2017; Volume 18, No 11, November
Media Watch: An annotated list of recent articles about palliative care in the news media and the literature
End-of-life care for World War II, Korea, and Vietnam-era veterans
HOME HEALTHCARE NOW, 2017; 35(9): 485-493. It is estimated that only 4% of Veterans die in a Veterans Affairs setting. Home care and hospice clinicians should ask, “Are you a Veteran?” or “Have you ever served in the military?” so that appropriate care considerations can be made. Elliott (2015) also suggested several strategies to identify if a patient is a veteran, such as observing for military-related memorabilia around the home or military-related tattoos on the patient. Clinicians might be able to create an immediate connection with a patient who is a veteran by taking the time to inquire about prior military service. Although military experiences and subsequent post-military experiences vary between individuals, many veterans carry the “values, attitudes, and behaviors that are distinctly military” into the civilian world. Not making assumptions about how one views their military service is a good approach. Acknowledging military service is important and may be especially important when caring for a veteran at the end of life. Honoring and respecting the veteran and their family for the service and sacrifice to our country can help build trust and rapport. Highlighted are a variety of ways in which home care and hospice clinicians and agencies can honor and respect Veterans. Listening to a patient reminisce and observing for potential complications can facilitate the clinician in seeking the right care or support for the patient, their families, and their caregivers. Asking the patient, their families, and caregivers what their wishes are is important to providing patient-centered care. Knowing not all Veterans want to share their stories is important too.
End-of-life care among immigrants: Disparities or differences in preferences?
JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION | Online – 2 October 2017 – Although describing a “good death” is an existentially challenging exercise, most people, if asked to do so, would note the importance of the presence of friends and family, relief from distressing symptoms, time at home, completing life goals, and other values. Although these goals are likely shared quite widely, how they are prioritized, and how they relate to other goals, may vary among individuals and across cultures.1 Thus, in studies seeking to evaluate end-of-life care (EoLC), it is essential to differentiate observed variation that results from differences in quality of care from variation that is attributable to differences in the underlying preferences of patients or families. For example, hospital-based deaths are often viewed as a marker of low-quality care based on evidence that most individuals from Western cultures prefer to die at home.2 However, some patients may prefer death in hospitals under certain circumstances, perhaps owing to greater abilities to receive palliation for severe symptoms, such as refractory dyspnea, or so as not to burden loved ones with caring for them at home. If such nuanced preferences vary among cultures, then comparing care quality across cultures by this metric might yield erroneous conclusions. These difficulties in evaluating the quality of EoLC challenge the interpretation of the elegant analyses of end-of-life care differences among immigrants to and native residents of Ontario, Canada, reported in this issue of the Journal of the American Medical Association.3
1. ‘Common or multiple futures for end-of-life care around the world? Ideas from the “waiting room of history,”’ Social Science & Medicine, published online 9 November 2016. [Noted in the 21 November issue of Media Watch (#488, p.6)] Abstract.
2. ‘Is home always the best and preferred place of death?’ British Medical Journal, published online 7 October 2015. [Noted in the 12 October 2015 issue of Media Watch (#431, p.9)] Abstract.
3. ‘Association between immigrant status and end-of-life care in Ontario, Canada,’ Journal of the American Medical Association, published online 2 October 2017. Full text.
Palliative care in neurology
MAYO CLINIC PROCEEDINGS, 2017; 92(10): 1592-1601. Neurologic 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 neurologic conditions such as Parkinson disease, dementia, amyotrophic lateral sclerosis, brain tumors, stroke, and acute neurologic illnesses have substantial unmet needs that can be addressed through a combination of primary and specialty palliative care (PC). 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 PC across the U.S., there are opportunities to improve the PC knowledge of neurology trainees, the delivery of PC to patients with neurologic disease by both neurologists and non-neurologists, and the research agenda for neuro-PC.
Patients’ and caregivers’ needs, experiences, preferences and research priorities in spiritual care: A focus group study across nine countries1
PALLIATIVE MEDICINE | Online – 12 October 2017 – Five themes are described [by study participants]: 1) Patients’ and caregivers’ spiritual concerns; 2) Understanding of spirituality and its role in illness; 3) Views and experiences of spiritual care; 4) Preferences regarding spiritual care; and, 5) Research priorities. Participants reported wide-ranging spiritual concerns spanning existential, psychological, religious and social domains. Spirituality supported coping, but could also result in framing illness as punishment. Participants emphasised the need for staff competence in spiritual care. Spiritual care was reportedly lacking, primarily due to staff members’ de-prioritisation and lack of time. Patients’ research priorities included understanding the qualities of human connectedness and fostering these skills in staff. Caregivers’ priorities included staff training, assessment, studying impact, and caregiver’s spiritual care needs. To meet patient and caregiver preferences, healthcare providers should be able to address their spiritual concerns. The study’s findings should inform patient- and caregiver-centred spiritual care provision, education and research.
1. Belgium, Canada, Finland, Kenya, Poland, South Africa, South Korea, the U.K., and the U.S.
Commentary
Changing the conversation at the end of life: How the language we use impacts surrogates' decision-making burden
PROCEEDINGS (Baylor University Medical Center), 2017; 30(4): 473-474. As a palliative care professional, I am frequently consulted when providers are struggling with how to care when cure is not possible. This is never an easy situation, but a few basic and universal principles can guide us through these conversations. First, we must understand both the biology and biography of our patient. Where is our patient in the trajectory of disease, but also who and where is our patient in the story of his or her life? Next, armed with that knowledge, we must utilize both the art and science of medicine to recommend interventions we believe are most appropriate – not for the disease, but for the patient who suffers with the disease. Finally, we must communicate our recommendation carefully, for language truly matters. Medicine well practiced is a team effort, and if we collectively continue to learn new skills ..., then we will truly provide our patients and their families with the most beneficial treatments and highest level of care that can be given.
Media Watch is intended as an advocacy, education and research tool. The weekly report, published by Barry R. Ashpole, a Canadian communications consultant and educator, monitors the literature and the lay press on issues specific to the quality of end-of-life care. It is international in scope and distribution. Each month, this section of the IAHPC Newsletter will publish an abstract or summary of an article or report of special interest noted in recent issues of Media Watch (see below).
View the current and back issues of the weekly report.