Global Palliative Care News Archive


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Barry R. Ashpole, Guelph, Ontario, CANADA
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MW 551: How to achieve the desired outcomes of advance care planning in nursing homes: A theory of change

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The Theory of Change map provides the first comprehensive rationale of how ACP is expected to work in nursing homes, something that has not been shown by research before, but for which repeated calls have been made. We will use these insights in the further design of the ACP intervention and its evaluation to explore in greater depth how, why and in what circumstances ACP works best in routine nursing home care in Belgium. Full text: view source »

Research involving dying persons: Time to reconsider?

COLLEGIAN (Australian Journal of Nursing Practice, Scholarship & Research), 2018;25(1):1-2. Using research to generate evidence to inform clinical practice is a position adopted almost universally in healthcare, with health care organisations, policymakers and clinicians using research evidence to improve the quality of care. Yet, when it comes to palliative and end-of-life (EoL) care, the situation may be different. Research involving the dying, whether conducted in palliative care settings or elsewhere, is often considered ethically challenging and controversial. This is because of concern about the actual or potential vulnerability of persons approaching the EoL and whether the dying person can or should be involved in research. Yet, the caution associated with research participation for those who are dying, might need to be reconsidered. Despite concern from ethical review boards, researchers, clinicians and consumers that research involving dying persons might be intrusive, inappropriate or unethical, the research evidence suggests that dying persons who have participated in research did so with very good reason. Full text: view source »

A moment for compassion: Emerging rhetorics in end-of-life care

Medical Humanities | Online – 10 February 2018 – "Compassion" has become the flagship concept to be fostered in the delivery of end-of-life care (EoLC), and a rallying call for social action and public health intervention. The authors examine the emerging rhetorics of compassion as they relate to EoLC and offer a critique of the expanding discourse around it. They argue, even where individuals "possess" compassion or are "trained" in it, there are difficulties for compassion to flow freely, particularly within Western society. This relates to specific sociopolitical structural factors that include the sense of privacy and individualism in modern industrialised countries, highly professionalised closed health systems, anxiety about litigation on health and safety grounds, and a context of suspicion and mistrust within the global political scenario. We must then ask ourselves whether compassion can be created intentionally, without paying attention to the structural aspects of society. One consequence of globalisation is countries in the global South are rapidly trying to embrace the features of modernity adopted by the global North. The authors argue unrealistic assumptions have been made about the role of compassion in EoLC and these idealist aspirations must be tempered by a more structural assessment of potential. Compassion that is not tied to to realistic action runs the risk of becoming empty rhetoric. Full text: view source »

MW 550: End-of-life care for infants, children and young people with life-limiting conditions: Planning and management – the National Institute for Health & Care Excellence guideline 2016

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Today, there are 49,000 infants, children and young people (0-18 years) living with life-limiting conditions in the U.K. The recommendations aim to support a wide variety of professionals, and infants, children and young people with life-limiting conditions and their families, with issues regarding end-of-life and palliative care. Guidance on basic symptom management, communication, advance care planning and service delivery is included. This is the first U.K. published guideline on this subject, but there have been several published frameworks, care pathways, drug formularies and symptom management guidelines in this. Abstract: view source »

Integrated palliative care networks from the perspectives of patients: A cross-sectional explorative study in five European countries

PALLIATIVE MEDICINE | Online – 5 February 2018 – Although examining perspectives of patients on integrated palliative care (PC) organisation is essential, available literature is largely based on administrative data or healthcare professionals' perspectives. The authors recruited 157 patients from 23 integrated PC initiatives in Belgium, Germany, the U.K., Hungary and The Netherlands. About 33% reported contact with a PC specialist and 48% with a PC nurse. Relationships with PC specialists were rated significantly higher than other physicians. Compared to patients with cancer, patients with chronic obstructive pulmonary disease and chronic heart failure had significantly lower odds of reporting contact with PC specialists and patients with chronic obstructive pulmonary disease had significantly lower odds of reporting contact with PC nurses. Perceptions of main responsible healthcare professionals or caregivers in patient's care networks varied across countries. Perceived integration was significantly associated with overall satisfaction. Expert PC involvement needs to be explicated especially for non-cancer patients. One healthcare professional should support patients in understanding and navigating their PC network. Patients seem satisfied with care provision as long as continuity of care is provided. Full text: view source »

Family meetings in in-patient specialist palliative care: A mechanism to convey empathy

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 5 February 2018 – Families [i.e., study participants] reported more empathy from staff following a family meeting... Some families with relatives who do not speak with each other reported that meeting facilitators were unable to manage the pre-existing dynamics. It would be beneficial to have more specific preparation and planning by the clinical team for meetings with people who have a history of familial conflict, and those where the staff's agenda is around discharge planning. Published guidelines could be adapted to better support staff to run meetings where there are complex family dynamics. Adoption of family meetings in outpatient settings has the potential to improve perceptions of empathy with a larger patient group. Abstract: view source »

MW 549: When paediatricians and families can't agree

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Paediatricians learn to live with uncertainty and similarly have to support parents and young people to accept this uncertainty. Sometimes we have to wait for nature to reveal itself or for the future to unfold as it should. Herein lies the art of paediatrics: the ability to watch and wait, intervening in a timely fashion when required to do so and recognising the sad eventuality of having to let go of life at times. This is our craft: to do what is in the child's best interests and use therapies that will help with life's quality but not unnecessarily prolong inevitable death. However there are competing interests in this delicate balance in doing what is right for the child. Abstract: view source »

Surveying care teams after in-hospital deaths to identify preventable harm and opportunities to improve advance care planning

THE JOINT COMMISSION JOURNAL ON QUALITY & PATIENT SAFETY, 2018;44(2):84-93. As part of a quality improvement initiative, a post-death care team survey was developed to explore how it might augment the existing process for learning from deaths. A survey was sent to the care team for all inpatient deaths on the hospital medicine and medical ICU services at one institution. Survey responses were reviewed to identify cases that required further investigation. During the distribution period ... 82 patients died, and 191 care team members were surveyed. Based on the survey responses, 5 patients (6.1%) not identified by other review processes were investigated further, resulting in the identification of several important opportunities for improvement. The free-text comment analysis revealed themes around the importance of advance care planning in seriously ill patients, as well as evidence of the emotional and psychological strain on clinicians who care for patients who die. Abstract: view source »

The growing demand for hospice and palliative medicine physicians: Will the supply keep up?

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 2 February 2018 – The need for hospice and palliative care is growing rapidly as the population increases and ages and as both hospice and palliative care become more accepted. Hospice and palliative medicine (HPM) is a relatively new physician specialty, currently training 325 new fellows annually. Given the time needed to increase the supply of specialty trained physicians, it is important to assess future needs to guide planning for future training capacity. The current U.S. supply of HPM specialists is 13.35 per 100,000 adults 65 and over. This ratio varies greatly across the country. Using alternate assumptions for future supply and demand, the authors project need in 2040 will range from 10,640 to almost 24,000 HPM specialist physicians. Supply will range from 8,100 to 19,000. Current training capacity is insufficient to keep up with population growth and demand for services. HPM fellowships would need to grow from the current 325 graduates annually to between 500 to 600 per year by 2030 to assure sufficient physician workforce for hospice and palliative care services given current service provision patterns. Abstract: view source »

MW 548: Collaborative practice model: Improving the delivery of bad news

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The authors explored current processes, role perceptions and expectations, and perceived barriers to developing the model, which is now the standard of care and an example of interprofessional team collaboration across the healthcare system. This model for delivering bad news can be easily adapted to meet the needs of other clinical units. Abstract: view source »

Law as clinical evidence: A new constitutive model of medical education and decision-making

JOURNAL OF BIOETHICAL INQUIRY | Online – 18 January 2018 – Over several decades, ethics and law have been applied to medical education and practice in a way that reflects the continuation during the twentieth century of the strong distinction between facts and values. The authors explain the development of applied ethics and applied medical law and report selected results that reflect this applied model from an empirical project examining doctors' decisions on withdrawing/withholding treatment from patients who lack decision-making capacity. The model is critiqued, and an alternative "constitutive" model is supported on the basis that medicine, medical law, and medical ethics exemplify the inevitable entanglement of facts and values. The model requires that ethics and law be taught across the medical education curriculum and integrated with the basic and clinical sciences and that they be perceived as an integral component of medical evidence and practice. Law, in particular, would rank as equal in normative authority to the relevant clinical scientific "facts" of the case, with graduating doctors having as strong a basic command of each category as the other. The normalization of legal knowledge as part of the clinician's evidence base to be utilized in practice may provide adequate consolation for clinicians who may initially resent further perceived incursions on their traditional independence and discretion. Abstract (w. list of references): view source »

Spiritual care training in healthcare: Does it really have an impact?

PALLIATIVE & SUPPORTIVE CARE | Online – 23 January 2018 – Spiritual care has formed an integral part of palliative care (PC) since its inception. People with advanced illnesses, however, frequently report their spiritual needs are not attended to by their medical care team. This study examined and describes the impact of a spiritual care training program on practice and cultural change in a Canadian hospice. The authors' data suggest the program had a profound personal impact on attendees and contributed to a slight shift in practice patterns in their organization. Using a program not specifically tailored to local and organizational cultural contexts resulted in some unanticipated challenges such as the range of tensions between personal and cultural boundaries. Although some people criticized parts of the program or questioned the program's value, a general agreement suggests the program had a positive impact and meaningfully benefited the hospice. "What will happen next?" was the question most frequently voiced by interviewees. The present study suggests a systematic approach to spiritual care training that includes the concepts of workplace spirituality and sensitive practice offer useful frameworks for the development and implementation of spiritual care training in other institutions. Abstract: view source »

MW 547: Physicians' perceptions of hope and how hope informs interactions with patients: A qualitative, exploratory study

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Three themes describing hope emerged: "assessing hope," "fostering and sustaining hope," and "attributes and outcomes of hope." The findings show how physicians conceptualize hope and how these conceptions differ in the empirical light of the study. Physicians' perceptions of "hope" may evolve when entering into a therapeutic relationship exploring the needs and desires of patients. Physicians' perspectives about "hope" may at times not be solely their own, but are those of their patients and thus resulting in an amalgamation, or a rebuilding/rekindling of hope amidst hopelessness, that suits a particular relationship. Abstract: view source »

Forgoing life-sustaining treatments in the ICU. To withhold or to withdraw: Is that the question?

MINERVA ANESTESIOLOGICA | Online – 17 January 2018 – In the last decades, mortality from severe acute illnesses has considerably declined thanks to the advances in intensive care medicine. Meanwhile, critical care physicians realized that life-sustaining treatments (LST) may not be appropriate for every patient, and end-of-life care in the intensive care unit (ICU) started to receive growing attention. Most deaths occurring in the ICU now follow a decision to forgo life-sustaining treatments (DFLST), which can be implemented either by withdrawing (WDLST) or withholding (WHLST) life-sustaining treatments. Despite the broad consensus about the equivalence of the two practices from an ethical point of view, the issue of the best option between WDLST and WHLST constantly gives rise to controversies in clinical practice. This review is not intended to take a stand for or against WDLST or WHLST. Based on available evidence, the definitions of the two practices are first presented. Secondly, the preferences of ICU physicians towards WDLST and WHLST are examined. Finally, some arguments are offered outlining pros and cons of WDLST and WHLST, stressing that the clinician's attention should focus on an early and thorough recognition of patients in need of a DFLST, rather than on the theoretical strength and weakness of the two practices. This approach will enable physicians to make informed decisions on how to implement the limitation of LSTs, considering the patients' clinical conditions and preferences, the circumstances and needs of their families. Abstract: view source »

MW 546: Error trawling and fringe decision competence: Ethical hazards in monitoring and address patient decision capacity in clinical practice

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The authors argue that one common, fact-oriented patient education strategy may in practice easily tend to take a destructive form that they call error trawling. They argue on independent grounds that this strategy not only risks to overlook significant weaknesses in patient decision competence, but also to undermine patient capacity for decision-making and implementing care. In effect, this strategy for clinically monitoring and addressing the problem of fragile decision-making capacity brings hazards in need of address. The authors close by suggesting complementary and alternative strategies, and comment on how these may call for broadened competency among clinical health professionals. Abstract: view source »

Voluntarily stopping eating and drinking: A normative comparison with refusing lifesaving treatment and advance directives

JOURNAL OF LAW, MEDICINE & ETHICS | Online – 10 January 2018 – Refusal of lifesaving treatment, and such refusal by advance directive, are widely recognized as ethically and legally permissible. Voluntarily stopping eating and drinking (VSED) is not. Ethically and legally, how does VSED compare with these two more established ways for patients to control the end of life? Is it more questionable because with VSED the patient intends to cause her death, or because those who assist it with palliative care could be assisting a suicide? In fact the ethical and legal basis for VSED is virtually as strong as for refusing lifesaving treatment and less problematic than the basis for refusing treatment by advance directive. VSED should take its proper place among the accepted, permissible ways by which people can control the time and manner of death. Abstract: view source »

Patients' and oncologists' views on family involvement in goals-of-care conversations

Psycho-Oncology | Online – 5 January 2018 – Research on patient and physician perspectives about family involvement and influence on goals-of-care conversations is limited. The authors conducted semi-structured interviews at academic, community and municipal hospitals with patients with advanced cancer and their oncologists. They identified four themes: 1) Presence and duration of family involvement; 2) Family expectations; 3) Protecting patients'/family members' feelings; and, 4) Patient-family disagreement. For patients, the authors identified two additional themes: 1) Family and oncologist relationship; and, 2) Effects of cancer on family. Both patients and oncologists emphasized the importance of family support for the patient's understanding of their illness and on patients' emotions. The authors also identified ways in which family involvement may benefit or prove challenging to goals-of-care conversations. Abstract: view source »

MW 545: Acceptance in the end of life

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I trust experts to tell me what to do when I am lost in a maze that they can get out of. Likewise, we are called to help patients see through the misinformation, denial, overconfidence, distrust, and confusion that clouds their reasoning. When patients have metastatic cancer, they frequently do not know their prognosis, nor do they always understand the palliative intent of our treatment. This misconception holds for oncologists as well, who tend to overestimate survival time. Another major cause of over-treatment is that both physicians and patients tend to overvalue the end of life (EoL) and make irrational decisions. A life's ending is weighted especially heavily when quality of life (QoL) is judged. If you ask people to judge how desirable their life was, they overweight their life's quality at the end and ignore the duration. Physicians grasp this fact, preferring to avoid high-intensity EoL care more than non-physicians. However, we do not effectively communicate this skepticism to patients. Supportive care often yields a better QoL than active treatment, but it is underused and undervalued. Extending a poor QoL is considered a success due to biased thinking shaped by having extended lives of good quality. This misconception holds for oncologists, who tend to overestimate survival time... First page view: view source »

We're the eyes and the ears, but we don't have a voice: Perspectives of hospice aides

JOURNAL OF HOSPICE & PALLIATIVE NURSING, 2018;20(1):47-54. Hospice aides (HA) are integral to the delivery of home hospice care and play an essential role in the effective communication and collaboration of the hospice interdisciplinary team. Despite their critical role, little is known about their perceptions of their role in providing hospice services. This qualitative study explores HA's perspectives of their work; their relationships with patients, families, and interdisciplinary team members; and, their contributions to end-of-life care. Two focus groups of HAs and 16 hours of observation of in-home caregiving were conducted. Three themes were identified: 1) "We're the eyes and ears"; 2) "We're kept out of the loop"; and, 3) "We have no voice." HAs described themselves as frontline providers based on the close relationships they formed with patients and family members yet felt under recognized by members of the hospice team. Better understanding of their role could enhance the integration of HA into patient- and family-centered team interactions, leading to both improved patient and family outcomes and retention and support of this critical component of the hospice workforce. Abstract: view source »

"I'd recommend ..." How to incorporate your recommendation into shared decision making for patients with serious illness

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 2 January 2018 – Patients and families facing serious illness often want and need their clinicians to help guide medical decision making by offering a recommendation. Yet clinicians worry that recommendations are not compatible with shared decision-making, and feel reluctant to offer them. The authors describe an expert approach to formulating a recommendation using a shared decision-making framework. They offer three steps: 1) Valuate the prognosis and treatment options; (2) Understand the range of priorities that are important to your patient given the prognosis; and, 3) Base your recommendation on the patient's priorities most compatible with the likely prognosis and available treatment options. Abstract: view source »

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