◆ An advanced practice registered nurse (APRN) in hospice is a leader and advocate for hospice care of the terminally ill.
◆ An APRN in hospice works within an interdisciplinary, holistic, and compassionate model of care focused on promoting quality of life.
◆ The delivery of expert end-of-life care within the hospice model demands that APRNs function at the highest level of their training and expertise.
Lilly Moore, in her role as the hospice NP attending of record, demonstrated clinical judgment, advocacy and ethical reasoning, professionalism, collaboration, systems thinking, cultural competence, and facilitation of learning, communication, and evidence-based practice.
APRNs have a unique skill set ideally suited to working with the terminally ill receiving hospice services. Hospice APRNs have the opportunity to work to the full extent of their potential while providing compassionate care to dying individuals and their families. The work is challenging, but APRNs who master the necessary skills will ultimately reap the benefit of deep personal and professional growth.
Death is inevitable and can occur at any time, but in the United States it is predominantly associated with aging, and the aging population is growing. It is estimated that by 2030, 20% of the population will be over the age of 65.1 In the United States, prior to death, most terminally ill individuals find themselves caught in a fragmented healthcare system, relying on complex medical interventions and burdened by rising costs. In contrast, when given a choice about end-of-life care, many Americans would prefer medical care that is coordinated and comprehensive; they want their care to reflect their wishes for comfort and quality of life; and they want information about what lies ahead for them and their family.2 Hospice is the healthcare delivery model that provides this type of care. The demand for hospice services will likely increase, resulting in an increased demand for a skilled workforce.
Overview of the APRN in Hospice
The clinical APRN is an evolving role in hospice care. With a shortage of hospice and palliative medicine physicians,3 the demand for advanced practice registered nurses (APRNs) will continue to grow. Most APRNs providing clinical care in hospices are either nurse practitioners (NPs) or clinical nurse specialists (CNSs). APRNs work in influential positions in hospice programs throughout the United States. In addition to clinical care, there are other roles for advanced practice nurses (APNs) in hospice, such as chief executive officer, chief operating officer, director, administrator, quality and performance improvement officer, and manager, to name a few. APNs in these roles combine a tradition of advocacy and teaching, a broad clinical knowledge base, and their critical thinking skills to make complex decisions related to the structure and processes of patient care in the hospice setting.4 This includes issues related to “organizational and workforce excellence, compliance with laws and regulations, stewardship and accountability, and quality and performance improvement.”5
As leaders at all organizational levels in hospice, APRNs understand the importance of patient-centered, whole-person, interdisciplinary care delivered within a framework of high-quality, evidence-based practice.6 A basic requirement of palliative nursing, and indeed any leadership role, is expert communication skills7 and collaboration. Specific tasks that rely on these skills are gathering and relaying information, negotiating, teaching, and resolving conflicts. Due to the multidimensional nature of hospice care, APRNs often lead interdisciplinary teams, requiring a high level of expertise and a strong understanding of clinical and professional issues across all disciplines involved. APRNs should understand the need to work collaboratively, with an appreciation for the expertise of others within nursing and other disciplines,6 to ensure that individuals and their families receive high-quality end-of-life care under hospice services. APRNs in leadership roles must bring the unique care needs of hospice patients to the attention of the larger healthcare community through advocacy and education. Discussing end-of-life care even at an institutional level can be fraught with pitfalls, so the APRN must have expert guidance and coaching skills and a solid knowledge of the ethical issues associated with end-of-life care in the hospice setting.
The Hospice APRN
APRNs practicing in clinical roles as CNSs and NPs in hospice are educated and certified in their primary role or population focus in one of six population foci according to the Licensure, Accreditation, Certification, and Education (LACE) model.8 A broad scope of practice of the primary role is preferred to accommodate the diverse population accessing hospice services. To demonstrate their specialty practice, hospice APRNs should obtain certification as an advanced certified hospice and palliative nurse (ACHPN). A hospice APN who is not a CNS or NP should obtain certification as a certified hospice and palliative nurse (CHPN).9
Hospice Model of Care
Hospice is a model of healthcare delivery that provides palliative care, defined by the National Consensus Project (NCP) for Quality Palliative Care as “patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing the physical, intellectual, emotional, social and spiritual needs and to facilitate patient autonomy, access to information, and choice.”10 Since its inception, hospice care has not only matured into an advanced model of care for terminally ill patients but has also become a philosophy of care. As “the model for quality, compassionate care at the end of life,”2 hospice is a type of care that focuses on all dimensions of quality of life for both the patient and family. The modern hospice movement started in England in the 1960s and migrated to the United States in the 1970s. The first American hospice was opened in 1974, in part due to the vision of an APN, Dr. Florence Wald, Dean of the Yale School of Nursing. As a distinguished APN, she, along with two pediatricians and a chaplain, started the first home hospice program in New Haven, Connecticut.11
Today in the United States, hospice services are a guaranteed Medicare Part A benefit for individuals over the age of 65 with a prognosis of 6 months or less to live if their terminal disease takes its natural course and they choose to focus on comfort only rather than curative interventions.2 The Centers for Medicare and Medicaid Services (CMS) oversees the provision of hospice services. Medicaid and many commercial and private insurance companies mirror the Medicare Hospice Benefit (MHB) for individuals below the age of 65. The delivery of hospice care in the United States has grown and developed in the past 40 years. (Table 18.1 is an overview of hospice providers.)
Table 18.1 Overview of Hospice Providers in the United States
Annual number of patients accessing hospice services12
Number of hospice providers
Type of hospice agency14
Part of a hospital system
Part of a home health agency
Part of a nursing home
Operate inpatient facility or residence
Agency size: average daily census14
1–25 patients per day
26–100 patients per day
>100 patients per day
Not for profit
Geographic population served14
Adapted from NHPCO FY2012 National Summary of Hospice Care, reference 14.
These agencies vary considerably in their organizational structure (not-for-profit vs. for profit), the communities they serve (rural vs. urban), size (from large to small), and setting (standalone and independent vs. beds within a nursing home).12,13,14 Hospice services are provided in any setting, anywhere along the age continuum, to individuals with a variety of diseases. However, as illustrated in Table 18.2, in 2012 66% of individuals received care at their place of residence, 84.5% were over the age of 65, and approximately 63% had a non-cancer diagnosis spanning all organ systems.13,14
Table 18.2 Hospice Patient Demographics
Site of Care at Time of Death
Patient’s place of residence
Hospice inpatient facility
Acute care hospital
Stroke or coma
Kidney disease (End Stage Renal Disease)
Non-amyotrophic lateral sclerosis motor neuron
Amyotrophic lateral sclerosis
Table adapted from NHPCO FY2012 National Summary of Hospice Care, reference 14.
APRNs and Hospice Care
APRNs, with their roots firmly established in nursing theory, are well prepared to provide expert end-of-life care to dying individuals receiving hospice services. Theoretical concepts that are shared by nursing practice and hospice care include whole-person care, health and its impact on quality of life, and being present and bearing witness, all delivered within a collaborative practice framework.2,15 In hospice, APRNs combine these common theoretical concepts with the skills needed to provide expert care at the end-of-life. The Hospice and Palliative Nurses Association (HPNA) developed the Palliative Nursing: Scope and Standards which establish the competencies necessary to meet these standards. These standards are divided into Standards of Practice for Palliative Nursing, which incorporates the nursing process, and Standards of Professional Performance.16 The competencies are advanced clinical judgment, use of evidence and research, expert communication skills, collaboration, knowledge of ethical principles and professional standards, respect for cultural and spiritual diversity, advocacy, systems thinking, and an understanding of the importance of ongoing education for creating a professional practice that delivers expert end-of-life care.9
These standards and associated competencies are closely aligned with both the eight domains of quality palliative care as outlined in the NCP Clinical Practice Guidelines for Quality Palliative Care10 and the National Hospice and Palliative Care Organization’s (NHPCO) Standards of Practice for Hospice Programs.5 The NHPCOs standards stipulate that for hospice providers to provide high-quality patient- and family-centered palliative care, they must incorporate either the NCP Clinical Practice Guidelines or the NHPCO Standards of Practice for Hospice Programs into the delivery of hospice services.5 Shared concepts across all of these guidelines, standards, and competencies are easily identified when they are placed side by side (Table 18.3).
Table 18.3 Hospice APRN Scope, Standards, and Competencies and Hospice Care Standards and Guidelines
Palliative Nursing: Scope and Standards16
HPNA Competencies for the Advanced Practice Nurse9
NHPCO Standards of Practice for Hospice Programs5
NCP Clinical Practice Guidelines for Quality Palliative Care10
Clinical excellence and safety
Advocacy and ethics
Ethical behavior and consumer rights
Ethical and legal
Structure and processes of care
* Facilitator of learning.
In addition, familiarity with the hospice local coverage determinations (LCDs), which are published by the local geographic area’s Medicare administration contractor, and the hospice conditions of participation (COPs) criteria set forth by the CMS is essential. The LCDs are guidelines for determining eligibility and prognosis.2 The COPs delineate the services that a certified hospice provider must provide to a patient as it relates to his or her terminal diagnosis and related conditions, and also set the standards for the delivery of hospice services, such as clinical recordkeeping and staff credentials. To receive reimbursement from the CMS, a hospice provider must comply with these standards and requirements.17 Private insurers usually follow the CMS hospice guidelines for eligibility, the type of services provided, and reimbursement. The NHPCO works closely with these agencies to create these guidelines and requirements.
All of these essential components of professional practice combine to create a complex and comprehensive knowledge base for APRNs practicing in hospice care. These guidelines, standards, and competencies guide the hospice APRN. With the patient and family as the unit of care, Figure 18.1 demonstrates these components, clearly showing the multifaceted dimensions of professional practice that contribute to the provision of expert end-of-life care by APRNs within the hospice model of care.
An extensive clinical knowledge base is also essential for practice in a hospice setting. APRNs will be expected to provide care for diverse patients of all ages in a variety of settings, with any and all terminal illnesses, and within a finite reimbursement system. Such a broad sphere of practice demands creativity, flexibility, and a high level of critical thinking skills to produce good outcomes in such a multitude of situations.
Hospice services are predominantly provided to individuals over the age of 65.14 However, hospice services are also provided to newborns, young children, adolescents, young adults, and middle-aged individuals.14 Understanding each age group’s developmental stages and challenges is critical. Caring for individuals across the age continuum ensures that APRNs will encounter a multitude of disease states. This demands a comprehensive knowledge of many illnesses and conditions; their pathophysiology, manifestations, and progression; and associated pharmacology.
The APRN will encounter a wide diversity of patients, such as military veterans; individuals with developmental disabilities; individuals with mental illness and personality disorders; prison inmates; the lesbian, gay, bisexual, transgender, and intersex community; individuals with substance use disorders; individuals who are homeless; and individuals of a low socioeconomic status. Cultural competence and knowledge of issues specific to these populations are essential.
The setting in which hospice services are provided plays an important role in the delivery of hospice care. Sixty-six percent of individuals receiving hospice care are in their place of residence, such as a private home, a nursing home, an assisted living facility, a residential care facility,14 a prison, or even a homeless shelter.18 In addition, there are hospice houses, which vary in population demographics. Some provide strictly residential routine hospice care, others provide only general inpatient hospice care, and others provide a mixture of both.
Caring for an individual in his or her home presents different challenges than in an acute care setting. Stepping into a person’s home is a privilege, as the APRN is a guest. In the private home, family members are usually the primary caregivers. They are often stressed and overwhelmed, with little ability to assess symptoms and then apply interventions. In other home settings, paid caregivers, often with limited scope of practice and frequently minimal training, are providing the care. Hospice houses, depending on the population they serve, may have only paid unlicensed caregivers or highly skilled licensed and unlicensed personnel, or a mixture of both. All of these scenarios present advantages and disadvantages in terms of symptom assessment and management, medication administration, and delivery of personal care, which the APRN will have to incorporate into the plan of care.
The hospice APRN must determine the knowledge and expertise of the caregivers in different settings. Moreover, each physical location in which hospice services are provided, other than a private home, will have regulatory oversight by state and federal licensing agencies based on their designation. The hospice APRN must understand how these regulations affect his or her practice. For example, nursing homes often have strict regulations regarding the use of certain antipsychotics, thus influencing the APRN’s choice of medications in these facilities. In another example, many residential care facilities do not have the licensed staff to dispense medications like opiates or cannot give them on an as-needed basis. In both of these cases, the hospice APRN must balance regulatory restrictions with recommended standards of care to develop an appropriate care plan.
In addition to physical location, the four CMS-mandated hospice levels of care that a hospice provider must offer strongly influence the delivery of hospice care. These four levels of care are routine home care; continuous home care for patients in crisis; inpatient respite care, usually provided in a contracted facility, for patients whose families need respite from caregiving; and general inpatient care for patients in crisis who cannot be managed at home.19 Table 18.4 shows the differences and the associated variance in reimbursement from the CMS.20 In July 2015, the first significant changes to hospice reimbursement since the Medicare Hospice benefit went into effect in 1983 were initiated with new legislation approved by Congress. The changes to be implemented on January 1, 2016 include a two-tiered routine home care rate and a service intensity add-on payment. The two-tiered payment model for routine home care means that hospices will receive a higher rate for the first 60 days of hospice care and a lower rate for any additional days of hospice care. The service intensity add-on payment will reflect the higher acuity and needs of dying patients and their families in the last seven days of life. It will be calculated retrospectively based on nursing and social work visits and will be equal to the continuous home care hourly rate up to four hours per day. These reimbursement changes reflect the reality of short lengths of stay and a higher intensity of care in the last week of life that many hospices encounter.21 Clearly, the hospice APRN must be able to assess the patient’s and family’s needs and the skill of the caregivers, then incorporate this information into a care plan that meets regulatory oversight, all within a finite monetary compensation to the hospice provider.
Table 18.4 Levels of Care with the Medicare Hospice Benefit
Levels of Hospice Care19
Daily Reimbursement Rates for FY2014 Hospice Care by CMS20
Routine home care
Routine hospice care at home
Continuous home care
Hospice provider provides crisis intervention in the home. The patient receives hospice care consisting of continuous nursing care for a minimum of 8 hours a day. The patient may also receive continuous hospice aide or homemaker care. Used for only brief periods with a goal of keeping the terminally ill individual in the home.
Inpatient respite care
Individual receiving hospice care is transferred to a contracted facility for a short period to give family/caregivers a respite. The individual continues to receive routine hospice care while in the facility.
General inpatient care
An individual receiving hospice care is transferred to an inpatient hospice facility (or bed) for acute pain control or acute or chronic symptom management that cannot be managed in other settings.
This leads us to the additional limitation of a capitated reimbursement for hospice services, which also affects the treatment plan. Appropriate resource utilization while achieving good outcomes is a standard of professional practice. The hospice organization is responsible for the cost of all the care of an individual as it relates to his or her terminal diagnosis. Therefore, an extensive knowledge of pain and symptom management options is necessary to enable the creation of a care plan that provides comfort in any setting to any individual in a fiscally responsible manner. For example, the hospice APRN must know the cost and relative efficacy of different medications. In the medical management of a bowel obstruction, it is acceptable to use inexpensive drugs, such as scopolamine or glycopyrrolate, rather than the more expensive drug octreotide.22
Barriers to Care
APRNs must be aware of some of the barriers to accessing hospice services, including lack of healthcare provider and community knowledge, the predominant culture’s death-denying beliefs, the influence of an individual’s culture, and insurance issues, among others.2 The delivery of end-of-life care in a hospice setting is governed by financial restraints and regulatory issues, as discussed previously. APRNs must integrate these factors into their clinical decision making when creating, maintaining, or changing hospice programs. Providing compassionate, evidence-based, patient- and family-centered care within these confines can be challenging. The NHPCO has an extensive compilation of resources designed to help hospice providers and clinicians achieve good clinical outcomes within these regulatory and financial constraints.23
APRNs working in hospice have a remarkable opportunity to directly influence the provision of expert end-of-life care at all levels of delivery. APRNs have the education to work with public policy to promote high-quality hospice care, to develop and manage healthcare agencies providing hospice services, to work as educators and researchers to ensure high-quality, evidence-based practice, and to provide expert direct patient care. With the expected growth in the demand for hospice services, there is enormous potential for APRNs to continue and expand their presence.
The Role of the Hospice NP
APRNs working in hospice have functioned as primary care providers, expert clinicians, leaders, educators, researchers, advocates, consultants, collaborators, and coordinators of care. However, most hospices use NPs rather than CNSs due to reimbursement issues. Since the 1970s NPs have been considered a resource that is effective, cost-conscious, and essential to the delivery of healthcare in the United States.24 By the 1980s, it was acknowledged that geriatric NPs in hospice and home care had the potential to improve outcomes, such as better case management and increased use of advanced interventions, and in general to raise nursing’s awareness of the unique characteristics of aging.25 The real impetus to use NPs in hospice occurred in 2003 with the Medicare Prescription Drug Improvement and Modernization Act. CMS revised the definition of the hospice attending of record to include NPs, defining this position as “the Doctor of Medicine or Osteopathy, or Nurse Practitioner selected by the individual as the person who has the most significant role in the creation and provision of the individual’s plan of care.”26 With this legislation, NPs could serve as the primary medical provider for hospice patients; assess and diagnose; implement plans of care, including writing and signing orders; and prescribe medications as defined within the statutes of the specific nurse practice act of the state in which the NP practices. The COPs stipulate that patients may be given a choice between a physician and NP as the attending of record if the patient does not already have a designated primary care clinician. The primary role of NPs in this role is the healthcare provider who is recognized by the hospice patient to have the most influence over his or her care. NPs acting in this capacity work alongside physician colleagues to provide expert patient care to patients at the end-of-life. However, NPs still cannot certify or recertify a terminal illness or 6-month prognosis.26
Another push to increase the use of NPs occurred with the implementation of the Patient Protection and Affordable Care Act (PPACA) of 2010. Embedded within the PPACA is the requirement for a face-to-face visit to be made by a physician or an NP to all hospice patients prior to the 180th-day recertification and prior to each subsequent recertification.27 This has created an additional role for the hospice NP as the primary clinician performing these visits; in fact, many hospice providers have hired NPs solely to perform these visits. This act mandates that the NP be employed by the hospice provider in order to perform these visits but does not have to be the attending of record.27 Sound physical assessment abilities, comprehensive information gathering, knowledge of prognostic indicators and eligibility requirements, and expert communication skills are necessary to perform this function well.
As a hospice attending of record, NPs practice in the role of leader of the interdisciplinary team, although their presence does not replace the hospice medical director.28 In collaboration with the hospice interdisciplinary team and the patient and family, hospice NPs develop the plan of care, provide oversight in its implementation, and lead the evaluation of outcomes (see Case Study 1). The primary focus is on the clinical management of patients, which requires expert clinical judgment, an in-depth knowledge of a host of diseases, and extensive knowledge of pain and symptom assessment and management. Superb physical assessment and diagnostic reasoning are critical skills in a hospice setting. Lack of access to sophisticated diagnostic tools, such as x-rays, computed tomography (CT) scans, magnetic resonance imaging (MRI), and ultrasound, due to cost and the burden of travel at the end-of-life, means that the hospice NP must be able to elicit the pertinent history and know the physical assessment findings indicating serious conditions like effusions, ascites, bowel obstructions, and so forth. The APRN must be able to recognize the risks, benefits, and burdens of treatment and where the individual is on the illness trajectory; know the cost of interventions; be able to apply current clinical research to clinical practice; and be able to synthesize complex data into a comprehensive care plan specific to the individual’s needs and goals. The use of standard tools to assist with prognostication, to assess physical symptoms, and to identify psychosocial and spiritual issues is indispensable.
Jerry Davis was a 47-year-old man with metastatic colorectal cancer admitted to home hospice at the residential care facility where he had recently moved. He agreed to have the hospice NP, Lilly Moore, serve as his attending physician. His past medical history was remarkable for unresectable colorectal cancer with a diverting colostomy, a colovesicular fistula, and metastases to his liver; an unrepaired umbilical hernia; and a dual diagnosis of paranoid schizophrenia and substance abuse disorder. His code status was DNR. His medication list included two 10/325-mg hydrocodone/APAP q4h PRN and Risperdal Consta 50 mg IM every 2 weeks. His family and social history included current alcohol and tobacco use and distant cocaine and amphetamine use; intermittently homeless; unemployed; mother and stepfather in touch but living out of state. Consultation with Jerry’s psychiatrist from the County Mental Health Department revealed that prior to his cancer diagnosis he was stable on his current psychiatric medications. Staff liked him for his kind and gentle nature. Lilly incorporated the impact of his dual diagnosis when creating a treatment plan. His major issues were as follows.
Pain management complicated by auditory hallucinations, altered perception and thought processes: Jerry insisted on only taking two hydrocodone/APAP pills q4h despite a poor response and increasingly higher doses of long-acting morphine. Lilly added immediate-release morphine q2h PRN. Jerry was happy with the plan, and his pain control improved. Doses were periodically increased until his death, based on his report and the care team’s and Lilly’s assessment. His desire for alcohol also increased, so Jerry was connected with the local Alcoholics Anonymous group, who were able to visit him at the residential care facility; a volunteer was arranged to take him to meetings. He was also allowed to smoke tobacco on the patio.
Symptom management and personal care needs complicated by paranoia with auditory hallucinations, personal space concerns, and difficulty with acceptance and trust: Clinical staff were frequently misled by Jerry’s affable manor, which masked his underlying paranoia; as a result, symptoms of constipation, nausea, and vomiting often went undetected. Poor hygiene was also an issue, as Jerry insisted on being independent with his colostomy. Lilly implemented interdisciplinary meetings to help the nursing and facility staff assess symptoms more accurately and respond appropriately to Jerry’s needs. In consultation with his psychiatrist, olanzapine ODT was initiated as an antiemetic and antipsychotic for its low side-effect profile in spite of its cost.
Emotional and spiritual support complicated by severe mental illness: Jerry avoided talking about his death. Lilly recognized that as Jerry’s disease progressed, his psychological state deteriorated. Disorganized and distorted thinking, delusions, and auditory hallucinations all increased. In addition to working closely with the hospice social worker and chaplain, integrative therapies such as massage, Reiki, and music therapy were intensified. His tobacco and alcohol use increased, and he frequently left the facility, returning disheveled and disoriented. Lilly recognized that Jerry was entering the final phase of the dying process, exhibiting a hyperactive terminal delirium. An alarm was placed on his door so that when he left his room the staff were alerted and available to respond to his needs. Skilled communication was necessary to ensure the team understood that he was not restricted to his room, but this was to be used as a signal that he had left it and needed something. By this time he was permitted to drink alcohol on site and smoke on the patio with supervision.
Very soon after this occurred Jerry became bed-bound, unable to swallow, and more confused and agitated. Lilly discontinued all oral medications, initiating morphine and midazolam subcutaneous infusions and IM chlorpromazine injections. Reiki, massage, and music therapy were continued. Jerry died peacefully, with staff and family surrounding him. Despite the challenges, Lilly remembers his gentle spirit and the lessons he taught her.
Prognostication is also an important skill. However, NPs are legally prohibited from certifying or recertifying a terminal illness or determining a 6-months-or-less prognosis.26,28 Nonetheless, it will be their clinical judgment on which the hospice medical director will base the determination of eligibility and prognosis in order to ensure that the hospice provider remains within the LCD hospice eligibility guidelines. Understanding the implications of related conditions and comorbidities in determining the patient’s prognosis is part of this skill. Estimation of prognosis is also essential to keep the patient and family informed of where he or she is on the illness trajectory. In addition, as medical care in general becomes more complex, relying on advanced therapies to extend life, hospice NPs serving as the attending of record must be prepared to manage patients on hospice with interventions already in place, such as ventricular assist devices, intravenous vasopressor therapy, pulmonary hypertension infusions, and ventilators, among other treatments.
Expert practice is built on strong communication skills.7 Hospice NPs must recognize the communication needs of their patients, families, team members, and other caregivers. Communication skills to be mastered include listening, collecting and conveying information, being present, and bearing witness.7 They must be adept at conducting meetings with patients and families, other healthcare providers, and team members. Issues addressed in these meetings include pain and symptom assessment and management, advance care planning, giving bad news, code status, goals of care (including the use and discontinuation of life-sustaining therapies and artificial hydration and nutrition), and transition to death. Requests for euthanasia, assisted suicide, and palliative sedation will be encountered, and hospice NPs should know the legal, ethical, and moral issues surrounding these topics. They should be able to respond openly and compassionately to the suffering of individuals and families. With recognition of the influence of culture on the experience of dying, advocacy and the application of ethical analysis are essential steps in working through these issues. Hospice NPs serve as mentors to their interdisciplinary colleagues, modeling expert clinical, ethical, and professional behaviors.
Serving in the role of the attending of record, NPs shoulder the responsibility for the patient’s care. This carries significant weight at a highly emotional and often difficult time for patients and families. In addition, providing expert clinical care is challenging given the confines of limited reimbursement and often inexperienced caregivers. NPs providing care to hospice patients have the moral and ethical obligation to provide the best symptom management while conserving resources; thus, they must examine not only the benefit, burden, and risk of each intervention but also the cost and ease of administration. Hospice NPs need to use all of their critical thinking skills to create a plan of care that is effective, compassionate, evidence-based, and cost-conscious.
An additional legal limitation that hospice NPs may encounter is whether they have the scope of practice within their state to sign the forms generally known as Medical Orders for Life Sustaining Treatments. Known in many states as the Physician/Provider/Medical Orders for Life Sustaining Treatments (POLST/MOLST) forms, these allow patients to have more control over their death. NPs may also sign death certificates, depending on organizational bylaws and state statutes. This varies from state to state, potentially impeding the delivery of care if the NP cannot sign these documents.
The Role of the Hospice CNS
Hospice providers since the 1980s have recognized the important contribution of CNSs to end-of-life care in the areas of nursing education, research, and the care of increasingly complex patients.29 CNSs working in hospice have functioned as educators, expert clinicians, researchers, consultants, administrators, advocates, coordinators, case managers, leaders, program developers, and policymakers (see Case Study 2). CNSs have three core areas of practice: managing the care of complex and vulnerable populations, educating and supporting interdisciplinary staff, and facilitating change and innovation in healthcare systems.30 There is more variability for CNS practice, and similarly to NP practice, state statutes and regulations vary, including prescriptive authority.24
John Brown was a CNS working for a home hospice provider. He was called one day by one of the nurse case managers for consultation on a particular case. The nurse reported that her patient, Mrs. G, was a 75-year-old woman originally from Japan admitted to hospice the week before for end-stage COPD. Her past medical history included a recent left hip fracture and repair, and chronic low back pain related to a motor vehicle accident several years ago. The patient had been started on routine extended-release morphine with immediate-release morphine for breakthrough pain prior to her hospice admission. Over the previous week her hip and back pain had worsened, resulting in several increases in her long-acting morphine dose. The patient had been alert and oriented, eating, and up to the bedside commode with assistance, but was now confused, sleepy, shaking, and constipated.
John made a home visit. He found a woman who was lethargic and confused, with brief involuntary jerks of both upper and lower extremities, and reporting 9/10 pain. John recognized signs of opioid toxicity, including myoclonus and dysphoria. In addition, he noted that Mrs. G’s primary language was Japanese, so communication with her and her family caregivers was difficult. Using his knowledge of advanced pharmacology and pain management, John identified opioid rotation as the appropriate intervention. In collaboration with the hospice medical director, the long-acting morphine was discontinued. Methadone 5 mg q12h was initiated with immediate-release morphine for breakthrough pain. John also added bisacodyl daily suppositories for 3 days for constipation. This new plan of care was communicated to the hospice nurse and to the patient and family using the telephone language translation services.
Three days later John received another urgent call from the nurse because the family was unable to wake Mrs. G up. John immediately thought of over sedation due to the long half-life of methadone and that a medical error had occurred. John made another home visit, confirming his theory. In collaboration with the hospice medical director, new orders were communicated to the nurse, including holding the methadone, using the immediate-release morphine for signs or symptoms of pain, and making daily visits until the patient was awake and more stable. By day 3 the methadone was restarted at 2.5 mg q12h as the patient was awake and able to swallow.
Mrs. G continued on hospice services for another month, requiring only two more increases of her methadone dosage. She died peacefully with her family at her side.
The events that occurred were discussed by the team at the next weekly interdisciplinary team meeting. It was agreed that a root cause analysis should be conducted. John conducted a critical analysis, identifying multiple issues, including a complex pain management scenario; no bowel program initiated with a patient on routine opioids; a lack of knowledge of methadone pharmacology by the nurse; and a lack of process around the initiation and titration of methadone in the home setting with family caregivers of hospice patients. While noting that there were no policies or procedures in place system-wide to prevent a recurrence, John created a clinical practice change. John conducted a needs assessment testing nursing’s knowledge of opioid pharmacology, including methadone. He researched the current evidence related to identifying complex pain syndromes. He then developed a nursing education plan addressing triggers identifying a complex pain patient, assessment and management of pain using opioid therapy, and the unique characteristics of methadone. Subsequently he developed new policies, protocols, and procedures to be initiated in two areas, identification of complex pain patients and methadone initiation in the home setting. These new policies included an automatic trigger for a CNS consultation. A standard bowel program for use with all patients taking opioids was initiated.
John also conducted an in-service on the use of the telephone language translation line. Finally, he developed an evaluation process using chart audits to measure the outcomes of the new policies. He incorporated the new policies into an education plan for the nursing staff.
In his role as a hospice CNS, John demonstrated clinical judgment, advocacy and ethical reasoning, professionalism, collaboration, systems thinking, cultural competence, communication, evidence-based practice, and facilitation of learning.
CNSs are the ideal clinicians to serve in the role of RN case manager, caring for complex patients receiving hospice services, such as patients with ventricular assist devices, those receiving intravenous vasopressor or pulmonary hypertension therapy, those on ventilators, or those receiving other life-prolonging therapies that require a high level of critical thinking. Other direct patient care scenarios that would use CNSs’ advanced clinical skills are complex pain and symptom management patients, individuals with difficult wounds, patients with a comorbid serious mental illness, and developmentally disabled individuals, to name a few. CNSs caring for complex patients combine their comprehensive knowledge of multiple disease states and expert assessment skills with their ability to synthesize data to create individual comprehensive care plans. Standards of practice include the incorporation of validated assessment tools for pain, other symptoms, and psychosocial and spiritual needs. CNSs have the skills necessary to assist the attending of record in prognostication and the recertification process. Hospice CNSs are also familiar with the current research as it relates to end-of-life care and can incorporate this information into the patient’s plan of care.
CNSs working in this role manage the multiple interventions related to direct patient care as well as the social, emotional, and spiritual issues that accompany the use of advanced technological therapies at the end-of-life. CNSs must be skilled in communication,7 as they will be expected, in collaboration with the attending of record and other members of the interdisciplinary team, to conduct patient and family meetings, to give bad news, to participate in team meetings, to discuss the discontinuation of therapies, to negotiate conflicts, and to prepare the patient and family for the actively dying phase. Deep listening and bearing witness are nonverbal communication tools that CNSs will be expected to master to ensure patient autonomy.7 CNSs, with their understanding of the ethical dilemmas related to end-of-life care and their ability to sort through these complex issues, along with a knowledge of the importance of culture in end-of-life care, play a crucial role in the care of complex patients.
CNSs are also especially suited to the role of consultant and educator to the patient, family, caregivers, nurses, and other members of the interdisciplinary team. Patients, their families, and other caregivers have a multitude of educational needs. Patients are usually dependent on others for the majority of their care at the end-of-life as changes in cognition, fatigue, pain, and other symptoms impair their ability to care for themselves. Thus, the majority of care falls to others, and with the bulk of hospice care being performed in the place of residence, the caregivers are often not adept at performing the often complex functions of end-of-life caregiving. Learning needs include symptom and medication management, taking care of personal care necessities, and the emotional and spiritual concerns individuals face at the end of life. CNSs combine their communication skills with their knowledge of adult learning styles to teach these caregivers the skills they need to perform these tasks.
Nursing education and research related to providing end-of-life care in a hospice setting are two significant areas of focus for CNSs. The goal is to improve patient outcomes, and CNSs who assume the role of educator in hospice must be familiar with the HPNA Palliative Nursing: Scope and Standards and Competencies for the Hospice and Palliative APN, licensed vocational nurse, and certified nursing assistant.
Regardless of the setting in which hospice care occurs, CNSs must be able to identify knowledge gaps and the educational needs of nursing staff. To identify areas of concern in patient care in the hospice setting, CNSs must have a broad understanding of a multitude of disease states and the specialty nursing knowledge necessary to care for all individuals regardless of their terminal diagnosis, combined with an understanding of the nursing process and its relationship to the unique needs of dying patients relative to all the domains of quality of life. In addition, the heavily regulated CMS oversight of hospice care mandates that CNSs be well versed in all the regulatory and licensing requirements that pertain to hospice nursing care.
Identifying needs and concerns is only the first step. CNSs must also be adept at implementing change in nursing practice. Using their expertise in conducting research and integrating current evidence into clinical practice, CNSs take on the roles of change agent and mentor, recognizing the unique challenges encountered by nurses providing end-of-life care in a hospice setting.
With an increasingly complex patient population entering hospice, the role of the CNS has huge growth potential. CNSs have been widely used for their positive influence on patient outcomes in the acute care setting, but there is limited evidence indicating their use in hospice care. It is unclear why this is the case: the increased use of CNSs would seem to be both prudent and appropriate to ensure high-quality end-of-life care. Hospice providers who use them will find themselves leaders in end-of-life care.
The demand for hospice services will grow, and the roles available to APRNs in hospice are rich and varied, as hospice care is not limited by age, setting, disease, or population. Even though the work is challenging, demanding that APRNs work to their fullest professional capacity, caring for dying individuals and their families is a great privilege that offers many rewards.
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