Abstract
Wentlandt K, Weiss A, O'Connor E, Kaya E: Palliative and end of life care in solid organ transplantation. J Am Transplant 2017 [Epub ahead of print]; DOI: 10.1111/ajt.14522
Most transplant patients suffer from advanced chronic disease, symptom burden, and mortality awaiting transplant. Transplantation introduces new risks including perioperative death, organ rejection, infection, renal insufficiency, and malignancy. Numerous publications over the past decade suggest that palliative care is well suited to support these patients and their caregivers, yet access to palliative care and research within this population is lacking. This review describes palliative care and summarizes existing research supporting palliative intervention in advanced organ failure, and transplant populations. A proposed model to provide palliative care in parallel with disease-directed therapy in a transplant program has potential to improve symptom burden, quality of life, and healthcare utilization. Further studies are needed to elucidate specific benefits of palliative care for this population. In addition, there is tremendous need for education, specifically for clinicians, patients, and families, to improve understanding of palliative care and its benefits for patients with advanced disease.
Robinson MT, Holloway RG: Palliative care in neurology. Mayo Clin Proc 2017;92:1592–1601.
Neurological conditions tend to have high symptom burdens, variable disease courses, and poor prognoses that affect not only patients but also their families and caregivers. Patients with a variety of neurological conditions such as Parkinson disease, dementia, amyotrophic lateral sclerosis, brain tumors, stroke, and acute neurological illnesses have substantial unmet needs that can be addressed through a combination of primary and specialty palliative care. The complex needs of these patients are ideally managed with a comprehensive approach to care that addresses the physical, psychological, social, and spiritual aspects of care in an effort to reduce suffering. Early discussions about prognosis, goals of care, and advance care planning are critical as they can provide guidance for treatment decisions and allow patients to retain a sense of autonomy despite progressive cognitive or functional decline. With the rapid growth in palliative care across the United States, there are opportunities to improve the palliative care knowledge of neurology trainees, the delivery of palliative care to patients with neurological disease by both neurologists and non-neurologists, and the research agenda for neuropalliative care.
Feigin S, Owens RG, Goodyear-Smith F: Helping a loved one die: The act of assisted dying in New Zealand. Mortality 2017 [Epub ahead of print]; DOI: 10.1080/13576275.2017.1382461
Assisted dying, although illegal in New Zealand, is often in the spotlight and surrounded by much debate. Moreover, although sentencing may take into account the motivation (ending of suffering) of those who assist, this is done on a case-by-case basis, with the process and resulting punishment extremely taxing on the offender psychologically, physically, and emotionally. This study explored the personal experiences of family members who had assisted with the death of a loved one and resulting consequences (legal, emotional, and psychological). The goal was to explore how someone made sense of his or her personal experience with assisted dying. Semistructured interviews were conducted with three participants. Findings suggest that the act of assisted dying was motivated primarily by altruistic reasons, driven by empathy and compassion toward a suffering loved one. The act of assisted dying resulted in unforeseeable life-changing events such as imprisonment, activism for legalization of euthanasia, and loss of significant relationships. The overall experience was characterized by coping strategies, predominantly negative emotional states, and a deliberate defiance of established legal and medical systems. Participants represented a subgroup of altruistic offenders. Findings draw attention to the four principles of medical ethics—autonomy, beneficence, nonmaleficence, and justice in relation to assisted dying.
Washington KT, Demiris G, Oliver DP, et al.: Quality hospice care in adult family homes: Barriers and facilitators. J Am Med Dir Assoc 2017 [Epub ahead of print]; DOI: 10.1016/j.jamda.2017.08.012
Older adults in need of residential services are increasingly spending their final days in small, domestic-style care settings such as adult family homes. In this study, the authors sought to identify processes that facilitated the provision of quality hospice care to seriously ill residents of adult family homes and their family members. The authors conducted a secondary analysis of qualitative data collected as part of a randomized clinical trial of a problem-solving intervention for family members of hospice patients. The original trial was conducted in partnership with two large community-based hospice agencies in the state of Washington. Data from 73 family members of residents of adult family homes receiving hospice services were included in the analysis. Data were collected through semistructured individual interviews, which were audiorecorded and transcribed before analysis. Results demonstrated that family members described quality hospice care in the adult family home as care that is consistent with residents and families' values and that results in comfort and social connectedness for residents while promoting peace of mind and decreasing burden for residents' families. They identified numerous processes that facilitated the provision of quality care, including personalizing care, sharing information and expertise, working together to resolve conflicts, and prioritizing residents' and families' values over existing or competing philosophies of care. The authors conclude that the adult family home setting can amplify both the benefits and challenges associated with receipt of hospice. When choosing an adult family home, older adults and their families should strongly consider selecting a home with a track record of positive collaborations with hospice agencies if the need for end-of-life care is anticipated.
Belisomo R: Reversing racial inequities at the end of life: A call for health systems to create culturally competent advance care planning programs within African American communities. J Racial Ethnic Health Disparities 2017 [Epub ahead of print]; DOI: 10.1007/s40615-017-0360-2
Racial and cultural barriers inherent in health systems have made the delivery of culturally relevant end-of-life care that aligns with patient preferences a particular challenge across African American patient populations. The end-of-life experience has been cited as a public health crisis by the Institute of Medicine, and this crisis is one felt even more acutely by patients of this minority race. Structural racism has limited access to the planning mechanisms proven to result in quality end-of-life care; thus, health systems must initiate remedies in the face of dire need, as African Americans face a disproportionate burden of morbidity and mortality from many serious illnesses. Recognizing that education is essential to overcoming barriers to quality care access, the development of new and culturally appropriate models of community engagement surrounding advance care planning is needed to serve and empower African American patients.
Marty CM, Carter BS: Ethics and palliative care in the perinatal world. Semin Fetal Neonatal Med 2017 [Epub ahead of print]; DOI: 10.1016/j.siny.2017.09.001
The perinatal world is unique in its dutiful consideration of two patients along the lines of decision making and clinical management—the fetus and the pregnant woman. The potentiality of the fetus–newborn is intertwined with the absolute considerations for the woman as autonomous patient. From prenatal diagnostics, which may be quite extensive, to potential interventions prenatally, postnatal resuscitation, and neonatal management, the fetus and newborn may be anticipated to survive with or without special needs and technology, to have a questionable or guarded prognosis, or to live only minutes to hours. This review addresses the ethical ramifications for prenatal diagnostics, parental values and goals clarification, birth plans, the fluidity of decision making over time, and the potential role of prenatal and postnatal palliative care support.