Global Palliative Care News Archive


Please feel free to share this weekly report with your colleagues.
Barry R. Ashpole, Guelph, Ontario, CANADA
519.837.8936 |

MW 534: Addressing a patient’s hope for a miracle

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Effective, sensitive engagement requires the PC provider to attend to these variegated hopes, fears, and commitments. This case presents a typology of ways patients express hope for a miracle along with analysis of the motivations and beliefs underlying such hopes and suggestions for tailored responses by PC providers. Abstract: view source »

The Lancet Commission report

Alleviating the access abyss in palliative care and pain relief : An imperative of universal health coverage

THE LANCET | Online – 12 October 2017 – The lack of global access to pain relief and PC throughout the life cycle constitutes a global crisis, and action to close this divide between rich and poor is a moral, health, and ethical imperative. The need for PC and pain relief has been largely ignored. Yet, PC and pain relief are essential elements of universal health coverage (UHC). This Lancet Commission aims to: 1) Quantify the heavy burden of serious health-related suffering associated with a need for PC and pain relief; 2) Identify and cost an essential package of PC and pain relief health services that would alleviate this burden; 3) Measure the unmet need of an indispensable component of the package – off patent, oral, and injectable morphine; and, 4) Outline national and global health-systems strategies to expand access to PC and pain relief as an integral component of UHC while minimising the risk of diversion and non-medical use. Full text: view source »

MW 533: Quality hospice care in adult family homes: Barriers and facilitators

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In contrast, initiating hospice services for a resident in an AFH without a joint commitment to palliation or with a territorial versus collaborative approach to end-of-life care can increase stress for families and exacerbate misunderstandings or feelings of mistrust. Physicians and others providing services to older adults should remain mindful of the advice of experienced family members, who emphasized the importance of finding an AFH with a track record of positive collaborations with hospice agencies if the need for end-of-life care is anticipated. Full text: view source »

The strengths and challenges of palliative day-care centers: Qualitative study with the professionals involved

JOURNAL OF PALLIATIVE CARE | Online – 3 October 2017 – Palliative day-care centers are a marginal service within the palliative care landscape. Relevant research on the potential and added value of this service model is lacking, and it may therefore be underappreciated. Participants [in this study] were professional representatives of all 5 Flemish palliative day-care centers: 7 participants for the individual interviews and 6 participants for the focus group. Five strengths were identified: 1) Unique care model; 2) Contact with peers in a non-clinical environment; 3) A reliable and competent multi-professional team; 4) Care tailored to the individual; and, 5) Respite for family caregivers. The most significant challenges were: 1) Optimizing government funding; and, 2) Achieving sufficiently high occupancy and referral. According to interviewees, this latter challenge was due to the low visibility of the service to professionals and the public, unclear referral criteria, and the psychological threshold for referral among patients and professionals. Palliative day-care centers strive to provide unique services for patients with advanced illness. However, negotiating adequate funding and raising referral by changing current perceptions are paramount to unlocking their potential. Scientific analysis of cost utility and patient outcomes associated with their use is necessary. Abstract: view source »

MW 532: Hospice in crises

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Now, however, the hospice model is coming under stress of its own. Some of that’s because the industry has changed, with a lot more for-profit hospice agencies and investor-owned chains, which are coming under scrutiny from regulators. But much of the stress comes from shifts in how we die, how we live – and with whom. These are big demographic changes that make the original conception of hospice harder to carry out as it was once intended. With baby boomers aging and likely to live with serious illness for several years, understanding how best to take care of the aged and the dying is becoming an ever more pressing issue in America – emotionally, morally, and financially. view source »

Extract from Politico article

Even strong advocates of hospice know that it’s time for changes to match the complex medical needs of today's patients and the demographic realities of the country – as well as trends arising from long-term use of hospice in existing institutions like nursing homes. But in the near future, there aren't a whole lot of fabulous solutions, at least not ones that don't cost a lot of money.

Patient-centredness and consumerism in healthcare: An ideological mess

JOURNAL OF THE ROYAL SOCIETY OF MEDICINE | Online – 25 September 2017 – Two concepts appear to permeate political rhetoric concerning healthcare in the U.K. and elsewhere: patient-centred care and consumerism. Concerned that these two important ideas should not get conflated in public debates about healthcare, the authors outline their different philosophical origins and note their differences and similarities. They argue that both can be used in ways that are muddled or insincere, with implications for healthcare delivery. Introduction: view source »

MW 531: The effect of communication skills training for generalist palliative care providers on patient-reported outcomes and clinician behaviors: A systematic review and meta-analysis

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However, the effects of training on clinicians' behaviors during simulated interactions are not reflected in their behaviors when interacting with real patients, with no effect found in the latter. Although in most cases this finding was across different studies using different measures, this pattern is present in the work by Liénard et al and Delvaux et al in which the same measures were administered to the same participants in both simulated and real patient interactions. Measurement during simulated interactions might overestimate clinicians’ skills, or skill levels during interactions with real patients might be more difficult to change or measure. Full text: view source »

Distress due to prognostic uncertainty in palliative care: Frequency, distribution, and outcomes among hospitalized patients with advanced cancer

JOURNAL OF PALLIATIVE MEDICINE | Online – 18 September 2017 – The authors describe the prevalence and distribution of distress due to prognostic uncertainty among hospitalized patients with advanced cancer before palliative care (PC) consultation. They evaluate the association between this type of distress and overall quality of life (QoL) before and after PC consultation. Two hundred thirty-six participants completed the baseline assessment. Seventy-seven percent reported being at least moderately bothered by prognostic uncertainty and half reported substantial distress. Compared with others, those who were distressed by prognostic uncertainty reported poorer overall QoL before PC consultation and greater improvement in QoL following consultation. Abstract: view source »

MW 530: Continuation of non-essential medications in actively dying hospitalised patients

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More common were orders for simvastatin, calcium tablets, multivitamins, ferrous sulfate, diphenhydramine and subcutaneous heparin. Significant decreases were found for donepezil, propoxyphene, metformin and multivitamins. Orders for one or more non-essential medications were less likely to occur in association with palliative care consultation, do-not-resuscitate orders and orders for death rattle medication. Patients who died in an intensive care unit were more likely to receive a non-essential medication, as were older patients. Abstract: view source »

Gaps in patients' understanding of palliative chemotherapy. Can we better communicate that treatment is not curative?

EXPERT REVIEW OF QUALITY OF LIFE IN CANCER CARE | Online – 11 September 2017 – Misunderstanding in cancer patients receiving chemotherapy is common; 50% of cancer chemotherapy is given with palliative intent. Many patients receiving chemotherapy for incurable cancer may not understand that chemotherapy is unlikely to be curative. Cancer patients expect to share treatment decisions with their oncologist. Provision of a question prompt list and endorsement by physicians enhances patient participation in consultations and promotes patient questions about prognosis. Audio-recordings of oncologist consultations with newly detected incurable cancer patients document that most patients were informed about the aim of cancer treatment and that their disease was incurable. Oncologists checked patient understanding in only 10% of consultations. Abstract: view source »

MW 529: What are families most grateful for after receiving palliative care? Content analysis of written documents received: A chance to improve the quality of care

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Family carers highlight the importance of key aspects that require a close relationship between health professionals and themselves, suggesting that this component or aspect could be used as a quality indicators of care. Three different content categories emerged from the authors' analysis: 1) Recognition of the care received and the value of particular aspects of care within recognised difficult situations included aspects such as kindness, listening, attention to the family, empathy, closeness, affection and the therapeutic relationships established; 2) Family recognition of the achievements of the PC team indicated as relief from suffering for the patient and family, opportunity of dying at home, help in facing difficult situations, improvement in quality of life and wellbeing, and feeling of serenity during bereavement; and, 3) Messages of support related to the need of resources provided. The relational component emerges as an underlying key aspect of family carers’ experience with PC home service. Full text: view source »

The spiritual nature of uncertainty among hospice patients

JOURNAL OF HOSPICE & PALLIATIVE NURSING, 2017;19(5):480-486. People with protracted and life-limiting illness engage in end-of-life (EoL) transitions as they prepare for death. The EoL is a time of mystery that elicits uncertainties in the form of questions, worries, and doubts. If not managed properly, uncertainties can contribute to emotional distress and feelings of lost control. Currently, uncertainty occurring at the EoL is under researched. Study participants were asked to describe the uncertainties that they had while they were dying. Interestingly, most of the stories about uncertainty were spiritual in nature. An overall theme of "uncertainty as a bridge" emerged from the data as the way uncertainties affected their dying. Two sub-themes of "uncertainties about dying" and "uncertainties about important relationships" also emerge as the areas of greatest concern for participants. These findings support uncertainty as an important phenomenon for people preparing for death and one that providers of EoL care should understand. Abstract: view source »

MW 528: Advanced care planning: Pearls, perils, pitfalls, and promises

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Efforts at improving advance care planning (ACP) processes ... have sprung forth from concerns ... that "advance care planning ought to be the preparation of patients and surrogates to participate with clinicians in making the best possible in-the-moment medical decisions," with less focus on the presence or absence of the document itself. Part of the challenge with approaching ACP and completion of ADs is that the creation of such documents is a static process that attempts to represent a dynamic, living human being. Although the values of that human being may remain consistent over a lifetime, the health and medical condition of that person often is not stable. Recent consensus panels have attempted to define more clearly what ACP actually is to better implement and measure its impact on outcomes; in addition, more succinct tools to validate ACP engagement behaviors have been recently tested. Full text: view source »

Does the distinctiveness of palliative care research require distinct ethical guidelines?

EUROPEAN JOURNAL OF BIOETHICS, 2017;8(15):31-57. Palliative and end-of-life care (EoLC) is changing, becoming more widespread and improving for patients. Yet, the current literature in the field suggests that the evidence for palliative and EoLC is somewhat limited. Research on treatment decisions, family care, and advance directions are just a few of the areas that need rigorous research efforts. Palliative care (PC) research is essential in order to continue providing effective treatments to those suffering in the last stages of life. Indeed, the goal of good PC research is to relieve suffering and to improve quality of life. Similar to any other field, PC programs must develop on a research base, and patient care will suffer if it is not backed by sound research. However, weighted against this need are some who maintain that the ethical and practical challenges of PC research are unique and insurmountable. This analysis considers if distinct ethical guidelines are needed for PC research. Abstract: view source »

MW 527: Developing design principles for a virtual hospice: Improving access to care

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A number of themes and barriers to accessing Highland Hospice services were identified. In response, an initial set of seven design principles was developed. Design principles are high-level guidelines that are used to improve prioritisation and decision making during the design process by ensuring alignment with research insights. The design principles were piloted with a group of stakeholders and gained positive feedback. These principles, encompassing digital and non-digital guidelines, or the design approach could be applied by other hospices in the U.K. or overseas. Abstract: view source »

Development and validation of a family meeting assessment tool

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 23 August 2017 – There is limited evidence on how to assess best practice behaviors during end of life family meetings. Building on evidence from published studies and accrediting agency guidelines, an expert panel…developed the Family Meeting Assessment Tool (FMAT). All fourth-year medical students and eight geriatric and palliative medicine fellows were invited to participate in a Family Meeting Objective Structured Clinical Exam, where each trainee assumed the physician role leading a complex family meeting. Two evaluators observed and rated randomly chosen students' performances using the FMAT during the exam. Expert-based content, high inter-rater reliability, good internal consistency and ability to predict educational level provided initial evidence for construct validity for this novel assessment tool. Abstract: view source »

MW 526: Palliative care in special settings of cancer care

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Successful integration of palliative care (PC) requires a keen and unabashed recognition of this. Most important ... is language. The prolonged training of oncologists of any stripe gives them a unique language. When someone in PC does not know how to "speak cancer," he or she is frequently shunned, denigrated, and not brought into the treatment team. Although those without oncology backgrounds can provide excellent PC for patients with cancer, if they do not understand the language and/or work to learn it, the wonderful alchemy of interdisciplinary teamwork will not happen. view source »

Big Data analysis to improve care for people living with serious illness: The potential to use new emerging technology in palliative care

PALLIATIVE MEDICINE | Online – 14 August 2017 – Healthcare professionals are generally unaware of how Big Data can be used to improve palliative care delivery. Furthermore, there is a lack of collaborative multi-professional groups with expertise in key areas (such as information technology, clinical practice, computer science, economics, statistics, and research methods). A lack of expertise in the development, maintenance and analysis of electronic health record systems may prevent adequate design of systems for the user. This may limit the quality of data collection and extraction (necessary for meaningful data analysis). Engagement with healthcare professionals is essential to support the design of digital systems that are necessary to improve the ability of clinical staff to work effectively. Additionally, data analysts are needed to make sense of the data generated by this process. Therefore, in order to realise the potential of Big Data, it is important to develop multi-professional groups with the expertise to use data meaningfully, to influence healthcare policy and clinical care delivery. view source »

MW 525: What has philosophy got to do with it? Conflicting views and values in end-of-life care

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They are not endorsing withdrawal of artificial nutrition and hydration at the (EoL) of life. They do not delve into elective ventilation, terminal sedation or assisted suicide, or other controversial choices at the EoL. Instead, the various documents attempt to identify and recommend evidence-based initiatives in EoLC. Several of them focus on ways to encourage and improve patients' conversations about their preferences for medical treatment towards the EoL. We might be tempted to wonder what could be wrong with that? What does philosophy have to contribute to these topics? However, as Kamm makes clear in her paper, documents like these are sometimes ambiguous about the concepts that they invoke and they make assumptions that could be challenged. view source »

1. 'Advanced and end of life care: cautionary suggestions,' Journal of Medical Ethics, published online 7 February 2017. view source »

Advance directives in hospice healthcare providers: A clinical challenge

AMERICAN JOURNAL OF MEDICINE | Online – 7 August 2017 – On a daily basis, healthcare providers, especially those dealing with terminally ill patients, such as hospice workers, witness how advance directives (ADs) help ensure the wishes of patients. They also witness the deleterious consequences when patients fail to document the care they desire at their end of life. To the best of the authors' knowledge there are no data concerning the prevalence of ADs among hospice healthcare providers. They, therefore, explored the prevalence and factors influencing completion rates in a survey of hospice healthcare providers. The majority of hospice healthcare providers [i.e., 56% of 890 survey respondents] had not completed an advance directive (AD). These results are very similar to those for other healthcare providers treating patients with terminal diseases, specifically oncologists. Since, at completion, 43% said that they would now complete an AD, such a survey of healthcare providers may help increase completion rates. view source »

MW 524: A qualitative inquiry into the barriers and facilitators to achieving home death

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The "managing people" theme included sub-themes of patient preferences and family influences; the "education" theme encompassed knowledge and training, perceptions of death and communication, and the "planning" theme contained seven sub-themes including "coordination," "resources" and "cost." Multiple barriers and facilitators to achieving death at home were identified in this study. Of particular significance was the identification of the fear and stigma associated with death among doctors, patients and their families serving as a barrier to home death, not previously identified in the literature. Additionally, the importance of social networks and resource provision were highlighted as key in influencing patient death at home. view source »

MW 523: One size does not fit all: Disease profiles of serious illness patients receiving specialty palliative care

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The authors evaluated the first visit consultation records of 1,615 patients. Most prevalent diagnosis was neurologic (564; 35%), followed by cardiovascular (266; 16%), pulmonary (229; 14%), and cancer (208; 13%). Patients in the study with the highest symptom burden were those diagnosed with cancer or pulmonary disease, with 45% and 37% of cancer and pulmonary patients, respectively, having two or more moderate to severe symptoms. 26% of cardiovascular disease patients reported two or more moderate to severe symptoms while 11% reported three or more. Patients with a neurologic or infectious diagnosis had less symptom burden, but a large percentage of neurologic patients were unable to respond. view source »

MW 522: How do clinicians prepare family members for the role of surrogate decision-maker?

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They audio-recorded and transcribed 73 ICU family conferences in which clinicians anticipated discussing goals of care for incapacitated patients at high risk of death. The authors developed and applied a coding framework to identify normative statements by clinicians regarding what considerations should guide surrogates' decisions, including whether clinicians explained one or more of Buchanan and Brock's (1989) three standard principles of SDM to family members. Clinicians did not provide normative guidance about the surrogate role in two-thirds of family conferences for incapacitated patients at high risk for death. When they did, clinicians' guidance was often incomplete and sometimes conflicted with standard principles of SDM. view source »

MW 521: Strategies used in improving and assessing the level of reporting of implementation fidelity in randomized controlled trials of palliative care complex interventions: A systematic review

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IF in PC is under recognised. Strategies used to improve IF in randomized controlled trials of PC can be categorised under the following elements: "treatment design," "training providers," "delivery of treatment," "receipt of treatment" and "enactment of treatment skills." Over 88 strategies have been identified to improve IF. A table ... representing the elements of fidelity, their sub-components, and showcasing the strategies identified, has been produced. The strategies identified could be used, not just in research but in clinical practice, to guide all phases of the development and evaluation of PC interventions. Substantial administrative burden in the application of the identified strategies suggests that further investigation is required to identify which strategies are more effective in improving, as well as assessing, the level of reporting of IF in PC interventions. view source »


MW 520: Assumptions and moral understanding of the wish to hasten death: A philosophical review of qualitative studies

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The starting point for the present study was a previous systematic review of qualitative studies of the WTHD in advanced patients. Here the authors analyse in greater detail the statements made by patients included in that review in order to examine their moral understandings and representations of illness, the dying process and death. They identify and discuss four classes of assumptions: 1) Assumptions related to patients' moral understandings in terms of dignity, autonomy and authenticity; 2) Assumptions related to social interactions; 3) Assumptions related to the value of life; and, 4) Assumptions related to medicalisation as an overarching context within which the WTHD is expressed. The authors' analysis shows how a philosophical perspective can add to an understanding of the WTHD by taking into account cultural and anthropological aspects of the phenomenon. They conclude that the knowledge gained through exploring patients' experience and moral understandings in the end-of-life context may serve as the basis for care plans and interventions that can help them experience their final days as a meaningful period of life, restoring some sense of personal dignity in those patients who feel this has been lost. view source »

MW 519: Withdrawal or withholding of artificial nutrition and hydration: A matter of life and death

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There is also an issue as to whether it is necessary or appropriate for such decisions to be taken by judges. This article ... considers a number of these issues and concludes that any consideration of the question from the patient's point of view must include an objective analysis of what is in his or her best interests, as well as subjective expressions of wishes and feelings. Whilst noting that it has been suggested that applications to the court should be confined to those cases where there is a dispute as to whether withdrawal of ANH would be in the patient's best interests, the author proposes that, until such time as we have greater clarity and understanding about the disorders of consciousness, and about the legal and ethical principles to be applied, there remains a need for independent oversight and that applications to the court should continue to be obligatory in all cases where the withdrawal of ANH is proposed, at least for the time being. view source »

MW 518: The "good death" and reduced capacity: A literature review

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Some appear more relevant than others, with clear decision-making and affirmation of personhood predicating issues related to reduced capacity. Largely, however, the literature on a "good death" builds on an underlying assumption that the dying patient is cognisant and capable of rationalising their death. Those instances where mental capacity is acknowledged within the model have been met by criticism from numerous authors. Factors such as the subjectivity of substitute decision-makers and the complexity associated with medico-legal interpretations of current legislation help to highlight deficiencies in the application of principles of a "good death" in practice. Further specific consideration is required on how to achieve a "good death" for those with reduced capacity. view source »

A good death

THE HASTINGS REPORT, 2017;47(1):28-29. This issue of The Hastings Center Report offers two articles from authors who strive to provide good end-of-life care and to prevent needless suffering.1,2 The authors of this editorial agree with their goals, but they express substantial reservations about the approaches recommended. Respect for the decisions of patients and their surrogates is a relatively new and still vulnerable aspect of medical care. For thousands of years, patients and surrogates had no say in medical decision-making. Today, standards support shared decision-making, but these articles both carve out exceptions to those standards, limiting the rights of patients and families in decisions about specific end-of-life treatments. view source »

1. 'The limits of surrogates' moral authority and physician professionalism: Can the paradigm of palliative sedation be instructive?' The Hastings Report, 2017;47(1):20-23. [Noted in Media Watch 16 January 2017, #495 (p.6)] view source »

2. 'After the DNR: Surrogates who persist in requesting cardiopulmonary resuscitation,' The Hastings Report, 2017;47(1):10-19. [Noted in Media Watch 16 January 2017, #495 (p.6)] view source »

MW 517: Product or process: Cultural competence or cultural humility?

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Perhaps nowhere in the health-care delivery system is this emphasis on patient-centered, CS care more important than for those addressing life-limiting illness or for frail elders who are coping with the advanced stages of multiple chronic conditions. These two patient populations have been the target of numerous studies in cross-cultural research, much of which has shown that dialogue surrounding palliative care and hospice is eased when caregivers, both clinical and laypersons, are CS. Cultural sensitivity supports the development of trust and rapport with patients. The crucial question is how cultural sensitivity can best be achieved when working with a diverse patient population. This editorial provides insight into the meaning of culture and to examine two leading methods for acquiring some degree of cultural sensitivity: cultural competence and cultural humility. view source »

MW 516: Care of the critically ill burn patient: An overview from the perspective of optimizing palliative care

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No current literature describes the intersection of PC and burn care or integration of primary and specialist PC in this unique context. This authors gives an overview of burn care; focuses on pain and other symptoms in burn ICU settings; addresses special needs of critically ill burned patients, families, and clinicians for high-quality PC; and highlights potential benefits of integrating primary and specialist PC in burn critical care. American Burn Association guidelines lay the foundation for a robust system of PC delivery, embedding PC principles and processes in intensive care by burn providers. Understanding basic burn care, challenges for symptom management and communication, and culture of the particular burn unit, can optimize quality and integration of primary and specialist PC in this distinctive setting. view source »

MW 515: Research must be shared to promote debate and shape policy

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For many researchers, seeing their work published in the most relevant journal and receiving a high number of citations is enough. While it's important to secure academic recognition there are many equally important audiences such as the government, public bodies, third sector organisations and the public. We do see some research hitting the headlines, but this is nearly always framed within the context of the latest "medical breakthrough," which barely scratches the surface of what compelling research stories are out there. We need to see research discussed much more frequently within the Scottish Government and Scottish Parliament to help inform legislation and public policy. This does happen, but often only representing a small sample of the research that exists on the given subject being deliberated. It's also sometimes limited to research which is being championed by a cause, politician or organisation. view source »

Extract from The Scotsman article
In the palliative and end of life care research community in Scotland, there has been an acceptance that more needs to be done to reach out beyond the usual academic journals and conferences. There has been a spate of activity, which has seen researchers work in partnership with many key stakeholders including the Scottish Government, the third sector, National Health Service and other statutory organisations. One of the commitments of the Scottish Government's 'Strategic Framework for Action on Palliative & End-of-Life Care'1 was the establishment of a research forum to bring together academics, policy-makers, practitioners and service managers to discuss and share research findings.

1. 'Strategic Framework for Action on Palliative & End-of-Life Care,' Scottish Government, December 2015. [Noted in Media Watch 21 December 2015, #441 (p.8)] view source »

MW 514: Making recommendations for limiting care in the ICU based on sound prognosis

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Decision making is particularly complex in and around care of critically ill patients, given the quantity and complexity of data being collected as well as the rapid-time course of events. Such patients are often incapacitated, with the added complexity that many decisions are therefore made by family members. Even when clinicians frame likely outcomes as best they can, families may be subject to optimism bias when interpreting the information.1 Regrettably, much more effort has been spent considering how to improve the quality of the decision making and less on how to improve the accuracy of prognostic information used in the decisions. view source »

1. 'Surrogate decision makers' interpretation of prognostic information,' Annals of Internal Medicine, 2012; 12(156):360-366. [Noted in Media Watch 12 March 2012, #244 (p.9)] view source »

MW 513: Aid – When there is "nothing left to offer": A survey and qualitative study of ethics and palliative care during international humanitarian emergencies

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Beginning with a survey of international aid organizations, the authors aimed to identify a baseline of current PC provisions for clinical and psycho-social care in humanitarian action. Survey results and preliminary analysis of interviews is shared. Responses cover: 1) Preparedness to deliver PC in humanitarian emergencies (e.g., disasters, conflict areas, epidemics); 2) Resources currently available to support the delivery of PC in humanitarian contexts; and, 3) Ideas/concerns related to integration of PC into humanitarian healthcare. PC is an area of growing global concern. It is increasingly recognized as necessary, yet simultaneously seen as outside the realm of possibility, particularly in humanitarian settings, where care in life-threatening conditions may be logistically and ethically challenging. view source »

MW 512: Ethical considerations and palliative care in patients with amyotrophic lateral sclerosis: A review

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The decision-making process regarding tracheostomy with invasive ventilation (TIV) is of greater complexity. Providing full information is crucial. Several long interviews are necessary to explain, discuss and allow assimilation of the information. Also, physicians should be careful not to focus exclusively on the biomedical aspects of disease, as ALS patients generally welcome the opportunity to discuss end-of-life issues with their physicians. Psychological factors, education level and cognitive status (especially the level of executive dysfunction) have a major influence on their decisions. However, as many patients do not complete advance directives with regard to TIV, advance care planning may instead be suggested in anticipation of emergency interventions. This should be discussed by HPs and the patient, and based on the wishes of the patient and caregiver(s), and communicated to all HPs. Many HPs are involved in the management of an ALS patient: they include not only those at ALS centers who provide diagnosis, follow-up and treatment initiation (particularly for respiratory and nutritional care), but also the medical and social care networks involved in disability support and home care. Specialist palliative care teams can work in partnership with ALS centers early in the course of the disease, with the center coordinating information-sharing and collaborative discussions. view source »

MW 511: Are we making progress?

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To that end, the report in this issue of evidence for the validity of a single item approach is of real interest (Conrad et al).1 Although more work needs to be done, I take heart that this takes work from the research realm to something that could be of utility in daily practice. One of my pet peeves is the report by a healthcare provider that the patient "wants everything done" versus "comfort care only" as if there were just two flavors of ice cream: vanilla and chocolate. The report that preferences for aggressive medical treatment are not associated with healthcare utilization in the very old is heartening (Albert et al).2 It suggests that patients, families, and their healthcare professionals are able and willing to engage in nuanced discussion and planning to achieve the right treatments for the patient at the time. In other words, we can move away from slogans toward patient-centered care with confidence. view source »

1. 'Measurement of quality of life in palliative care: Evidence for criterion-oriented validity of a single-item approach,' published online 5 January 2017. view source »

2. 'Are preferences for aggressive medical treatment associated with healthcare utilization in the very old?' published online 23 March 2017. view source »

MW 510: How different administrative databases change the size of a potential palliative care population

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Their cohort consisted of 23,852 people aged 20 years and over who died in Western Australia between 1 January 2009 and 31 December 2010 after excluding those whose deaths related to pregnancy or trauma. The number, proportion and characteristics of people who died from one or more of 10 medical conditions considered amenable to PC were identified using different information sources. Of the 23,852 people who died, a total of 10,445 (43%) people had a condition potentially amenable to PC recorded as the underlying cause of death on their death certificate. This increased to 15,064 (63%) people when including one of these conditions listed anywhere on their death certificate. When hospital admission records from the last year of life and death records were used to identify people who might potentially have benefited from PC, there were 17,384 (73%) people identified with at least one of these conditions. view source »

MW 509: Seeking certainty? Judicial approaches to the (non-) treatment of minimally conscious patients

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Secondly, the judges appraise the types and forms of expertise that enter the courtroom, seeming to prefer the "objective" and "scientific," and particularly the views of the doctors. Thirdly, the judges appear alert to the reasonableness of the evidence (and, indeed, the parties) and will look favourably on parties who are willing to co-operate. But the judges will not simply endorse any consensus reached by the parties; rather, the judges will reach their own decisions. Those decisions must be taken in the best interests of the patient. Fourthly, the judges approach this assessment in different ways. A balancing exercise is not consistently undertaken and, even in those cases in which it is, the weight accorded to particular factors varies. As the authors discuss, the consistency and predictability of the law in this area is open to question. Finally, however, they cautiously suggest that some consistent messages do begin to emerge: the courts' apparent preference for certainty in diagnosis and prognosis provide pointers for how cases might be decided. view source »

MW 508: Palliative care in humanitarian crises: Always something to offer

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PC is especially applicable in four humanitarian scenarios. First, in protracted humanitarian crises for patients with life-limiting illnesses whose pre crisis PC is interrupted and for those whose PC needs are unmet or exacerbated as a result of the crises. Older people are the most prominent group here, given their vulnerability and poorly identified and understood health-care needs. Second, in mass casualty events where resources are overwhelmed by acute injuries and individuals are triaged according to their likelihood of survival. Third, in communicable disease outbreaks with high mortality and limited therapeutic interventions where relief of suffering can be the main treatment option available... Fourth, in camps for refugees and displaced people where some individuals need PC during transition through the camp. view source »

MW 507: Final conversations: Overview and practical implications for patients, families, and healthcare workers

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Final conversations take the family member's perspective and highlights what are their memorable messages with the terminally ill loved one. The authors highlight the message themes present at the EoL for both adults and children, the functions each message theme serves for family members, and lastly, the communicative challenges of final conversations. Additionally, the authors discuss the current nature and future of final conversations research, with special attention paid to practical implications for healthcare providers, patients, and family members; also, scholarly challenges and future research endeavors are explored. view source »


MW 506: Palliative care in surgery: Defining the research priorities

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To date, evidence to support the role of PC in surgical practice is sparse and PC research in surgery is encumbered by methodological challenges and entrenched cultural norms that impede appropriate provision of PC. The objective of this article is to describe the existing science of PC in surgery within three priority areas and expose specific gaps within the field. The authors propose a research agenda to address these gaps and provide a road map for future investigation. view source »

MW 505: Speaking a different language: A qualitative analysis comparing language of palliative care and pediatric intensive care unit physicians

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The most common themes were giving medical information and discussing medical options. Themes unique to ICU physicians included statements of hopelessness, insensitivity, and "health-care provider challenges." Among the 9 transcripts with the PC team, there were 280 statements, generating 10 thematic categories. Most commonly, the PC team offered statements of support, giving medical information, and quality of life. Both teams promoted family engagement by soliciting questions; however, the PC team was more likely to use open-ended questions, offer support, and discuss quality of life. view source »

MW 504: Law, ethics and end-of-life care: The policy and practice interface in England

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Policy and practice must conform to the law, which defines liability in the EoL phase. However ... the law has primarily focused on the criminalisation of euthanasia and less on the complex issues involved in the "good death" concept. As a result, contemporary policy that helps to shape and direct EoL care faces a tension between EoL liability and the way in which PC is developing.2 The authors of this paper are not suggesting as a response to this tension that euthanasia should be legalised nor equating it with a "good death." The central argument from the authors of this paper is different: that for EoL care to develop and progress, practice has to interface with law and policy to a greater extent. A better interface will facilitate policy and law to be shaped by the complexity and demands of practice decision-making, so allowing a better understanding of what the EoL process entails. This is not to suggest that all EoL issues should be driven singularly by PC practice, but that a better future for the EoL entails the linking of law, policy and practice. view source »

1. 'Nursing and euthanasia: A review of argument-based ethics literature,' Nursing Ethics, 2009;16(4): 466-486. view source »

2. 'One Chance to Get it Right: Improving People's Experience of Care in the Last Few Days and Hours of Life,' Leadership Alliance for the Care of Dying People, June 2014. [Noted in Media Watch 30 June 2014, #364 (p.7)] view source »

MW 503: Perspectives of older people living in long-term care facilities and of their family members toward advance care planning discussions: A systematic review and thematic synthesis

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This finding is consistent with previous studies and highlights the urgent need to enhance health care professionals' knowledge, skills and comfort in ACP conversations. Health care professionals who know an elder well were considered the ideal group of people to initiate ACP, and most elders and their families expected health care providers to initiate and anticipate their needs concerning EoL issues. The findings indicate that elders and their families desired a personalized approach by health care professionals within a relationship based on trust, respect and sensitivity. Regarding the "right time" to perform ACP, further studies are needed in order to develop appropriate guidance on approaching both residents and their family members. This review shows that, at least for the current generation of older people living in LTC settings, planning for non-medical issues is very important, suggesting the need to rethink ACP for this population and also to incorporate non-medical preferences. view source »

MW 502: Resuscitation policy should focus on the patient, not the decision

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DNACPR decisions were introduced to protect patients from invasive treatments that had little or no chance of success. However, inconsistencies in decision making, communication, and documentation have led to misunderstandings about what DNACPR means and to delivery of poorer care to some patients. The authors discuss the problems with current practice and outline newer approaches that place the patient, and their family, at the centre of the discussions. They focus on overall treatment plans and supporting clinicians and patients to make shared decisions about emergency treatments. Given the weight of evidence against DNACPR decisions being made in isolation, how much (and what kind of) evidence is needed before a new approach is adopted? Some of the principles underpinning the new approaches to resuscitation decisions are already widely accepted – clinicians need to understand what is important to each individual patient and to advise their patients which outcomes are clinically possible or likely. Others are drawn from the research literature –conversations should be undertaken proactively before a crisis occurs; the option of attempting CPR should be discussed with more people, not just those needing DNACPR decisions or approaching the end of life; resuscitation decisions should be contextualised within overall goals of care. The aim of ensuring that recommendations are documented in such a way that patients receive the right treatments at the right time is one which is universally accepted. view source »

MW 501: Understanding the impact of a new public health approach to end-of-life care: A qualitative study of a community led intervention

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Three central impacts emerged. Participants stated that peer-support filled a gap in social support that neither professionals nor family could meet. Participants described becoming socially connected and linked this connection to increased wellbeing. Volunteers viewed themselves and those they visited as peers, despite differences in age or diagnosis. This view explained how compassion could be expressed, instead of a more detached form of empathy. A key facilitative process was the development of a relationship based on mutuality rather than passivity and dependence. On this basis, the relationship could be reconstructed outside the professional domain and could develop a depth and sustainability beyond the formal intervention. This study highlights the role of social networks in promoting wellbeing at the EoL. For sustainable changes to occur, relationships must be reciprocal rather than passive. These findings have important implications for how social care interventions are structured at the EoL. Peer support networks are a sustainable and appropriate care model, and this study provides evidence of their utility and sheds light on the fundamental components of compassionate care. view source »

MW 500: Patient reluctance to discuss pain: Understanding stoicism, stigma, and other contributing factors

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The authors used a review of the available evidence to better understand the various factors that contribute to an unwillingness to disclose one's pain, create a conceptual model, and identify relevant assessment measures that may be useful to practitioners. Their review identified six primary attitudes and beliefs that contribute to patient reluctance to openly admit pain: 1) Stigma; 2) Stoicism; 3) Cautiousness; 4) Fatalism; 5) Bother; and, 6) Denial. Four assessment measures that address elements of barriers to pain-related communication and four measures of non-verbal signs of pain were also identified and reviewed. Based on the model, social workers and other palliative care providers should consistently and vigilantly inquire about how comfortable patients are about discussing their own pain. view source »


PATIENT EDUCATION & COUNSELING | Online – 16 February 2017 – 'Promoting patient participation in healthcare interactions through communication skills training: A systematic review.' Most [studies reviewed] targeted primary care or cancer patients and used a randomized controlled study design. Interventions used a variety of training formats and modes of delivering educational material. Reported findings suggest that communication training is an effective approach to increase patients' total level of active participation in healthcare interactions and that some communication behaviors may be more amenable to training (e.g., expressing concerns). view source »

MW 499: Death following recent admission into nursing home from community living: A systematic review into the transition process

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Transition of care to the nursing home environment from the community is hazardous. A safer transfer is a duty care nursing home executives, managers, the government, and health and aged care professionals owe to residents. Answers are needed to the questions of whether, and to what extent, excess mortality is linked to the transfer process itself, to the environment and practices at destination, or to the fact that it is a significant stressful life event. This knowledge will contribute to providing optimal care for older people. Initiatives to make transitions safer are now possible by acting on the knowledge that there are modifiable risk factors. view source »

Discharging patients home from hospital at the end of life
BRITISH JOURNAL OF HOSPITAL MEDICINE | Online – 6 February 2017 – This article provides an overview of important considerations for the non-palliative care specialist when discharging a dying person home to his or her preferred place of care. A highly practical framework is included for identifying and assessing the patient's needs, and devising a tailored care plan. Rapid discharges at the end of life are complex processes which require the input of multiple health care professionals at every stage. With appropriate assessment and a framework to work from, such discharges can be successful. Key components for a rapid discharge are explored: 1) Recognition that the person has a deteriorating condition and may be dying, and communication with the person and/or carers such that they are aware of the situation; 2) Finding out what the person wants, including options around preferred place of care and death; 3) Assessment of clinical and care needs; 4) Provision of an individually-tailored care plan and package of care to support the person's needs; 5) Effective liaison with and communication of the person's needs and wishes to appropriate community services; and, 6) Exceptional circumstances or unusual situations (emergency department, outpatients, abroad, addiction, homelessness). view source »

MW 498: Promoting end-of-life discussions in advanced cancer: Effects of patient coaching and question prompt lists

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Patients often do not disclose their concerns and vary in the amount of information they want about the disease, prognosis, and treatment options, whereas physicians often do not know or enact patient preferences about end-of-life issues. Interventions to promote communication in cancer settings have targeted patients and physicians. Randomized controlled trials in early cancer and palliative care have shown that question prompt lists (QPLs) – structured lists of questions given to patients before consultations – help patients with cancer and their caregivers ask more questions, particularly if the physician also encourages and endorses the QPL. In addition, a tailored pre-visit educational coaching intervention (that did not involve QPLs) helped patients with cancer communicate concerns about pain. Meanwhile, an oncologist intervention that used audio recordings with tailored feedback positively influenced patient trust and oncologist responsiveness to patient emotions. Yet, no randomized trials have evaluated interventions directed toward both oncologists and their patients with advanced cancer who are not yet receiving palliative or hospice care. view source »

Learning to drive – early exposure to end-of-life conversations in medical training

NEW ENGLAND JOURNAL OF MEDICINE, 2017; 376(5):413-415. Sent to visit a chronically ill patient at home, a medical student finds that his inexperience can be a strength. Instead of worrying about the right words and how to say them, he learns how to listen – exactly what the patient needs as she faces end-of-life decisions. view source »

MW 497: Clinical trials in palliative care: A systematic review of their methodological characteristics and of the quality of their reporting

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To the authors' knowledge, this is the most comprehensive attempt to review clinical trials in palliative care literature. According to their results, it seems that the first step in generating not just valid, but also generalisable knowledge, is to clearly define PC populations, types of intervention and time to referral, establishing a common lexicon for clinicians and researchers. This will allow consensus to be achieved on the best outcomes and clinically meaningful differences, and will facilitate the choice of study design as well as promoting strategies to bypass the major barriers in PC research. The use of tools to help reporting study outcomes, such as CONSORT or SPIRIT, could also be a simple and efficient way of improving the quality of studies. view source »


§ THE GERONTOLOGIST | Online – 25 January 2017 – 'Practice concepts will become intervention research effective.' One of the greatest challenges in improving health care quality is the slow speed with which scientific innovation reaches practice. Only 14% of scientific discoveries reach practice at all, and when a practice is adopted, the process takes an average of 17 years...view source »

MW 496: Evolving ethical and legal implications for feeding at the end of life

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MB is living with and dying from the end stages of Alzheimer's disease and in 2013 Margot, her family and the care facility she resides in were at the centre of a legal battle over the circumstances necessary to constitute an imposed duty on caregivers to provide the basic necessity of life (food). This case exposed a number of concerns: the questionable utility and limits of living wills, surrogacy decision making, the actual meaning of implied consent, and what exactly constitutes medical treatment versus basic care. What is unique about this case is that it does show gaps in both ethical and judicial analysis which has resulted in a legal decision to provide a level of care the family believes would be untenable and lacking in dignity for MB. view source »

MW 495: After the DNR: Surrogates who persist in requesting cardiopulmonary resuscitation

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Although there is state-to-state variability[in the U.S.] and a considerable judicial gray area about the conditions and mechanisms for refusals to perform CPR, medical teams typically follow a set of clearly defined procedures for these decisions. The procedures are based on the principle of nonmaleficence and typically include consultation with hospital ethics committees, reflecting the guidelines of relevant professional associations. Ethical debates about when CPR can and should be limited tend to rely more on discussions of theory, principles, and case studies than systematic empirical study of the situations in which such limitations are applied. Sociologists of bioethics call for empirical study, arguing that what ethicists and health professionals believe they are doing when they draft policies or invoke principles does not always mirror what is happening on the ground. In this article, the authors begin the task of modeling the empirical analyses sociologists call for, focusing on a cohort at Massachusetts General Hospital. They inductively analyzed ethics committee notes and medical records of nineteen patients whose surrogates did not accept the decision to withhold CPR. view source »

MW 494: Collusions between patients and clinicians in end-of-life care: Why clarity matters

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After an introductory definition of collusion, two archetypal situations of collusion – based on material from a regular supervision of a palliative care (PC) specialist by a liaison psychiatrist – and means of working through collusion are presented. The theoretical framework of collusion is then described and the conceptual shortcomings of the PC literature in this respect discussed, justifying the call for more clarity. Finally, cultural aspects and societal injunctions on the dying, contributing to the development of collusion in end-of-life care, are discussed. view source »

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