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Palliative Care Continues to Grow in Hospital and Outpatient Settings, a Paucity of Home-Based Palliative Services Remains

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Palliative Care Continues to Grow in Hospital and Outpatient Settings, a Paucity of Home-Based Palliative Services Remains 1.5 contact hours ABSTRACT: Although the specialty of palliative nursing and palliative care continues to grow in hospital and outpatient settings, a paucity of home-based palliative services remains. This article discusses a new paradigm of faith-based palliative care ministry using faith community nurses (FCNs). Under the leadership of a palliative care doula (a nurse expert in palliative care), nurses in the faith community can offer critical support to those with serious illness. Models such as this provide stimulating content for FCN practice and opportunity to broaden health ministry within faith communities. KEY WORDS: faith community nursing, health ministry, hospice, palliative care, palliative care doula, serious illness By Judy C. Lentz AN INNOVATIVE ROLE FOR FAITH COMMUNITY NURSING Palliative Care The understanding that palliative care could provide benefits to patients with serious illnesses before the last six months of life is a more recent phenomenon. BSIP SA / Alamy Stock Photo 112 JCN/Volume 35, Number 2 journalofchristiannursing.com Copyright © 2018 InterVarsity Christian Fellowship. Unauthorized reproduction of this article is prohibited. lthough palliative nursing is serious illnesses. The understanding palliative care (NINR, 2011). Palliative considered one of the new- that palliative care could provide many care does not replace healthcare er nursing specialties, nurses benefits to patients with serious and services but augments and coordinates have cared for the seriously life-threatening illnesses before the last 6 care to help meet patient and family Aill and the dying since the beginning months of life is a more recent needs and goals. of nursing. The American Nurses phenomenon. This concept of extend- Palliative nursing is defined as both Association (ANA) and Hospice & ing palliative care to the initial diagno- an art (being present) and a science (evi- Palliative Nurses Association (HPNA) sis with serious and life-threatening dence-based), for patients with acute or state that “palliative care is embedded illness is becoming the norm. Palliative chronic potentially life-limiting in all nursing practice in the relief of care emerged from the hospice model illnesses, with outcomes focusing on suffering; all nurses practice Primary and began the palliative nursing quality of life, as well as alleviating Palliative Nursing” (2014, p. 19). All specialty area of practice. suffering (ANA & HPNA, 2014; nurses would benefit from additional Palliative care for adults and children Lynch, Dahlin, Hultman, & Coakley, learning about palliative care. In ad- is offered when individuals suffer from 2011). The NINR (2011) explains, dition to increasing knowledge about pain or other symptoms due to any palliative nursing, this article provides serious illness; experience physical or Palliative care is comprehen- faith community nurses (FCNs) with emotional pain that is not under sive treatment of the discomfort, symptoms and stress of serious illness. It does not replace your primary treatment; palliative care works together with the primary treatment you’re receiving. The goal is to prevent and ease suf- Ministry fering and improve your quality of life. (p. 1) an innovative model of a palliative care control; and/or need help in under- ministry through the faith community. standing their illness, future, and Palliative care has been in existence Models such as this provide stimulating coordinating their healthcare (Hospice for nearly a quarter of a century. Much content for FCN practice and address and Palliative Credentialing Center progress has extended the availability additional opportunities to broaden [HPCC], n.d.; National Institute of and effectiveness of palliative care. health ministries within faith settings. Nursing Research [NINR], 2011). The Currently, more than 1,700 hospitals National Consensus Project for Quality with 50 or more beds offer formal EMERGENCE OF Palliative Care (NCP) offers the widely palliative care services, whereas smaller PALLIATIVE CARE accepted definition of palliative care: hospitals are realizing the benefits and Hospice nursing emerged in the doing their best to create some form of mid-20th century with the hospice Palliative Care means patient- this service (Center to Advance movement, as the understanding of and family-centered care that Palliative Care [CAPC], n.d.). Training how to give care at the end of life optimizes quality of life by for palliative care has grown as formal grew. Due to U.S. Medicare regulations anticipating, preventing, and organizations for palliative care and the thinking about end of life, the treating suffering. Palliative care emerged. When referral to formal or hospice movement became associated throughout the continuum of hospital-based palliative care is made by with the last 6 months of life (ANA & illness involves addressing the a provider, most insurance companies HPNA, 2014, p. 16). Originally, the physical, intellectual, emotional, will cover the cost of palliative care hospice model of care was based on social, and spiritual needs and (CAPC; NINR, 2011). care of cancer patients rather than all [facilitating] patient autonomy, However, although hospital-based access to information, and palliative care services have expanded, a choice. (NCP, as cited in ANA paucity of home-based services remain. Judy C. Lentz, MSN, RN, FPCN, is an advanced practice palliative care nurse. She & HPNA, 2014, p. 1) With life spans lengthening, care needs created the role of palliative care doula to in the home are significantly increas- serve people as they walk the journey to Individuals with serious and chronic ing. An estimated 45 million Americans end of life. As a faith community nurse, Judy values her ministry in service to God. illnesses such as heart, lung, and renal live with one or more chronic condi- The author declares no conflict of interest. diseases; cancer; cystic fibrosis; diabetes; tions that continue to worsen (Institute Accepted by peer-review 8/27/2017. Alzheimer’s disease; neurological of Medicine, 2015). These statistics *All names changed to protect privacy. disorders; and autoimmune deficiency emphasize that many individuals Copyright © 2018 InterVarsity Christian Fellowship/USA. disorder, are among the diseases that desperately need palliative care DOI:10.1097/CNJ.0000000000000478 research has shown benefit from services. journalofchristiannursing.com JCN/April-June 2018 113 Copyright © 2018 InterVarsity Christian Fellowship. Unauthorized reproduction of this article is prohibited. PALLIATIVE CARE SERVICES navigate the complex healthcare seemingly eligible for hospice, they can When patients are admitted to system. In the early stages of a serious be told palliative care is not an option if hospitals that offer palliative care, illness, care goals may not be discussed they continue aggressive therapy. Aggres- triggers occur that automatically alert by the physician or other providers. sive therapy can include medications not a team of palliative professionals, who Patients and families may not be told covered by insurance, so the family must go into motion. The team seeks what might happen next or taught to pay premium dollars for these medica- quality of life, as defined by the patient, understand the consequences of poor tions. As hospice pays for medications and works diligently to match the disease management, such as with an prescribed to treat the disease, hospices patient-stated care goals with the care insulin-dependent diabetic. decline the person’s eligibility when provided. These fortunate patients When an individual or family asks they opt for aggressive treatment that usually have successful outcomes in about palliative care, many are told, engenders high expenses (U.S. Centers terms of achieving quality of life and “You are not ready for that yet,” as if for Medicare and Medicaid Services, meeting their wishes. Family members there is a specific time when palliative n.d.). In some cases, it is determined that and patients enthusiastically vocalize care should be offered. Conversely, after trying these costly medications, their appreciation. researchers have found an improve- they are ineffective because the disease But what about individuals earlier in ment in quality of life and longer has advanced, or the morphology has the disease process of serious illness survival in patients who received early changed, preventing an efficacious who need benefits? Many struggle palliative care at diagnosis (Bakitas et benefit. In the Medicare payment with the concerns of their disease. al., 2009; Temel et al., 2010). system, adults are not permitted to seek Unless they have been formally An underlying assumption of aggressive therapy simultaneously with admitted to an outpatient palliative palliative care is to offer interdisciplinary hospice care. Fortunately, this is different care program, these individuals team care from the moment of diagnosis for the pediatric community in the typically lack advocacy, support, and and continue throughout the trajectory Pediatric Concurrent Care program education. They may be overwhelmed, of the serious illness, despite the number (Pediatric Palliative Care, 2012). bewildered, and frustrated with the of years that might transpire (ANA & Another area of concern is a lack of deterioration of their health, as well as HPNA, 2014, p. 2). When the person’s communication and continuity of care have limited understanding of how to disease progresses to where they are between providers. If admitted
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