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Cadernos de Saude Publica 2022Health care for patients with serious illnesses usually implies the need to make a large number of decisions, ranging from how information is shared to which diagnostic...
Health care for patients with serious illnesses usually implies the need to make a large number of decisions, ranging from how information is shared to which diagnostic or therapeutic procedures will be adopted. The method of such decision-making has important implications from an individual and collective point of view and may contribute to either relieving or aggravating suffering. In this consensus document, the Bioethics Committee of the Brazilian National Academy of Palliative Care (ANCP) and the Permanent Committee on Palliative Care of the Brazilian Geriatrics and Gerontology Society (SBGG) adopt the principles of compassionate listening proposed by Saunders, of the nature of suffering proposed by Cassel, of dignity-preserving care proposed by Chochinov, and of cultural humility as a starting point for the construction of an official position of ANCP and SBGG on shared decision-making in palliative care. The position statement posits that, unlike paternalistic and consumerist models, the decision-making process in the sphere of palliative care must follow the mutualistic model of shared decision, where decisions are built based on dialogue between healthcare professionals and patients/family. The document sets forth the assumptions of this process, the limits of autonomy of patients/family and healthcare professionals and the distinction between futile and potentially inappropriate treatments, besides ratifying its incompatibility with any forms of coercion and conflict of interest foreign to the best interests of patients.
Topics: Brazil; Decision Making; Geriatrics; Health Personnel; Humans; Palliative Care
PubMed: 36169516
DOI: 10.1590/0102-311XPT130022 -
Journal of the American Board of Family... 2019Thirty-five thousand Canadians are homeless on any given night, and mortality rates are much higher than for the general population. Studies have identified barriers to...
BACKGROUND
Thirty-five thousand Canadians are homeless on any given night, and mortality rates are much higher than for the general population. Studies have identified barriers to accessing end-of-life care among the homeless, including logistic barriers and experiences of stigma. This study seeks to explore the experience, goals, fears, and hopes surrounding death in the setting of homelessness or vulnerable housing.
METHODS
Qualitative phenomenological study involving focus groups and in-depth interviews with 31 people with lived experience of homelessness. Additional sociodemographic data collected from participants.
FINDINGS
Themes included extensive experience with death and dying, relationship with mortality, ideas for a good death, and desires for end-of-life care. Participants presented suggestions for improving end-of-life care including care that was delivered by people with lived experience of homelessness and substance use; care that was provided either as outreach or in a welcoming, flexible institutional environment; care that minimized stigma and enhanced dignity; and care that respected people's desires to use substances at the end of life.
DISCUSSION
Participants with lived experience of homelessness were articulate in their desires and needs for end-of-life care. They have extensive exposure to mortality and feel that their needs are not met by the current palliative care system. Recommendations for system change that include harm reduction and equity-oriented health care, as well as a combination of outreach and inpatient services, are necessary before palliative care services will be accessible for this population.
Topics: Adult; Aged; Attitude to Death; Attitude to Health; Canada; Female; Focus Groups; Health Equity; Ill-Housed Persons; Housing; Humans; Male; Middle Aged; Palliative Care; Qualitative Research; Terminal Care; Vulnerable Populations; Young Adult
PubMed: 31704754
DOI: 10.3122/jabfm.2019.06.190093 -
Journal of Pain and Symptom Management Jan 2023Palliative care awareness, education and practice vary widely across global health systems, especially throughout low- and middle-income countries such as Nigeria....
CONTEXT
Palliative care awareness, education and practice vary widely across global health systems, especially throughout low- and middle-income countries such as Nigeria. Unfortunately, qualitative investigations into the context, experiences and challenges of Nigerian health care professionals providing palliative care in these settings are still underrepresented in the literature.
OBJECTIVES
The aim of this study was to better understand the perceptions of palliative care providers in Nigeria.
METHODS
The authors conducted an online survey of health professionals caring for patients with palliative care and end of life needs. Survey participants were recruited via convenience sampling from a palliative care training program in Lagos, Nigeria.
RESULTS
27 palliative care program participants (12 physicians, seven nurses, four pharmacists, two psychiatrists and two physiotherapists) responded to the two-question survey. 39 free text responses were collected and analyzed. A majority (33%, n = 13) of responses reported challenges associated with caring for patients with cancer. Suboptimal pain management was the second most common response type (18%, n = 7). Other significant responses included caring for patients with comorbidities (13%, n = 5), patients seeking spiritual care (8%, n = 3) and patients who were unable to afford standard treatment (5%, n = 2). Uncategorized responses (23%, n = 9) included experiences caring for patients with injuries sustained in military operations and COVID-19, among others.
CONCLUSION
These results provide valuable insights into the palliative care experiences and challenges of an interdisciplinary set of health care practitioners providing palliative care in Nigeria. Further research is needed to elucidate the facilitators and barriers of delivering palliative care in similar settings.
Topics: Humans; Palliative Care; Nigeria; COVID-19; Qualitative Research; Physicians
PubMed: 36244641
DOI: 10.1016/j.jpainsymman.2022.10.002 -
Palliative Medicine Jan 2023Palliative care services seek to improve the wellbeing of family carers of people living with serious and life-limiting illness. To help achieve this goal, systematic...
BACKGROUND
Palliative care services seek to improve the wellbeing of family carers of people living with serious and life-limiting illness. To help achieve this goal, systematic reviews have recommended priority areas for family carer research and the need to improve the quality of study design. Policy makers have also advocated for enhanced family carer support. However, there are specific methodological considerations and challenges in designing and conducting carer research conducted during the course of the serious illness trajectory and in bereavement.
AIM
To develop strategies to improve the design and conduct of research with family carers.
DESIGN
Expert elicitation study using an adapted version of the 'Identify, Discuss, Estimate and Aggregate' elicitation protocol, supplemented with strategies from peer-reviewed literature.
SETTING/PARTICIPANTS
Nine members of the management committee of the European Association for Palliative Care's Reference group on family carer research, comprising international senior research academics in family caregiving.
RESULTS
A compilation of recommended strategies and checklist was created to: (a) help researchers plan research involving family carers focussing on: preparation, conduct and dissemination and (b) assist ethics committees and funding bodies to evaluate proposals.
CONCLUSIONS
The strategies and checklist for conducting research with family carers may enhance methodologically rigorous research. Consequently, researchers, practitioners and policy makers will not only gain a more comprehensive understanding of the unmet needs of family carers but also promote the development of empirically sound interventions.
Topics: Humans; Palliative Care; Caregivers; Checklist; Family; Bereavement
PubMed: 36380493
DOI: 10.1177/02692163221136162 -
Neuropharmacology Sep 2022Psychiatric and existential distress commonly occur in advanced cancer and other serious, life-threatening or end-of-life medical illnesses and are associated with poor... (Review)
Review
Psychiatric and existential distress commonly occur in advanced cancer and other serious, life-threatening or end-of-life medical illnesses and are associated with poor medical and psychiatric outcomes. Currently available treatment modalities in this patient population, including medication and psychotherapy, are limited in effectiveness, especially regarding existential distress. The lack of effective psycho-spiritual interventions is a critical shortcoming in palliative care and represents a high unmet need in medicine. In this commentary, we review the rationale of researching and developing psychedelic-assisted psychotherapy as a novel pharmacologic-psychotherapeutic intervention to treat psychiatric and existential distress in life-threatening medical conditions and palliative care. This paper reviews efficacy data from first and second waves of psychedelic research, and future directions for research and implementation science. More rigorous research, especially funded by governments, is needed to assess effectiveness and mechanisms of action of psychedelic therapies to treat psychiatric and existential distress in life-threatening medical illnesses and palliative care. If psychedelic-assisted treatments were made available as approved and prescribable medications in people with serious medical illnesses, it could be a significant development that opens up a pathway for clinical dissemination and public health impact internationally.
Topics: Existentialism; Hallucinogens; Humans; Neoplasms; Palliative Care; Psychotherapy
PubMed: 35772523
DOI: 10.1016/j.neuropharm.2022.109174 -
Journal of Palliative Care Apr 2022Hospice and palliative care teams face numerous barriers to the meaningful involvement of patients and families in medical decision making, which limits opportunities...
Hospice and palliative care teams face numerous barriers to the meaningful involvement of patients and families in medical decision making, which limits opportunities for exploration of the very values, preferences, and goals that ideally inform serious illness care. Researchers who develop and test interventions to address these barriers have noted the complementary utility of two existing models in supporting collaborative relationships between hospice and palliative care teams and the patients and families they serve: (1) the social problem-solving model, and (2) the integrative model of shared decision making in medical encounters. This paper describes the integration and extension of these two highly synergistic models, resulting in a goal-directed model of collaborative decision making in hospice and palliative care. Directions for practice innovation and research informed by the model are discussed at length.
Topics: Decision Making; Decision Making, Shared; Goals; Hospice Care; Hospices; Humans; Palliative Care
PubMed: 34787009
DOI: 10.1177/08258597211049138 -
BMC Palliative Care Apr 2022Due to developing demographic changes, including an aging society and the increasing prevalence of non-communicable diseases, Palliative Care is increasingly highlighted...
BACKGROUND
Due to developing demographic changes, including an aging society and the increasing prevalence of non-communicable diseases, Palliative Care is increasingly highlighted as a universal healthcare need. The need for Palliative Care in Armenia is set against the context of an underdeveloped healthcare system. Further, the absence of palliative medicine within medical education, particularly undergraduate education in Armenia presents a major barrier to improving care. This research aimed to assess the perception of young Armenian physicians' understanding of Palliative Care, its perceived status in Armenia and the experience and influence of any engaged Palliative Care education.
METHODS
Twenty Armenian first-year residents with different specializations were interviewed July and September 2016 regarding: understanding/knowledge, experiences, perceived competence, and expectations of Palliative Care and Palliative Care education. The transcripts from these semi-structured interviews were analyzed using Qualitative Content Analysis.
RESULTS
Participants perceived that Armenia's health care system lacked sufficient Palliative Care and Palliative Care education. Although elements of Palliative Care were included in different specialty teaching, this provided just a partial understanding of typical Palliative Care patients/symptoms, approaches to holistic care, and crucially key communication skills. Challenges noted by participants in caring for Palliative Care patients included emotional difficulties, communication of diagnosis/prognosis, uninformed patients and concerns for patients, families, and physicians. Self-confidence in caring for patients with incurable illness varied. Participants hoped for increasing availability and accessibility of Palliative Care, and extension of clinical education in Palliative Care at all levels (undergraduate, postgraduate, specialization).
CONCLUSIONS
Absence of training has resulted in misconceptions and ignorance of common concepts and practices in Palliative Care. Palliative Care education needs to be systematically developed and integrated into clinical training within Armenia. This research may provide a rallying call for changes within the core curricula in Armenia and may also encourage collaborative development in associated countries of the Caucasus region.
Topics: Armenia; Delivery of Health Care; Education, Nursing; Humans; Palliative Care; Physicians
PubMed: 35443640
DOI: 10.1186/s12904-022-00938-z -
African Health Sciences Sep 2022Palliative care in nursing homes (NHS) is a major challenge, because it gives the demands of the knowledge and skills of nursing staff to provide high-quality care.
BACKGROUND
Palliative care in nursing homes (NHS) is a major challenge, because it gives the demands of the knowledge and skills of nursing staff to provide high-quality care.
PURPOSE
The purpose of this study was to assess the knowledge of palliative care among nursing home staff.
METHODS
A descriptive study design was used, 124 nurses, aged over 30 years and most of them were male working in the nursing home in Jordan. Around 109 participants were responded to the questionnaire. All licensed nurses were included in the study, except of that will be excluded. The knowledge of palliative care was measured via the palliative care survey. knowledge scores were ranged 0-1, with higher scores indicate greater knowledge.
RESULTS
Descriptive statistics was used. The Knowledge of palliative care issues is 0.21 in Jordan (95% confidence interval (CI) 0.19-0.24). Knowledge of physical aspects that can contribute to pain is 0.22 (95% CI 0.2-0.25), and knowledge of psychological aspects that can contribute to pain is 0.21 (95% CI 0.2-0.22).
CONCLUSION
Education for nursing staff needs to be enhanced to address the specific knowledge gaps. Additional studies with large sample size recommended to explore the effect of educational programs in regard of palliative care in nursing homes.
Topics: Male; Humans; Aged; Adult; Female; Palliative Care; Jordan; Nursing Homes; Pain; Surveys and Questionnaires
PubMed: 36910353
DOI: 10.4314/ahs.v22i3.25 -
Annals of Palliative Medicine Sep 2022Palliative patients often suffer from serious illness and commonly move between care settings. As such, transfers of patients can take place between acute hospital based...
BACKGROUND
Palliative patients often suffer from serious illness and commonly move between care settings. As such, transfers of patients can take place between acute hospital based care and community based care in both directions. The involvement of multiple caregivers providing care across settings causes fragmentation of care. To address this challenge and to optimize coordination and continuity of care, we explored experiences of palliative patients regarding their transfers between care settings and the perceived role of the treating family physician.
METHODS
Qualitative interview study of 20 palliative patients. Participating settings were the hospital and hospitals' palliative care unit, the nursing home, the home care setting and the palliative day care centre. A constant comparative method was used to analyze data.
RESULTS
Although the home was considered the preferred residence, perceptions of unsafety arose in cases of increased symptom burden and when the organization of home care was insufficiently geared to the patients' needs. Both the nursing home and the palliative care unit offered safety and good care when home residence became unfeasible. Upon hospital admission, experiences did not always meet expectations, varying significantly depending on the hospital, type of ward and reason for hospitalization. Perceived issues regarding hospital discharge were premature release, lack of seamless care and home care insufficiently tailored to the patients' needs. The family physician's role assignment ranged from pivotal to minimal. Patients especially expected their family physician to guarantee continuity of care.
CONCLUSIONS
Home is considered the preferred place of long-term care, as long as it is perceived a safe environment. A person-centered approach, focusing on the patient's complex needs, is not consistently implemented in palliative care settings. Barriers in inter-professional collaboration need to be tackled to provide high quality care across settings.
Topics: Caregivers; Home Care Services; Hospice and Palliative Care Nursing; Humans; Palliative Care; Qualitative Research
PubMed: 35989649
DOI: 10.21037/apm-22-146 -
Supportive Care in Cancer : Official... Dec 2023Palliative care, with its focus on comprehensive patient assessment encompassing physical, social, emotional, and spiritual pain, plays a crucial role...
Palliative care, with its focus on comprehensive patient assessment encompassing physical, social, emotional, and spiritual pain, plays a crucial role in modern medicine. Despite its significance, integration with oncology and other healthcare specialties often occurs late in the disease trajectory. Strategies to bridge this gap include considering a "rebranding" of palliative care to "supportive care." Early initiation of palliative care, although challenging to define precisely, aims to improve the quality of life for patients and their families. Studies show some benefits, but the evidence remains limited. An embedded model that encourages interdisciplinary collaboration between oncologists and palliative care practitioners has shown promise. However, it raises questions about training and availability of palliative care specialists. A broader approach involves integrating palliative care principles into medical and nursing education to ensure early recognition of patient needs and empathetic communication. Regular monitoring of patients' physical and non-physical needs, along with appropriate interventions, can alleviate suffering and improve patient outcomes. Ultimately, the integration of palliative care into oncology and other disciplines focuses on addressing the individual's needs and understanding their unique experience of suffering.
Topics: Humans; Palliative Care; Quality of Life; Delivery of Health Care; Pain; Medical Oncology; Neoplasms
PubMed: 38110598
DOI: 10.1007/s00520-023-08213-4