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

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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

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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.

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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 to a nursing home, often the person’s primary physician and specialists are no longer the care providers. Instead, the What if palliative care was not hospice, hospital, or individual is under the care of the community-based, but faith-based? nursing home physician. Some internal regulations and payment systems are punitive to physicians, causing those physicians to make difficult decisions that may not be in the patient’s favor (such as the 30-day mortality postop- erative rate) (Hansen, Hjortdal, Andreasen, Mortensen, & Jakobsen, 2015). This paper presents a model of providing support, advocacy, and education for community-based individuals who are not eligible for or ready to choose hospice. This model is designed for the faith community and provides an example of palliative care ministries, utilizing a Palliative Care Doula (PCD) who is a palliative care expert, and a palliative care ministry team made up of nurses.

THE PALLIATIVE CARE DOULA The term doula is borrowed from the U.S. obstetrics field, dating back 50

BSIP SA / Alamy Stock Photo years. The obstetrical doula supports the

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Copyright © 2018 InterVarsity Christian Fellowship. Unauthorized reproduction of this article is prohibited. Faith community nurses sensing God’s call to begin a palliative care ministry can obtain training for palliative care and develop the PCD role.

mother through the birth process, electronically, or in person, according have been identified and served. following the wishes of the mother to the individual’s preferences, occur- Because this ministry is offered through (Associates in Obstetrics and Gynecol- ring monthly, weekly, or daily, if the faith community and is free of ogy, 2017). In this case, the PCD necessary. This description of the charge, many are comfortable seeking serves, provides advocacy, support, services the PCD offers describes out the palliative care ministry. and education to the person and family what I have practiced in the commu- Palliative care ministry in the faith experiencing a serious illness (Horovitz, nity setting. community is unique but replicable. By 2017; Lentz, 2014). The PCD offers offering information regarding the opportunity to give voice to those who A NEW PARADIGM: physical aspects of a person’s serious suffer and wonder what might lie ahead. PALLIATIVE CARE MINISTRY illness, the ministry team of nurses led Who can benefit from a PCD? What if palliative care was not by a PCD provides assurance, leading The care of those experiencing serious hospice-, hospital-, or community- to peace of mind and associated illnesses often is fragmented, provided based, but faith-based? Five years ago, biopsychosocial and spiritual comfort. by a specialist related to the person’s God challenged me to offer a Palliative In many ways, palliative care ministry is primary diagnosis. Some patients may Care Ministry in my church. My similar to the advocacy role FCNs be in communities where palliative care clinical experience is in hospice and often play for parishioners needing is limited or unavailable, or decline palliative care as an advanced practice, healthcare support and services. A palliative care services due to cost or certified palliative care nurse. I thought, difference is the focus on enhancing because they think it is for end of life where could it be better to address the needs quality of life in serious illness. (like hospice). These individuals are of the mind, body, and spirit of those experi- This model has now been replicated medically managed and may have little encing serious illnesses, than in the faith in a second church, where I reside information about what might come community? The ministry was intended seasonally. The ministry process was next. Furthermore, the healthcare system to assure holistic would care be replicated over the past year, and again, is confusing and frustrating. The patient received by parishioners experiencing has proven beneficial. Because the min- who knows little about medical serious and life-threatening illnesses, by istry is a service of support, advocacy, terminology and is experiencing augmenting pastoral spiritual ministry. and education, these contacts can be disease-related problems is called upon After exploring this concept with made by phone, by electronic means, to bridge communication gaps. The church leadership and acquiring the and by periodic visits. The PCD PCD seeks to overcome communication necessary approval to move forward, coordinator not only leads the team barriers by working directly with the other interested nurses from the but offers continuing education on individual to have the necessary congregation were recruited. Educa- palliative care, while coordinating and conversations to pave a smooth road on tion in palliative philosophy and care serving parishioners who desire these this journey of serious illness. was the next step, followed by commu- specialty ministry services. With prayer In particular, the PCD helps the nicating the new ministry to church and God’s guidance, both ministries individual articulate his/her definition membership. The ministry was then have been well received and continue of quality of life, asks about current offered to those on the prayer concerns to grow. care goals, inquires about appointments, list of the church with serious illness. explains what is happening pathophysi- Individuals interested in participating ASPECTS OF PALLIATIVE MINISTRY ologically, and offers explanations of were assigned to a palliative care Numerous important issues have healthcare information and treatment ministry partner. Regular contacts been identified, based on our experi- options. Frequently, the PCD suggests between the ministry partners and ence helping parishioners. These issues questions to ask providers, offers to clients were established, and team have been addressed with successful accompany him/her to a physician members maintained services accord- outcomes for appreciative parishioners visit, attends a family conference, and is ing to need. The expert PCD served as and their family members. From our present in crisis. The PCD works the ministry coordinator and overseer. work in palliative care ministry, we directly with the patient/family and After 3 years, this ministry has realize the need to offer the following conducts the necessary conversations to grown, with 25 individuals receiving points of care: support, educate, and advocate for the direct services. Several participants have • Goals-of-care discussions with pa- wishes of the seriously ill person. These succumbed to their disease since the tients and/or family; conversations can occur by phone, ministry began, and new participants • Understanding of disease progression; journalofchristiannursing.com JCN/April-June 2018 115

Copyright © 2018 InterVarsity Christian Fellowship. Unauthorized reproduction of this article is prohibited. • Support and assistance in commu- care ministry is right for your faith receive assistance. As a ministry nicating needs, such as when formal community and something God may recipient and participant in her care, palliative care services are refused; be calling you to do. M. F. has received firm guidance, • Eligibility or ineligibility of hospice accountability, and education regarding due to preference for aggressive CASE STUDIES IN PALLIATIVE the long-term effects of nonadherence therapy; MINISTRY to the diabetic treatment regimen. Her • Communication gaps in healthcare; To further understand palliative care education includes a weekly luncheon • Bridging gaps of care; ministry, four case studies with provided by her primary palliative care • Regulatory and insurance barriers successful outcomes due to services of ministry team member. She makes for health, palliative, and hospice care; two palliative care ministers and a PCD recipes from a diabetic slow cooker • Understanding complex medical as coordinator, are offered. cookbook to discourage the use of fast management. Significant Diabetes Mellitus. M. F.* foods and frozen dinners for this is a 50-year-old woman with diabetes. working wife and mother. The team What if you are not a palliative care She is insulin dependent and takes member provides objective data when nurse but serving as an FCN? Faith metformin twice a day. However, she has educating M.F. about the importance community nurses sensing God’s call to a poor understanding of the negative of frequent, regular, consistent glucom- begin a palliative care ministry can outcomes and long-term consequences eter readings. The weekly lunches obtain training for palliative care and of diabetes and poor compliance. When provide viable mealtime options, develop the PCD role. The HPNA and the palliative care ministry team was first educational sessions for data review, as HPCC offer extensive education and alerted by prayer requests for her well as prayer time for spiritual support certification in palliative care (see challenges with disease management and encouragement. Above all, this Further Resources). Basic certification adherence, she had stopped taking her continuing ministry provides support, is available for registered nurses, for insulin, due to the ever-increasing costs, advocacy, and the education needed by advanced practice palliative care, for and stopped checking her blood sugars. M.F. to lessen the long-term negative nursing assistants, and in pediatric and As a result, her hemoglobin A1C was 15. effects of hyperglycemia. neonatal loss (HPCC, 2016). Online Her physician was caring, sympathetic, The successful outcome of palliative education and national conferences can and tolerant of her challenges with care: M. F. reports that her A1C was help any nurse with training in disease management. reduced from 15 to 7.6. She states she palliative care. Table 1 offers sugges- After educating M. F. on about the is less fearful of her diabetes now and tions for how to discern if a palliative palliative care ministry, She decided to feels hopeful for the future.

TABLE 1: CONSIDERING A PALLIATIVE CARE MINISTRY 1 Pray for God’s leading Assess the faith community and needs for 2 palliative care ministry Discuss with existing Health Ministry to see 3 where a palliative care ministry would fit Approach the pastor/church leaders about 4 the vision and needs you discovered Develop a vision for the ministry in your 5 faith community Seek training if you are not already experi- 6 enced in palliative care 7 Recruit other nurses for the team Develop protocols for assessment of poten- tial clients, and how and what services will 8 be provided Announce the palliative care ministry to the 9 congregation

Receive referrals

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Copyright © 2018 InterVarsity Christian Fellowship. Unauthorized reproduction of this article is prohibited. Oncologic emergency. A. L.* was age of the patient’s condition. A. L. died 2 81 and active, having retired 1 week weeks later in inpatient hospice care, a Further Resources before he began experiencing severe quadriplegic but having achieved his shoulder pain. An orthopedic specialist goals of care: to spend as much time • Center to Advance Palliative Care—https://www.capc.org suggested cortisone injections. Twenty- with his family as possible, to watch the • End-of-Life Nursing Education four hours after the second injection, Stanley Cup Finals, and to die with dig- Consortium—http://www. A. L.’s right arm became flaccid. A nity. A. L. passed 4 weeks from the day aacnnursing.org/ELNEC surgeon ordered a Magnetic Resonance of his diagnosis and just weeks after his • Get Palliative Care (directory)— Image scan and discovered a tumor retirement. https://getpalliativecare.org pressing on the cervical spinal cord; A. L. The successful outcome of palliative • Hospice & Palliative Nursing was referred to a neurosurgeon. He was care: a formal palliative care consult, Association—http://hpna.advanc seen on a Thursday and scheduled for family conference, and hospice consult ingexpertcare.org surgery the following Tuesday. On Friday, eased the burden of symptoms experi- • Hospice & Palliative Credentialing A fell and was unable to get up. He called enced by the patient and family over Center—http://advancingexpert the church asking if someone could this short but difficult end-of-life care.org come to his home, and palliative care situation, while achieving the patient’s • National Hospice and Palliative Care Organization—https://www. ministry was urgently consulted. stated care goals. nhpco.org The PCD immediately went to the Lou Gehrig’s Disease. J. R.* was • Scope and Standards of Practice: home where A. L. was found on the diagnosed 3 years ago with bulbar Palliative Care Nursing—An floor. Emergency services were called. amyotrophic lateral sclerosis (ALS or Essential Resource for Hospice It was discovered that A. L. had a spinal Lou Gehrig’s disease). J. R. understood his and Palliative Nurses (2014). cord compression, an oncologic disease is incurable and wanted to achieve ANA & HPNA emergency. After getting him to the quality of life, as defined by him, for as • Palliative Care Nursing, 4th Edi- emergency room and admitted with long as possible. This included managing tion: Quality Care to the End of Life (2014). Marianne Matzo and the confirmed diagnosis, emergency the anxiety he experienced when he Deborah Witt Sherman, Springer radiation therapy was expected to be became short of breath. J. R. had lost his Publishing started. However, the neurosurgeon ability to swallow and was aphasic. He • Conversations in Palliative Care: wanted to do the planned surgical used a keyboard to communicate. He Questions and Answers with the intervention instead. began experiencing occasional periods Experts, 4th Edition (2017). Kathy The day before surgery, A. L.’s right of shortness of breath that occurred Plakovic, Barton Bobb, and Patrick leg became paralyzed. Postoperatively, without warning. His son, a gastroenter- Coyne, editors, HPNA although the pain was somewhat ologist, recommended that J. R. ask his • Journal of Hospice & Palliative Care Nursing, Wolters Kluwer relieved, A. L. developed more prob- neurologist for low-dose oxycodone to Lippincott Williams & Wilkins lems and was diagnosed with widely take when he would become dyspneic, • Clinical Pocket Guide to Advanced metastatic small cell lung cancer. The knowing this would reduce pain, relax Practice Palliative Nursing, 1st cancer had spread to his liver and spine, J. R., and help calm his fears. J. R. asked Edition (2017). Constance Dahlin, and was widespread in his thoracic his neurologist, who according to J. R.’s Patrick Coyne, and Betty Ferrell cage. In addition to his right-sided wife, responded, “I do not order opioids!” (Editors), Oxford University Press paralysis, he developed additional J. R. told his son about his neurologist’s complications: syndrome of inappro- reaction, and his son suggested he talk The PCD immediately connected priate antidiuretic hormone; steroid- to his internal medicine physician. The J. R. to the palliative care services of induced hyperglycemia; a stage 3 internist understood J. R.’s need and the tertiary facility where his neurolo- coccygeal ulcer; and was no longer ordered the medication. gist was located. J. R. asked the PCD anticoagulated for his atrial fibrillation. On the next visit to the neurologist, to attend the palliative care appoint- The PCD suggested and urged the J. R.’s wife told the neurologist how ment. The PCD explained to the family to request a palliative care helpful the oxycodone was and asked if palliative care physician about the tense consult. The hospital care team re- he would order another prescription. relationship with the neurologist. This sponded, “That isn’t needed.” The PCD According to the family, the neurolo- physician was happy to intercede on encouraged the family to be adamant in gist’s reaction was negative and J. R.’s behalf, bridge the communication their request for the consult and a accusatory. J. R. and his wife were gap, and assured J. R. that she would family conference, which was granted. embarrassed and angered. They felt be the person prescribing his opioids Over the next week, the PCD assisted their relationship with the neurologist in the future. J. R. and his wife were the family in obtaining a hospice was fractured, and they feared for the immediately reassured. This case study consult and contacted the hospice future of J. R.’s care. J. R.’s wife illustrates complex patient issues that intake nurse to provide a detailed report requested the help of the PCD. were poorly communicated prior to

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Copyright © 2018 InterVarsity Christian Fellowship. Unauthorized reproduction of this article is prohibited. receiving formal palliative care and surgeon suggested a family conference. TESTIMONIALS FROM intervention by the PCD. R. R. niece asked the PCD to attend. CARE RECIPIENTS The successful outcome of palliative It was evident at the end of the Testimonials by participants confirm care: Consultation was facilitated with conversation, led by the cardiothoracic the value of palliative care. M.F. wrote: the hospital system’s Palliative Care surgeon, that the family did not I never thought it would be possible to Services; concerns about future need understand the extent of the multior- control my diabetes. I loved goodies too for pain control and shortness of breath gan system failure and how dependent much! However, after working with the was communicated and resolved; the R. R. was on the medications and Palliative Care Ministry Team, I can say concerns about the broken relationship mechanical devices to sustain life. The that I feel like control is attainable! I not with the neurologist and patient/family surgeon encouraged the family to only have a great friend, but a true advocate were relieved. approve a brain scan to determine if that helps me understand my diagnosis and Aortic valve replacement. R. R.*, a R. R. might have experienced brain how best to live with it. I visit the doctor 68-year-old female, was hospitalized for hemorrhaging. If the scan was positive, with confidence now and ask knowledgeable open-heart surgery to replace her aortic questions. Before, I just wanted to get every valve. R. R. had a lengthy history of visit over and move on to the next cookie. I problems involving her lungs (asthma) know God sent the team my way as a and heart (congestive heart failure). She In the Medicare wake-up call to manage my health so that I also had Sjögren syndrome, a past breast payment system, adults can help others. cancer, and several orthopedic restorative R. R.’s family member stated, surgeries. She had great concern for the are not permitted to What the Palliative Care Ministry upcoming cardiac surgery, but was advised seek aggressive therapy provided to us was invaluable! We appreci- that her situation was dire, and without ate your willingness to be available any surgery she would not live more than simultaneously with time, day or night. It was so helpful to have 6 months to 1 year. Her greatest fear was hospice care. someone to talk to that was knowledgeable that she would not be able to be taken off and impartial when hard decisions had to be the ventilator required for the procedure. made regarding our aunt’s care. When Her physician echoed her concerns. dealing with a loved one’s end-of-life care, it However, she consented to the surgery. the surgeon recommended that was comforting to know that we had you Although her surgery seemed to go support systems be discontinued. The (the PCD) and the team to guide us in well, R. R.’s condition changed suddenly PCD asked the surgeon to explain to asking the hospital staff tough questions in the first 24 hours. For the first 12 the family what to expect if this that my sister and I weren’t ready to face. hours, she progressed. Soon thereafter, outcome would occur. Once the The four case studies presented here she was no longer responding to simple surgeon described the discontinuation may seem unusual in their complexity, commands and no longer tracking with of dialysis, the cardiac support and yet, the cases illustrate the difficulties her eyes. R. R.’s surrogate decision- medications, external pacemaker, and experienced by patients prior to their maker, her niece, was unfamiliar with the ventilator, the family responded, connection to the PCD or palliative care medical terminology and conditions. “Our Aunt isn’t really alive, is she? It ministry team. These stories are com- The niece contacted R. R.’s church, and is the medications and machines that mon. Patients and family members palliative care ministry was consulted. are keeping her alive, correct?” The struggle to understand what is being The PCD talked to R. R.’s niece surgeon agreed. communicated. They do not understand frequently, answering questions, clarifying Reflecting on this information, R. R.’s how to navigate the complex medical terminology, and offering support and family asked the surgeon to allow system, how to overcome the barriers advocacy. Each day brought more natural death should R. R.’s heart or they experience, or how to interpret evidence of multiorgan system failure. breathing stop (Do Not Resuscitate). medical information and denial of R. R. needed an external pacemaker, R. R. went into cardiac arrest while requests for palliative care. In the dialysis, and increasing cardiac medica- being transported to the radiology presence of serious illness, patients and tions. She experienced rising bilirubin department for the scan. The family was family members can make the right and became unresponsive neurologically. appreciative of the help of the PCD in decisions, based on patient-stated goals The PCD urged R. R.’s niece to request assisting them to understand complex of care, when they are fully informed. a palliative care consult. The cardiotho- medical management and the severity Palliative care team members have racic surgeon did not “see any need for of R. R.’s situation, making their found in some cases that the patient/ palliative care” and continued to encour- decision to allow death less difficult. family has been sheltered from the full age R. R.’s niece to have patience. The successful outcome of palliative details of their situation. Maybe the After 15 days where R. R.’s life was care: Complex medical management was providers are trying to offer hope in sustained on mechanical and chemical clarified to ease difficult decision-making filtering the information. Maybe the support mechanisms, the cardiothoracic by the patient and surrogate/family. physician is struggling with the

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Copyright © 2018 InterVarsity Christian Fellowship. Unauthorized reproduction of this article is prohibited. knowledge that this patient’s health is to begin a palliative care ministry in Retrieved from http://advancingexpertcare.org/about- failing. What are the answers? How can your faith community. serious-illness/ these patients’ voices be heard? Hospice and Palliative Credentialing Center. (2016). Palliative care ministry by FCNs with American Nurses Association and Hospice & Palliative Certifications/Candidate handbooks & applications. Care Nurses Association. (2014). Scope and standards of Retrieved from http://advancingexpertcare.org/ training in palliative philosophy and practice: Palliative care nursing—An essential resource for certifications-handbooks-applications/ care can be a great starting point. hospice and palliative nurses. Silver Spring, MD: Author. Institute of Medicine. (2015). Dying in America: Improv- Associates in Obstetrics and Gynecology. (2017). ing quality and honoring individual preferences near the end of CONCLUSION Women’s Health—Doulas and support during childbirth. life. Washington, DC: National Academies Press. Retrieved from http://www.aogdalton.com/health- Lentz, J. C. (2014). Palliative care doula: An innovative Replicating palliative care ministry library/hw-view.php?DOCHWID=tn9822 model. Journal of Christian Nursing, 31(4), 240–245. in faith-based communities nation- Bakitas, M., Lyons, K. D., Hegel, M. T., Balan, S., Brokaw, doi:10.1097/CNJ.0000000000000103 wide would have far-reaching impact. F. C., Seville, J., …, Ahles, T. A. (2009). Effects of a palliative Lynch, M., Dahlin, C., Hultman, T., & Coakley, E. E. Such care would amplify the voices care intervention on clinical outcomes in patients with (2011). Palliative care nursing: Defining the discipline? advanced cancer: The Project ENABLE II randomized Journal of Hospice and Palliative Nursing, 13(2), 106–111. of those with serious and chronic controlled trial. Journal of the American Medical Association, doi:10.1097/NJH.0b013e3182075b6e 302(7), 741–749. doi:10.1001/jama.2009.1198 illnesses who are bewildered and National Institute of Nursing Research. (2011). Pallia- overlooked in today’s complex Center to Advance Palliative Care. (n.d.). About palliative tive care: The relief you need when you’re experiencing the healthcare setting. Allowing congre- care. Retrieved from https://www.capc.org/about/ symptoms of serious illness. Retrieved from https://www. palliative-care/ gants to experience quality of life and ninr.nih.gov/sites/www.ninr.nih.gov/files/palliative- Hansen, L. S., Hjortdal, V. E., Andreasen, J. J., Mortensen, care-brochure.pdf honoring their goals of care is possible P. E., & Jakobsen, C. J. (2015). 30-day mortality after Pediatric Palliative Care. (2012). Pediatric concurrent care in the faith-based community. Our valve surgery grafting and valve surgery has greatly [briefing]. Retrieved from https://www.nhpco.org/sites/ team members are enriched by improved over the last decade, but the 1-year mortality default/files/public/ChiPPS/Continuum_Briefing.pdf remains constant. Annals of Cardiac Anesthesia, 18(2), Temel, J. S., Greer, J. A., Muzikansky, A., Gallagher, E. R., providing this service and grateful to 138–142. Retrieved from http://www.annals.in/text. Admane, S., Jackson, V. A., …, Lynch, T. J. (2010). Early asp?2015/18/2/138/154462 be an advocate to this vulnerable palliative care for patients with metastatic non-small- group. One parishioner stated, Horovitz, B. (2017, April 7). Coming full circle—Doulas cell lung cancer. The New England Journal of Medicine, “Wouldn’t it be wonderful if every now cradle dying. Kaiser Health News. Retrieved from 363(8), 733–742. https://www.usatoday.com/story/news/2017/04/07/kaiser- U.S. Centers for Medicare and Medicaid Services. (n.d.). church had a palliative care ministry?” coming-full-circle-doulas-now-cradle-dying/100090704/ What Part A covers—How hospice works. Retrieved from I challenge Christian nurses to Hospice and Palliative Credentialing Center. (n.d.). https://www.medicare.gov/what-medicare-covers/ consider if God might be calling you About serious illness: The specialty of palliative nursing. part-a/how-hospice-works.html

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