Global Palliative Care News Archive

MEDIA WATCH, CREATED AND DISTRIBUTED BY BARRY R. ASHPOLE

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Barry R. Ashpole, Guelph, Ontario, CANADA
519.837.8936 | barryashpole@bell.net

MW 602: Breaking silence: A survey of barriers to goals-of-care discussions from the perspective of oncology practitioners

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Making time for these crucial conversations and planning to have them throughout the course of illness is imperative. GoC discussions should be initiated by physicians and nurses who have received focused training in this regard, and the discussion would be made richer with the help of skilled allied health professionals. Full text: view source »

A practical approach to assessing and mitigating loneliness and isolation in older adults

JOURNAL OF THE AMERICAN GERIATRIC SOCIETY | Online – 14 February 2019 – Despite the adverse impacts of loneliness and social isolation on quality of life, and their strong association with health outcomes, the evaluation of loneliness and isolation have not been integrated into medical care. The risks for loneliness may be of particular concern to persons with serious illness as patients and caregivers cope with the experience of loss, loss of independence, and increasing care needs. To date, there has been no uniform way of evaluating and documenting loneliness and social isolation as a part of a review of a patient's social determinants of health. This article provides a framework for healthcare systems, providers, and community members working with older adults to 1) understand loneliness, isolation, and its counterpart social connection; 2) describe the different ways loneliness affects health; and, 3) create a framework for asking about and documenting these experiences. Finally, because the lack of studies assessing whether targeting loneliness can improve health outcomes is a major gap, we provide guidance on the future of interventions. Abstract: view source »

Has the National Health Service Long Term Plan forgotten we are all going to die?

THE LANCET | Online – 2 February 2019 – 'NHS bosses in England say a new 10-year plan could save up to 500,000 lives,' reported the BBC when the NHS Long Term Plan was launched in January 2019.1,2 The plan presents a new service model for the 21st century and makes the case for improvements in prevention, treatment, outcomes, care quality, and reducing health inequalities among other priorities. But you have to search hard to find any mention of end-of-life (EoL) care. Indeed, it's virtually hidden: care at the EoL appears in one short paragraph in a section headed with the upbeat "People will get more control over their own health and more personalised care when they need it." And the first benefit of improving and personalising EoL care is "a reduction in avoidable emergency admissions," clarifying that dying is inconvenient for the efficiency of hospitals. Abstract (w. list of references): view source »

MW 601: The ageing and deinstitutionalisation of death: Evidence from England and Wales

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To explore recent and likely future trends in age and place of death, mortality statistics from 2006 to 2013 were analysed and projected to 2050 using age- and gender-specific rates. Results confirmed recent increasing age at death and indicated a trend for increasing proportions of older people to die at home. Projections indicated large increases in home-based deaths, particularly for men aged 65 and over. Consistent with people's wishes, there may be a partial return to the view that dying at home is a normal experience. Resource allocations are likely to need to shift to support people dying at home and their formal and informal carers. Abstract: view source »

Emergency department-based palliative interventions: A novel approach to palliative care in the emergency department

JOURNAL OF PALLIATIVE MEDICINE | Online – 5 January 2019 – Patients with palliative care (PC) needs were identified using an abbreviated 5-question version of the screen for palliative and end-of-life care needs in the emergency department (ED) – 5-SPEED. These patients were then automatically flagged for an ED-based palliative intervention (EPI) as determined by their identified need. The primary outcome was the prevalence of PC needs among patients with active cancer. Secondary outcomes were the rate of EPI services successfully delivered to ED patients with unmet PC needs, ED length of stay (LoS), and repeat ED visits within the next 10 days. Of the 1,278 patients with active cancer, 817 (63.9%) completed the 5-SPEED screen. Of the patients who completed the screen, 422 patients (51.7%) had one or more unmet PC needs and 167 (39.6%) received an EPI. There were no differences in ED LOS or 10-day repeat ED visit rates between patients who did or did not receive an EPI. This ED-based intervention successfully screened for palliative needs in cancer patients and improved access to specific palliative services without increasing ED LOS. Abstract: view source »

Representations of palliative care, euthanasia and assisted dying within advocacy declarations

MORTALITY | Online – 4 February 2019 – It is well known that there are disagreements between the proponents of palliative care (PC) and of euthanasia or assisted dying, often with little common ground, shaping the end-of-life discourse internationally. Advocacy documents or "declarations" constitute a significant feature of this discourse. The aim of this study was to explore the content of such declarations and to focus on what they can tell us about PC and assisted dying and their dispositions towards one another. 104 declarations were identified and included in the study, covering the period 1974 to 2017. The authors classified them based on their primary purpose: those with the goal of advocating for PC services, education and research were grouped under "palliative care declarations"; those with the primary objective of advocating for or against euthanasia/assisted dying were classified as "euthanasia/assisted dying declarations." Their analysis revealed the content of the declarations could be broadly categorised into three dimensions: framing, claiming and demanding. The authors demonstrate that these declarations reveal a struggle over the construction of meanings relating to PC and assisted dying and constitute a valuable resource for the analysis of an unfolding debate. Full text: view source »

MW 600: Unpacking "the cloud": A framework for implementing public health approaches to palliative care

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The sharing of resources, tools, and innovations among implementers of CCs is occurring globally. Although this can increase impact, it also generates complexity that can complicate robust evaluation. When initiating population health level projects, it is important to clearly define and organize concepts and processes that are proposed to influence the health outcomes. The Health Impact Change Model (HICM) was developed to unpack the complexities associated with the implementation and evaluation of a Canadian CC intervention. The HICM offers utility for citizens, leaders and decision-makers who are engaged in the implementation of population health level strategies or other social approaches to care, such as compassionate cities and age or dementia-friendly communities. The HICM's concepts can be adapted to address a community's healthcare context, needs, and goals for change. The authors share examples of how the model's major concepts have been applied in the development, evaluation and spread of a complex CC approach. Abstract: view source »

Cancer and opioids: Patient Experiences with Stigma (COPES)

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 28 January 2019 – This study, to the authors' knowledge, provides the first evidence of opioid stigma and its consequences in cancer patients and offers potential targets for interventions aimed at reducing stigma and encouraging safe, effective opioid use. Participants were 125 adults undergoing active cancer treatment being seen at the Moffitt Supportive Care Medicine Clinic [headquartered in Tampa. Florida]. Patients were primarily women (65%) aged 45-64 years (49%), most commonly diagnosed with breast (23%) and hematologic (15%) cancer. Among patients who reported opioid use, the most common reason for use was pain relief (94%), followed by improved sleep (25%). A sub-set of patients reported using less (13%) or more (8%) opioid medication than advised. Opioid stigma was endorsed by 59/97 patients prescribed opioids (61%), including fear of addiction (36%), difficulty filling prescriptions (22%), and awkwardness communicating with providers (15%). Stigma-related behaviors were endorsed by 28 (29%) of respondents prescribed opioids, with "taking less opioid medication than needed" as the most commonly endorsed behavior (20%). Abstract: view source »

The clinical evaluation of the wish to hasten death is not upsetting for advanced cancer patients: A cross-sectional study

PALLIATIVE MEDICINE | Online – 28 January 2019 – An important concern of healthcare professionals when exploring the wish to hasten death with patients is the risk of causing them some type of distress. The authors assessed 193 advanced cancer patients admitted to an oncology ward for the wish to hasten death using a semi-structured clinical interview. After the assessment the participants were surveyed to determine whether they found the interview upsetting and, if so to what extent, and also their opinion regarding the assessment's importance. The wish to hasten death was reported by 46 (23.8%) patients. The majority (94.8%) did not find talking about the wish to hasten death to be upsetting, regardless of whether they presented it or not. The majority (79.3%) considered that it was either quite or extremely important for the clinician to proactively assess the wish to hasten death and discuss this topic, regardless of whether they experienced it. These findings suggest that healthcare professionals can explore the wish to hasten death proactively in routine clinical practice without fear of upsetting patients. Abstract: view source »

MW 599: Public policy: An analgesia for opioid diversion

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This has downplayed the importance of medically treating pain, especially in the context of palliative care. This article recommends the intelligent use of public policy to alleviate the opioid diversion problem while acknowledging the importance of appropriate pain management. Concurrently, this article recommends providing continuous education and support for physicians, dispensers, and the like and adoption of soft law approaches by legislators and enforcement bodies to prevent relentless clamping down on opioid abusers. In conclusion, appropriate policies and guidelines are necessary to support the entire health care body in executing a coordinated approach and exercising vigilance to better manage the opioid diversion problem. Abstract: view source »

Can Death Cafés resuscitate morale in hospitals?

MEDICAL HUMANITIES | Online – 19 January 2019 – Death Cafés are non-profit social franchises that arise spontaneously in communities to serve as informal forums for discussing death. There is a great need within the medical community for the kind of conversation that Death Cafés foster: open, unstructured, spontaneous, genuine and interdisciplinary dialogue. Burnout in healthcare, with symptoms of exhaustion, depersonalisation and decreased efficacy, is a global crisis, with alarming estimates suggesting one in three practicing physicians experience burnout. While open-forum community-based Death Cafés exist widely, there appears to be no evidence in the literature to suggest that healthcare settings have adapted this model for fostering debriefings among hospital employees. The authors introduce the concept of hospital-based Death Cafés as distinct from community-based Death Cafés. From their experience, hospital-based Death Cafés are easy to implement, inexpensive, require little planning and yet offer tremendous reward to participants. Should the phenomenon of Death Cafés take off in hospitals as it has in communities internationally, the authors propose that this intervention be studied for its effect on healthcare worker burnout. Abstract: view source »

Early palliative care: Pro, but please be precise!

ONCOLOGY: RESEARCH & TREATMENT, 2019;42:11-18. Many patients suffer from distressing symptoms or problems in early phases of such illness. Therefore, it is not a question of "if" palliative care (PC) should be integrated early into oncology, but "how." General PC is defined as an approach that should be delivered by healthcare professionals regardless of their discipline. This is often referred to as "general" or "primary" PC. For this, routine symptom assessment, expertise concerning basic symptom management, and communication skills are basic requirements. Communication skills include the willingness to engage in discussions concerning patients' fears, worries and end-of-life issues without the fear of destroying hope. Specialist PC is provided by specialist teams regardless of the patients' disease, be it cancer or non-cancer. Such teams should be integrated in the care of PC patients depending on the availability of these services and the patients' needs. Key messages: "Early PC" must not be used synonymously with "early specialist PC" because much of the PC is delivered as basic oncology PC. For the integration of specialist PC, the identification of triggers is warranted in different institutions to facilitate a meaningful and effective cooperation. Such cooperations should be based on patients' needs, but must also account for questions of availability and resources. Abstract (w. list of references): view source »

MW 598: "This condition isn't going to get any better so I can't see why we're prolonging it": Risks and benefits of using empirical research to inform normative decisions concerning end-of-life care

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However, moral questions, such as the right balance between preserving life and maximising quality of life, are an inherent part of the care-planning process. The authors take nutritional support as an example of one area of decision-making that needs to be addressed during care planning for people with progressive neurological disease. It describes research into the way in which the values of practitioners, members of the public and people with lived experience of progressive neurological disease may influence their decision-making about the right approach to maintaining nutritional intake during end-of-life care; and, discusses some of the challenges of incorporating such findings into normative frameworks. Abstract: view source »

Top ten tips palliative care clinicians should know about medical cannabis

JOURNAL OF PALLIATIVE MEDICINE | Online – 14 January 2019 – The use of medical cannabis is increasing significantly throughout the U.S. in spite of limited and sometimes contradictory data about its effectiveness. Palliative care providers are being asked to consider cannabis as part of symptom-directed treatment regimens although many providers have limited experience recommending medical cannabis and were trained before it was commercially available. This article seeks to dispel myths about medical cannabis and provides a balanced view of the benefits and burdens of this therapeutic option, providing evidence where it exists and offering practicing clinicians guidance on conditions in which medical cannabis is likely to be helpful or burdensome. Abstract: view source »

Reducing the role of the courts in treatment withdrawal

MEDICAL LAW REVIEW | Online – 15 January 2019 – In A National Health Service Trust and others v Y and another, the Supreme Court [in the U.K.] concludes that a court declaration is not a mandatory requirement before clinically assisted nutrition and hydration (CANH) is withdrawn from a person with prolonged disorder of consciousness (PDOC). The decision recognises the practical challenges for the courts, hospitals, and medical staff of involving over-worked courts in perceived non-controversial clinical judgments. It also recognises that judicial involvement can cause unnecessary anguish for the family and may merely delay the inevitable. It is an understandable decision and in most cases it is likely to be unproblematic. However, the judgment does not adequately recognise the vital role played by a court application in ensuring that the voice of the incapacitated patient is heard and explicitly considered by a neutral person. The withdrawal of CANH from persons in PDOC raises unique ethical concerns because it leads to the death of a vulnerable person not able to express his or her own opinion on whether life should now cease and it does so by withdrawing the most basic of medical treatment. It brings to an end the state's positive steps to preserve the life of the patient and thus requires very careful scrutiny in order to ensure compatibility with Article 2. It is regrettable, therefore, that the Supreme Court in Y has removed a valuable safeguard for both the right to life and the autonomy of incapacitated patients. Full text: view source »

MW 597: New definition of palliative care

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A 2002 definition by the World Health Organization (WHO) limits PC to a service that can be offered to relieve problems associated with life-threatening illnesses.1 Following the recommendation of The Lancet Commission on PC and pain relief,2 and as an organization in official relations with the WHO, the Association designed, developed, and implemented a project to revise and adopt a new PC definition. The objective was to find consensus on a definition that focuses on the relief of suffering, and is also timely and applicable to all patients regardless of diagnosis, prognosis, geographic location, point of care, or income level. Download/view at: view source »

1. 'Definition of Palliative Care,' WHO, 2002. Download/view at: view source »

2. 'Alleviating the access abyss in palliative care and pain relief: An imperative of universal health coverage,' The Lancet, October 2017. [Noted in 16 October 2017 issue of Media Watch (#534, p.14)] Full text: view source »

Spiritual uncertainty among hospice providers – "there were tensions"

JOURNAL OF HOSPICE & PALLIATIVE NURSING, 2019;21(1):90-95. How providers of end-of-life (EoL) care perceive spirituality both within themselves and for others can directly impact their ability to provide spiritual care to patients and families. Uncertainty about spirituality can contribute to the awkwardness of spiritual care. Spiritual uncertainty includes the questions, worries, and doubts people have about the meaning, beliefs, connections, self-transcendence, and value that comprise spirituality. This article reports qualitative findings from a mixed-methods study that sought to understand spiritual uncertainty among hospice providers. Data were collected from 28 hospice team members (nurses, physicians, social workers, and expressive therapist) using focus groups, reflective journals, and one-on-one interviews. An overarching theme emerged that described the tensions perceived by providers caring for hospice patients. Those tensions were further categorized as being interpersonal, intrapersonal, and transpersonal in nature. The identification of tension as a source of strain for providers delivering spiritual care is necessary to the development of future interventions that can assist providers and patients navigating EoL spirituality. Abstract: view source »

Understanding the barriers to introducing early palliative care for patients with advanced cancer: A qualitative study

JOURNAL OF PALLIATIVE MEDICINE | Online – 11 January 2019 – The findings of this study suggest that referral to palliative care (PC) specialists shortly after the diagnosis of advanced cancer increases the terminological barriers, induces avoidance patterns, and makes early disclosure of poor prognosis harder for oncologists. This situation is attributable to the widespread idea that PC means terminal care. In addition, the fact that the "early palliative care" (EPC) concept is poorly understood increases the confusion between EPC and supportive care. Defining the EPC concept more clearly and explaining to health professionals and patients what EPC consists of and what role it is intended to play, and the potential benefits of PC services could help to overcome the wording barriers rooted in the traditional picture of PC. Abstract: view source »

MW 596: Caring for dying patients: Visual narratives from the intensive care unit

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Creating these visual images helped me to reflect and better understand how our daily medical interventions truly impact patient care. For viewers, I hope these images facilitate more mindful ways to care for patients and their families as they face illness and death. Each drawing represents a composite of patients I have encountered, and I used donated cadavers from the New York University Anatomy Lab to help accurately depict the anatomy in my illustrations. Full (illustrated) text: view source »

What does the word "treatable" mean? Implications for communication and decision-making in critical illness

CRITICAL CARE MEDICINE | Online – 21 December 2018 – The authors identified two distinct concepts that study participants used to interpret the word "treatable": 1) A "good news" concept, in which the word "treatable" conveys a positive message about a patient's future, thereby inspiring hope and encouraging further treatment; and, 2) An "action-oriented" concept, in which the word "treatable" conveys that physicians have an action or intervention available, but does not necessarily imply an improved prognosis or quality of life. The overwhelming majority of non-physicians adopted the "good news" concept, whereas physicians almost exclusively adopted the "action-oriented" concept. For some non-physicians, the word "treatable" conveyed a positive message about prognosis and/or further treatment, even when this contradicted previously stated negative information. Physician use of the word "treatable" may lead patients or surrogates to derive unwarranted good news and false encouragement to pursue treatment, even when physicians have explicitly stated information to the contrary. Further work is needed to determine the extent to which the word "treatable" and its cognates contribute to widespread decision-making and communication challenges in critical care, including discordance about prognosis, misconceptions that palliative treatments are curative, and disputes about potentially inappropriate or futile treatment. Abstract: view source »

Publishing Matters

Predatory open-access publishing in palliative and supportive care

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 27 December 2018 – Predatory publishing is commonly defined as an exploitative, fraudulent, open-access model that applies charges to authors without providing proper editorial services, characteristic of legitimate journals. This phenomenon is universally considered as one of the most serious threats to scientific community. To enhance awareness among scholars and clinicians, predatory publishing has been surveyed in several biomedical fields, such as neuroscience, orthopedics, rehabilitation, and anesthesiology. Abstract (inc. link to references): view source »

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