2017; Volume 18, No 4, April
Media Watch: an annotated list of recent articles about palliative care in the news media and the literature
To be a trained and supported volunteer in palliative care: A phenomenological study
BMC Palliative Care | Online – 14 March 2017 – The findings of the present study highlight that volunteering is experienced as meaningful and satisfying, and that the volunteers have an independent and important role to play among seriously ill or dying people in the palliative care (PC) team by providing practical help and emotional support. This positive finding may be explained by the fact that the volunteers were trained and supported by a PC coordinator. When volunteers experience their volunteering as meaningful, and when they receive recognition for performing voluntary tasks, they frequently wish to continue as volunteers. To ensure that PC volunteers are available in the future, it is important to inform individuals about the benefits of volunteering in PC within public forums. Likewise, health care personnel have to be aware of the volunteers’ roles in PC. Since PC coordinators are suitable for training and supporting volunteers, it is important that such a position is made available, and is filled, within the community health care services. In future research, it will be important to focus on the experiences of patients, their next of kin, and health care personnel, particularly as they relate to the trained and supported individuals who volunteer in PC settings within the community health care services.
The demon in deeming: Medical paternalism and linguistic issues in the palliative care setting
Canadian Family Physician, 2017; 63 (3):191-194. Despite considerable efforts in public health policy since 1995 to promote and advance palliative care in Canada, no more than a third of Canadians access palliative care (PC) when they need it. This number is tragically low when compared with the 90% of Canadians who could benefit from PC in the final phases of their lives. Although the reasons for this are multifactorial, the authors submit that medical paternalism together with linguistic issues are important contributing factors. In addition to posing a barrier to accessing PC services in a timely fashion or at all, medical paternalism and linguistic inaccuracies and euphemisms might reflect a failure to act in a truly ethical and patient-centred manner.
Healthcare and end-of-life needs of lesbian, gay, bisexual, and transgender older adults: A scoping review
Geriatrics | Online – 16 March 2017 – To some extent, our ability to draw inferences about the experience of lesbian, gay, bisexual, and transgender (LGBT) older adults across jurisdictions is limited given the current state of the literature. Continued research in this area is particularly timely given that several countries are experiencing a demographic shift and a movement toward inclusivity. This shift is noted through reports on LGBT aging and end of life released in the U.K. and Australia. Taking a life course perspective necessitates an understanding of the personal histories and historical context in which LGBT older adults are situated. In Canada, for example, major historical milestones aiming to guarantee equal civil liberties [to] members of the LGBT community include the decriminalization of homosexuality in 1969 as well as the Civil Marriage Act in 2005, which allowed same-sex couples access to marriage. It is similarly important to note that the rights of trans individuals in Canada continue to lag behind those of other members of the LGBT community and vary considerably depending on jurisdiction. Undeniably, the experience of Canadian older LGBT individuals is unique relative to LGBT individuals residing in countries around the world. Thus, there is a gap in the literature on LGBT aging in Canada and, more precisely, the last stages of life. In order to better understand the experiences of LGBT older adults with respect to the last stages of life, more jurisdiction-specific research is needed as is a focus on the needs of the transgender community at the end of their lives.
Palliative care for patients with Parkinson’s disease: An interdisciplinary review and next step model
Journal of Parkinsonism & Restless Legs Syndrome | Online – 20 February 2017 – The complex and extensive patient and caregiver needs warrant a dedicated clinic to provide the necessary interdisciplinary care. In contrast to a typical model where the neurology clinician refers the patient to various ancillary treatment groups resulting in multiple separate clinic visits, the interdisciplinary model supports direct communication between the different disciplines during the clinic visit, allowing for a more coordinated response that takes into account multiple perspectives. Such an interdisciplinary model has been utilized in neurologic disorders with complex end-stage disease needs, such as amyotrophic lateral sclerosis with notable improvement in quality of life and survival. The Oregon Health & Science University Parkinson Center and Movement Disorders Clinic has developed an interdisciplinary clinic called Next Step composed of neurology clinicians, a physical therapist, a speech pathologist, a social worker, and a nursing coordinator. The clinic focuses on palliative care issues, including complex late stage motor symptoms, non-motor symptoms, and quality of life goals of both the patient and caregiver(s). This article describes the Next Step clinic structure and processes, while reviewing the literature and incorporating clinical expertise from the perspective of each discipline.
N.B. Click on Download Article [PDF] to access complete text.
Inuit interpreters engaged in end-of-life care in Nunavik, Northern Quebec
International Journal of Circumpolar Health, 2017; 76 (1). Inuit interpreters are key players in end-of-life care (EoLC) for Nunavik patients and families. This emotionally intensive work requires expertise in French, English and Inuit dialects to negotiate linguistic and cultural challenges. Cultural differences among medical institutions and Inuit communities can lead to value conflicts and moral dilemmas as interpreters navigate how best to transmit messages of care at end of life. Inuit working as interpreters in Nunavik are hired to provide multiple services of which interpretation plays only a part. Many have no formal training and have few resources (e.g., visual aids, dictionaries) to draw upon during medical consultations. Given the small size of communities, many interpreters personally know their clients and often feel overwhelmed by moral dilemmas when translating end-of-life information for patients and families. The concept of moral distress is a helpful lens to make sense of their experience, including personal and professional repercussions.
Developing a model for pharmaceutical palliative care in rural areas: Experience from Scotland
Pharmacy | Online – 16 February 2017 – This paper describes the experience of developing a model to deliver pharmaceutical palliative care (PC) in rural Scotland via the MacMillan Rural Palliative Care Pharmacist Practitioner (MRPP) project. The focus of the service was better integration of the MRPP into different care settings and professional teams, and to develop educational resources for the wider multidisciplinary team including care home and social care staff on medicine related issues in PC. A variety of integration activities are reported in the paper with advice on how to achieve this. Similarly, many resources were developed, including bespoke training on pharmaceutical matters for care home staff. The experience allowed for a three step service and sustainability model for community pharmacy PC services to be developed. Moving through the steps, the key roles and responsibilities of the MRPP gradually shift toward the local community pharmacist(s), with the MRPP starting from a locality-based hands-on role to a wider supportive facilitating role for local champions. It is acknowledged that successful delivery of the model is dependent on alignment of resources, infrastructure and local community support.
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).
Read the current and back issues of the weekly report.