2018; Volume 19, No 1, January
Media Watch: An annotated list of recent articles about palliative care in the news media and the literature
Innovative models for high-risk patients use care coordination and palliative supports to reduce end-of-life utilization and spending
Innovation in Aging | Online – 20 November 2017 – Three models that received Health Care Innovation Awards from the Centers for Medicare & Medicaid Services aimed to improve quality of care and reduce cost through the use of innovative care coordination models. This study explores the total cost of care and selected utilization outcomes at the end-of-life for these innovative models, each of which enrolled adults with multiple chronic conditions and featured care coordination with advance care planning (ACP) as a component of palliative care. These included a comprehensive at-home supportive care model for persons predicted to die within a year and two models offering ACP in nursing facilities and during care transitions. Comparing participants in each model who died during the study period to matched comparators, two of the three models were associated with significantly lower costs in the last 90 days of life ($2,122 and $4,606 per person), and the third model showed non-significant differences. Two of the three models encouraged early hospice entry in the last 30 days of life. For the comprehensive at-home supportive care model, the authors observed aggregate savings of nearly $19 million over the study period. One care transition model showed aggregate savings of over $500,000 during the same period. Potential drivers of these cost savings include improved patient safety, timeliness of care, and caregiver support.
DOI: 10.1093/geroni/igx021
A novel Family Dignity Intervention for enhancing and informing holistic palliative care in Asia: Study protocol for a randomized controlled trial
Trials | Online – 4 December 2017 – The lack of a holistic approach to palliative care (PC) can lead to a fractured sense of dignity at the end of life, resulting in depression, hopelessness, feelings of being a burden to others, and the loss of the will to live among terminally ill patients. Building on the clinical foundation of Dignity Therapy, together with the empirical understanding of dignity-related concerns of Asian families facing terminal illness, a novel Family Dignity Intervention (FDI) has been developed for Asian PC. FDI comprises a recorded interview with a patient and their primary family caregiver, which is transcribed, edited into a legacy document, and returned to the dyads for sharing with the rest of the patient’s family. This first-of-its-kind study develops and tests an evidence-based, family driven, psycho-socio-spiritual intervention for enhancing dignity and well-being among Asian patients and families facing mortality. It addresses a critical gap in the provision of holistic PC. The expected outcomes will contribute to advancements in both theories and practices of PC for Singapore and its neighboring regions.
DOI: 10.1186/s13063-017-2325-5
Exploring the rewards and challenges of pediatric palliative care work: A qualitative study of a multi-disciplinary children’s hospice care team
BMC Palliative Care | Online – 16 December 2017 – Participants [in this exploratory, qualitative study] described the work as emotionally intensive and multi-faceted; ‘getting it right’ for children was identified as a strong motivator and reward, but also a potential stressor as staff strived to maintain high standards of personalized and emotional care. Other factors were identified as both a reward and stressor, including team functioning, the allocation of work, meeting parent expectations, and the hospice environment. Many participants identified training needs for different aspects of the role to help them feel more confident and competent. Participants also expressed concerns about work-related stress, both for themselves and for colleagues, but felt unable to discuss this at work. Informal support from colleagues and group clinical reflection were identified as primary resources to reflect on and learn from work and for emotional support. However, opportunities for this were limited. Providing regular, structured, and dedicated clinical reflection provides a mechanism through which children’s hospice staff can come together for support and learning, and demonstrates an organizational commitment to staff well-being and development. Being aware of children’s hospice-specific rewards and challenges can help to ensure that staff feel supported and competent in their role. Breaking down barriers to discussing work-related stress and enhancing awareness about early signs of burnout is also important.
DOI: 10.1186/s12904-017-0254-4
‘Worried to death’: The assessment and management of anxiety in patients with advanced life-limiting disease, a national survey of palliative medicine physicians
BMC Palliative Care | Online – 11 December 2017 – To the authors’ knowledge this is the first national survey exploring how palliative medicine physicians assess and manage anxiety in their patients. It highlights the infrequent use of screening tools, substantial variation in prescribing practice, potentially inappropriate use of benzodiazepines in patients with a prognosis of months, training gaps and poor access to psychological and psychiatric services in the UK. This suggests that palliative medicine physicians should receive formal training in the management of anxiety and develop local referral networks with mental health services. The findings also highlight the urgent need for further research into the pharmacological management of anxiety in the palliative care population. The development of a UK-wide guideline is an essential next step in supporting clinical decision-making, service development, and ultimately improving patient care.
DOI: 10.1186/s12904-017-0245-5
Comparing doctors’ legal compliance across three Australian states for decisions whether to withhold or withdraw life-sustaining medical treatment: Does different law lead to different decisions?
BMC Palliative Care | Online – 1 December 2017 – Despite purporting to regulate end-of-life care (EoLC), it appears law may have a limited role in decision-making by doctors. This paper considered whether variation in law across Australian states would be reflected in different decisions but found that it was not. Instead, despite very different law in Queensland compared to New South Wales (NSW) and Victoria, doctors from Queensland made broadly the same decision in the hypothetical scenario involving an advance directive, and for broadly the same reasons as did doctors in NSW and Victoria. This suggests a need for more education about the law in this area, especially where the law may differ from what may be regarded as good medical practice. These findings also have implications for health policy-makers and legislators in terms of law reform, including reconsideration of the role and utility of law in guiding decisions about the provision of EoLC.
DOI: 10.1186/s12904-017-0249-1
Demands and requests for ‘inappropriate’ or ‘inadvisable’ treatments at the end of life: What do you do at 2 o’clock in the morning when…?
British Journal of Anaesthesia, 2017; 119(Supplement 1): i90-i98. In an era when health care has become increasingly complex and patient expectations are higher than ever before, we can find the decision-making process for patients, potentially at the end of their lives, increasingly difficult. In the shift from paternalism to patient choice, we can struggle to know what to do when faced with a patient, their family, or both requesting or demanding inadvisable, inappropriate, or futile treatments. It can feel as if we are being asked to subject patients to intrusions and interventions that ‘just feel wrong.’ The authors look at how ethical frameworks, legal statute, case law, and professional guidance, as they apply in the UK, interact when we make these decisions, and they discuss some of the conflicts and challenges that such guidance pose.
DOI: 10.1093/bja/aex359
A scoping review of palliative care for children in low- and middle-income countries
BMC Palliative Care | Online – 25 November 2017 – Ninety-eight percent of children needing palliative care (PC) live in low- and middle-income countries (LMICs), and almost half of them live in Africa. In contrast to the abundance of data on populations in high-income countries, the current data on populations in LMICs is woefully inadequate. Although the authors found limited evidence in this review, they identified common challenges such as the need for further training for health workers and greater availability of opioid analgesics. While efforts to change the current systems and laws applying to children in LMICs are important, there is a need to tackle underlying factors, including the need to raise awareness about PC in public health and improve the accuracy of data collection.
DOI: 10.1186/s12904-017-0242-8
End-of-life care in Taiwan:
The Hospice Information System and its association with the congruence between the preferred and actual place of death
Tzu Chi Medical Journal, 2017; 29(4): 213-217. [English] A Hospice Information System (HIS) developed in eastern Taiwan in 2012 aimed to improve the quality of hospice care through an integrated system that provided telemetry-based vital sign records, online 24/7 consultations, online video interviews, and online health educations. The purpose of this study was to explore the congruence between the preferred and actual place of death (PoD) among patients who received HIS services. In total, the authors enrolled 481 patients who received HIS services and died. Of them, 444 (92.3%) died at their preferred PoD. Patients who preferred an inpatient hospice as their PoD had higher achievement rate than those who wanted a home death. High-intensity HIS utilization was associated with a higher likelihood of home death than low-intensity HIS utilization. Patients living in areas distant from the medical center had lower achievement of home death than those living in local areas.
DOI: 10.4103/tcmj.tcmj_125_17
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.