L'auteur apporte une réflexion sur l'euthanasie associant anthropologie, sociologie, philosophie, théologie, politique et éthique. Il souligne les divisions qu'elle suscite au sein des sociétés comme des familles, en raison du fait qu'elle n'interroge pas uniquement la mort mais aussi la vie et les valeurs tout en obligeant l'individu à porter un autre regard sur sa propre existence et sa condition humaine.
Background: The Pontifical Academy for Life (PAV) is an academic institution of the Holy See (Vatican) which aims to develop and promote Catholic teachings on questions of biomedical ethics. Palliative care (PC) experts from around the world professing different faiths were invited by the PAV to develop strategic recommendations for the global development of PC ("PAL-LIFE group").
Design: Thirteen experts in PC advocacy participated in an online Delphi process. In four iterative rounds, participants were asked to identify the most significant stakeholder groups and then propose for each, strategic recommendations to advance PC. Each round incorporated the feedback from previous rounds until consensus was achieved on the most important recommendations. In the last step, the ad hoc group was asked to rank the stakeholders' groups by order of importance on a 13 points-scale and to propose suggestions for implementation. A cluster analysis provided a classification of the stakeholders in different levels of importance for PC development.
Results: Thirteen stakeholder groups and 43 recommendations resulted from the first round and, of those, 13 recommendations were chosen as the most important (one for each stakeholder group). Five groups had higher scores. The recommendation chosen for these top five groups were 1) Policy Makers: Ensure universal access to PC; 2) Academia: Offer mandatory PC courses to undergraduates; 3) Health care workers: PC professionals should receive adequate certification; 4) Hospitals and health care centers: Every healthcare center should ensure access to PC medicines, and 5) PC associations: National Associations should be effective advocates and work with their governments in the process of implementing international policy framework. Not chosen recommendations for both this higher scored group, plus for the remaining eight groups, are also presented in order of importance.
Conclusion: The white paper represents a position statementof the PAV with regards to advocacy and promotion of PC.
Cet ouvrage de la collection "Espace éthique" regroupe des contributions sur la notion de vulnérabilité, notamment sur les problèmes et les opportunités posés par son usage dans la société. Ainsi, une politique de protection des personnes vulnérables peut, dans le même temps, être une source d'exclusion. Les auteurs estiment que cette nouvelle éthique peut être positive à condition de ne pas verser dans l'apologie de la vulnérabilité.
Cet atlas présente les ressources pays par pays en matière de soins palliatifs : services pour adultes ou enfants, lits dédiés, composition et nombre d'équipes, tendance et objectifs des politiques nationales de santé des pays.
In 1900, most Americans gave birth and died at home, with minimal medical intervention. By contrast, most Americans today begin and end their lives in hospitals. The medicalization we now see is due in large part to federal and state policies that draw patients away from community-based providers, such as birth centers and hospice care, and toward the most intensive and costliest kinds of care. But the evidence suggests that birthing and dying people receive too much—even harmful—medical intervention.
In The Medicalization of Birth and Death, political scientist Lauren K. Hall describes how and why birth and death became medicalized events. While hospitalization provides certain benefits, she acknowledges, it also creates harms, limiting patient autonomy, driving up costs, and causing a cascade of interventions, many with serious side effects. Tracing the regulatory, legal, and financial policies that centralize care during birth and death, Hall argues that medicalization reduces competition, stifles innovation, and prevents individuals from accessing the most appropriate care during their most vulnerable moments. She also examines the profound implications of policy-enforced medicalization on informed consent and shows how medicalization challenges the healthcare community's most foundational ethical commitments.
[Extrait résumé éditeur]
Although palliative care (PC) has become increasingly familiar, considerable gaps persist in access to and use of services. Community-based programs remain rare, and low-income, minority communities significantly under-utilize hospice and palliative services. We used community-based participatory research (CBPR) methods to conduct a mixed-methods community needs assessment of seriously-ill older adults (n=100) and providers from community-based programs and churches (n=41) in an urban medically-underserved community in the U.S. to explore: (I) the prevalence and severity of illness-related symptoms and psychosocial-spiritual concerns; (II) the scope and quality of community supports helping older adults manage their symptoms; and (III) the perceptions and utilization of palliative and supportive care services among older adults and community-based service providers. Participants reported high rates of chronic illness-related symptoms (i.e., pain, fatigue, sleeping difficulties, depression, and anxiety), and many described unmet needs around symptom management. Few had ever utilized PC or pain management services, and most relied primarily on family, friends, and faith communities to help them manage burdensome symptoms. Barriers included lack of familiarity with PC, limited access and financial concerns. Older adults were largely unfamiliar with PC, and many described unmet needs and desire for help with symptom burden. Findings support the need to further explore community-level and cultural barriers to PC among diverse, underserved older adults. Development of innovative community partnerships may help raise awareness of PC and address the physical and psychosocial-spiritual challenges facing chronically-ill minority older adults and their families.
A global report found that the quality of dying in Hong Kong lagged behind that of other high-income economies. This study aims to examine the service gaps by conducting a qualitative exploratory study from multiple stakeholders' perspectives. Purposive and snowball sampling strategies were used to maximize variation in the sample. We interviewed 131 participants, including patients, family members, health care providers, administrators, lawyers, and policy makers. The situation analysis helped identify the facilitators and barriers at individual, organizational, and socio-cultural levels that affect service development. Findings showed that awareness on palliative and end-of-life care is growing, but the existing care is limited in terms of acceptability, coverage, variation in practices, continuity, and sustainability. A number of policy, economic, socio-cultural, environmental, and legal factors were also found to hinder service development. Findings of this study demonstrated that the development of palliative and end-of-life care services involved a paradigm shift relating to society as a whole. The overarching theme is to formulate a government-led policy framework. Furthermore, a public health approach has been advocated to create a supportive environment for service development.
Individuals with terminal illness are dying behind bars and many state prison administrators have incorporated on-site hospice and palliative care services. Little is known, however, about these programs since a 2010 study of prison hospice characteristics. We provide an updated description and reflection of current hospice and palliative care programs in state prisons serving incarcerated persons with terminal illness. A cross-sectional survey was sent to representatives of all known prisons offering hospice and palliative care programs and services (N = 113). Questions were drawn from an earlier iteration regarding interdisciplinary team (IDT) membership, training length and topics, peer caregivers, visitation policies, bereavement services, perceived stakeholder support, and pain management strategies. Additional questions were added such as estimated operational costs, peer caregiver input in patient care, and the strengths and weaknesses of such programs. Frequency distributions were calculated for all study variables. Responding representatives (n = 33) indicated IDTs remain integral to care, peer caregivers continue to support dying patients, and perceived public support for these programs remains low. Reduced enthusiasm for the programs may negatively influence administrative decision-making and program resources. Further, peer caregiver roles appear to be changing with caregivers charged with fewer of the identified tasks, compared with the 2010 study.
BACKGROUND: There is a dearth of research focusing on identifying the social complexities impacting on oncology and palliative care (PC), and no study has explored how the health-care system in Nigeria or other African contexts may be influencing utilization of these services.
AIM: This study explored how social complexities and the organization of health-care influenced the decision-making process for the utilization of oncology and PC in a Nigerian hospital.
METHODS: This qualitative study used an interpretive descriptive design. Data were collected using semistructured interview guides with 40 participants, comprising health-care professionals, patients, and their families. Thematic analysis was conducted to generate and analyze patterns within the data.
FINDINGS: Three themes were identified: dysfunctional structural organization of the health-care delivery system, service-users' economic status, and the influence of social networks. The interrelationship between the themes result in patients and their family members decisions either to present late to the hospital, miss their clinical appointments, or not to seek oncological health care and PC.
CONCLUSION: This article offers insights into the role of the health-care system, as organized currently in Nigeria, as "autoinhibitory" and not adequately prepared to address the increasing burden of cancer. We therefore argue that there is a need to restructure the Nigerian health-care system to better meet the needs of patients with cancer and their families as failure to do so will strengthen the existing inequalities, discourage usage, and increase mortality.
La "concentration" des personnes âgées entre elles dans des établissements dits d'hébergement, nous semble révélatrice d'un véritable déni collectif des conséquences du vieillissement de nos sociétés. La réalité du changement en train de s'opérer impose une prise de conscience collective. Ce constat doit conduire à une refonte en profondeur de notre système de santé et de la formation des acteurs de santé.
Interrogeons-nous sur la condition faite aux plus âgés d'entre nous. Leur vulnérabilité n'est-elle pas le résultat d'une accumulation de faits sociaux qui nous rendraient tous vulnérables ? Solitude et isolement, regard méprisant, sentiment d'inutilité, bouc émissaire économique... Faut-il ajouter, dès lors que l'on entre dans le secteur médico-social, l'incompréhension totale du dispositif, la multiplication des intervenants, les parcours ératiques ?
Background: Debate about appropriate and ethically acceptable end-of-life choices is ongoing, which includes discussion about the legalization of voluntary assisted dying. Given health professionals’ role in caring for patients at the end life, their stance towards assisting a person with dying can have implications for policy development and implementation in jurisdictions where law changes are being considered.
Aim: To explore end-of-life care professionals’ attitudes towards voluntary assisted dying 6 months prior to vote on legalization.
Design: Qualitative study using textual data collected through semi-structured interviews. Purposive sampling strategy used to collect a broad representation of perspectives. Audio-recorded interviews were transcribed verbatim and subjected to qualitative descriptive analysis techniques.
Participants: A total of 16 health professionals with experience in caring for people with life-limiting illness.
Results: Participants reported two overarching positions grounded in differing moral philosophies with compelling arguments both for and against legalization of voluntary assisted dying. A third and common line of argument emerged from areas of shared concern and uncertainty about the practical consequences of introducing voluntary assisted dying. While a diversity of opinion was evident, all participants advocated for more public education and funding into end-of-life care services to make high-quality care equitable and widely available.
Conclusion: Common dedication to reducing suffering and facilitating good dying experiences exists among experts despite their divergent views on voluntary assisted dying. Ongoing engagement with stakeholders is needed for practical resolution in the interest of developing health policy for best patient care.
CONTEXT: Palliative care is gaining ground globally and is endorsed in high level policy commitments, but service provision, supporting policies, education and funding are incommensurate with rapidly growing need.
OBJECTIVES: To describe current levels of global palliative care development and report on changes since 2006.
METHODS: An online survey of experts in 198 countries generated 2017 data on 10 indicators of palliative care provision, fitted to six categories of development. Factor analysis and discriminant analysis showed the validity of the categorization. Spearman correlation analyses assessed the relationship with World Bank Income Level (WBIL), Human Development Index (HDI) and Universal Health Coverage (UHC).
RESULTS: Numbers (percentages) of countries in each development category were: 1) no known palliative care activity 47 (24%); 2) capacity-building 13 (7%); 3a) isolated provision 65 (33%); 3b) generalized provision 22 (11%); 4a) preliminary integration into mainstream provision 21 (11%); 4b) advanced integration 30 (15%). Development levels were significantly associated with WBIL (rS= 0·4785), UHC (rS=0·5558) and HDI (rS=0·5426) with p < 0.001. Net improvement between 2006-2017 saw 32 fewer countries in categories 1/2, 16 more countries in 3a/3b, and 17 more countries in 4a/4b.
CONCLUSION: Palliative care at the highest level of provision is available for only 14% of the global population and is concentrated in European countries. An 87% global increase in serious health related suffering amenable to palliative care interventions is predicted by 2060. With need rising, palliative care is not reaching the levels required by at least half the global population.
Advance care planning (ACP) has been shown to improve end-of-life care, yet uptake remains limited. Interventions aimed at increasing ACP uptake have often used a 'specialist ACP facilitator' model. The present qualitative study appraised the components of an ACP facilitator intervention comprising nurse-led patient screening and ACP discussions, as well as factors associated with the successful implementation of this model in primary care and acute hospital settings across rural and metropolitan Western Australia. Semistructured interviews were undertaken with 17 health professionals who were directly or indirectly involved in the facilitator ACP intervention among patients with severe respiratory disease. Additional process data (nurse facilitator role description, agreements with participating sites) were used to describe the nurse facilitator role. The interview data identified factors associated with successful implementation, including patient factors, health professional factors, ACP facilitator characteristics and the optimal settings for the intervention. The primary care setting was seen as most appropriate, and time limitations were a key consideration. Factors associated with successful implementation included trusting relationships between the nurse facilitator and referring doctor, as well as opportunities for meaningful encounters with patients. This study suggests a model of ACP nurse facilitation based in primary care may be an acceptable and effective method of increasing ACP uptake.
The New Zealand government has announced a public referendum on euthanasia which, if passed, will allow assisted dying for terminally ill patients with two doctors’ approval.
This is the first time a country has held such a vote on assisted dying, coming after lawmakers passed the End of Life Choice Bill in parliament by 69 votes to 51. The bill stipulates that terminally ill people with less than six months to live would be able to choose assisted dying if two doctors approved.
The referendum is set to coincide with the country’s 2020 elections. The ballot paper will also include a vote on whether to legalise personal use of cannabis and, potentially, decriminalisation of abortion