources include clinicians from all disciplines with interest and training in palliative care, existing relationships with hospice, case management, discharge planners, and hospital chaplaincy programs. The needs assessment should determine the hospital focus on length of stay, ventilator days and pharmacy/ancillary costs per day, palliative care leadership based on personal experience or professional interest, pre-existing pain programs, and trustee/philanthropic interest in, and support for, palliative care.

After the system assessment is performed, the second step is to identify areas of need within the organization to highlight where palliative care programs can make the greatest contribution. Many institutions have easy access to data that can help to “build the case” for palliative care. Selling the idea of palliative care to an institution or gaining institutional support is easier when benefits (such as cost savings, efficiency, and improved clinical care) can be shown. Common areas of need that have shown improvement as a result of HBPC programs include pain and symptom management, patient and family satisfaction, nurse retention and satisfaction, bed and ICU capacity, and length of stay. Other outcomes may include pharmacy costs, establishment and strengthening of hospice partnerships, and improving fragmented subspecialty care.

To assist organizations with the complexities of the planning process, the CAPC provides a systems assessment tool and a needs assessment checklist, which can be found at http://www.capc.org/building-a-hospital-based-palliative-care-program/designing/system-assessment.

The process of providing palliative care: developing an interdisciplinary team

The holistic process of providing palliative care to patients and their families is rarely accomplished by one individual or discipline. The IDT is the foundation of the HBPC service and in many ways is unique in contrast to how medical care is traditionally provided. The core IDT typically consists of specially trained palliative care professionals, including physicians, nurses at all levels of training (registered nurses, nursing assistants, and advanced practice nurses [APNs]), social workers, pharmacists, spiritual care counselors, healing arts/complementary practitioners, hospice representatives, and volunteers.85,86,87,88,89,90

Identifying which team member(s) can best serve a patient’s needs is a key part of the initial assessment.91,92,93,94,95 One clinician may be designated to receive initial consults and organize distribution of work for the day. A team may decide that all new consults are seen first by a medical provider: either the physician or the APN. The physician also serves as the medical resource person for other team members and supervises physician learners. Advanced practice nurses may work independently or collaboratively with the attending physician to conduct initial consultations. If resources allow, this may be done together; however, workload and resources may dictate that new consults are divided among the medical providers.

In organizations that support learners, after a period of supervision and observation, it may be that the learner (e.g., fellow, resident, medical or nursing student) conducts an initial chart review and patient and/or family interview and then presents the patient to the physician or APN, after which the pair will revisit the patient. At all times the team should be aware of the patient’s energy level and the learner’s level of expertise in deciding whether this format is appropriate. During the initial consult psycho/social/spiritual needs are identified and other team members are integrated into the plan of care.78

A palliative-care-certified physician and/or APN may be responsible for the initial assessment and day-to-day medical care of most patients. However, depending on the patient’s needs, another member of the team might take the lead in care. For example, if the patient’s primary concern is physical, then a medical provider may direct the plan of care. If the patient’s primary concern is existential in nature, the spiritual care provider may take the lead. Alternatively, if the patient’s primary need is for family support, the social worker may be the most active care provider. Healing arts and complementary medicine practitioners and volunteers are also integral members of the IDT.

Healing arts/complementary medicine practitioners are providers from a variety of backgrounds who can provide massage, energy work, or instruction in guided imagery or meditation. Palliative care volunteers are specifically trained to see palliative care patients and are overseen by a volunteer coordinator. They provide presence, active listening, and company for patients and families. Although some tasks are seemingly small, such as reading, playing cards, or running small errands, these are often essential aspects of care from the patient/family perspective.

Pharmacists, healing arts/complementary therapy clinicians, hospice liaisons, and volunteers may or may not be part of the core team in some organizations. For example, even though medication needs may be complex, few teams have a dedicated pharmacist who could round daily with the team. Hence, it may be more realistic to have a pharmacist present during regularly scheduled IDT meetings. Similarly, local hospice liaisons, healing arts/complementary therapy practitioners, and others may only be available to meet with a team weekly.

Nonclinical members of the team including administrative, financial, or practice managers and secretarial support are responsible for holding the IDT together by providing the supportive infrastructure within which the team can operate. These key team members may serve as representatives or liaisons on important institutional committees. Another important function of program administrators is the collection of data for clinical and fiscal evaluation for quality improvement, program justification to the institution, or research. The receptionist/secretarial support may be the first contact for patients and referring clinicians and can become the “face or voice of the program.” Individuals selected for these positions should be skilled, patient, and caring to enable them to deal with the stress of people in crisis and urgency of consultations.

After an initial consultation, depending on the patients’ needs, they may continue to be seen in follow-up throughout their hospitalization. Some patients may have acute needs (such as uncontrolled pain) that may require them to be seen more than once daily. Other patients may be seen several times a week or weekly or until the goal of the initial consultation is achieved. Some patients may be visited by the medical provider, the spiritual care provider, the healing arts provider, and a volunteer—all on the same day. In the earlier case of Mr. X, visits from the palliative medicine provider and the spiritual care provider, among others, were frequent and provided the family with constant contact and opportunities to discuss concerns and feelings or the simple comfort of another human presence.

Processes to support interdisciplinary team communication

Communication may be the most challenging and crucial aspect of providing palliative care.78,79,80,81 Intrateam communications that are regular and efficient will allow for seamless care to be delivered. Teams will likely explore a variety of mechanisms to achieve optimal communication about not only issues of patient care but also team function. The purpose of regular patient-care-related team meetings is to allow all disciplines to contribute to the development and implementation of comprehensive care plans that reflect the values, preferences, goals, and needs of each individual patient.

Practicing as a true IDT requires significant and ongoing intention and effort. Traditionally the medical model has driven healthcare delivery and, to a large extent, still does. However, in a holistic care model of palliative care, the psycho/social/spiritual care providers should have equal authority and input; for many clinicians, this represents a change in practice. Teams should be mindful of tendencies to become “efficient” that can sometimes lead to a focus only on the medical or physical aspects of care.

Minimally, a weekly face-to-face meeting, in which all IDT members gather, is considered an essential element of team function in order to provide high-quality, coordinated care. During the IDT meeting, active patients are presented and all team members have an opportunity to contribute their expertise in the development of the plan of care. In some cases, weekly meetings may not be enough and a team may choose to meet more frequently. These meetings are also a place to role model for the learners healthy and respectful team interactions that recognize the value and expertise of each team member.

Performing the palliative care consult

A palliative care consult can be initiated in a variety of different ways. Some services (or reimbursement mechanisms) require that a physician initiate the consult, rather than a nurse or other care provider. If someone other than the attending physician requests a consult on a hospitalized patient, it would still be important to include the attending (or primary care) physician in the consult. Ideally a provider-to-provider conversation prior to consultation would review and identify the priority issues. Most services do this before seeing the patient.

When is a consult made?

Consultations should be initiated any time a person with life-limiting illness has physical, psychological, social, or spiritual needs.81 Palliative care programs began for many reasons, but one of them was to meet the EOL care planning and symptomatic needs of patients who are not yet hospice eligible, either because of life expectancy (greater than 6 months) or because they are receiving active disease-modifying treatment. Palliative care referrals do not hinge on the “less than 6 months” life expectancy as is often the case for hospice referrals. Referring patients with life-limiting illness early is one of the benefits of having a palliative care service.

Some organizations have built-in consult triggers, protocols, or algorithms for specific life-limiting illnesses in which consults are recommended at diagnosis.82,83,84 “Automatic referrals” would be generated for all patients who are newly diagnosed with certain types of life-limiting cancers (e.g., pancreatic, brain, stage IIIB and greater lung, liver, etc.).30,31,32 Figure 3.4 provides an example of a “trigger tool” used by one of the authors in her practice; this tool was piloted in various settings across the medical center including the adult ICU, inpatient oncology, and general medical surgical floors. Noncancer patient populations that maybe considered for automatic referrals are those with ALS, heart failure, dialysis-dependent renal failure, and those who, regardless of diagnosis, experience frequent hospitalizations. These patient populations are typically highly in need of palliative care services. Careful planning and close collaboration with colleagues is necessary to establish a process for automatic referrals that ensures that the patients that are most in need of palliative care services have them “early and often.” Some automatically scheduled palliative care consultations may occur in the outpatient setting or clinic, while some organizations have hospital “triggers” that may alert that primary team that a patient may benefit from these specialized services. Over time, in HBPC programs with high community visibility and/or marketing efforts, it may be common to have patients or family members self-refer.


Figure 3.4 GMC palliative and supportive medicine consult tool and palliative and supportive rapid response consult tool. Developed by Neil Ellison, MD, and Patricia Maani-Fogelman, DNP, Geisinger health system.

Figure 3.4 GMC palliative and supportive medicine consult tool and palliative and supportive rapid response consult tool. Developed by Neil Ellison, MD, and Patricia Maani-Fogelman, DNP, Geisinger health system.

Figure 3.4 GMC palliative and supportive medicine consult tool and palliative and supportive rapid response consult tool. Developed by Neil Ellison, MD, and Patricia Maani-Fogelman, DNP, Geisinger health system.

What is included in the initial palliative care consultation?

The initial consult will lay the foundation for all further interactions with the patient and family. In addition to specialty expertise, the palliative care team may offer the unique resources of presence and time. Much has been written about the importance of setting during the initial consult.6,92 Making sure there is adequate time to see the patient and family is crucial. If time restrictions are unavoidable, state these constraints at the outset of the consultation. Sitting down during the consultation and making sure everyone who is participating in the consult has a seat is important (see chapter 5 on communication).79 Depending on the resources available and the composition of the team, an initial consult can occur almost anywhere. For inpatient consults, it is often in the patient’s room; for outpatient consults, it may be in the clinic exam room. If resources permit, consults can also be done at patient’s homes or in local care facilities. The main concern is an environment that allows for privacy and quiet—often difficult to find in most acute care hospitals.

Patients are generally unfamiliar with the term “palliative care” and/or associate it with hospice care or death. Patients who are early in their disease process may wonder why a consult to this service has been initiated. Establishing the patients’ level of understanding and explaining the role and focus of the palliative care team is an important starting point to the consultation. Often patients and families may need reassurance that they are not being “abandoned” by their primary team. Explaining that the palliative care team consults and provides expert guidance to the primary team but does not replace them is important. Providing a clear and confident explanation of services will help everyone know what to expect. Providing a brochure or some written information about what palliative care is and who the team members are can be helpful. Assessing the patient/family knowledge and understanding their current situation is the next step. Healthcare providers often believe that they have done a complete and thorough job in explanations; however, patients are under stress and may need multiple explanations in very simple language before they fully understand their situation.

Next, a complete and thorough assessment is begun. This should include a review of symptoms and physical complaints, as well as an assessment of psychological, emotional, social, and spiritual concerns. Eliciting a clear picture of the patient’s social support structure and family relationships is essential, as the contextual issues will often affect, if not drive, decision-making. Exploring what gives meaning to patients’ lives and who they are as individuals will help direct care. Do not hesitate to humanize the medical encounter by taking the time to get to know the patient as a whole person—their hobbies, passions in life, the meaning they attribute to work, and family are all important aspects of learning about a new individual. Assessing and attending to cultural preferences will enhance communication and increase the effectiveness of interventions.

Other areas that are important to assess are goals of care, advance care planning wishes, and treatment decision-making style. Due to time constraints and sometimes lack of skill, these complex issues are often overlooked or only superficially explored by the primary team. Yet they are some of the most important pieces of the puzzle when constructing a plan of care. It is important to find out what the patient/family is hoping for from treatment interventions. This is where the role of nursing advocacy comes in: As the individuals spending the greatest amount of time at the bedside, nurses can often identify the patient/family personal preferences and goals, ascertaining the answers to questions such as “What does getting better mean to you?” Often this issue is ignored when in fact it needs more time and consideration. To the medical team, “getting better” may mean the patient is able to leave the hospital; to the patient it may mean a full recovery or expectation of return to a high level of functionality. The clinical implications of a new disease or advanced illness are not always clear to the patient or family, requiring further review and discussion. Exploring, on the first visit, whether the patient and family have ever considered and/or completed advance directives may elucidate this. Completing advance directives is a structured way of looking at goals of care and what is meaningful when making treatment decisions. Some programs have developed standardized templates that remind the team (and the referring provider) of the important and comprehensive domains of care and intervention that are included in the consultation.

Who should be present at an initial consultation?

While there are times that it is appropriate to conduct a consult without the patient present (e.g., the patient is in coma)—in most cases every effort is made to include the patient. The patient should decide which support members and/or family they want to include. There may be one or more members of the palliative care team present. A member from the referring team may want to attend—but this is less common on initial consult. If a focused family meeting is arranged it is imperative that the referring team be present so all decision makers are in the room together. Family meetings are a large part of palliative care interventions. During the initial consult it may be clear that a family meeting is needed to proceed with discussion about care planning, and on occasion such a meeting may be simultaneously organized as a part of the initial consult. Direct inquiry with the patient will also identify key family/support members desired for any discussions, and efforts should be undertaken to include those identified whenever possible. Conducting a family meeting takes skill and planning—in today’s hectic world it is often difficult to coordinate multiple schedules or for family members to reach the hospital due to distance and other concerns. In these instances the use of teleconferencing has become especially helpful. Resources are available to assist inexperienced team members with the important process of organizing and conducting a family meeting.85

Continuing the care: day-to-day operations

Patients with serious illness may follow many different paths. Table 3.3 illustrates paths that may be typical in the current “care as usual” for a seriously ill patient, compared with an “ideal” or expected pathway in a healthcare system with an HBPC program. Numerous institutions have studied their processes of care and have created clinical pathways that can help standardize procedures and reduce the variation of care experienced by terminally ill or symptomatic palliative care patients as they traverse the complex healthcare system.86 Usual components include attention to patient symptoms, as well as family needs at system entry and throughout the course of stay until discharge. Assigning time frames to address needs helps in monitoring progress and tracking outcomes that have been met as well as those that continue to need attention.

Table 3.3 How hbpc programs might influence “care as usual” for persons with life-limiting illness

Current process of care

Care process with an integrated HBPC

Patient with known life-limiting, chronic illness arrives in emergency department for relief of uncontrolled disease-related symptoms.

Patient with known life-limiting, chronic illness meets criteria and is referred for initial outpatient Palliative Care Team (PCT) Consultation and standardized holistic assessment

  • PCT documents and communicates consultation to patient/family & referring team

  • Advance directives documents completed including patient’s preference for resuscitation status

  • Prospective symptom management plan identified

  • Community-based resources in place

  • Regular PCT follow-up planned in conjunction with other medical appointments when possible (including MSW, chaplain, healing arts providers as appropriate).

ED workup and hospital admission to medical unit.

Patient develops disease-related symptoms, which are managed by PCT staff by phone.

Inpatient/hospitalist medical team continues diagnostic workup.

Patient requires brief, planned hospital admit for symptom relief procedure; continuity of care ensured by preplanned inpatient PCT follow-up over hospitalization.

Patient undergoes tests and procedures. Symptom management per medical team.

Symptoms are assessed using standardized tool & documented. Evidence-based symptom treatment is implemented and symptoms rapidly managed with standardized symptom assessment/management algorithm or pathway. (If patient is approaching EOL and cannot or does not wish to die outside of hospital then Comfort Measures standardized orders are implemented).

Patient’s disease process is not able to be reversed. Patient develops acute deterioration and is transferred to the intensive care unit on ventilator.

Discharge plan coordinated by inpatient PCT for patient to have home care (or hospice care) as needed.

After prolonged stay, patient dies in hospital.

Patient dies in preferred site of death. Bereavement care offered to family after the death.

Although published guidelines and standards may offer similar suggestions, the road map format of clinical pathways identifies practical and accountable mechanisms to keep patient care moving in the direction of specific identified outcomes. Some pathway forms allow for documentation of variation from the designated path. Analysis of several instances of variation might alert a care team about a potential system “defect” in need of improvement.

Many institutions have implemented standard orders or evidence-based algorithms to guide various aspects of care pertinent to EOL situations. Some of these include limitations of certain types of therapies such as CPR and blood pressure medications. In addition, preprinted order sheets that outline management of symptoms and side effects such as nausea, constipation, and pain are making it easier for physicians and trainees to reproduce comprehensive plans that do not vary because of individual opinion. These order forms can be valuable teaching tools in a setting of regularly changing care providers. Figure 3.5 shows a sample order sheet and the companion guidelines printed on the reverse for patients who are hospitalized and have a palliative focus of care. Certainly, important considerations in the development of such “recipes” for care include having broad, multidisciplinary, evidence-based input. The process of producing such documents is also potentially a care consensus and learning environment for many teams.


Figure 3.5 Comfort measures order sheet.

Figure 3.5 Comfort measures order sheet.

Figure 3.5 Comfort measures order sheet.

Includes guidelines for care and references for staff education on the back. Source: Dartmouth-Hitchcock Medical Center, June 2004. Used with permission.

Care pathways and orders also demonstrate what care is provided when a patient is no longer receiving curative care. In cases where curative care ceases, clinicians and patients may believe “there is nothing more to do.” Order sheets, algorithms, and care pathways are common in complex acute care situations. Using these same tools, palliative care can demonstrate the complex, aggressive care that can be directed at comfort. The patient and family can have confidence that everything will be done to provide pain management and relief of suffering. Nurses in particular can advocate through development of hospital policy, education, and individual practice for aggressive comfort care. The healthcare team must ensure that a positive approach—focusing on what can be done for patients with life-limiting illness and their families—is implemented. Pathways may go a long way toward reducing variation in care so that delays or unpredictable outcomes are avoided.103,105,112 At a macro level of cancer care, the National Comprehensive Cancer Network92 has published a care algorithm and extensively detailed “care standards” in its Palliative Care Clinical Guideline. This booklet is produced as a professional and patient guide and is available from http://nccn.org.

Documenting palliative care consultations

As in all aspects of healthcare delivery, documentation is the foundation for communicating with other providers, particularly across care settings. As a consultative service, including the primary care providers in the plan of care promotes collegiality and helps assure follow-through. Recommendations for symptom management, identification of goals of care, advance planning and resuscitation wishes, or emotional counseling and support are at the heart of the palliative care assessment and interventions.

An electronic medical record (EMR) may provide an immediate way to share information with all members of the care team. Pertinent members with whom the consult should be shared include the primary referral service (if the patient is inpatient), the primary care provider, and other specialties consulting on the patient. Providing a copy of the consultation note, electronically in real time, can assist with the timely communication and implementation of recommendations.

Documentation can also be a vehicle for education that should not be overlooked. Including specifics in the plan of care can help other providers learn aspects of palliative care. For example, breakthrough dosing for pain medications is often underdosed by the primary team. When addressing pain management in the palliative plan of care, noting the total daily opioid use and writing the details of the calculation (10%–20% of total daily need) in print can teach other providers how to prescribe adequate breakthrough medication in the future.

Finally, documenting goals of care, resuscitation wishes and advance care planning in a way that is visible to everyone is a challenge. Patients often complain that they have provided documents or information, such as an advance directive, but at the point of care the information is not easily located. As a quality improvement initiative, our institution created a visible tab embedded in the EMR for advance directives. In this system, important documents (advance directives and Do Not Resuscitate orders) are scanned into the record and are readily available. For patients who have verbally stated wishes but have not completed the official document, a clinician can complete a templated advance care planning note that carries the same force as an official form. This can be completed by any team member and can indicate the durable power of attorney as well as care wishes (e.g., resuscitation wishes, medically administered nutrition/hydration wishes, etc.). The templated notes and actual documents are all located in the same section of the EMR and are accessible to all providers (including in the Emergency Department and physician offices that are part of the medical center system).

Completing the process: transitions of care and continuity

The palliative care team must remember that they are the consultants and ultimately most patients will remain under the guidance of the primary provider. While some referring providers welcome aggressive assistance in care, others may prefer to accept or decline palliative care team recommendations. Talking a case over with the primary team is always preferable to leaving a note in the record.

Continuity is improved dramatically when there is an outpatient as well as an inpatient component of an HBPC. Our outpatient service is managed by a team of APNs and physician providers. All inpatients can be followed in the outpatient setting (when indicated). This provides an opportunity to reinforce or adjust recommendations made while the patient was hospitalized. It also provides an opportunity to explore complex emotional topics or decision-making.

For patients who do not return to the center, providing continuity is difficult. Sending the initial palliative care consult and pertinent notes to the receiving team (including the patient’s primary care provider or skilled nursing facility if applicable) is useful. Being open to phone calls or proactively placing a personal call to the receiving provider will help to build bridges to the community and encourage community providers to see the palliative care team as a resource.

Extending the reach of hospital-based palliative care: advance care planning

The Patient Self-Determination Act (PSDA) of 1991 required that hospitals and other organizations receiving Medicare or Medicaid funding provide written information to patients about their rights to make decisions to accept or refuse medical care.85,86 Further, it stipulated that advance directives, including living wills and appointment of a healthcare proxy, may be used to provide substituted judgment in the event of patients’ inability to speak for themselves regarding healthcare decisions. Although this legislation was designed to allow patients to have a durable mechanism to outline their preferences for certain types of treatments, for many years it had little impact on yielding improvements in EOL care.86 There are several reasons for this. First, not all patients actually choose to complete advance directives. Often, inexperienced personnel distribute the information without providing appropriate explanation of the documents, leading to lack of completion by patients. Even for patients who complete them, the forms may not be specific enough to address the situation in which patients later find themselves. Second, even when a patient has taken the time to thoughtfully complete a document, the healthcare provider may not be aware of it85,86 or the healthcare proxy may not interpret it as the patient intended.105

Staff of HBPC programs can play an important role in patient decision-making with each individual patient and within the larger healthcare system. At an individual patient level, consensus guidelines recommend that patients/families’ preferences for surrogate decision makers and treatment goals be documented at the initial assessment and whenever there is a change in the patients’ situation.86 However this task is not complete until the information is both documented in the medical record and shared with the primary team. In addition to documenting the presence of advance directives, for hospitalized patients these wishes must be translated into medical orders (e.g., completion of Do Not Resuscitate forms if the patient prefers not to have this life-sustaining treatment applied). Furthermore, documentation of these preferences should accompany patients when transitioning to other healthcare settings. Different states have laws about how these orders are documented and transferred among settings. Many states’ laws have provisions for patients at home who are dying and do not want to be resuscitated to use home labeling systems such as a “DNR bracelet,” sticker, or forms. Some states may have Physician Orders for Life-Sustaining Treatment (POLST) programs to identify ambulatory/outpatient wishes outside of the hospital. (More information on individual state efforts regarding POLST-type programs is available at http://www.ohsu.edu/ethics/polst/about/index.htm.)

Healthcare providers who are not focused on palliative care needs may not gather information about advance directives and patient treatment preferences as an automatic component of their health history (such as identifying and documenting allergies and medications). Therefore, it is not uncommon for providers to be unaware of the presence of the patient’s advance directive until the patient is in crisis. Such late awareness can result in patient’s making choices under duress that they might not otherwise have made. For example, if the patient experiencing respiratory distress is asked if he “would like everything done” to help him to breathe better—the answer is understandably “yes.” If the topic had been discussed earlier in his admission, he would have been provided with comprehensive information regarding his prognosis and probable course of illness, and multiple options for treating dyspnea at EOL (e.g., opioid and oxygen rather than intubation and ventilation). Meeting the patient and family’s preferences for EOL care requires advance care planning that occurs early in the course of illness, or preferably in the primary healthcare setting while people are well and healthy. Intensive healthcare provider education on communicating with patients about advance care planning, before a health crisis occurs, is an area where a HBPC program can have influence beyond the bedside of the individual patient.

The case study of Mr. X demonstrates the importance of early palliative care intervention so that advance directives and patient- and family-centered care can be delivered. The introduction of palliative care at the time of diagnosis allowed for appropriate and effective utilization of the palliative care services. When the patient is identified early in the course of illness, the palliative care team can act as a resource for advance care planning, goals of care discussions, bereavement support, pain and symptom management, and psychosocial issues. As the patient nears death, and the goal of care becomes focused more on comfort, the palliative care team will be a familiar member of the care team during a potentially stressful time.

Outcomes and their measurement: the role of quality improvement and research in hospital-based palliative care

Measurement of outcomes is vital to demonstrate quality and to maintain viability and growth of HBPC programs. Although the field is still developing, tools are beginning to emerge to measure care, assist with developing standards of care, and most importantly, bring individual and organizational transparency and accountability to the care that is being delivered. Documentation of less than excellent outcomes may result in the organizational tension needed for change to occur. Such motivation can stimulate improvement and motivation for both administrators and clinicians.

As described earlier in this chapter, a number of organizations such as the CAPC, NQF, and NCP have urged all programs to collect standardized measures across settings. In particular, the CAPC has taken the lead in providing technical assistance in this regard. Resources for business, clinical, quality management, and strategic and financial planning are available on the CAPC website, with link to the actual tools and instruments for measurement and planning of clinical care.

A number of efforts have been initiated to advance the measurement of palliative care outcomes. The Institute of Medicine issued a report in 2007, “Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs.”88 This report requested development of mechanisms to measure quality of care by organizations that are involved in developing and measuring standards of quality. In response, the American Society of Clinical Oncologists (ASCO), recognizing that oncologists had few reliable resources to assess and measure the quality of supportive care delivered in their practices, launched a health plan program developed by its Quality Oncology Practice Initiative (QOPI).49 Data are collected on a quarterly basis and, if desired, reported by ASCO to insurers. Measurement of data in this fashion not only impacts on the quality of care delivered within an individual program but also promotes evidence-based practices and standardization across settings.

Another national effort, led by the University HealthSystem Consortium (UHC), recommended collection of data for the purpose of academic benchmarking nationally.89,90 The UHC, comprising over 100 academic medical centers and nearly 200 of their affiliates, is an alliance of US Academic Medical Centers (AMCs), whose goal is to provide resources to support transformational change leading to clinical and operational excellence. Through the consensus of an expert panel and based on other published guidelines, the consortium developed 11 key performance measures and collected data from the 35 centers that agreed to participate—some had palliative care consultation services, others did not. The 11 measures included pain assessment, use of a pain rating scale, pain reduction, bowel regimen, dyspnea assessment and relief, comprehensive assessment, psychosocial assessment, patient/family meeting, documentation of discharge plan and arrangement for discharge services. They found significant variability across these centers, but identified five organizations that were found to be “better performers” overall. However, no organization reached the predetermined 90% benchmark on all parameters, while some hospitals achieved low or 0% achievement of some.89,90 Despite its limitations, this project demonstrated the importance of measurement of palliative care indicators.

As previously described, the NCP 8 domains and NQF 38 preferred practices are key resources for the development of measures to determine HBPC quality. Although voluntary, the preferred practices were intended to provide a standard of care for which measures could be developed for quality assessment. Other NQF guidelines have become the foundation for accreditation and reimbursement. It is the hope that this same outcome will occur in the palliative care preferred practices.

The CAPC website and a printed technical manual19 contain tools for measuring HBPC outcomes. When assisting an organization to establish a program, CAPC encourages the incorporation of clinical, financial, operational, and customer metrics.33 In 2008, the CAPC convened a consensus panel to discuss which operational metrics should be measured as programs “strive for quality, sustainability and growth” and which metrics can be used to “compare service utilization across settings.” The twelve domains of operational data that were agreed on may be used to compare service characteristics and impact within a program or between programs. The four categories of measurement to assure effectiveness and efficiency recommended by CAPC are (1) clinical (pain and symptom control) metrics, (2) program operational measures, (3) customer metrics (satisfaction surveys of patients, families and providers), and (4) financial metrics. Table 3.4 lists some examples of these measurement variables. Examples of actual tools to measure these characteristics are available on the CAPC website mentioned earlier.

Table 3.4 Metric categories

Metric domain

Examples

Operational

Patient demographics (diagnosis, age, gender, ethnicity) referring clinician, disposition, hospital length of stay

Clinical

Symptom scores, psychosocial symptom assessment

Customer (patient, family, referring clinicians)

Patient, family, referring clinician satisfaction surveys

Financial

Costs (pre- and post-HBPC consultation), inpatient palliative unit, net loss/gain for inpatient deaths

Source: Data from Weissman, Meier, and Spragens (2008), reference 33.

Every program should have a plan to measure and monitor its effect on the quality of patient care, ideally from program inception. Some measures will be useful for internal planning for staffing, need for program growth, and productivity goals. These same measures could then be compared to other programs as external benchmarks, especially for newer programs under development. Ultimately, the data collected can be used to assure that high quality palliative care is provided across organizations.33,65,90

Economic issues

Despite higher spending per individual on healthcare than any other country, over 50% of caregivers of Americans hospitalized with a life-threatening illness surveyed report suboptimal care.74 Over 1.5 million Americans die of chronic illness each year, and more than 70% of these are admitted to a hospital during the last 6 months of life.90,91,93 The number of people over age 85 will double to 10 million by the year 2030. Currently, 23% of Medicare patients with more than four chronic conditions account for 68% of all Medicare spending.3,93 As the population ages and technology advances, the potential for prolonged care with minimal improvement in quality of life and associated human suffering looms large. The cost to an overburdened healthcare system could be disastrous over the long term. Just because the technology exists does not mean it should be used for everyone. The Dartmouth Atlas of Health Care reported that 98% of Medicare decedents spent at least some time in a hospital in the year before death. And of this group, 15%–55% had at least one stay in a critical care unit in the 6 months before death.112

Palliative care has been demonstrated to lower costs for both hospitals and payers by reducing hospital lengths of stay as well as pharmacy and procedural costs. Morrison et al. conducted a retrospective study reviewing hospital costs for eight hospitals with established palliative care programs over a 2-year period. Considerable cost savings (cost avoidance) were demonstrated when matching patients who had palliative care team involvement were compared with those patients who did not.

Although it is not the goal of palliative care to reduce costs, several studies have demonstrated this to be the case.89,90,91,92,93,94 Reduction in costs by palliative care intervention may occur in multiple ways. Patients and their families are often stressed and burdened by a serious illness. Many times they are not clear about what to expect and may be experiencing the fragmentation of multiple specialty providers giving seemingly conflicting messages. Compounding this is the erroneous societal expectation that medicine is able to fix nearly any health challenge. It is no wonder that patients and families sometimes have unreasonable expectations and are unable to discern the larger picture when functional status is declining and treatment options offer fewer benefits to quality or quantity of life.

In HBPC clinicians may be able to provide the family with “the big picture” of the illness situation. As an “objective” coordinator, the palliative care provider is particularly skilled at summarizing all relevant information and assisting the patient to match treatments with their own personal values and preferences. In so doing, patients and families are better able to apply their personal wishes and goals to the care that is being offered. They may elect to decline certain diagnostics or invasive treatments in favor of those that will provide comfort. Some may choose to not escalate care or perhaps discontinue treatments that were previously initiated. In the setting of a prolonged critical care stay where treatments are no longer resulting in positive progress, a palliative care consult may result in deescalation of disease-modifying care in favor of increasing “low-tech” comfort care. Such changes in treatment can result in reducing suffering of the patient and family and, at times, can also result in significant cost avoidance. Consistent with criteria from the CAPC report card, the palliative care consult may “reduce unwanted, unnecessary and painful interventions.”23

In the less costly hospital care that occurs in the critical care unit, the palliative care team can assist patients and families to select medical treatments and care that are consistent with their values and preferences. When patients and families have a clear understanding of their prognosis, and realistic information about proposed procedures or treatments, they may wish to decline further hospital care and return home. In some situations when symptom relief procedures or family respite is indicated, palliative care involvement can facilitate timely occurrence of the needed procedures so that time in the hospital is minimized. Not only does this potentially reduce costs, but quality of care is also enhanced.89,90,91,92,93

In settings of seemingly futile care or conflict among healthcare providers, patients, and families or among healthcare providers, involvement of palliative care in conjunction with an ethics committee consultation may help achieve more rapid conflict resolution.48 Cost savings can be accomplished in indirect ways as well. When the palliative care team is involved, they can spend the time at the bedside necessary to manage pain and other symptoms. This is invaluable to an already overburdened primary treating team, who may be working with other patients who also have intensive care needs. Thus, quality of life and satisfaction for the patient and family as well as professional colleagues is enhanced. The palliative care team may also be invaluable in assisting with complex plans for discharge, coordinating care across settings, and enhancing communication between the treating team and the patient and their family.

Influencing institutional, state, and national policy

It is not enough to provide excellent, comprehensive care to just the patients that are referred for consultation. The truly effective HBPC program must seek out ways to influence care for all patients with life-limiting illness by developing an awareness and ability to influence healthcare policy within their institutions, and at a state or national level. The influence should begin within the larger organization in two main ways: (1) by developing policies, procedures, and practices that will guide care of all persons with life-limiting illness within the agency and any affiliates; and (2) by integrating palliative care education and competency standards into basic orientation and continuing (preferably mandatory) staff education. Examples of the former include development of consultation triggers, policies for advance care planning, limitations of life-sustaining treatments, “comfort measures,” withdrawal of mechanical ventilation, and standardized pain and symptom assessment and management. This type of influence will likely necessitate regular or ad hoc participation or leadership on institutional practice or ethics committees. Staff orientation has grown in sophistication such that “simulated” patients and learning labs are becoming standard mechanisms for learning basic care skills. Practicing skills of communicating bad news, holding family meetings, and discussing advance care planning are some possible activities that lend themselves to such environments. Similarly, most organizations hold staff accountable for mandatory CPR certification. It would seem reasonable to require mandatory “do not resuscitate” classes in which staff learns effective care to provide when patients are near death but will not be resuscitated. Other educational endeavors include annual presentations at other departments or affiliated agencies’ grand rounds on palliative care topics. Also holding annual regional palliative care conferences for professionals or the general public can bring attention to the program.

Acting locally at the state level in legislative or health policy forums can make a big difference in care of patients. Examples of vital work performed at the state level include crafting of advance directive documents and laws, expanding hospice coverage to Medicaid, opioid prescribing laws, and other practice issues. The NQF preferred practices include a recommendation to “develop health care and community collaborations to promote advance care planning and completion of advance directives for all individuals—for example, the Respecting Choices and Community Conversations on Compassionate Care programs.”20 Some states have palliative care or EOL task forces that make policy and legislative recommendations that will enhance care of the seriously ill. For example, in New Hampshire, legislation created an EOL task force in which palliative care clinicians helped revise advance care planning legislation (see http://www.healthynh.com/fhc/initiatives/performance/eol/endoflifecare.php). Expert input helped improve advance directives forms and incorporate APNs as providers who could write DNR orders among other improvements. Palliative care and survivorship were added as major initiatives to the State Cancer Plan, which mandates some palliative practices for organizations to strive for as well as potential designate grant funds for palliative care focused projects (see http://www.nhcancerplan.org).

In addition to supporting legislative initiatives to improve care, it is just as vital to monitor policy that could have a harmful effect on patient care. For example, overly restrictive prescribing policies can make it difficult for patients in pain to obtain sufficient opioids. Activism around restrictive policies may have direct impact on patients’ outcomes. Legislators respect the input of healthcare professionals who are able to provide expert input and “real-life” patient examples to assist in crafting legislation. Meier and Beresford offer a practical summary and multiple examples of ways in which palliative care professionals can contribute to state and national legislation and policy.96

Collaborating with local organizations also lends power to individual efforts. For example, the NHPCO, the American Cancer Society, nursing and medical associations, and professional organizations at local, state, or national levels often have lobbyists and resources to assist with legislative efforts. chapter 66 contains a broader discussion on the nursing role in policy development. However, it is important for HBPC program staff and leaders to keep these initiatives in mind as they develop within a healthcare setting.

Future directions

Despite a strong foothold within mainstream medicine, there is a need for much growth, improvement, and education to sustain and expand palliative care. Calvin Coolidge is quoted as saying, “We cannot do everything at once, but we can do something at once.” Box 3.2 lists some future professional and societal issues that need attention. Great strides have been made in providing a solid infrastructure for growth in the form of increasing research evidence, consensus guidelines for practice, reliable and valid outcome measures, and specialty educational/certification standards. These standards need to be widely disseminated and adopted. As more HBPC programs develop, there is likely to be a shortage of specialty-trained personnel and the faculty to educate them. Additional sources of funding and support are needed to continue the current momentum of change.

However, palliative care programs must not remain insular. Good work and rigorous studies need to be disseminated outside of the specialty via “mainstream” healthcare journals and conferences. Continuous outreach education to increase awareness among patients, communities, and all healthcare providers (nursing, physicians, physical therapists, nursing aides, etc.) remains a cornerstone of improving the delivery of palliative medicine. Hospital with PCTs should promote and support their programs and staff in these endeavors and allow the time and space needed to expand palliative care services throughout their communities. External agencies (e.g., TJC) must require mandatory adherence to standards, and those agencies that meet established standards should be properly reimbursed for their performance. Funding for palliative care research, adequate reimbursement, and support for faculty development must become national priorities. Perhaps consumer demand for patient- and family-centered care will be the “tipping point” that will make palliative care services an integral part of every organization that touches the lives of persons with life-limiting illness and their families.

As awareness for palliative medicine interventions for the advanced illness patient evolves, it is our moral imperative that provides the clearest rationale: “Be kind whenever possible. It is always possible” (Dalai Lama). In every action taken, let us endeavor to always practice with kindness, and let kindness be the driving force for changing the face of healthcare delivery.

Acknowledgments

The authors acknowledge the following colleagues, who provided important information for the development of this chapter: Neil Ellison, MD (Director, Palliative Medicine Program, Geisinger Health System); Jenna M. Carmichael, PharmD (Geisinger Health System, Clinical Oncology); Jay Horton, ARNP; Sean Morrison, MD; Lisa Morgan (Center for the Advancement of Palliative Care); Lisa Stephens, ARNP (Dartmouth-Hitchcock Palliative Care Team); and Melissa Thompson, RN, CHPN (VAMC: VISN 1 Palliative Care Coordinator).

Patricia Maani-Fogelman especially acknowledges the following individuals for their constant love, encouragement, and faith: Timothy G. Fogelman; Heather D. Tirino; Christopher V. Maani, MD; and Ruby Weller, CRNP.

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