scholarly journals The Unspeakable Nature of Death & Dying During Childhood: A Silenced Phenomenon in Pediatric Care

2022 ◽  
pp. 003022282110670
Author(s):  
Sydney Campbell ◽  
Fiona J. Moola ◽  
Jennifer L. Gibson ◽  
Jeremy Petch ◽  
Avram Denburg
Keyword(s):  
End Of Life ◽  
Death And Dying ◽  
Children And Youth ◽  
Pediatric Care ◽  
Fundamental Aspect ◽  
Medical Assistance ◽  
Open Communication ◽  
Related Literature ◽  
Medical Assistance In Dying

In pediatric settings, the concept of hope is frequently positioned as a fundamental aspect of care and at odds with the possibility and proximity of death. This arguably fosters silence about death and dying in childhood despite evidence indicating the benefits of open communication at the end of life. In this paper, we describe the unspeakable nature of death and dying in childhood, including its conceptual and clinical causes and dimensions, its persistence, and the associated challenges for children and youth facing critical illnesses, their families, and society. We explore how the tension between hope and death can be reframed and apply our analysis to the context of medical assistance in dying for mature minors in Canada. Considering the lack of related literature, this paper offers initial reflections to form a framework for the unspeakable nature of death and dying in childhood and to advance the crucial need for research.

“Dying with a Smile, Just Knowing that Somebody’s Listened to Me”: End-Of-Life Care and Medical Assistance in Dying in Canadian Prisons

2021 ◽  
pp. 003022282110523
Author(s):  
Jessica Shaw ◽  
Peter Driftmier
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Death And Dying ◽  
Care Program ◽  
Life Care ◽  
Medical Assistance ◽  
Eligibility Criteria ◽  
Medical Assistance In Dying ◽  
Program Support ◽  
Sound Policy

Medical assistance in dying (MAiD) has been legal in Canada since 2016 and some incarcerated patients who are at the end of their lives are eligible for the procedure. Interviews with nine incarcerated men at a federal penitentiary in Canada provide insight into some of the ways that people who are navigating aging and end-of-life in prison think about MAiD. Interview themes are organized around: experience with death and dying; possibilities and barriers related to applications for release from prison at end-of-life; experiences of peer-caregiving in a prison palliative care program; support for MAiD and the expansion of eligibility criteria; what a good death looks like. Themes are contextualized alongside federal guidelines related to end-of-life care (EOLC) and MAiD for prisoners, highlighting that sound policy requires both generalizable principles and attention to nuance. MAiD rests on patient voluntariness, and thus autonomy over EOLC decisions is paramount for prisoners.

scholarly journals Fodder for Despair, Masquerading as Hope: Diagnosing the Postures of Hope(lessness) at the End of Life

Religions ◽  
2019 ◽  
Vol 10 (12) ◽  
pp. 651
Author(s):  
Ashley Moyse
Keyword(s):  
End Of Life ◽  
Human Life ◽  
Medical Professionals ◽  
Human Beings ◽  
Medical Assistance ◽  
Medical Assistance In Dying ◽  
Instrumental Reasoning ◽  
Counter Narratives ◽  
Late Modern ◽  
Classical Account

Hope is needed for persons confronting the limits of human life, antagonised by the threats of death. It is needed also for those health and medical professionals constrained by the institution of medicine, determined by market metaphors and instrumental reasoning. Yet, despair can masquerade as hope for such persons when functional hoping for particular outcomes or aims proves futile and aimless. The following will examine such masquerades, while giving attention to particular expressions of autonomy, which persist as fodder for despair in our late modern milieu. The late classical account of Hercules and his death, as well as contemporary reasons for soliciting medical assistance in dying, will focus on the diagnostics of despair, while a Christian account practicing presence, and of hope as a concrete posture enfleshed by habits of patience, among other virtues, will point toward counter-narratives that might sustain persons in times of crisis and enable persons’ flourishing as human beings, even unto death.

scholarly journals How does Medical Assistance in Dying affect end-of-life care planning discussions? Experiences of Canadian multidisciplinary palliative care providers

2021 ◽  
Vol 15 ◽  
pp. 263235242110459
Author(s):  
Anita Ho ◽  
Joshua S. Norman ◽  
Soodabeh Joolaee ◽  
Kristie Serota ◽  
Louise Twells ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Assisted Dying ◽  
Life Care ◽  
Care Providers ◽  
Specialist Palliative Care ◽  
Medical Assistance ◽  
Medical Assistance In Dying ◽  
Qualitative Thematic Analysis

Background: More than a dozen countries have now legalized some form of assisted dying, and additional jurisdictions are considering similar legislations or expanding eligibility criteria. Despite the persistent controversies about the relationship between medicine, palliative care, and assisted dying, many people are interested in assisted dying. Understanding how end-of-life care discussions between patients and specialist palliative care providers may be affected by such legislation can inform end-of-life care delivery in the evolving socio-cultural and legal environment. Aim: To explore how the Canadian Medical Assistance in Dying legislation affects end-of-life care discussions between patients and multidisciplinary specialist palliative care providers. Design: Qualitative thematic analysis of semi-structured interviews. Participants: Forty-eight specialist palliative care providers from Vancouver (n = 26) and Toronto ( n = 22) were interviewed in person or by phone. Participants included physicians ( n = 22), nurses ( n = 15), social workers ( n = 7), and allied health professionals ( n = 4). Results: Qualitative thematic analysis identified five notable considerations associated with Medical Assistance in Dying affecting end-of-life care discussions: (1) concerns over having proactive conversations about the desire to hasten death, (2) uncertainties regarding wish-to-die statements, (3) conversation complexities around procedural matters, (4) shifting discussions about suffering and quality of life, and (5) the need and challenges of promoting open-ended discussions. Conclusion: Medical Assistance in Dying challenges end-of-life care discussions and requires education and support for all concerned to enable compassionate health professional communication. It remains essential to address psychosocial and existential suffering in medicine, but also to provide timely palliative care to ensure suffering is addressed before it is deemed irremediable. Hence, clarification is required regarding assisted dying as an intervention of last resort. Furthermore, professional and institutional guidance needs to better support palliative care providers in maintaining their holistic standard of care.

Medically Assisted Dying in Canada: “Beautiful Death” Is Transforming Nurses’ Experiences of Suffering

2019 ◽  
pp. 084456211985623 ◽  
Author(s):  
Anne Bruce ◽  
Rosanne Beuthin
Keyword(s):  
End Of Life ◽  
Secondary Analysis ◽  
Emotional Impact ◽  
Assisted Dying ◽  
Medical Assistance ◽  
Narrative Study ◽  
Medical Assistance In Dying ◽  
Qualitative Secondary Analysis ◽  
The Impact

BackgroundNurses witness pain and distress up close and consequently experience their own suffering. A narrative study of Canadian nurses’ participating in medical assistance in dying found nurses’ previous witnessing of unresolved end-of-life suffering has shaped their acceptance of medical assistance in dying. Little is known about the impact of participating in medically assisted dying on nurses’ suffering.PurposeTo explore how nurses’ overall experience of suffering is shaped by participating in medical assistance in dying.MethodsQualitative secondary analysis using narrative inquiry and thematic analysis.ResultsNurses’ narratives are chronologically organized addressing experiences of suffering before medical assistance in dying was a legal option and after its implementation. An overarching narrative before the availability of medical assistance in dying is (1) a culture of nurses’ taken-for-granted suffering: feeling terrible. After medical assistance in dying, two key narratives describe (2) transformational feelings of a beautiful death and (3) residual discomfort. Nurses found their suffering transformed when participating in medical assistance in dying; end-of-life care was satisfying and gratifying. And yet, unanswered questions due to worries of becoming desensitized and ongoing deeper questioning remain.ConclusionsParticipating in medical assistance in dying has positively impacted nurses and starkly contrasts their previous experiences caring for those with unbearable suffering. Further research is needed to explore becoming desensitized and long-term emotional impact for nurses.

scholarly journals Oncologists and medical assistance in dying: where do we stand? Results of a national survey of Canadian oncologists

2020 ◽  
Vol 27 (5) ◽  
Author(s):  
G. Chandhoke ◽  
Gregory Pond ◽  
O. Levine ◽  
S. Oczkowski
Keyword(s):  
End Of Life ◽  
National Survey ◽  
Online Survey ◽  
Therapeutic Option ◽  
Willingness To Participate ◽  
Medical Assistance ◽  
Medical Assistance In Dying ◽  
Radiation Oncologists ◽  
Canadian Association ◽  
Medical Oncologists

Background In June 2016, when the Parliament of Canada passed Bill C-14, the country joined the small number of jurisdictions that have legalized medical assistance in dying (maid). Since legalization, nearly 7000 Canadians have received maid, most of whom (65%) had an underlying diagnosis of cancer. Although Bill C-14 specifies the need for government oversight and monitoring of maid, the government-collected data to date have tracked patient charac­teristics, rather than clinician encounters and beliefs. We aimed to understand the views of Canadian oncologists 2 years after the legalization of maid. Methods We developed and administered an online survey to medical and radiation oncologists to understand their exposure to maid, self-perceived knowledge, willingness to participate, and perception of the role of oncologists in introducing maid as an end-of-life care option. We used complete sampling through the Canadian Association of Medical Oncologists and the Canadian Association of Radiation Oncology membership e-mail lists. The survey was sent to 691 physicians: 366 radiation oncologists and 325 medical oncologists. Data were collected during March–June 2018. Results are presented using descriptive statistics and univariate or multivariate analysis. Results The survey attracted 224 responses (response rate: 32.4%). Of the responding oncologists, 70% have been approached by patients requesting maid. Oncologists were of mixed confidence in their knowledge of the eligibility criteria. Oncologists were most willing to engage in maid with an assessment for eligibility, and yet most refer to specialized teams for assessments. In terms of introducing maid as an end-of-life option, slight more than half the responding physicians (52.8%) would initiate a conversation about maid with a patient under certain circumstances, most commonly the absence of viable therapeutic options, coupled with unmanageable patient distress. Conclusions In this first national survey of Canadian oncologists about maid, we found that most respondents encounter patient requests for maid, are confident in their knowledge about eligibility, and are willing to act as assessors of eligibility. Many oncologists believe that, under some circumstances, it is appropriate to present maid as a therapeutic option at end of life. That finding warrants further deliberation by national or regional bodies for the development of consensus guidelines to ensure equitable access to maid for patients who wish to pursue it.  

Oncologists and medical assistance in dying: Where do we stand?

2018 ◽  
Vol 36 (34_suppl) ◽  
pp. 64-64
Author(s):  
Gur Chandhoke ◽  
Gregory Russell Pond ◽  
Oren Hannun Levine ◽  
Simon Oczkowski
Keyword(s):  
End Of Life ◽  
Online Survey ◽  
Therapeutic Option ◽  
P Value ◽  
Willingness To Participate ◽  
Medical Assistance ◽  
Medical Assistance In Dying ◽  
Radiation Oncologists ◽  
Canadian Association ◽  
Medical Oncologists

64 Background: With the passage of Bill C-14 in June 2016, medical assistance in dying (MAiD) was formally enacted into Canadian law. Since then, approximately 2,000 patients have died with medical assistance across the country, with cancer being the most common qualifying condition. We aimed to understand the views of oncology providers (OPs) regarding MAiD. Methods: We designed and administered an online survey to Canadian OPs’ to assess experience with MAiD, self-perceived knowledge, willingness to participate, and perception of the role of OPs in introducing MAiD as an end-of-life care option. We used complete sampling via the Canadian Association of Medical Oncologists (CAMO) and the Canadian Association of Radiation Oncologists (CARO) membership email lists. The survey was sent to 366 Radiation Oncologists, and 325 Medical Oncologists. Data was collected from April-June 2018. Results were analyzed using descriptive statistics as well as univariate and multivariate analysis. Results: We received 224 responses (response rate 32.4%). 70% of OPs have been approached by patients requesting MAiD. OPs were confident in their knowledge of the eligibility criteria, and previous exposure to MAiD was associated with confidence in this domain (odds ratio [OR]=3.77, 95% CI=2.05-6.94, p value<0.001). OPs were most willing to engage in MAiD with an assessment for eligibility, yet most refer to specialized teams for assessments. A majority of physicians (52.8%) would initiate a conversation of MAiD with a patient under certain circumstances, most commonly the absence of viable therapeutic options, coupled with unmanageable patient distress. Conclusions: In this first national survey of Canadian OP’s regarding MAiD, we found that most OP’s encounter patient requests for MAiD, are confident in knowledge of eligibility, and are willing to act as assessors of eligibility. Many OP’s believe that it is appropriate to present MAiD as a therapeutic option at the end of life under some circumstances. This finding warrants further deliberation amongst national/regional bodies for the development of consensus guidelines in order to ensure equitable access to MAiD for patients who wish to pursue it.

The Somatechnologies of Canada's Medical Assistance in Dying Law: LGBTQ Discourses on Suicide and the Injunction to Live

Somatechnics ◽  
2017 ◽  
Vol 7 (2) ◽  
pp. 201-217 ◽  
Author(s):  
Alexandre Baril
Keyword(s):  
End Of Life ◽  
Assisted Suicide ◽  
Mental Disability ◽  
Medical Assistance ◽  
Disabled People ◽  
Canadian Government ◽  
Physically Disabled ◽  
Medical Assistance In Dying ◽  
Oppressed Group ◽  
Physically Disabled People

In June 2016, the Canadian government passed Bill C-14 on medical assistance in dying, allowing for medically assisted suicide when ‘death has become reasonably foreseeable.’ While available for ill or physically disabled people at the end-of-life, medically assisted suicide is denied in cases where people are perceived to have a mental disability and whose suffering is strictly emotional/psychological, such as suicidal people. I argue that this distinction results in constructing two classes of suicidal subjects by considering physically disabled or ill people as legitimate subjects who should receive assistance in dying and suicidal people as illegitimate subjects who must be kept alive through what I call the ‘injunction to live’ and ‘somatechnologies of life’. Analysing discourses on suicide targeting lesbian, gay, bisexual, trans* and queer (LGBTQ) people in LGBTQ scholarship, I argue that, based on the silencing of suicidal subjects through the injunction to live, suicidal people constitute an oppressed group whose claims remain unintelligible within society, law, medical/psychiatric systems and LGBTQ scholarship. This article calls for listening to suicidal people's voices and developing an accountable response to their suffering and claims.

Perceptions and Experiences of Medical Assistance in Dying Among Illicit Substance Users and People Living in Poverty

2019 ◽  
pp. 003022281988982
Author(s):  
Jessica Shaw ◽  
Laura Harper ◽  
Emma Preston ◽  
Alysia Wright ◽  
Michaela Kelly ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Best Practice ◽  
Life Care ◽  
Medical Assistance ◽  
Substance Users ◽  
Assisted Death ◽  
Illicit Substance ◽  
Medical Assistance In Dying ◽  
The Difference

Since medical assistance in dying (MAiD) became legal in Canada in 2016, there have been concerns about vulnerable people feeling pressured to end their lives. It is important to understand what people in marginalized communities know and feel about MAiD in order to help prevent any pressure to hasten death and to prevent any barriers to accessing assisted death. This qualitative study explored the perceptions and experiences of MAiD and other end-of-life care options with 46 people who were illicit substance users, living in poverty, or who worked with marginalized people in these communities. Six broad themes were identified: the importance of family, friends, and community; the effects of the opioid crisis; barriers to accessing end-of-life care services; support for MAiD; the difference between suicide and MAiD; and what constitutes a good death. Findings from this research may be used to help inform future legislation, professional guidelines, and standards of best practice.

Care Considerations in a Patient- and Family-Centered Medical Assistance in Dying Program

2020 ◽  
pp. 082585972095166
Author(s):  
Janine Brown ◽  
Donna Goodridge ◽  
Averi Harrison ◽  
Jordan Kemp ◽  
Lilian Thorpe ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Healthcare Providers ◽  
Anticipatory Guidance ◽  
Interdisciplinary Care ◽  
Life Care ◽  
Care Providers ◽  
Medical Assistance ◽  
Medical Assistance In Dying ◽  
Family Centered

Background: Medical Assistance in Dying (MAID) became legal in Canada in June 2016. As part of a project designed to improve end-of-life care for those requesting MAID, qualitative data from patients, families, and providers were used to assess opportunities to enhance patient-and family-centered care (PFCC) in this program. Methods: Thirty interviews were conducted with patients, families, and healthcare providers. Five patients who requested an assessment for MAID, 11 family members, and 14 healthcare providers were interviewed about their experiences in 2017. Comparative coding and thematic analysis were completed with the support of NVivo12. Results: Emotional PFCC considerations included: exploring and validating the emotional journey, navigating the uncertain, judgmental experiences, and the emotional impact on families and the care team. Physical PFCC considerations included: sensitivity in eligibility assessments, weaving in interdisciplinary care, provision of anticipatory guidance, and death location. Spiritual PFCC considerations included: honoring choice, listening to life stories, supporting spiritual needs, and acknowledging loss. Relational PFCC considerations included: defining the circle of support, supporting the circle, and relational investments. Conclusion: Fundamental to a PFCC MAID program, practitioners must be afforded time to provide holistic care. Program-related suggestions include incorporating interdisciplinary care early, and throughout the illness trajectory, consistency in care providers, appropriate anticipatory guidance, and bereavement supports for family, and dedicate space for MAID provisions. Patients and families must be included in the ongoing development and re-evaluation of MAID programs to ensure continued focus on quality end-of-life care.

scholarly journals Medical Assistance in Dying: Canadian Registry Recommendations

2018 ◽  
pp. 55
Author(s):  
Rose M. Carter, Q.C. ◽  
Brandyn Rodgerson ◽  
Dr. Michael Grace
Keyword(s):  
Data Collection ◽  
End Of Life ◽  
Cancer Registry ◽  
End Of Life Care ◽  
Life Care ◽  
National Data ◽  
Medical Assistance ◽  
Medical Assistance In Dying ◽  
Area Of Interest ◽  
Registry System

Medical assistance in dying (MAID) is a relatively new phenomenon in Canada, and is therefore a growing area of interest in the legal and medical communities. Research is hampered, however, by the lack of a standardized approach to collecting data on MAID cases. The authors first discuss the importance of having comprehensive data to improving preventative and end-of-life care across Canada. The authors then canvas the existing framework for reporting MAID cases in Canada before noting its deficiencies, most importantly, a lack of comprehensive, nation-wide data collection. The authors then propose a model for national data collection based on the existing Canadian cancer registry system.

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