Concept: Curative care
People with advanced illness usually want their healthcare where they live-at home-not in the hospital. Innovative models of palliative care that better meet the needs of seriously ill people at lower cost should be explored.
Compassion is considered an essential element in quality patient care. One of the conceptual challenges in healthcare literature is that compassion is often confused with sympathy and empathy. Studies comparing and contrasting patients' perspectives of sympathy, empathy, and compassion are largely absent.
Prognostic accuracy in palliative care is valued by patients, carers, and healthcare professionals. Previous reviews suggest clinicians are inaccurate at survival estimates, but have only reported the accuracy of estimates on patients with a cancer diagnosis.
Background:Dementia is a life-limiting disease without curative treatments. Patients and families may need palliative care specific to dementia.Aim:To define optimal palliative care in dementia.Methods:Five-round Delphi study. Based on literature, a core group of 12 experts from 6 countries drafted a set of core domains with salient recommendations for each domain. We invited 89 experts from 27 countries to evaluate these in a two-round online survey with feedback. Consensus was determined according to predefined criteria. The fourth round involved decisions by the core team, and the fifth involved input from the European Association for Palliative Care.Results:A total of 64 (72%) experts from 23 countries evaluated a set of 11 domains and 57 recommendations. There was immediate and full consensus on the following eight domains, including the recommendations: person-centred care, communication and shared decision-making; optimal treatment of symptoms and providing comfort (these two identified as central to care and research); setting care goals and advance planning; continuity of care; psychosocial and spiritual support; family care and involvement; education of the health care team; and societal and ethical issues. After revision, full consensus was additionally reached for prognostication and timely recognition of dying. Recommendations on nutrition and dehydration (avoiding overly aggressive, burdensome or futile treatment) and on dementia stages in relation to care goals (applicability of palliative care) achieved moderate consensus.Conclusion:We have provided the first definition of palliative care in dementia based on evidence and consensus, a framework to provide guidance for clinical practice, policy and research.
Questions and Answers on the Belgian Model of Integral End-of-Life Care: Experiment? Prototype? : “Eu-Euthanasia”: The Close Historical, and Evidently Synergistic, Relationship Between Palliative Care and Euthanasia in Belgium: An Interview With a Doctor Involved in the Early Development of Both and Two of His Successors
This article analyses domestic and foreign reactions to a 2008 report in the British Medical Journal on the complementary and, as argued, synergistic relationship between palliative care and euthanasia in Belgium. The earliest initiators of palliative care in Belgium in the late 1970s held the view that access to proper palliative care was a precondition for euthanasia to be acceptable and that euthanasia and palliative care could, and should, develop together. Advocates of euthanasia including author Jan Bernheim, independent from but together with British expatriates, were among the founders of what was probably the first palliative care service in Europe outside of the United Kingdom. In what has become known as the Belgian model of integral end-of-life care, euthanasia is an available option, also at the end of a palliative care pathway. This approach became the majority view among the wider Belgian public, palliative care workers, other health professionals, and legislators. The legal regulation of euthanasia in 2002 was preceded and followed by a considerable expansion of palliative care services. It is argued that this synergistic development was made possible by public confidence in the health care system and widespread progressive social attitudes that gave rise to a high level of community support for both palliative care and euthanasia. The Belgian model of so-called integral end-of-life care is continuing to evolve, with constant scrutiny of practice and improvements to procedures. It still exhibits several imperfections, for which some solutions are being developed. This article analyses this model by way of answers to a series of questions posed by Journal of Bioethical Inquiry consulting editor Michael Ashby to the Belgian authors.
The main objectives of this qualitative study were to describe the perceptions and needs of pediatric health care professionals (HCPs) taking care of children with palliative care needs and to develop a concept for the first Center of Competence for Pediatric Palliative Care (PPC) in Switzerland. Within two parts of the study, 76 HCPs were interviewed. The main interview topics were: (1) definition of and attitude toward PPC; (2) current provision of PPC; (3) the support needs of HCPs in the provision of PPC; and (4) the role of specialized PPC teams. HCPs expressed openness to PPC and reported distinctive needs for support in the care of these patients. The main tasks of specialized PPC teams in Switzerland would encompass the coaching of attending teams, coordination of care, symptom control, and direct support of affected families during and beyond the illness of their child. Conclusion: This study indicates the need for specialized PPC in Switzerland both inside and outside of centers providing top quality medical care (Spitzenmedizin). Specialized PPC teams could have a significant impact on the care of children and families with PPC needs. Whether hospices are an option in Switzerland remains unanswered; however, a place to meet other families with similar destinies was emphasized.
Opening locked doors: Integrating a palliative care approach into the management of patients with severe multiple sclerosis
- Multiple sclerosis (Houndmills, Basingstoke, England)
- Published over 5 years ago
Patients severely affected by multiple sclerosis (MS) have a large range of unmet needs. Although initially counterintuitive, specialized palliative care (PC) may be beneficial for these patients and their relatives. PC has advanced greatly in recent years, yet it is still predominantly tumour patients who profit from this. For MS, a first randomized phase II trial has already demonstrated significant benefits for patients and their caregivers when PC was included in their care. However, there are barriers: neurologists not convinced about PC, or PC not taking on MS patients. Studies have shown that misunderstandings and a lack of information among healthcare professionals about the roles and services of PC for MS are still prevalent. This topical review will give an overview of the unmet needs of patients as well as the possible benefits and barriers of PC for MS, and will describe models of services on how to “open locked doors”.
As palliative care grows and evolves, robust programs to train and develop the next generation of leaders are needed. Continued integration of palliative care into the fabric of usual health care requires leaders who are prepared to develop novel programs, think creatively about integration into the current health care environment, and focus on sustainability of efforts. Such leadership development initiatives must prepare leaders in clinical, research, and education realms to ensure that palliative care matures and evolves in diverse ways.
To measure how care needs, health and length of stay in permanent residential aged care differs by assessed need for palliative care.
Although many well-known poems consider illness, loss and bereavement, medicine tends to view poetry more as an extracurricular than as a mainstream pursuit. Within palliative care, however, there has been a long-standing interest in how poetry may help patients and health professionals find meaning, solace and enjoyment. The objective of this paper is to identify the different ways in which poetry has been used in palliative care and reflect on their further potential for education, practice and research.