Pub Date : 2022-05-25DOI: 10.1080/09699260.2022.2067702
S. Kotha, P. Berry
The important role of palliative care in the management of end stage liver disease is now well established, but a number of barriers related to physicians and patients may still impede timely referral. In this article, an anonymised patient’s clinical course is described, one which ends in what most would regard as a ‘bad death’. This despite the fact that his history clearly indicated a poor prognosis. The reasons behind the clinical decision to escalate care are explored in light of current evidence. These include increasing optimism around the utility of organ support, lack of consensus around use of prognostic scores, examples of liberal approaches to transplantation for alcoholic hepatitis and acute-on-chronic liver disease, the transplant imperative, and patient preference. A case is made that if a patient has expressed a clear preference to pursue life-sustaining treatment, there will be occasions where a ‘bad death’ is morally acceptable. It is concluded that palliative care should be integral to the care of patients with advanced liver disease, but that hepatologists should be upskilled and become more comfortable around clinical uncertainty.
{"title":"The writing was on the wall: Decision making near the end of life in advanced liver disease","authors":"S. Kotha, P. Berry","doi":"10.1080/09699260.2022.2067702","DOIUrl":"https://doi.org/10.1080/09699260.2022.2067702","url":null,"abstract":"The important role of palliative care in the management of end stage liver disease is now well established, but a number of barriers related to physicians and patients may still impede timely referral. In this article, an anonymised patient’s clinical course is described, one which ends in what most would regard as a ‘bad death’. This despite the fact that his history clearly indicated a poor prognosis. The reasons behind the clinical decision to escalate care are explored in light of current evidence. These include increasing optimism around the utility of organ support, lack of consensus around use of prognostic scores, examples of liberal approaches to transplantation for alcoholic hepatitis and acute-on-chronic liver disease, the transplant imperative, and patient preference. A case is made that if a patient has expressed a clear preference to pursue life-sustaining treatment, there will be occasions where a ‘bad death’ is morally acceptable. It is concluded that palliative care should be integral to the care of patients with advanced liver disease, but that hepatologists should be upskilled and become more comfortable around clinical uncertainty.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-05-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43601545","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-05-14DOI: 10.1080/09699260.2022.2066270
H. Cheng, Chak-ho Li, K. Yeung, Tracy W. Lee, K. Chan, Wai Kei Vicky Chung, Dany Hsu, O. Chan, Ruby Chui, C. Man, K. Cheung, C. Wong, M. P. Wu, Chun-hung Chan
Due to advances in medical care, a growing number of young people with life-limiting neurodevelopmental disabilities (LLNDDs) are now surviving into adulthood. However, the traditional model of care between pediatrics and adult medicine was fragmented and did not match their multi-facet needs. A special working group that includes pediatricians, adult palliative care team, and representatives from non-governmental organizations (NGOs) was formed, providing a period of joint care of 12–24 months before transitioning to the adult palliative care team. A retrospective case series of 19 young adults with LLNDDs, recorded during the July 2015–June 2020 period at the study institution is presented. Recruited patients’ age ranged from 18 to 38 (mean 26.2 [SD 6.1]). Majority of them (n = 14) require residential care at long-term care facilities (LTCFs) and high level of nursing care, which include artificial nutrition (n = 8) and home ventilator (n = 5). All patients referred to our palliative care (PC) program were engaged in a structured advance care planning (ACP) process. Seventeen patients (89.5%) had their Do-Not-Resuscitate (DNR) directives in place and two mentally competent patients completed their own advance directive (AD). All deceased (n = 10) had their DNR directives being honored. In conclusion, the palliative care needs of young adults suffering from LLNDDs should be properly addressed and implementation of a joint transitional care model between pediatrics and adult PC team is one possible method. Future research should encompass a better care model that addresses the multi-facet needs of young people suffering from LLNDDs, especially the transition from pediatrics to adult medicine.
{"title":"Transition to adult services for young people suffering from life-limiting neurodevelopmental disabilities: A case series","authors":"H. Cheng, Chak-ho Li, K. Yeung, Tracy W. Lee, K. Chan, Wai Kei Vicky Chung, Dany Hsu, O. Chan, Ruby Chui, C. Man, K. Cheung, C. Wong, M. P. Wu, Chun-hung Chan","doi":"10.1080/09699260.2022.2066270","DOIUrl":"https://doi.org/10.1080/09699260.2022.2066270","url":null,"abstract":"Due to advances in medical care, a growing number of young people with life-limiting neurodevelopmental disabilities (LLNDDs) are now surviving into adulthood. However, the traditional model of care between pediatrics and adult medicine was fragmented and did not match their multi-facet needs. A special working group that includes pediatricians, adult palliative care team, and representatives from non-governmental organizations (NGOs) was formed, providing a period of joint care of 12–24 months before transitioning to the adult palliative care team. A retrospective case series of 19 young adults with LLNDDs, recorded during the July 2015–June 2020 period at the study institution is presented. Recruited patients’ age ranged from 18 to 38 (mean 26.2 [SD 6.1]). Majority of them (n = 14) require residential care at long-term care facilities (LTCFs) and high level of nursing care, which include artificial nutrition (n = 8) and home ventilator (n = 5). All patients referred to our palliative care (PC) program were engaged in a structured advance care planning (ACP) process. Seventeen patients (89.5%) had their Do-Not-Resuscitate (DNR) directives in place and two mentally competent patients completed their own advance directive (AD). All deceased (n = 10) had their DNR directives being honored. In conclusion, the palliative care needs of young adults suffering from LLNDDs should be properly addressed and implementation of a joint transitional care model between pediatrics and adult PC team is one possible method. Future research should encompass a better care model that addresses the multi-facet needs of young people suffering from LLNDDs, especially the transition from pediatrics to adult medicine.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-05-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43636927","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-04-18DOI: 10.1080/09699260.2022.2053394
S. Saber, M. Mardani-Hamooleh, N. Seyedfatemi, H. Hamidi
It has been postulated that a palliative approach in psychiatric ward has the potential to increase the quality of care for people with severe mental illness (SMI). This study aimed to explain nurses’ perception about barriers to provision of palliative care for people with SMI. In this qualitative content analysis study, semi-structured interviews have been conducted with 26 Iranian nurses. Two categories and four subcategories were formed. The categories included poor organizational and professional infrastructure, and inadequate patient/family follow-up system. The first category includes lack of specialists who provide palliative care, lack of palliative wards, and lack of teamwork. The second category contained erroneous cultural beliefs and lack of attention to the role of family. The society must deal with the cultural taboos associated with mental illness through cultural-based interventions. Furthermore, attention should be paid to the role of families in palliative care. The health system should try to build relevant palliative care units to facilitate the provision of it for people with SMI.
{"title":"Nurses’ perception regarding barriers of palliative care provision for people with severe mental illness: A qualitative study","authors":"S. Saber, M. Mardani-Hamooleh, N. Seyedfatemi, H. Hamidi","doi":"10.1080/09699260.2022.2053394","DOIUrl":"https://doi.org/10.1080/09699260.2022.2053394","url":null,"abstract":"It has been postulated that a palliative approach in psychiatric ward has the potential to increase the quality of care for people with severe mental illness (SMI). This study aimed to explain nurses’ perception about barriers to provision of palliative care for people with SMI. In this qualitative content analysis study, semi-structured interviews have been conducted with 26 Iranian nurses. Two categories and four subcategories were formed. The categories included poor organizational and professional infrastructure, and inadequate patient/family follow-up system. The first category includes lack of specialists who provide palliative care, lack of palliative wards, and lack of teamwork. The second category contained erroneous cultural beliefs and lack of attention to the role of family. The society must deal with the cultural taboos associated with mental illness through cultural-based interventions. Furthermore, attention should be paid to the role of families in palliative care. The health system should try to build relevant palliative care units to facilitate the provision of it for people with SMI.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-04-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45687714","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-04-10DOI: 10.1080/09699260.2022.2058308
C. Kennedy
The recent literature highlights the need to improve access and extend the reach of palliative care beyond the confines of traditional clinical settings. Following Abel and colleagues, a reimagining of palliative care to address these concerns will require the promotion of public health partnerships and community participation including members of school communities in their experience of grief, loss and bereavement care.
{"title":"Palliative care: walking through the primary school gate","authors":"C. Kennedy","doi":"10.1080/09699260.2022.2058308","DOIUrl":"https://doi.org/10.1080/09699260.2022.2058308","url":null,"abstract":"The recent literature highlights the need to improve access and extend the reach of palliative care beyond the confines of traditional clinical settings. Following Abel and colleagues, a reimagining of palliative care to address these concerns will require the promotion of public health partnerships and community participation including members of school communities in their experience of grief, loss and bereavement care.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-04-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45908967","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-03-31DOI: 10.1080/09699260.2022.2052505
J. Bird, F. Wilson
Context: During the COVID-19 pandemic, the UK press featured headlines that heightened concerns around Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) orders, particularly the use of ‘blanket’ DNACPR orders applied to older people in care settings. The portrayal of DNACPR may impact professional and public understandings with implications for end-of-life care. Objectives: To explore the portrayal of DNACPR orders in the general and academic press and consider implications for public and professional understandings and practice. Method: Academic papers and articles published in the general press during the first wave of the COVID-19 pandemic in the UK were retrieved. Those pertaining to the use of DNACPR orders were analysed thematically. Results: Analysis of 179 media articles and 11 professional commentaries identified mixed understandings of DNACPR as indicated within three themes: rationing of acute services, championing autonomy in DNACPR decisions, and communication and trust. The call to ‘protect the NHS’ marginalised palliative and social care services with DNACPR constructed as a rationing tool. This led to ethical challenges around autonomy, DNACPR decisions, communication and trust. Conclusions: Media coverage of DNACPR orders was contentious and raised questions around the value of life and quality of dying, particularly for vulnerable individuals. DNACPR orders were conflated with frailty, futility and rationing of acute services and the marginalisation of palliative care. Nevertheless, media outputs stimulated advocacy and support for human rights and autonomy. However, it is unclear what the legacy will be for public and professional understandings of advance care planning and the quality of dying.
{"title":"Do not resuscitate orders in the time of COVID-19: Exploring media representations and implications for public and professional understandings","authors":"J. Bird, F. Wilson","doi":"10.1080/09699260.2022.2052505","DOIUrl":"https://doi.org/10.1080/09699260.2022.2052505","url":null,"abstract":"Context: During the COVID-19 pandemic, the UK press featured headlines that heightened concerns around Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) orders, particularly the use of ‘blanket’ DNACPR orders applied to older people in care settings. The portrayal of DNACPR may impact professional and public understandings with implications for end-of-life care. Objectives: To explore the portrayal of DNACPR orders in the general and academic press and consider implications for public and professional understandings and practice. Method: Academic papers and articles published in the general press during the first wave of the COVID-19 pandemic in the UK were retrieved. Those pertaining to the use of DNACPR orders were analysed thematically. Results: Analysis of 179 media articles and 11 professional commentaries identified mixed understandings of DNACPR as indicated within three themes: rationing of acute services, championing autonomy in DNACPR decisions, and communication and trust. The call to ‘protect the NHS’ marginalised palliative and social care services with DNACPR constructed as a rationing tool. This led to ethical challenges around autonomy, DNACPR decisions, communication and trust. Conclusions: Media coverage of DNACPR orders was contentious and raised questions around the value of life and quality of dying, particularly for vulnerable individuals. DNACPR orders were conflated with frailty, futility and rationing of acute services and the marginalisation of palliative care. Nevertheless, media outputs stimulated advocacy and support for human rights and autonomy. However, it is unclear what the legacy will be for public and professional understandings of advance care planning and the quality of dying.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-03-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43675323","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-03-27DOI: 10.1080/09699260.2022.2052504
D. Hamberger, M. Villalobos
Background In advanced tumour disease, the situation of patients may worsen due to paraneoplastic syndromes and the side effects of new therapies. In small cell lung cancer, immunotherapy has shown an improvement in outcomes for the first time in decades. Still, the prognosis remains dismal, challenging supportive care for new treatment side effects and the shared decision-making process at the end of life. Case presentation we present a patient with advanced small cell lung cancer. His situation is complicated by ectopic ACTH production with severe hypokalaemia and immune-related myocarditis after treatment with atezolizumab, leading to changing ECG findings and bradycardia. Conclusions At the end of life, priorities can shift, so medical treatments must be critically questioned regarding their benefit for the patient. New oncological treatment options may hazard the timely integration of palliative care and thus, lead to more extended hospital stays and more aggressive care. The challenging shared decision-making is time-consuming crucial in achieving goal-concordant care.
{"title":"Challenging decision-making at the end of life in an SCLC patient with severe paraneoplasia and immune CPI-toxicity: A case report","authors":"D. Hamberger, M. Villalobos","doi":"10.1080/09699260.2022.2052504","DOIUrl":"https://doi.org/10.1080/09699260.2022.2052504","url":null,"abstract":"Background In advanced tumour disease, the situation of patients may worsen due to paraneoplastic syndromes and the side effects of new therapies. In small cell lung cancer, immunotherapy has shown an improvement in outcomes for the first time in decades. Still, the prognosis remains dismal, challenging supportive care for new treatment side effects and the shared decision-making process at the end of life. Case presentation we present a patient with advanced small cell lung cancer. His situation is complicated by ectopic ACTH production with severe hypokalaemia and immune-related myocarditis after treatment with atezolizumab, leading to changing ECG findings and bradycardia. Conclusions At the end of life, priorities can shift, so medical treatments must be critically questioned regarding their benefit for the patient. New oncological treatment options may hazard the timely integration of palliative care and thus, lead to more extended hospital stays and more aggressive care. The challenging shared decision-making is time-consuming crucial in achieving goal-concordant care.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-03-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45718361","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-03-04DOI: 10.1080/09699260.2022.2035151
{"title":"Bibliography","authors":"","doi":"10.1080/09699260.2022.2035151","DOIUrl":"https://doi.org/10.1080/09699260.2022.2035151","url":null,"abstract":"","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-03-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42453971","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-02-12DOI: 10.1080/09699260.2022.2035186
Jason Mills
The field of Public Health Palliative Care (PHPC) has grown significantly over the past 20 years, since the inception of health-promoting palliative care. While much has been developed and refined in terms of theoretical basis and practice methods, there is an increasing need to consider the research agenda and methods employed to evaluate outcomes and strengthen the evidence base for public health approaches to palliative and end-of-life care. In particular, promoting the participation of underserved and vulnerable populations and understanding the influence of power structures on their representation in research is imperative. Depending on congruence between epistemological orientation, methodological choices, and options in operationalisation, there is scope to complement traditional research methodologies with new public health approaches that are participatory and directly informed by communities’ lived experience, expressed needs, and aspirations for care. Community-based participatory research (CBPR) represents a prime example, and has been applied to the PHPC model of compassionate communities (referred to as ‘caring communities’ in German-speaking countries). In this context, Wegleitner and Schuchter 2 argue that an ecological health-promotion framework for action must be complemented by social experiential learning processes arising from the collective experiences and wisdom of community members. This and CBPR are consistent with recent literature on reimagining palliative care access through partnerships and community participation. Given the public health benefits of community development and relevance of intersectionality as a transformational paradigm to understand complexities and address power relations within a settings-based social model of health, recommendations have been made to include the prioritisation of active research involvement by patients and the wider public (outside of clinical contexts). Outside of this PHPC context, CBPR has been used to address inequities in access to palliative care and promote social justice for historically excluded groups; however, participatory engagement between clinical services and community groups alone—although helpful —may not be sustainable where it is not supported by societal infrastructure and broader policies that transcend diversity across communities to engage common participation from everyday citizens. Indeed, a wellknown challenge relating to CBPR has been to ground it in a relevant social movement theoretical model for change. Based on the WHO Healthy Cities model, the Compassionate Cities movement is an example of a civic programme that has been implemented across cities worldwide. The Compassionate City Charter also forms a key component of Abel and colleagues’ new essentials public health model of palliative care, encapsulating: (1) Civic programmes; (2) Compassionate Communities; (3) Generalist Palliative Care; and (4) Specialist Palliative Care. Thus CBPR can usefully
{"title":"Community-based participatory research and Public Health Palliative Care","authors":"Jason Mills","doi":"10.1080/09699260.2022.2035186","DOIUrl":"https://doi.org/10.1080/09699260.2022.2035186","url":null,"abstract":"The field of Public Health Palliative Care (PHPC) has grown significantly over the past 20 years, since the inception of health-promoting palliative care. While much has been developed and refined in terms of theoretical basis and practice methods, there is an increasing need to consider the research agenda and methods employed to evaluate outcomes and strengthen the evidence base for public health approaches to palliative and end-of-life care. In particular, promoting the participation of underserved and vulnerable populations and understanding the influence of power structures on their representation in research is imperative. Depending on congruence between epistemological orientation, methodological choices, and options in operationalisation, there is scope to complement traditional research methodologies with new public health approaches that are participatory and directly informed by communities’ lived experience, expressed needs, and aspirations for care. Community-based participatory research (CBPR) represents a prime example, and has been applied to the PHPC model of compassionate communities (referred to as ‘caring communities’ in German-speaking countries). In this context, Wegleitner and Schuchter 2 argue that an ecological health-promotion framework for action must be complemented by social experiential learning processes arising from the collective experiences and wisdom of community members. This and CBPR are consistent with recent literature on reimagining palliative care access through partnerships and community participation. Given the public health benefits of community development and relevance of intersectionality as a transformational paradigm to understand complexities and address power relations within a settings-based social model of health, recommendations have been made to include the prioritisation of active research involvement by patients and the wider public (outside of clinical contexts). Outside of this PHPC context, CBPR has been used to address inequities in access to palliative care and promote social justice for historically excluded groups; however, participatory engagement between clinical services and community groups alone—although helpful —may not be sustainable where it is not supported by societal infrastructure and broader policies that transcend diversity across communities to engage common participation from everyday citizens. Indeed, a wellknown challenge relating to CBPR has been to ground it in a relevant social movement theoretical model for change. Based on the WHO Healthy Cities model, the Compassionate Cities movement is an example of a civic programme that has been implemented across cities worldwide. The Compassionate City Charter also forms a key component of Abel and colleagues’ new essentials public health model of palliative care, encapsulating: (1) Civic programmes; (2) Compassionate Communities; (3) Generalist Palliative Care; and (4) Specialist Palliative Care. Thus CBPR can usefully ","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-02-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48675982","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-01-20DOI: 10.1080/09699260.2021.2021371
D. Rawlings, L. Miller-Lewis, J. Tieman
A Dying2learn Massive Open Online Course (MOOC) was held in 2020 with the aim of bringing the community together to talk about death and dying, with participants undertaking activities, contributing comments, and sharing thoughts and feelings. An activity was posed for participants within a compassionate communities’ framework related to the Death Doula role. As we were interested in the views regarding the Death Doula role by those without a professional background in healthcare. We extracted comments from this cohort of course participants (n = 147) and analysed them in NVivo. Eight themes were subsequently generated: (1) It is new to me, and I have no experience with one, (2) I have heard of it, and I have met one, (3) There is a place for it, but what about the role of family and friends, (4) Death doula training, finding the role interesting and wanting to know more, (5) Creating community, supporting the dying and helping loved ones, (6) I am one, I do this informally, or I want to be one, (7) The name, the industry, paying someone (8) Providing an alternative and recognising similar roles. The Dying2Learn community MOOC participants felt that there was value in having a supportive role such as a Death Doula and that it had importance for individuals and society. It was also apparent that the Death Doula role generated considerable interest from participants.
{"title":"‘It’s like a wedding planner’: Dying2Learn Massive Open Online Course participants views of the Death Doula role","authors":"D. Rawlings, L. Miller-Lewis, J. Tieman","doi":"10.1080/09699260.2021.2021371","DOIUrl":"https://doi.org/10.1080/09699260.2021.2021371","url":null,"abstract":"A Dying2learn Massive Open Online Course (MOOC) was held in 2020 with the aim of bringing the community together to talk about death and dying, with participants undertaking activities, contributing comments, and sharing thoughts and feelings. An activity was posed for participants within a compassionate communities’ framework related to the Death Doula role. As we were interested in the views regarding the Death Doula role by those without a professional background in healthcare. We extracted comments from this cohort of course participants (n = 147) and analysed them in NVivo. Eight themes were subsequently generated: (1) It is new to me, and I have no experience with one, (2) I have heard of it, and I have met one, (3) There is a place for it, but what about the role of family and friends, (4) Death doula training, finding the role interesting and wanting to know more, (5) Creating community, supporting the dying and helping loved ones, (6) I am one, I do this informally, or I want to be one, (7) The name, the industry, paying someone (8) Providing an alternative and recognising similar roles. The Dying2Learn community MOOC participants felt that there was value in having a supportive role such as a Death Doula and that it had importance for individuals and society. It was also apparent that the Death Doula role generated considerable interest from participants.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-01-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47575034","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2022-01-02DOI: 10.1080/09699260.2022.2001140
A. C. M. Garcia, L. O. Maia
The healthcare field and society at large are witnessing a resurgence of interest in the effects and applications of psychedelic therapies in a wide range of settings. In the 1950s and 1960s, research was conducted to explore different applications for psychedelics, such as lysergic acid diethylamide (LSD) and mescaline, in the healthcare setting. However, psychedelic research was dramatically reduced in the 1970s due to regulatory, political, and social issues. With the resumption of studies involving psychedelics mostly since the 2000s, several studies have been conducted in order to investigate the therapeutic potential of these substances, including in patients with serious diseases. Psychedelics, formerly known as ‘hallucinogens,’ are substances that elicit changes in perception, cognition, emotion and may also evoke peak or mystical experiences. Based on their pharmacological profiles, psychedelics can be classified into four classes: 1) classic psychedelics (serotonin 2A receptor agonists, e.g., LSD, psilocybin, dimethyltryptamine [DMT], mescaline); 2) empathogens or entactogens (mixed serotonin and dopamine reuptake inhibitors and releasers such as methylenedioxymethamphetamine [MDMA]); 3) dissociative anaesthetic agents (glutamate receptors antagonists such as ketamine); and 4) atypical psychedelics (diverse mechanisms of action, e.g., ibogaine, tetrahydrocannabinol [THC], salvinorin A). Most of these compounds are found – or are similar to chemical compounds found – in plants or fungi that have been used for millennia in traditional spiritual or folk healing rituals. Primarily in the fields of hospice and palliative care, assisted psychedelic therapies have been investigated as a potential novel therapeutic modality due to preliminary evidence suggesting their profound impact on psychological, existential, and spiritual outcomes in patients with serious diseases. Results indicate that psychedelic experiences, in a controlled setting, can catalyze psychological processes associated with illness and fear of death, promoting therapeutic effects that impact the physical, mental, and spiritual spheres – thus representing a possible therapeutic tool for providing care to critically ill patients. In a recent interview, Dr. Anthony Bossis, clinical psychologist and clinical assistant professor of psychiatry at New York University School of Medicine, a scientist working in the field of palliative care and psychedelic therapies, states that one of the insights that many psychedelic research volunteers shared is that by turning emotionally toward fear and feelings regarding their death, they often felt less anxiety, more compassion, love for themselves and others, and nurtured new insights. While it can be a challenging experience, by turning to grief, they spoke of experiencing greater acceptance and openness to the mystery of death. In doing so, they reported being able to live more wholeheartedly in the present moment. Taken together, these pot
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