International Journal of Circumpolar Health | Online – 14 June 2017 – Palliative cancer care in Greenland is provided by health professionals at the national Queen Ingrid’s Hospital and at Rigshospitalet in Denmark. To improve and develop care for relatives of patients with advanced cancer, the authors conducted a mixed method study examining relatives’ level of satisfaction with care and treatment and their current main concerns. The FAMCARE-20 questionnaire was translated to Greenlandic and pilot tested. The questionnaire was supplemented by open-ended questions about relative’s current main concerns... The highest rate of satisfaction was with the availability of a hospital bed (66%) and relatives were the most dissatisfied with the lack of inclusion in decision making related to treatment and care (71%) and the length of time required to diagnose cancer (70%). Responses to the open-ended questions revealed that relatives faced challenges in gaining access to information from health professionals. They experienced a lack of security, worries about the future and a lack of support at home. The study showed a substantial level of dissatisfaction among relatives of patients with advanced cancer. The authors recommend a focus on psychosocial care, more access to information, and to include relatives in decision making and in the future planning of palliative care services. An assessment of relatives’ needs is essential to develop an adequate palliative care in a range of settings.
Korea Biomedical Review | Online – 30 May 2017 – Koreans do not have positive views of the situation concerning their final moments, a recent survey has shown. Notably, doctors who treat patients expressed most negative views about the nation’s “deathbed culture.” Seoul National University College of Medicine conducted a survey on 1,241 healthy people, 1,001 patients, 1,008 family members, and 928 medical workers, about hospice, palliative care and death culture... According to the opinion poll, most Koreans do not have positive views of deathbed situations. The survey assumed a situation in which everyone leads a happy and meaningful life and dies a comfortable and beautiful death as 100 points, and a situation in which everyone lives unhappily and without meaning and dies a painful and miserable death, as 0 point. The respondents’ evaluation stood at 58.3 points on average. By group, ordinary people and patients gave above-average marks of 65 and 59.9 points, but their family members and doctors gave below-average marks of 58.1 and 47.7 points, respectively.
London Journal of Primary Care, 2017; 9 (3): 33-37. This is the first time London-wide data has been collected about specialist palliative care (SPC) services. It demonstrates that SPC services are available across London at home, in hospital, and in hospices in weekday working hours. However, SPC out-of-hours service availability falls short of national guidance and accepted best practice. London SPC services see a disproportionate number of people with cancer ... although the data analysed show that London SPC services are seeing more patients with non-malignant disease than the national average. The analysis of this data is limited by the fact that the authors were not able to collect patient level data. They were also unable to report on quality outcome measures outside service availability and diagnoses as there are no nationally accepted measures of SPC outcomes or service quality to act as benchmarks. The anticipated launch of a national individual-level data-set in 2017 of SPC services including demographic details, activity information and patient outcomes data will be an important milestone towards providing evidence on outcomes, and (in the longer term) facilitating genuine equity of access across London.
PALLIATIVE MEDICINE & HOSPICE CARE | Online – 17 April 2017 – The Institute of Healthcare’s Triple Aim Initiative (TAI) identifies the improvement of patients’ experience as one of three key components necessary for optimizing the American health care and cost-delivery systems. Widely adopted today, the TAI’s focus on patient-centered care also implicitly embeds the idea of care that is culturally sensitive (CS). Perhaps nowhere in the health-care delivery system is this emphasis on patient-centered, CS care more important than for those addressing life-limiting illness or for frail elders who are coping with the advanced stages of multiple chronic conditions. These two patient populations have been the target of numerous studies in cross-cultural research, much of which has shown that dialogue surrounding palliative care and hospice is eased when caregivers, both clinical and laypersons, are CS. Cultural sensitivity supports the development of trust and rapport with patients. The crucial question is how cultural sensitivity can best be achieved when working with a diverse patient population. This editorial provides insight into the meaning of culture and examines two leading methods for acquiring some degree of cultural sensitivity: cultural competence and cultural humility.
The Permanente Journal, 2017; 21(2):16-190. Religion is an important part of many patients’ cultural perspectives and value systems that influence them during advanced illness and toward the end of life when they directly face mortality. Worldwide violence perpetrated by people identifying as Muslim has been a growing fear for people living in the U.S. and elsewhere. This fear has further increased by the tense rhetoric heard from the recent U.S. presidential campaign and the new presidential administration. For many, this includes fear of all Muslims, the second-largest religious group in the world with 1.6 billion adherents, and approximately 3.5 million in the U.S. alone. Patient-centered care requires health professionals to look past news headlines and unchecked social media so they can deliver high-quality care to all patients. This article explores areas of importance in the context of advanced illness for practitioners of Islam. These include the conditions needed for prayer, the roles of medical treatment and religious authority, the importance of modesty, the religious concordance of clinicians, the role of family in medical decision making, advance care planning, and pain and symptom management. Initial recommendations to optimize care for Muslim patients and their families, informed by the described tenets of Muslim faith, are provided for clinicians and health systems administrators.
“If I had stayed back home, I would not be alive any more …”
Exploring end-of-life preferences in patients with migration background
Plos One | Online – Accessed 5 June 2017 – In patients with life-limiting conditions and a history of migration, a higher risk of not dying at home and limited access to palliative care (PC) services has been reported. Participants in this study included migrant and non-migrant adult patients with far advanced, life-limiting disease receiving PC in different specialist level settings (e.g., specialist home PC, PC inpatient unit, inpatient hospice). The 37 interviewees (19 native Germans and 18 patients from Europe and the U.S., Israel, Turkey and Indonesia) expressed eleven themes covering health care- and patient-related issues, of which four emerged to be specific for migrants: 1) Worse survival in home country; 2) The perception of an altered identity and “not belonging”; 3) Language skills as prerequisite to survive; and, 4) Longing for “home” while being attached to Germany. From these categories, three overarching themes were derived: 1) A limited understanding of the concept of PC; 2) The suppression of end-of-life discussions for its association with suffering and loss of autonomy; and, 3) The significance of complex individual migration histories. Based on these findings, the concept of a “double home” experience is proposed. Barriers to access to PC should be minimized for all patients while cultural stereotyping has to be avoided.
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).