Global Palliative Care News Archive

MEDIA WATCH, CREATED AND DISTRIBUTED BY BARRY R. ASHPOLE

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Barry R. Ashpole, Ontario, CANADA
BarryRAshpole@bell.net

MW 757:

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Indeed, one survey of medical students at two prominent medical schools reported that students received “little or no explicit educational attention to the suffering of patients and their families” or for the clinical management of suffering. Instead, the students learned these clinical skills primarily by ad hoc observation of role models. While ad hoc observation can be a powerful learning method, it could be much more effective when used in tandem with more formal instruction. Full text: view source »

Accountable and transparent palliative quality measures will improve care

JOURNAL OF PALLIATIVE MEDICINE, 2022;25(4):542-548. How do we build on the proven successes of hospice and palliative care (PC) and build clinical programs to serve those who need it in the context of real-world healthcare? This area of investigation is rich in opportunity. Much research is needed to advance the craft of hospice and PC if the field is to move forward at scale in a timely manner. We need to democratize research and engage both “small r” and a “big R” researchers in the manner of other sub-specialties such as oncology and cardiology. Future research should focus on building innovative systems and models of care to uncover needs of seriously ill patients and their caregivers and effectively cater to those needs. Full text: view source »

Identifying barriers and facilitators to palliative care integration in the management of hospitalized patients with COVID-19: A qualitative study

PALLIATIVE MEDICINE | Online – 20 April 2022 – This study highlights that improving the integration of palliative care (PC) during COVID-19 will require interventions at multiple levels, including for patients, families, primary care providers, PC consultants and institutional leadership. To better facilitate PC integration into the care for patients and families facing COVID-19, palliative teams need to be accessible and adaptable. Leaders in the field will need to ensure their presence at pandemic planning tables that establish clinical models to meet the needs of people experiencing COVID-19. Despite efforts to educate healthcare providers that PC is not just for patients at end of life, many barriers to palliative integration in COVID-19 care continue to relate to this misconception. Full text: view source »

Palliative care: Walking through the primary school gate

PROGRESS IN PALLIATIVE CARE | Online – 10 April 2022 – The recent literature highlights the need to improve access and extend the reach of palliative care (PC) beyond the confines of traditional clinical settings. As part of re-imagining PC, there is an opportunity to make death, compassion and partnership “part of life” in school communities – for the benefit of students, teachers and families alike. Ultimately, a partnership between PC services and school communities could have a positive flow on effect upon wider communities, locally, nationally and internationally. In this way, fulfilling objectives like Palliative Care Australia set down in 2015, appears not only to be reasonable but achievable, just by walking through the primary school gate. Full text: view source »

MW 756:

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This paradigm shift would facilitate timely emotional and spiritual support to people and their families and allow opportunities for meaningful care planning, rather than late, proxy-derived decision-making. Integrated working across teams, be these situated in age-related services, memory services, primary care or specialist PC, makes sense. Optimal models are currently lacking. Full text: view source »

Dignity in care at the end of life in a nursing home: An ethnographic study

BMC GERIATRICS | Online – 21 March 2022 – Residents suffered from illness-related concerns that inhibited their possibilities to live a dignified life... Their failing bodies were the most significant threat to their dignity, as loss of abilities was constantly progressing. Together with a fear of becoming more dependent, this caused feelings of angst and loneliness. The most dignity-conserving repertoire came from within themselves. Their self-knowledge had provided them with tools to distinguish what was still possible from what they just had to accept. Their dignity was violated by long waiting times, lack of integrity in care, and deteriorating routines, but also by distanced and sometimes harsh encounters with assistant nurses. Full text (click on pdf icon): view source »

Patient and family caregiver concordance and discordance: A systematic review and narrative synthesis

BMJ SUPPORTIVE & PALLIATIVE CARE | Online – 22 March 2022 – Studies focused primarily on end-of-life care and on patient and family caregiver (FCG) preferences for patient care. Discordance between patients and FCGs in palliative care (PC) can manifest in relational conflict and can result from a lack of awareness of and communication about each other’s preferences for care. Patients’ advancing illness and impending death together with open dialogue about future care including advance care planning can foster consensus between patients and FCGs. Patients and FCGs in PC can accommodate each other’s preferences for care. Further research is needed to fully understand how patients and FCGs move towards consensus in the context of advancing illness. Abstract: view source »

MW Supplement #3:

Ukraine: Special Supplement to Media Watch

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We are at Korczowa-Krakovets, a border crossing between Ukraine and Poland. On the Ukrainian side, the crossing is near the town of Krakovets; on the Polish side, it is the village of Korczowa. Tonight is my first 12-hour shift at Krakovets –just 12 hours ago, our clinic didn’t exist at all. Installed by CMAT’s day-shift team in a previously unused corner of a large white welcome tent, the clinic is the last stop for health care before refugees cross into Poland on foot. view source »

MW Supplement #2:

Ukraine: Special supplement to Media Watch

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The devastating humanitarian crisis in Ukraine raises the vital importance of these issues. In Ukraine, attending to the seriously ill and dying is complicated by the trauma and instability of war, as well as the unfolding COVID-19 pandemic in a country with low vaccination coverage. Organizations such as Palliative Care in Humanitarian Aid Situations & Emergencies (PallCHASE) have called for multisectoral global leaders and governments to ensure timely measures are enacted to maintain human dignity for those with serious health-related suffering during the conflict. Full text: view source »

The PDF below offers an overview of the current situation in Ukraine from the perspectives of the hospice and palliative care communities-at-large and also other organizations concerned with the humanitarian crises in that war-torn country.

MW 755:

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This realist evaluation provides valuable insights into the essential components of a home-based EoLC service for children and their families, which will be of particular interest to policy makers, researchers and professionals across health, social care and the third sector. The programme theory can be tested in other areas with the aim of enhancing paediatric EoLC for families who wish for their child to be cared for and die at home. Full text: view source »

Mindful self-care, self-compassion, and resilience among palliative care providers during the COVID-19 pandemic

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 12 March 2022 – As the first known study to investigate mindful self-care, self-compassion and resilience among palliative care providers, this research has generated a number of key findings to advance knowledge in this area... Mindful self-care, self-compassion, and resilience are positively related to each other. These variables are also associated with greater satisfaction with professional life and perceived lessened impairment in physical and/or mental health stemming from decreased self-care activities due to routine changes related to professional performance in the COVID-19 pandemic. This is despite new self-care resources being developed and made widely accessible online to facilitate mindfulness meditation and promote resilience. Full text: view source »

Nurturing socio-culturally and medically appropriate palliative care delivery: Lessons learned by Israeli medical faculty

JOURNAL OF RELIGION & HEALTH | Online – 9 March 2022 – Israel is one of the few countries with a national policy and defined standards of palliative care (PC); its culture is highly diverse, more traditionally oriented in comparison with Western countries. Described are: 1) PC’s current status, self-image, structural factors; 2) Its relation to cultural, political characteristics; and, 3) The chances, goals and obstacles of advancing PC in Israel. The following are discussed: 1) Definition of PC; 2) Multidisciplinary approach; 3) Special role of nurses; 4) Personal perceptions of death; 5) Understanding the role of medicine; 6) Specialty palliative medicine; 7) Religious, spiritual and cultural aspects; 8) Political and economic aspects; 9) Obstacles and weaknesses; and, 10) Prospects and goals of PC. Full text: view source »

Clinical guidance in neuropalliative care: An American Academy of Neurology position statement

NEUROLOGY | Online – 8 March 2022 – In the minds of many physicians as well as the lay public, palliative care (PC) is often seen as synonymous with hospice, and therefore leads to missed opportunities for the provision of palliative services earlier in the disease process. The authors describe PC … and contrast it with specialty PC. They discuss essential elements of communication skills and prognostication and focus on ethical considerations in neuropalliative care as it relates to disorders of consciousness. This article replaces three other Academy position papers regarding supportive care for patients with unique disorders of consciousness: persistent vegetative state, those who are irreversibly paralyzed but retain cognition, and those who lack decisional capacity. Full text: view source »

MW Supplement:

A bus’s headlights inch forward. Eugenia Szuszkiewicz, a pediatrician and palliative care (PC) specialist, can feel the anxiety balling up in her stomach. The doctor’s stress levels are through the roof. This is a dangerous journey for children who need PC in the best of circumstances. Now 12 of them are doing it in a war. Small and frail bodies are hoisted up for the last time in weary mothers’ arms as they descend from the bus. Some are gently handed over to waiting doctors and nurses. For others, their health is too delicate and requires extra help to safely transport them on to the train... view source »

N.B.

'European Association for Palliative Care Statement on the Ukraine Crises.' Accessed 6 March 2022. view source »

'Médecins Sans Frontières Mobilizes Response in Ukraine and Nearby Countries.' Accessed 6 March 2022. view source »

'Palliative Care in Humanitarian Aid Situations & Emergencies Statement on the Humanitarian Crisis in Ukraine.' Accessed 6 March 2022. view source »

MW 754:

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Some positive outcomes such as lowering levels of surrogate grief may be associated with ACP. Yet, it does not appear that further ACP research will ensure that seriously ill patients will get goal-concordant care. An unfortunate consequence of PC research and advocacy so far is the misguided notion of many hospital systems trying to solve their PC problems by only implementing an ACP initiative. Full text: view source »

Poverty, choice and dying in the U.K.: A call to examine whether public health approaches to palliative care address the needs of low-income communities

MORTALITY | Online – 4 March 2022 – In recognising that death is “everyone’s responsibility,” the compassionate city charter (as one example of a public health approach to palliative care) challenges the narrative of death and dying as an individual responsibility and places it in the community rather than solely with professionals. But the danger is that such approaches rarely acknowledge or call to account the impact of social policy … and the power of the state to affect individual experience. Public health approaches are implemented differently in different places; it may be useful to examine whether some initiatives may rely on communities to be resource-rich … or whether, by being led by statutory or medical institutions, they are failing to understand the priorities of those living on a low income. Full text: view source »

The last year of life for patients dying from cancer vs. non-cancer causes: A retrospective cross-sectional survey of bereaved relatives

SUPPORTIVE CARE IN CANCER | Online – 21 February 2022 – For the non-cancer patient group, a clear disadvantage was identified, including the gap in access to palliative care (PC) and the lack of communication around prognosis, including the information about the imminent death. The results underline the importance of early integration of PC for patient groups with non-malignant diseases, reconsidering the need for disease-modifying treatment strategies. Furthermore, since GPs have been identified as key healthcare providers for the non-cancer patients and access to PC is still limited for this patient population, it will be important for both GPs and outpatient disease-specific specialist physicians to avoid fragmentation of care by communicating relevant patient information. Full text: view source »

Terminally ill children flee war-torn Kharkiv on makeshift medical train

MW 753:

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To this end, the first Observatory on End-of-Life Care for People with Dementia was successfully implemented in Quebec, and pilot data were used to draw a preliminary portrait of this population. The newly implemented Observatory could prove useful for assessing the impact of urgently needed long-term care reforms and the effects of innovative interventions in dementia EoLC, for which the evidence base is currently very limited. Full text: view source »

End-of-Life Aid Skills for Everyone in Scotland

PALLIATIVE CARE & SOCIAL PRACTICE | Online – 15 February 2022 – Families, friends and communities have an important role to play in providing informal support when someone is faced with deteriorating health, caring responsibilities, death or bereavement. However, people can lack the confidence, skills and opportunities to offer this support. Public education is an example of a public health approach to palliative care that can help to develop individual skills and knowledge relating to these issues. The Scottish Partnership for Palliative Care has developed a public education course, which aims to enable people to be more comfortable and confident supporting family/community members with issues they face during dying, death and bereavement. Full text: view source »

Introducing the special collection on palliative care for LGBTQ2S+ individuals and families

PALLIATIVE CARE & SOCIAL PRACTICE | Online – 11 February 2022 – This special collection of Palliative Care & Social Practice features the work of top scholars in the fields of LGBTQ2S+ (lesbian, gay, bisexual, transgender, queer, and two-spirit) aging, health, and palliative care (PC). The articles in the collection approach the topic of PC for LGBTQ2S+ individuals from a variety of perspectives and collectively introduce readers to key issues facing this population near the end of life. Improving the quality of care provided to LGBTQ2S+ individuals and their families requires a multifaceted approach to understanding their needs and lived experiences and then educating their care teams on how best to address those needs more fully. Full text: view source »

MW 752:

The Lancet Commissions

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A Lancet Commission has called for public attitudes to death and dying to be rebalanced, away from a narrow, medicalised approach towards a compassionate community model, where communities and families work with health and social care services to care for people dying. The Commission analysed how societies around the world perceive death and care for people dying, providing recommendations to policymakers, governments, civil society, and health and social care systems.1 view source »

1.‘Report of the Lancet Commission on the Value of Death: Bringing death back into life,’ The Lancet, published online 31 January 2022. Access full text at: view source »

What happens when palliative care is neglected as a public health priority?

EUROPEAN ASSOCIATION FOR PALLIATIVE CARE | Online – 26 January 2022 – The COVID-19 pandemic has exposed and magnified many of the weaknesses of our healthcare systems, including the lack of access to palliative care (PC) for patients dying alone with COVID-19. It is striking how little we have heard in the general media about PC in this pandemic, a symptom of how it is under-valued as a public health priority... COVID-19 has a major impact on people, not only physically, but also mentally. Once someone is ill, there is uncertainty about the course of the disease, the symptom burden and the treatment. If an infected person has the misfortune to need hospitalisation, and the good fortune to receive it, a terrible period follows on the ward or, worse, in intensive care. view source »

Research Matters

Improving care of people with serious medical illness: An economic research agenda for palliative care

JAMA HEALTH FORUM | Online – 28 January 2022 – Policymakers and the U.S. public are largely aligned on the need to improve care for patients with serious illness while curtailing wasteful spending and easing burdens on family caregivers. By one estimate, the value of unpaid U.S. family caregiving for people with serious illness exceeds $300 billion annually. Studies to date suggest that palliative care (PC) could help increase the value, defined as some combination of better quality and lower costs, of U.S. healthcare spending. PC … improves care quality. However, without robust economic evidence to calculate the value equation, including costs and benefits, the current paradigm of high costs, poor outcomes, and growing inequities will persist for people with serious illnesses. Full text: view source »

MW 751:

Important Notice: With this, the 751st issue, Media Watch will be published on a biweekly basis, that is, every two weeks.
Feedback on the focus and content of Media Watch is welcomed.

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The authors call for research that utilizes inclusive methods and broad representation of diverse voices to design a vivid, practical, and evidence-based definition of clinical excellence for PC specialists. Abstract (w. references): view source »

A novel scale to assess palliative care patient experience of feeling heard and understood

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 8 January 2022 – Patient experience of palliative care (PC) serves as an important indicator of quality and patient centeredness. The authors of this article developed a novel patient-reported scale measuring ambulatory PC patients’ experience of feeling heard and understood by their providers. They used self-reported patient experience data collected via mixed-mode survey administration. Combining psychometric information with the expert ratings, the authors established the final four-item scale, which was reliable and had good convergent validity. This novel multi-item Feeling Heard & Understood Scale can be used to measure and improve ambulatory PC patient experience. Abstract (w. references): view source »

The significance of the distinction between “having a life” vs. “being alive” in end-of-life care

MEDICINE HEALTH CARE & PHILOSOPHY | Online – 11 January 2022 – The distinction between the capacity for living life (having a life) vs. basic physical survival (being alive) could play a significant role in end-of-life care. This distinction assists patients to have their decisions respected and supported with clinicians’ responsibilities of beneficence and non-maleficence. By separating these often-conflated, but differing kinds of existing, patients and surrogates can better identify which they regard as more valuable. Facilitating conversations between patients and families in identifying values, interests and preferences helps clinicians provide clinical expertise and information. The distinction between the capacity for living life vs. basic physical survival supports the shared decision-making process... Full text: view source »

MW 750:

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In a recent commentary … a palliative care (PC) specialist, and colleagues wrote that despite decades of research on ACP, there are scant data to show that it accomplishes its goals.1 A 2020 review of more than 60 high-quality recent studies on ACP found no impact on whether patients received the care they wanted, or how they rated the quality of their lives afterward.2 When doctors talk to patients about advance directives, they implicitly promise that the directives will help patients get the care they want and unburden their loved ones, Dr. R. Sean Morrison, a PC specialist observes. “And the reality is that we’ve been pushing a myth,” he adds. view source »

1. ‘What’s wrong with advance care planning?’ Journal of the American Medical Association, 2021;326(16): 15751576. [Noted in Media Watch 11 October 2021 (#738, p.7)] Full text: view source »
2. ‘Deconstructing the complexities of advance care planning outcomes: What do we know and where do we go? A scoping review,’ Journal of the American Geriatrics Society, 2021;69(1):234-244. Full text: view source »

A new paradigm is needed: Top experts question the value of advance care planning

KAISER HEALTH NEWS | Online – 6 January 2022 –For decades, Americans have been urged to fill out documents specifying their end-of-life wishes before becoming terminally ill – living wills, do-not-resuscitate orders, and other written materials expressing treatment preferences. Now, a group of prominent experts is saying those efforts should stop because they haven’t improved end-of-life care. “Decades of research demonstrate advance care planning doesn’t work. We need a new paradigm,” said Dr. R. Sean Morrison, chair of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai … and a co-author of a recent opinion piece advancing this argument...1 view source »

1. ‘What’s wrong with advance care planning?’ Journal of the American Medical Association, 2021;326(16): 1575-1576. [Noted in Media Watch 11 October 2021 (#738, p.7)] Full text: view source »

Shifting to serious illness communication

JAMA NETWORK OPEN | Online – 7 January 2022 – Although facing challenging circumstances, patients who have engaged in serious illness communication can better understand difficult prognostic information, recalibrate hopes and priorities, and, when the time comes, make medical decisions consistent with their values. These patients might make a transition to comfort care, or they might choose intensive care. By engaging patients with serious illness and their loved ones in iterative conversations that build trust and an awareness of illness, clinicians could enhance the person-centeredness of care and enable values-based medical decision-making. This Viewpoint focuses on a related emerging construct and promising intervention, serious illness communication, and describes its components, presents evidence supporting the approach, and discusses areas for further research. Full text: view source »

MW 749:

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Across study methodologies, the following 8 quality domains were identified: 1) Discussion frequency; 2) Documentation accessibility; 3) Discussion timing; 4) Healthcare proxy; 5) Health goals or values; 6) Scope of treatment/code status; 7) Prognosis/illness understanding; and, 8) End-of-life care planning. Each study assessed between 2 and 6 domains. Divergent methods for assessing quality domains were utilized, including manual qualitative analysis and natural language processing techniques. Defining and measuring the quality of documentation is critical to developing ACP programs that improve patient care. This review provides an adaptable framework centered around quality domains. Abstract (w. references): view source »

A systematized approach to advancing the quality of community-based palliative care

AMERICAN JOURNAL OF HOSPICE & PALLIATIVE MEDICINE | Online – 27 December 2021 – Despite growing recognition of the importance of community-based palliative care (PC), optimizing the use of services continues to be a challenge. Until recently, key barriers (in the U.S.] were reimbursement and limited access. As services have become increasingly available, engagement of patients and their caregivers has emerged as a major obstacle. The Palliative Activation SystemTM (PAS) is a comprehensive, quality improvement methodology designed to promote enhanced engagement of seriously ill adults and their caregivers in optimizing the use of community-based PC services and accelerate clinicians’ progress in meeting patients’ and caregivers’ care goals. The authors of this article describe the design of the PAS. Experts in patient engagement and the development and evaluation of PC programs advised organizational leaders in the development of this methodology. The framework informed the selection of three core concepts – care alignment, illness trajectory, and social determinants of health – as foundational to the goals of the PAS. Additionally, this framework guided the selection of measures that will be used to assess progress in achieving enhanced engagement. This background work, coupled with findings from interviews with patients and caregivers who are current recipients of PC services, resulted in the implementation and ongoing testing of strategies targeting clinicians and organizational leaders and designed to enhance engagement. Lessons learned from the design phase of the PAS will advance the efforts of other organizations committed to increasing patient and caregiver engagement and enhancing attainment of their goals. Full text: view source »

Why are we failing to do what works? Musings on outpatient palliative care integration in cancer care

JCO ONCOLOGY PRACTICE | Online – 22 December 2021 – In their recent study, Yeh et al add to the mounting evidence showing a myriad of benefits conferred by outpatient integrated palliative care (PC) in oncology.1 However, despite this clear evidence, we have not achieved widespread PC implementation outside of trials. First, we must be clear in our terminology. The term PC is often misused and misunderstood as a euphemism for end-of-life care or hospice. Specialty PC is also different from the primary PC usually provided by the oncology team (e.g., basic symptom management and what is often called supportive care). In using the term PC here, we refer to sophisticated subspecialty care that aims to prevent and relieve suffering by assessment and treatment of physical, spiritual, and psychosocial problems. It is thereby appropriate at any stage of illness and can be provided even alongside curative therapies. The evidence base supporting outpatient PC integration in oncology is robust… Full text: view source »

1. ‘Different associations between inpatient or outpatient palliative care and end-of-life outcomes for hospitalized patients with cancer,’ JCO Oncology Practice, published online 16 December 2021. Full text: view source »

High-quality nursing home and palliative care – one and the same

JOURNAL OF AMERICAN MEDICAL DIRECTORS ASSOCIATION | Online – 23 December 2021 – Many individuals receiving post-acute and long-term care (LTC) services in nursing homes have unmet palliative and end-of-life care (EoLC) needs. Hospice has been the predominant approach to meeting these needs, although hospice services generally are available only to LTC residents with a limited prognosis who choose to forego disease-modifying or curative therapies. Two additional approaches to meeting these needs are the provision of palliative care (PC) consultation through community- or hospital-based programs and facility-based PC services. However, access to this specialized care is limited, services are not clearly defined, and the empirical evidence of these approaches’ effectiveness is inadequate. In this article, the authors review the existing evidence and challenges with each of these three approaches. They then describe a model for effective delivery of palliative and EoLC in nursing homes, one in which palliative and EoLC are seen as integral to high-quality nursing home care. To achieve this vision, the authors make four recommendations: 1) Promote internal palliative and EoLC capacity through comprehensive training and support; 2) Ensure that state and federal payment policies and regulations do not create barriers to delivering high-quality, person-centered palliative and EoLC; 3) Align nursing home quality measures to include palliative and EoLC-sensitive indicators; and, 4) Support access to and integration of external PC services. These recommendations will require changes in the organization, delivery, and reimbursement of care. All nursing homes should provide high-quality palliative and EoLC, and this article describes some key strategies to make this goal a reality. Abstract: view source »

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