2016; Volume 17, No 11, November
Media Watch: an annotated list of recent articles about palliative care in the news media and the literature
Aboriginal grief and loss: A review of the literature
AUSTRALIAN INDIGENOUS HEALTH BULLETIN | Online – 13 October 2016 – The review reinforces the need that has long been articulated for training, resources and support for New South Wales Aboriginal Mental Health & Wellbeing Workers in grief and loss. Addressing the high mortality rates and high rate of traumatic deaths in aboriginal communities needs to underpin this support, in order to reduce the number of losses through bereavement. In addition, extensive systemic and policy change needs to be implemented, with particular reference to the development and practice of cultural competency in non-aboriginal staff and managers. Attention needs to be focused on understanding the specific grief-related needs of workers for their own social and emotional wellbeing as well as building the resilience of the communities they live and work in. It is important all organisations that employ aboriginal staff provide or give access to support which may take different forms including supervision, self-care, or “heal the healer” programs. The review highlights the importance of a long-term approach underpinned by culturally relevant research, evaluation and practice with a focus on self-determination.
Reasons for transferral to emergency departments of terminally ill patients: A French descriptive and retrospective study
BMC PALLIATIVE CARE | Online – 21 October 2016 – The authors observed the most frequent reasons/diagnosis for presentations were generalized weakness and social isolation. These are not medical illnesses, but rather descriptions of health or social states. Another French study reached the same conclusion about end of life in emergency departments. This study is a retrospective one, so the authors could not evaluate the impact of families’ exhaustion or fear of death at home, which can play an important role in the decision to transfer patients to an emergency department. Other authors point out the difficulty in evaluating extra medical background. The results show that the most frequent reasons are not acute medical events, but mostly degradation of chronic complex situations, for which home care is too difficult. Social isolation is not an acute or unpredictable event, the real problem being the degradation of a chronic situation that was initially manageable at home.
Ethics, emotions, and the skills of talking about progressing disease with terminally ill adolescents: A review
JAMA PEDIATRICS | Online – 17 October 2016 – The authors reviewed the ethical justifications for and against truth-telling, and considered the published ethical and practice guidance, as well as the perspectives of patients, parents, and clinicians involved in these cases. They also explored particular challenges with respect to the cultural context, timing, and content of conversations at the end of adolescents’ lives. In most cases, clinicians should gently, but persistently engage adolescents directly in conversations about their disease prognosis and corresponding hopes, worries, and goals. These conversations need to occur multiple times, allowing significant time in each discussion for exploration of patient and family values. While truth-telling does not cause the types of harm that parents and clinicians may fear, discussing this kind of difficult news is almost always emotionally distressing. The authors suggest some “phrases that help” when clinicians strive to deepen understanding and facilitate difficult conversations with adolescents, parents, and other family members.
The hole in holistic patient care
OPEN JOURNAL OF NURSING | Online – Accessed 13 October 2016 – Many nurses do not feel comfortable with the “spiritual” element of care and are uncertain about their professional role in the assessment and delivery of spiritual care. Contributing factors to the “hole in holistic patient care” include: 1) Blurring of boundaries in the language and definitions of “spirituality” and “religion”; 2) Insufficient attention to definitions of spirituality and spiritual distress; 3) Confusion and role conflict with professional identity among disciplines related to responsibility for spiritual care; and, 4) Insufficient education and skill development for nurses and other healthcare professionals in the assessment, intervention and appropriate referral of patients experiencing spiritual distress.
Managing risk during care transitions when approaching end of life: A qualitative study of patients’ and health care professionals’ decision making
PALLIATIVE MEDICINE | Online – 7 October 2016 – When making decisions about transitions in care, an important consideration is the risks of remaining in/transferring back to home, and how these risks are managed. Patients and health care professionals use the presence of community and carer services to inform decisions about risk and possible transfer to a different care setting. Patients and health care professionals take different approaches in managing risk: patients prefer to make choices about how to cope with risk, while decisions made in hospital are risk-adverse. This study highlights how the concept of risk is used in decision making about transitions in care, raising the importance of more open dialogue between the patients and health care staff on discussing patient choice in this area of decision making. Further research is needed to understand how community-based staff and allied health professionals can be better integrated into decision making in this area.
Cultural adaptation and validation of the Portuguese End-of-Life Spiritual Comfort Questionnaire in Palliative Care patients
PORTO BIOMEDICAL JOURNAL | Online – 17 September 2016 – This study opens new perspectives for the evaluation of comfort as a holistic outcome and suggests the need for more studies with larger samples. It also suggests the usefulness of shorter instruments, taking into account the clinical characteristics and conditions of the person suffering from a terminal illness. The Portuguese End-of-Life Spiritual Comfort Questionnaire represents a new approach to this important strategy of measuring a person’s overall sense of wellbeing and meaningful life . . . Using this instrument in conjunction with a pain measure will give important insight into spiritual comfort and its potential to decrease the amount of pain meds necessary when the patient has more spiritual comfort. The instrument has good psychometric properties and is reliable, valid and sensitive to the study of spiritual comfort of the person in the final stages of life, particularly for research purposes. It is a strong supplement to measures of physical symptoms.
N.B. English language article.
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.