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The Advanced Practice Registered Nurse in Primary Care 

The Advanced Practice Registered Nurse in Primary Care
Chapter:
The Advanced Practice Registered Nurse in Primary Care
Author(s):

Rosemary Gorman

and Dorothy Wholihan

DOI:
10.1093/med/9780190204747.003.0014
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Key Points

  • Advanced practice registered nurses (APRNs) providing primary care require a generalist palliative care skill set.

  • An aging population with multiple comorbidities may require complex symptom management.

  • A primary care practice with long-term patient–provider relationships is the optimal setting for advance care planning.

Introduction

Primary care is defined by the Institute of Medicine (IOM) as “the provision of integrated, accessible healthcare services by clinicians who are accountable for addressing a large majority of personal healthcare needs, developing a sustained partnership with patients, and practicing in the context of family and community.”1 A patient will see his or her primary care provider (PCP) for routine physicals, preventive care, care of stable chronic illness, as well as common health-related issues. APRNs most commonly nurse practitioners, frequently act in the role of primary care providers. The APRN who assumes the role of the PCP acts as the initial contact point for patients experiencing a health-related problem. The APRN PCP directs and coordinates specialist care as needed. PCPs aim for continuity of care that leads to the development of longstanding relationships. Since primary care takes a long-term, lifespan approach, the implementation of palliative care may be appropriate intermittently in a patient’s health trajectory.

The recent implementation of the Affordable Care Act has resulted in the need for increased training of PCPs to provide care to the newly insured, and many anticipate that nurse practitioners will fill this need, especially for vulnerable populations.2,3 Many new patients will have been previously underserved, and many will be older adults. Current demographics reflect a growing older adult population within our country, as baby boomers become seniors. By 2050, the older adult population is expected to exceed 88.5 million people, more than twice the number in 2010.4 Due to advances in medical therapies and technology, our population is living longer and living with chronic illness. The combination of these factors results in an urgent need for APRN PCPs with primary palliative care skills. However, this chapter will discuss the palliative care issues facing both generalist and specialist APRNs.

The current trend in primary care is to transform the delivery of primary care through the development of patient-centered medical homes (PCMHs). This concept focuses on a model of care, not simply a place of care. The Agency for Health Care Research and Quality describes the five functions and attributes of a PCMH as:

  1. 1. Comprehensive care: This includes the provision of care for prevention and wellness, acute care and care for chronic disease. The medical home, or practice, may contain multiple specialty providers within the practice or can simply have established relationships with individual specialists within the community. Comprehensive care includes care for mental health as well as physical health and may also include pharmacists, nutritionists, and social workers. By the holistic nature of their practice, APRNs are well-suited to coordinate comprehensive care in the medical home setting.

  2. 2. Patient-centered care: This concept focuses on patients learning to manage and participate in their own care. It focuses on holistic care based on a partnership. The medical home emphasizes teaching and patient involvement in the care plan so that care is always patient-centered.

  3. 3. Coordinated care: The PCMH coordinates care across the healthcare continuum. It is the responsibility of the PCMH to establish close communication between all care providers, including hospital and subacute care and community providers, inclusive of home care, dialysis, or daycare. The PCMH coordinator assists in arranging the plan of care that is most consistent with the patient’s needs and involves discussion with the patient.

  4. 4. Accessible services: The PCMH must have accessible hours and contact information to meet the needs of the patient. This may include daily time for walk-in appointments, extended evening hours, as well as telephone or e-mail access to the care provider.

  5. 5. Quality and safety: The PCMH has a commitment to provision of high-quality care by providing evidence-based medicine, undergoing ongoing quality assessment as well as monitoring, and responding to patient satisfaction measurements.5

The PCMH model is in direct alignment with the core concepts of palliative care, providing holistic, high-quality care that is consistent with patient needs and includes patient input. To provide holistic, consistent care, a PCP must provide generalist palliative care services. According to Palliative Nursing: Scope and Standards,6 as nurses, all APRNs practice primary palliative care. Basic palliative care is inherent in the definition of nursing: alleviation of suffering through the diagnosis and treatment of human response. Furthermore, all nurses provide psychosocial and spiritual support and assist with advance care planning within the context of a patient’s cultural background. Quill and Abernethy recommend that the palliative care skill set for primary care should include basic management of pain and physical symptoms, basic management of anxiety and depression, together with basic discussions regarding prognosis, goals of treatment, suffering, and code status. They suggest that referrals to palliative care specialists be used for refractory or complex symptoms, assistance with conflict resolution, and assistance with cases of near futility.7 Specialty palliative APRNs are distinguished by their ability to synthesize complex data, develop and implement advanced plans, and provide leadership in hospice and palliative nursing.6 The Health Resources and Services Administration (HRSA) anticipates that the full implementation of the Affordable Care Act will result in increased access to, and demand for, primary care and an estimated shortage of PCPs. The need for primary care-trained nurse practitioners will increase. Hence, primary care nurse practitioners will also need to develop a basic skill set for palliative care.8

Who Needs Palliative Care?

The National Consensus Project for Quality Palliative Care defines palliative care as “patient and family centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care involves addressing physical, intellectual, emotional, social, and spiritual needs throughout the continuum of illness, as well as facilitating patient autonomy and access to information and choice.”9 APRN PCPs must be cognizant that palliative care is not the same as hospice care. Moreover, in primary care, both are important and will support the care offered by the PCP.

Palliative care is applicable early in the course of illness and is also appropriate in conjunction with treatment intended to prolong life. Palliative care focuses on the management of both physical and emotional symptoms experienced by those with serious illness. Palliative care helps to match treatment with a patient’s self-identified goals. Since primary care is comprehensive care, basic palliative care must be incorporated as an integral part of primary care. When it is time for hospice, the APRN PCP will need to work with the hospice nurses to develop a plan of care and will often continue to order medications and supervise the plan of care.

Today’s APRN PCPs must understand primary palliative care principles. Vigilant symptom management for patients with multiple comorbid diseases can optimize quality of life and minimize unnecessary admissions. Communication skills essential to the determination of individual and family goals can ensure person-centered care. The awareness of, and ability to connect with, community resources assists patients to access appropriate services, which can help them remain at home, and the APRN can provide expert guidance in the ongoing management of complex cases.

The specialist palliative APRN has an important role in collaborating with PCPs in the community. Inpatient palliative care specialist consultants can assist with appropriate discharge and follow-up planning, providing essential but often-neglected care coordination by maintaining clear, open communication with community providers. As outpatient palliative care specialty clinics and office practices develop and expand, palliative APRNs in these settings need to increase awareness among PCPs about their contributions and how they can develop partnerships for patient care. Team care can then be translated to the community outpatient settings. Research has shown that integrating APRN palliative care into community oncology clinics can improve outcomes in terms of hospital admissions and mortality in patients receiving aggressive treatment.10 Outpatient palliative care clinics can also improve access to early outpatient palliative care, as evidenced by a pilot project that evaluated a primary palliative care clinic.11 In this study, Owens and colleagues found that care for patients with life-limiting illnesses and the continuity and primary care provided by a palliative APRN resulted in a significant decrease in the use of the emergency department.11

Palliative APRNs also need to develop their teaching skills. Providing interprofessional educational opportunities for care partners can facilitate development of working relationships, increase professional awareness of the benefits of palliative care, and improve the general levels of palliative care knowledge among PCPs. In addition, both primary care nurse practitioners and palliative APRN specialists are well-suited to provide public education in order to increase public awareness of the benefits and availability of palliative care in the community.

The aging of America’s baby boomers will have a significant impact on healthcare. The prediction is that there will be 72 million older adults by 2030: this is more than twice the number in 2000. It is estimated that the population aged 85 and over may grow to 19 million by 2050.12 Technological advances in both the pharmaceutical and medical device industry have improved medical care and have resulted in the increased survival of individuals with chronic conditions. Nearly three in four individuals aged 65 and over have multiple chronic conditions.13 Diseases previously considered terminal, such as HIV, end-stage renal disease, liver failure, heart failure, chronic obstructive pulmonary disease (COPD), and cancer, are now chronic long-term health problems, with basic healthcare managed by APRN PCPs, with specialty consultation as needed.

Progressive chronic disease can have an uncertain illness trajectory, characterized by intermittent disease exacerbations and progressive decline in functional status, together with an associated high symptom burden.14 This care requires palliative interventions to maintain quality of life. There is a dearth of evidence for the management of patients with multiple coexisting chronic conditions, which adds to the complexity of the treatment and difficulty with prognostication. Research is lacking, and currently there are no appropriate clinical practice guidelines.14 The principles of palliative care can guide the APRN PCP in basic symptom management and the establishment of treatment plans based on realistic goals.

Integrating Palliative Care into the Primary Care of Common Chronic Illness

Heart Disease in Primary Care

The Centers for Disease Control and Prevention (CDC) identifies heart disease as the number one cause of death in the United States, with 5.1 million people identified as having heart failure, and half of these patients diagnosed with heart failure dying within 5 years.15 The symptom burden identified by those with heart failure has been reported to include general discomfort and fatigue, anorexia, dyspnea, depression, and anxiety. In addition, patients with advanced congestive heart failure routinely have multiple comorbidities and multiple symptoms. See Chapters 16, The Advanced Practice Registered Nurse Practice in a Specialty Outpatient Setting, and 48, Withdrawal of Cardiology Technology, for more detail.

COPD in Primary Care

Identified as the third leading cause of death in the United States, COPD is identified by the CDC as affecting more than 15 million Americans.16 According to the American Lung Association, research indicates that COPD is underdiagnosed, and as many as 24 million Americans have impaired lung function.17 COPD is a crippling disease and significantly affects quality of life. Breathlessness is the primary symptom of advanced COPD and can be accompanied by pain, fatigue, and insomnia. Anxiety, depression, and social isolation contribute to psychological suffering and the high symptom burden.18 The palliative care needs of this population are often complex and are discussed in Chapter 49 with regard to specific symptoms and treatment withdrawal issues.

Cancer and Survivorship in Primary Care

As of January 2012, the American Cancer Society estimated that there are 13.7 million cancer survivors living in the United States, and this number may likely rise to 18 million by January 2022.19 Although their disease may have been eradicated, many survivors suffer from emotional sequelae or treatment side effects attributed to medications, radiation, or surgery. These side effects may not occur until years after treatment was completed. Cardiac problems, neuropathy, osteoporosis, and liver or lung problems can arise, as well as an increased risk of other cancers. Anxiety and depression can also have a significant impact on quality of life. PCPs are frequently not familiar with chemotherapeutic agents and the possible long-term effects, making long-term management complicated. In 2006, the IOM introduced the Cancer Survivorship Care Planning Fact Sheet based on its 2005 report From Cancer Patient to Cancer Survivor: Lost in Transition.20 The IOM began recommending that cancer patients receive a Survivorship Care Plan from their oncology team. This recommended treatment plan contains valuable information for PCPs, including specific information about the cancer diagnosis and treatment; a schedule for follow-up, including necessary screening tests; and information about possible late side effects and signs of recurrence or of a new cancer. The American Society of Clinical Oncology (ASCO) promotes the use of treatment summaries and care plans and has initiated a practice-based quality improvement program to improve care coordination and survivorship, specifically completion of a treatment summary.21

In support of the improved survivorship plan, ASCO has issued evidence-based clinical practice guidelines for common symptom issues facing cancer survivors, including fatigue,22 anxiety and depression,23 and chemotherapy-induced peripheral neuropathy,24 the first set of guidelines in a planned series on survivorship care. The APRN PCP should maintain awareness of ongoing survivorship issues in coordinating care with oncology.

See Chapters 12, The Advanced Practice Registered Nurse in Outpatient Palliative Cancer Care, 36, Symptom Clusters in Various Solid Tumors and Hematologic Malignancies, and 52, Recurrent Disease and Long-Term Survivorship for more detail on specific care issues.

Frailty

The significant expected increase in the number of the oldest creates a focus on frailty. Frailty is defined as “a clinically recognizable state of increased vulnerability resulting from aging-associated decline in reserve and function across multiple physiologic systems such that the ability to cope with every day or acute stressors is compromised.”25 Operationally, Fried and colleagues defined frailty as meeting three out of five phenotypic criteria indicating compromised energy, in an attempt to make the concept of frailty distinct from and independent of medical comorbidities (Box 14.1).26

From reference 25.

APRN PCPs should recognize and address frailty as a syndrome and understand its effect on functionality and prognosis, as it may have clear implications in terms of treatment decisions and goals of care. Unfortunately, frailty is no longer a diagnosis that can be used for referral to hospice care, but its impact on functional status can significantly exacerbate a concomitant diagnosis that could serve as the primary hospice diagnosis.

Frailty is associated with an increased vulnerability to adverse clinical outcomes and is a risk indicator for falls, admission to an institution or hospital, and mortality,26 Hence, this condition warrants proactive palliative care interventions. The recognition of this syndrome can promote appropriate care planning and potentially reduce medical interventions that would exacerbate the patient’s decline. Knowledge about frail elders can also lead to successful palliative management of the symptom burden contributing to decline. Optimization of community resources and early advance care planning are essential. Palliative care’s interdisciplinary team approach provides physical as well as psychological symptom management, together with spiritual support, all resulting in an improved quality of life.27

Dementia

According to the Alzheimer’s Association,28 Alzheimer’s disease accounts for 60% to 80% of the cases of dementia and is now the sixth leading cause of death in the United States. There are more than 5 million people living with Alzheimer’s disease, which significantly affects the provision of primary care. Early recognition is key, and dementia should be addressed as a terminal disease. Patients with Alzheimer’s disease and other dementias and their caregivers require complex symptom management and support.

Dementia is an incurable and life-limiting illness; it is characterized by a slow progressive decline of cognitive abilities and functional decline that ultimately limits participation in activities of daily living. This neurodegenerative disorder leads to severe cognitive deficits, gradual functional decline, and death. Currently, there is no cure or therapy to halt or reverse this devastating disease. Challenging behaviors attributed to the disease itself or sundowning behavior likely may be related to unmet symptom treatment needs. These behaviors are distressing to patients and caregivers alike.29 The inability to manage the behaviors may contribute to the fact that 70% of persons with advanced dementia die in nursing homes.30

Burdensome interventions, distressing symptoms, high caregiver burden, and poor end-of-life care have been suggested in multiple studies,31 making dementia patients optimal candidates for palliative care. Challenging prognostication issues and strict requirements for hospice admission leave dementia patients and their caregivers with few resources. The slowly debilitating nature of this disease means that APRN PCPs provide care for long periods. The APRN PCP should guide care in line with palliative care principles that focus on proactive management of symptoms, caregiver support, and advance care planning. Emphasis is placed on early recognition and management of behaviors and assistance with often painful medical decision making. Coordination of care among providers can also ensure that benefit versus burden is fully understood when treatment goals are determined.

Case Study

Dave was a 75-year-old man with a 6-year history of Alzheimer’s disease. He was recently moved from his home, where he had been cared for by a live-in caregiver for the last 3 years, to an assisted living facility near his daughter’s home. His past medical history was positive only for hypertension. His daughter was called to take him to the hospital for evaluation of acute behavioral disturbance; he was subsequently admitted to the inpatient psychiatric unit for medication adjustment. When the daughter arrived the following day, the nurse practitioner told her that the medical workup was positive for a urinary tract infection (UTI), antibiotics had been started, and her father would be released the following day. There was no need for further medication adjustment, as his sudden behavioral changes could be attributed to the infection.

The APRN caring for Dave at the assisted living facility provided education to the staff concerning unmet needs/infection, and all understood that often-sudden behavioral changes were likely not attributable to progressive dementia but could have other causes, with UTI as a primary suspect. This education might have prevented an unnecessary hospital admission.

Renal Disease

The incidence of chronic kidney diseases is rising. Dialysis is now being offered to older and more medically complex patients.32 Statistics from the 2013 U.S. Renal Data System Annual Report note that over 615,000 Americans are being treated for kidney failure; of these, 430,000 are dialysis dependent.33 Moderate to severe cognitive impairment is present in two-thirds of patients receiving dialysis.34 Individuals with end-stage renal disease experience a high symptom burden, and many of their symptoms are left untreated.32 The myriad of symptoms may include uncontrolled pain, lack of energy, pruritus, dyspnea, edema, dry mouth, muscle cramps, restless leg syndrome, sleep disturbance, and constipation. If these symptoms go untreated, quality of life is decreased.35 The estimated 5-year survival for dialysis patients over the age of 65 years is a mere 18%, but few patients in this population have completed advance directives.32 PCPs who may have long-term relationships with these patients need to be cognizant of the overall risks versus benefits of aggressive treatment and counsel their patients, focusing on the individual’s values and goals of care. Patients with end-stage renal disease underuse palliative care, but the large symptom burden, poor quality of life, and lack of advance directives make these patients appropriate candidates for referral to palliative care. The trusted PCP may be most suitable to suggest referral to palliative care specialists. See Chapter 8, Palliative Care on the Medical, Surgical, and Geriatric Patient Care Unit, and Chapter 16, The Advanced Practice Registered Nurse in a Specialty Outpatient Setting to learn more about renal care.

Advance Care Planning in Primary Care

A patient’s relationship with a PCP develops over time; patients with chronic illness can experience a long trajectory, with multiple exacerbations of each chronic disease. Given their longstanding relationships with patients, PCPs are well-suited to facilitate values-based communication concerning goals of care. Advance care planning is a process that is ideally developed over multiple interactions, not during a period of crisis. Changes in a patient’s condition warrant evolving discussions of treatment, including the specific impact of the treatment on the patient’s quality of life and ongoing reassessment of advance care planning. An informed PCP can take into account the synergistic symptom burden, along with the patient’s specific goals and values, and counsel the patient accordingly.

Patient-centered care requires that patients are well-informed about their condition. The success rate of proposed treatment, the overall prognosis with and without treatment, and the expected impact on quality of life are all important aspects for an individual to consider in making a decision regarding treatment and goals of care. Such information may help patients establish their priorities, make informed decisions regarding treatment, and ultimately formulate an advance directive. This advance care planning is best done in the primary care setting because the established ongoing patient–practitioner relationship in the primary care setting gives the practitioner insight into the patient’s support system and values. This familiarity opens the door for an honest, non-intimidating discussion about values, ultimately leading to an advance care plan.

In the quest to avoid repeat hospital admissions, Medicare now reimburses PCPs for transitional care management (TCM). This involves follow-up on patients discharged from an inpatient facility and their transition to home, as well as a face-to-face visit within a required timeframe. This face-to-face visit allows the practitioner to discuss the condition or exacerbation of the condition precipitating the admission, the treatment that was rendered, and its impact on the patient’s quality of life and/or functional status. The potential for repeat exacerbations and the implications for further care can also be discussed. For example, an end-stage COPD patient who was recently hospitalized with an exacerbation requiring intubation may verbalize a request to never endure intubation again, leading to a pertinent goals discussion and the implementation of an advance directive document.

The purpose of an advance directive is to deliver care consistent with a patient’s wishes; it focuses on autonomy and empowers patients when they are no longer able to make decisions for themselves.36 Chronically ill and dying patients can be spared multiple, unwanted care transitions and physical and emotional suffering when advance directives are completed and appropriate care is in place. Making critical decisions during a crisis adds to the emotional stress that a family experiences during a difficult time. Advance care planning can lighten this burden for the family.37 See Chapter 39, Advance Care Planning, for information on the process.

Legislative efforts are beginning to mandate that palliative care be offered to those with chronic disease or life-limiting illnesses. Effective January 1, 2009, California enacted the Terminal Patients’ Right to Know End-of-Life Options Act, California Law AB 2747, making this state the first in the nation to require full disclosure and counseling about available end-of-life options in law and medicine. In 2011, New York State amended the Public Health Law by adding Section 299c, the Palliative Care Information Act, requiring physicians and nurse practitioners to offer information and counseling to patients with advanced life-limiting conditions or illnesses. In 2013, Massachusetts, Rhode Island, Maryland, Connecticut, and New Hampshire discussed legislation directed at increasing access to palliative care.38 Although not all these legislative initiatives passed, a definite policy trend is emerging.

Professional Barriers to Completion of Advance Directives in Primary Care

Research conducted by the Agency for Research and Quality reflects that even though patients value advance care planning discussions and expect professionals to initiate these discussions, fewer than 50% of severely and terminally ill adults have a documented advance directive in their medical record.39 Studies reveal that elderly patients with chronic illness were substantially more satisfied with their PCP when advance directives were discussed.40 Professional barriers to completion of advance directives are found in Box 14.2.41,42

Data from references 41 and 42.

APRN Discomfort with Advance Care Planning/End-of-Life Discussions

Historically, nursing school education has not included palliative or end-of-life education, and exposure was “informal” at best.43 The Liaison Committee on Medical Education (LCME) now requires end-of-life medical education,44 but this has not occurred in graduate nursing programs. Medical schools’ interpretation of this mandate varies widely and can include as little as 2 hours to as many as 80 hours over a 4-year curriculum. This required education can range from occasional lectures and short courses to palliative care rotations.45 While there is an attempt to improve didactic palliative education, education about communication, advance directive discussions, and direct exposure to dying patients continue to be lacking.44

More than any other health professional, nurses are likely to spend the greatest amount of time with patients at the end-of-life. However, this exposure does not give an APRN the knowledge and skill to care for patients with a life-limiting illness. APRN programs, with the exception of specialty palliative APRN tracks, offer limited if any exposure to palliative care competencies. Healthcare professionals who have established long-term relationships with their patients may face the difficulty of “letting go.” Furthermore, end-of-life preferences can be complicated and influenced by religion, race, and culture, requiring providers to be culturally sensitive to the population they serve. When discussions about advance directives become a routine part of a primary care visit, the interactions can be calm and nonthreatening. APRNs can improve their comfort and competence in addressing goals of care through formal academic or continuing education programs that emphasize communication skills. The use of simulation has become increasingly popular in teaching communication strategies. See Chapter 2 for discussion of strategies to improve palliative APRN education.

Strategies to improve completion rates of advance directives in primary care include improved reimbursement, increased patient awareness, and educational efforts geared to improving communication skills among providers. Chapter 39 discusses advance directives. Box 14.3 lists educational resources available to facilitate advance care planning discussions in primary care settings.

Billing and Coding

Legislation was introduced during the 2009 healthcare reform process to reimburse practitioners for time spent counseling Medicare patients on end-of-life options, including how to prepare an advance directive. Some opponents of the larger healthcare reform process took this opportunity to exploit public fears of the dying process and misconstrued this counseling legislation as government rationing of healthcare, promoting this issue in the press as a “death panel.” As a result, this counseling proposition was dropped from the legislation. A similar rule was introduced in 2010; after being initially approved, it was quickly reversed by a new Congress.48 As a result, PCPs are challenged to include these discussions without specific reimbursement.

Inadequate time and lack of reimbursement are barriers to the completion of advance directives in primary care. Yet, advance care planning discussions and the completion of Provider Orders for Life-Sustaining Treatment (POLST) are appropriate for any patient with a chronic, serious, or life-threatening illness. These conversations can be time-consuming, and there is no specific CPT code to bill for these conversations. Furthermore, such discussions can be overwhelming, and the patient may want to consult with family members, necessitating multiple visits over time. PCPs with heavily booked schedules will need to make time for these discussions. In particularly challenging cases, referral to palliative care specialists may be appropriate, and PCPs should be knowledgeable about specialist resources in their community.

To bill for these discussions, documentation must meet specific criteria under Medicare regulations. Private insurers may have specific codes making these discussions reimbursable with specific criteria. Evaluation/management and diagnosis codes are based on location, complexity, and effort. When counseling/information-giving represents more than 50% of the patient visit, it may be most appropriate to bill by time, and the provider should select an evaluation and management code that corresponds to the total time of the face-to-face visit. In the outpatient/office setting, billing by time is limited to the face-to-face time spent with the patient. The Medicare Claims Processing Manual specifies that only physicians, physician assistants, or APRNs will be reimbursed for counseling. Documentation must reflect the amount of time spent with the patient and the nature of the counseling/information-giving. Explicit description of the complicating factors or prognosis is advisable. Acceptable diagnostic codes may be either pathophysiological or symptom-related.49 Further details of reimbursement for APRN palliative care are detailed in Chapter 4, Reimbursement for the Palliative Advanced Practice Registered Nurse.

Appropriate tools for advance directive formulation can help to improve completion rates. Tools must be appropriate for the patient’s literacy level and language. The APRN PCP should consider using tools that are available in multiple languages and are written at a fifth-grade reading level or accompanied by interactive resources.50 Box 14.4 provides both online and print suggestions. Advance care planning is covered in Chapter 39.

Prognostication

“How long do I have?” This is the question most frequently asked by patients facing a terminal illness or debilitating condition. Prognosis is a prediction of the outcome of a disease based on medical knowledge and experience.51 Prognosis can affect treatment decisions as well as eligibility for hospice care. Diseases that result in chronic organ failure can have multiple exacerbations, any of which could result in death, making prognostication extremely difficult even for skilled palliative care specialists. The rate of decline in functional status can be a key indicator in determining prognosis. These tools can help palliative care specialists with prognostication:

  1. a. The Palliative Performance Scale (PPS) is a reliable and valid tool for the measurement of performance status in palliative care. It uses the patient’s functional status to predict survival. The PPS evaluates ambulatory status, activity level, evidence of disease, ability to perform self-care, and level of consciousness.52 Periodic measurements document the evolving physical deterioration of an individual. The rapidity of the functional decline likely corresponds with rapid deterioration and ultimately a shorter survival.53

  2. b. The surprise question: “Would I be surprised if this patient died in the next year?” This simple question has been recognized as a tool to improve end-of-life care in both primary care and dialysis populations. A “no” answer to this question can serve to identify patients with a poor prognosis who would be appropriate for palliative care.54

  3. c. Mobile applications containing prognostic indicators exist for a multitude of individual medical conditions.

Boxes 14.5 and 14.6 list other resources available to assist with prognostication in advanced illness.

Conclusion

Growing evidence demonstrates the benefits of early palliative care for patients with serious illness, and palliative care shares many common goals with primary care. Each addresses the patient with serious illness within the context of community, with a focus on care over time, and emphasizing symptom support and communication.55

APRN PCPs are well-suited to incorporate palliative care into their practices. The unique blend of medical knowledge with an educational background based on a holistic nursing model makes the APRN a prime candidate to assume the role of PCP, able to deliver high-quality, low-cost, patient-centered healthcare. Practicing within a primary care framework allows the APRN to establish an ongoing relationship with the patient and family, which facilitates an honest, trusting bond and positions the APRN to monitor the patient’s progress over time. This ongoing relationship can allow the primary care APRN to discuss goals of care with an educated patient/family in a nonemergent environment, revising the advance care plan as needed. APRNs who integrate palliative care into their primary care practices should understand the range of disease trajectories and multidimensional symptoms, as well as the communication skills needed for advance care planning and end-of-life decision making. Once adept at these skills of symptom management and care planning, primary care APRNs can perform an integral role in incorporating palliative care and serving as a role model to others within their practice.

References

1.AHRQ. Primary care workforce: Facts and figures 2012. Available at http://www.ahrq.gov/research/findings/factsheets/primary/pcworkforce/index.html. Accessed August 1, 2014.

2.Kaiser Family Foundation. Improving access to adult primary care in Medicaid: Exploring the potential role of nurse practitioners and physician assistants. 2011. Available at http://kff-medicaid-issue-brief/improving-access-to-adult primary-care-in/. Accessed August 14, 2014.

3.Pohl JM, Hanson C, Newland JA, et al. Unleashing nurse practitioners’ potential to deliver primary care and lead teams. Health Affairs. 2010; 29: 900–5.Find this resource:

4.Vincent GK, Velkoff VA. The next four decades. The older population in the United States: 2010 to 2015. Population estimates. 2010. Available at http://www.census.gov/prod/2010pubs/p25-1138.pdf. Accessed August 13, 2014.

5.AHRQ. Patient-centered medical home. 2014. Available at http://pcmh.ahrq.gov/page/defining-pcmh. Accessed August 2, 2014.

6.Dahlin C.Palliative Nursing: Scope and Standards of Practice. Silver Spring, MD: American Nurses Association and Hospice and Palliative Nurses Association; 2013.Find this resource:

    7.Quill T, Abernethy AP. Generalist plus specialist palliative care: creating a more sustainable model. N Engl J Med. 2013; 368: 1173–5.Find this resource:

    8.Health Resources and Services Administration (HRSA). Projecting the supply and demand for primary care practitioners through 2020. 2013. Available at http://bhpr.hrsa.gov/healthworkforce/supplydemand/usworkforce/primarycare. Accessed August 4, 2014.

    9.National Consensus Project for Quality Palliative Care. Clinical practice guidelines for quality palliative care. 3rd ed. 2013. Available at http://www.nationalconsensusproject.org. Accessed August 1, 2014.

    10.Prince-Paul M, Burant CJ, Saltzman JN, Teston LJ, Matthews CR. The effects of integrating an advanced practice palliative care nurse in a community oncology center: a pilot study. J Support Oncol. 2010; 8(1): 21–7.Find this resource:

    11.Owens EK, Burson S, Green M, McGoodwin W, Isaac M. Primary palliative care clinic pilot project demonstrates benefits of a nurse practitioner-directed clinic providing primary and palliative care. J Am Acad Nurse Practitioners. 2012; 24(1): 52–8.Find this resource:

    12.Administration on Aging. Projected future growth of the older population. Available at http://agingstatistics.gov. Accessed July 20, 2014.

    13.Tinetti ME, Fried TR, Boyd, CM. Designing health care for the most common chronic condition: multimorbidity. JAMA. 2012; 307: 2493–4.Find this resource:

    14.Maxwell TL. Caring for those with chronic illness. In Ferrell BR, Coyle N, eds., Oxford Textbook of Palliative Nursing. 3rd ed. New York, NY: Oxford University Press; 2010:687–99.Find this resource:

    15.Centers for Disease Control and Prevention. Heart Failure Fact Sheet. 2014. Available at http://www.cdc.gov/DHDSP/data_statistics/fact_sheets/fs_heart_failure.htm. Accessed August 4, 2014.

    16.American Lung Association. COPD Fact Sheet. 2011. Available at http://www.lung.org/lung-disease/copd/resources/facts-figures/COPD-Fact-Sheet.html. Accessed August 4, 2014.

    17.Janssen DJ, Spruit MA, Uszko-Lencer NH, et al. Symptoms, comorbidities, and health care in advanced chronic obstructive pulmonary disease or chronic heart failure. J Palliat Med. 2011; 14: 735–43.Find this resource:

    18.Spathis A, Booth S. End of life care in chronic obstructive pulmonary disease: in search of a good death. Intl J COPD. 2008; 3: 11–29.Find this resource:

    19.Siegel R, Desantis C, Virgo K, et al. Cancer treatment and survivorship statistics. CA Cancer J Clin. 2012; 62: 220–41.Find this resource:

    20.Hewitt M, Greenfield S, Stovall E, eds. From cancer patient to cancer survivor: Lost in transition. 2005. Available at http://www.nap.edu/catalog.php?record_id=11468. Accessed August 4, 2014.

    21.McCabe MS, Bhatia S, Oeffinger KC, et al. American Society of Clinical Oncology statement: Achieving high-quality cancer survivorship care. J Clin Oncol. 2013; 31: 631–9.Find this resource:

    22.Bower J, Bak K, Berger A, et al. Screening, assessment, and management of fatigue in adult survivors of cancer: An American Society of Clinical Oncology clinical practice guideline adaptation. J Clin Oncol. 2014; 32: 1840–50.Find this resource:

    23.Anderson BL, DeRubeis RJ, Berman BS, et al. Screening, assessment, and care of anxiety and depressive symptoms in adults with cancer: An American Society of Clinical Oncology guideline adaptation. J Clin Oncol. 2014; 32: 1605–19.Find this resource:

    24.Hershman D, Lacchetti C, Dworkin R, et al. Prevention and management of chemotherapy-induced peripheral neuropathy in survivors of adult cancers: American Society of Clinical Oncology clinical practice guideline. J Clin Oncol. 2014; 32: 1941–67.Find this resource:

    25.Xue Q. The frailty syndrome: Definition and natural history. Clin Geriatr Med. 2014; 27: 1–15.Find this resource:

    26.Fried LP, Tangen CM, Watson J. Frailty in older adults: Evidence for a phenotype. J Gerontol. 2001; 56(3): M146–56.Find this resource:

    27.Koller K, Rockwood K. Frailty in older adults: Implications for end-of-life care. Cleveland Clin J Med. 2013; 80: 168–74.Find this resource:

    28.Alzheimer’s Association. Alzheimer’s facts and figures. 2014. Available at http://www.alz.org/alzheimers_disease_facts_and_figures.asp. Accessed August 4, 2014.

    29.Gallagher M, Long CO. Advanced dementia care: Demystifying behaviors, addressing pain, and maximizing comfort. J Hospice Palliatr Nurs. 2011; 13: 70–8.Find this resource:

    30.Ersek M, Carpenter JG. Geriatric palliative care in long term care settings with a focus on nursing homes. J Palliat Med. 2013; 16: 1180–7.Find this resource:

    31.Van der Steen JT. Dying with dementia: What we know after more than a decade of research. J Alzheimers Dis. 2010; 22: 37–52.Find this resource:

    32.O’Connor NR, Corcoran AM. End-stage renal disease: Symptom management and advance care planning. Am Family Physician. 2012; 85: 705–10.Find this resource:

    33.National Kidney Foundation. End-Stage Renal Disease in the United States. 2014. Available at http://www.kidney.org. Accessed August 4, 2014.

    34.Murray AM. Cognitive impairment in the aging dialysis and chronic disease populations: an occult burden. Adv Chron Kidney Dis. 2008; 15:123–32.Find this resource:

    35.Claxton RN, Blackhall L, Weisbond S, et al. Undertreatment of symptoms in patients on maintenance hemodialysis. J Pain Sympt Manag. 2010; 39: 211–8.Find this resource:

    36.Tung EE, Vickers KS, Lackore K, et al. Clinical decision support technology to introduce advance care planning in the primary care setting. Am J Hosp Palliat Med. 2011; 28: 230–5.Find this resource:

    37.Hinders D. Advance directives: Limitations to completion. Am J Hosp Palliat Med. 2011; 24: 286–9.Find this resource:

      38.Warner E.Palliative in Practice. 2013. Available at http://palliativeinpractice.org/2013/07/. Accessed August 1, 2014.

      39.Detering KM, Hancock AD, Reade MC, et al. The impact of advance care planning on end of life care in elderly patients: randomized control trial. BMJ 2010; 340. http://dx.doi.org/10.1136/bmj.c1345Find this resource:

      40.Tierney WM, Dexter PR, Gramelspacher GP. The effect of discussions about advance directives on patients’ satisfaction with primary care. J Gen Intern Med. 2001; 16: 32–40.Find this resource:

      41.Slort W, Schweitzer BP, Blankenstein AH, et al. Perceived barriers and facilitators for general practitioner–patient communication in palliative care: A systematic review. Palliat Med. 2011; 25: 613–29.Find this resource:

      42.Spoelhof GD, Elliott B. Implementing advance directives in office practice. Am Family Physician. 2012; 85: 461–6.Find this resource:

      43.Block SD. Medical education in end-of-life care: The status of reform. J Palliat Med. 2002; 5: 243–8.Find this resource:

      44.Billings ME, Engelberg R, Curtis JR, et al. Determinants of medical students’ perceived preparation to perform end-of-life care, quality of end-of-life care education, and attitudes toward end-of-life care. J Palliat Med. 2010; 13: 319–26.Find this resource:

      45.Horowitz R, Gramling R, Quill T. Palliative care education in US medical schools. Med Educ. 2014; 48: 59–66.Find this resource:

      46.Center to Advance Palliative Care. Fast Facts. Available at https://www.capc.org/fast-facts/ Accessed August 10, 2015.

      47.End-of-Life Nursing Education Consortium (ELNEC). Available at http://www.aacn.nche.edu/elnec. Accessed August 10, 2014.

      48.Zeytinoglu M. Talking it out: Helping our patients live better while dying. Ann Internal Med. 2011; 154: 830–2.Find this resource:

      49.Von Gunten C.Coding and billing for physician services in palliative care. 2001. Available at https://www.capc.org/fast-facts/ (formerly http://www.eperc.mcw.edu/EPERC/FastFactsIndex/ff_048.htm. Accessed August 10, 2014).

      50.Fischer SM, Sauala A, Min S, et al. Advance directive discussions: Lost in translation or lost opportunities. J Palliat Med. 2001; 15: 86–92.Find this resource:

      51.Sudore RL, Knight SJ, McMahan RD, et al. A novel website to prepare diverse older adults for decision making and advance care planning: A pilot study. J Pain Symp Manag. 2014; 47: 674–86.Find this resource:

        52.Glare PA, Sinclair CT. Palliative medicine review: Prognostication. J Palliat Med. 2008; 11: 84–94.Find this resource:

        53.Chan E, Wu H, Chan Y. Revisiting the palliative performance scale: Change in scores during disease trajectory predicts survival. Palliat Med. 2012; 27: 367–74.Find this resource:

        54.Moss AH, Lunney JR, Culp S, et al. Prognostic significance of the “surprise” question in cancer patients. J Palliat Med. 2010; 13: 837–40.Find this resource:

        55.McCormick E, Chia E, Meier D. Integrating palliative care into primary care. Mt Sinai J Med. 2012; 79: 579–85.Find this resource: