Integrating palliative care into primary care for patients with chronic, life-limiting conditions 2.0 CONTACT HOURS Integrating palliative care into primary care for patients with chronic, life-limiting conditions Abstract: As longevity increases, individuals with chronic, life-limiting conditions will live longer with disease burden and functional decline. Nurse practitioners can integrate symptom management, early decision-making, and supportive care into the primary care setting to improve quality of life and decrease economic and emotional impact at the end of life. By Ann Selena Cleary, DNS, RN, NP-C lthough life expectancy is increasing worldwide, living longer is not always syn- onymous with a greater number of healthy years, as increasing age and risk for A developing a chronic, life-limiting condition are related. Approximately 20 mil- lion older individuals in the United States have at least two or more chronic, life-limiting health conditions; the most common are diabetes mellitus, hypertension, high cholesterol, and heart disease.1 These conditions last more than 1 year, require ongoing medical care, and affect inde- pendence and activities of daily living.2 Increased ED and offi ce visits, hospitalizations, and home healthcare services are associated with increasing age and multiple chronic conditions. In 2010, more than half of Medicare expenditure went to hospitalizations for 15% of the Medicare population, a disproportionate amount.3 In essence, this population is likely to experience increasing symptoms and a decrease in quality of life for several years prior to death. The majority of older adults in the United States have health insurance under Medicare, which includes a hospice benefi t for the last 6 months of life. However, patients could live months to years with increasing symptoms and worsening quality of life prior to hospice eligibility. During this time, care goals should focus on symptom management, psychosocial support, and advance care planning. / iStock © Tashi-Delek Keywords: end-of-life care, life-limiting conditions, palliative care 42 The Nurse Practitioner • Vol. 41, No. 3 www.tnpj.com Copyright © 2016 Wolters Kluwer Health, Inc. All rights reserved. Integrating palliative care into primary care for patients with chronic, life-limiting conditions www.tnpj.com The Nurse Practitioner • March 2016 43 Copyright © 2016 Wolters Kluwer Health, Inc. All rights reserved. Integrating palliative care into primary care for patients with chronic, life-limiting conditions The purpose of this article is to increase knowledge, During an extensive review of palliative care literature, clarify misconceptions, and raise awareness among primary Van Mechelen and colleagues found that 30 years of pal- care nurse practitioners (NPs) who care for older adults liative care research had been conducted without a clear with chronic, life-limiting health conditions. Resources and defi nition of the palliative care patient.6 This lack of clarity strategies are outlined to assist the NP to identify when and may refl ect the fact that end-of-life care is still being es- how to integrate palliative care into primary care if hospice tablished. Professional organizations representing hospice care is not considered an option. and palliative care only emerged within the last 30 years, with palliative medicine a board-certifi ed subspecialty of ■ Case study medicine since 2006.7 Nursing certification and educa- Ms. C was an 80-year-old woman living with her son, grand- tion have also expanded and now include seven categories daughter, and one great-grandchild in an urban, three- for certification, including advanced practice registered bedroom apartment. Her medical diagnoses included: type nurses. Approximately 17,000 U.S. nurses have been certi- 2 diabetes mellitus, hypertension, atrial fi brillation, heart fi ed since 1999 when certifi cation was expanded to include failure (HF), coronary artery disease, oxygen-dependent both hospice and palliative care nurses; however, there is no chronic obstructive pulmonary disease (COPD), osteoar- breakdown of certifi ed NPs or registered nurses.8 thritis, peripheral neuropathy, kidney dysfunction, diabetic Patient and provider communication barriers have been retinopathy, depression, and a chronic venous stasis ulcer on identifi ed; however, nuances (such as connotations attached a lower extremity. to terms) are also signifi cant.9 The choice of one term over During the last 8 months of her life, Ms. C experienced another can alter patient communication signifi cantly, as one several exacerbations of COPD (requiring hospitalization) study found when clinicians used or avoided using a term such and was intubated for an exacerbation of HF during the as “palliative” depending on the message they wanted to com- third hospitalization. The patient received care for the ve- municate. For example, cardiologists who wanted to initiate nous stasis ulcer at a wound-care center and also received an end-of-life discussion with patients diagnosed with HF home care services from a long-term care program that suggested referral to a “palliative medicine specialist” to com- provided a home healthcare aide and an RN who visited municate a poor prognosis to the patient. This often occurred Ms. C monthly and as needed. without any further explanation about overall condition or Her treatment regimen included subcutaneous insulin, why they recommended the referral. Conversely, palliative metered-dose inhalers for COPD, and approximately 10 care specialists initially avoided using their title or the word oral medications daily. Ms. C walked slowly with a walker, “palliative,” preferring to describe their role and how they could needed assistance with all activities of daily living, and in help the patient, thereby avoiding what they believed to be the last 3 months of her life, left her bedroom only to use negative connotations the patient may have about their role.10 the bathroom or attend medical appointments. Several days after discharge from the third rehospitalization while ■ Hospice care traveling to a follow-up cardiology appointment, she suf- In contrast, hospice care is less likely to be misunderstood. fered sudden cardiac arrest and died. Ms. C had completed Hospice services in the United States, as provided to Medi- a healthcare proxy but had no other advance directive at care recipients under the Medicare Hospice Benefi t, have the time of her death. changed little since the 1980s. Enrollment requires referral from the primary care provider (PCP) and certifi cation that ■ End-of-life terms and models of care the patient has 6 months or less to live. The patient exchanges Although many aspects of this case study may be familiar one benefi t for another, thereby waiving regular Medicare to NPs, the transition taking place in end-of-life care over benefi ts for hospice benefi ts, which results in all care being the last 2 decades may be unfamiliar, as new models of care coordinated and provided by the hospice.11 In 2014, a new have emerged.4,5 In addition, terms used in end-of-life care model (the Medicare Care Choices Model) was introduced are still not universally understood, creating confusion to allow patients with advanced cancer, COPD, HF, or HIV/ among healthcare providers (HCPs) and the public. The AIDS to receive both palliative and curative services. It should terms “hospice,” “terminal care,” “palliative care,” and “end- be noted that NPs are not authorized to order hospice care, of-life care” have been and continue to be used interchange- although they may recertify such care after it has been or- ably—both in clinical practice and the literature. These dered by a physician.12 terms describe care for patients diagnosed with serious, The term “palliative care” has evolved considerably over life-limiting, and nonlife-limiting (but chronic) conditions; the last several decades. Until the 1990s, it was frequently used however, these are not interchangeable terms.4-6 interchangeably with the term “hospice” and mostly to describe 44 The Nurse Practitioner • Vol. 41, No. 3 www.tnpj.com Copyright © 2016 Wolters Kluwer Health, Inc. All rights reserved. Integrating palliative care into primary care for patients with chronic, life-limiting conditions the dying cancer patient. During this time, a conceptual change led to a more philosophical approach to patient care with any Quality of life and symptom burden at diagnosis condition that could not be cured, although the patient was not imminently dying. This led to the establishment of specialized High level palliative care programs in hospitals and the community; how- Quality of life at diagnosis ever, unlike hospice care, there is no reimbursement provision, so these programs are reimbursed as other medical services.4 The recent Medicare Care Choices Model allows primary care Palliative and service reimbursement under Medicare (with the hospice por- Primary care Hospice care primary care tion reimbursed by a fl at monthly fee).5 The shift in using the term “palliative care” can also be traced to changes in the World Health Organization’s (WHO’s) defi nition, which initially only applied to patients with cancer. The most recent defi nition includes other life- Symptoms at diagnosis limiting conditions and associated symptoms—not only Low level pain—but all dimensions of the patient’s life, including family Time or other caregivers.13,14 Despite differences from one defi nition This abstract representation may assist NPs in identify- to another, the commonality is integrating palliative care into ing where a patient is in the disease course so as to proactively plan care decisions. As symptoms progress, usual active treatment rather than following treatment that palliative care becomes a greater focus. fails or as a replacement.4 Furthermore, the fi nal point in the WHO defi nition (that of concurrent, active treatment and Source: The fi gure was developed by Ann Selena Cleary, DNS, RN, NP-C. palliative care) has been demonstrated to improve quality of life and life expectancy in patients with lung cancer.15 tween symptoms and quality of life, care will transition over time (see Quality of life and symptom burden at diagnosis).