Common dedication to facilitating good dying experiences: Qualitative study of end-of-life care professionals’ attitudes towards voluntary assisted dying

2019 ◽  
Vol 33 (6) ◽  
pp. 562-569 ◽  
Author(s):  
Sarah-May Blaschke ◽  
Penelope Schofield ◽  
Keryn Taylor ◽  
Anna Ugalde
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
Health Professionals ◽  
End Of Life Care ◽  
Policy Development ◽  
Sampling Strategy ◽  
Assisted Dying ◽  
Life Care ◽  
Structured Interviews ◽  
Moral Philosophies

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.

A qualitative study of physicians’ conscientious objections to medical aid in dying

2019 ◽  
Vol 33 (9) ◽  
pp. 1212-1220 ◽  
Author(s):  
Marie-Eve Bouthillier ◽  
Lucie Opatrny
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
End Of Life Care ◽  
Descriptive Analysis ◽  
Life Care ◽  
Structured Interviews ◽  
Emotional Burden ◽  
Medical Aid ◽  
Aid In Dying ◽  
Support Policy

Background: Under Quebec’s Act respecting end-of-life care, physicians may refuse to provide medical aid in dying because of personal convictions, also called conscientious objections. Before legalisation, the results of our survey showed that the majority of physicians were in favour of medical aid in dying (76%), but one-third (28%) were not prepared to perform it. After 18 months of legalisation, physicians were refusing far more frequently than the pre-Act survey had anticipated. Aim: To explore the conscientious objections stated by physicians so as to understand why some of them refuse to get involved in their patients’ medical aid in dying requests. Design/participants: An exploratory qualitative study based on semi-structured interviews with 22 physicians who expressed a refusal after they received a request for medical aid in dying. Thematic descriptive analysis was used to analyse physicians’ motives for their conscientious objections and the reasons behind it. Results: The majority of physicians who refused to participate did not oppose medical aid in dying. The reason most often cited is not based on moral and religious grounds. Rather, the emotional burden related to this act and the fear of psychological repercussions were the most expressed motivations for not participating in medical aid in dying. Conclusion: The originality of this research is based on what the actual perception is of doing medical aid in dying as opposed to merely a conceptual assent. Further explorations are required in order to support policy decisions such as access to better emotional supports for providers and interdisciplinary support.

scholarly journals The “Palliative Soul”

2019 ◽  
Vol 19 (2) ◽  
pp. 13
Author(s):  
Zoe Tao
Keyword(s):  
Patient Care ◽  
End Of Life ◽  
Health Professionals ◽  
End Of Life Care ◽  
Clinical Intervention ◽  
Theory Approach ◽  
Life Care ◽  
Psychosocial Needs ◽  
Structured Interviews ◽  
Music Therapists

This qualitative research project features semi-structured interviews on perspectives of humanistic care with Spanish physicians and therapists who have worked in or are familiar with music therapy and end of life care, disciplines that identify themselves as centering humanistic values in patient care. The purpose of the study was to have the thirteen music therapists and physicians elaborate on their perceptions regarding humanistic patient care and synthesize common elements from their interviews. A grounded theory approach was used to construct and derive themes among interviewees, and a narrative method of analysis was used to highlight salient philosophies of care and moments of conversation with clinicians. Building off of the interviews, this article explores how artistic engagement in end-of-life contexts sets up avenues for spiritual, psychosocial, and medical care. This “palliative soul” approach to patient care illuminates how health professionals may humanize patients at the end of life: leaning in to experiences of suffering with intention and an open ear, approaching patients in anticipation of their potential spiritual, emotional, and psychosocial needs, defining suffering, wellbeing, and effective clinical intervention through the patient’s voice, thinking actively about their own biases and shortcomings in care, and overall seeing the beauty and humanity in people both within and despite their arrival at end-stage disease. Lastly, this article discusses how even outside the context of end of life care, health professionals may broadly adopt the “palliative soul” and incorporate the needs of patients and their relational networks into clinical practice.

scholarly journals Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life

2015 ◽  
Vol 3 (31) ◽  
pp. 1-138 ◽  
Author(s):  
Kristian Pollock ◽  
Eleanor Wilson
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
Advance Care Planning ◽  
Health Professionals ◽  
End Of Life Care ◽  
Community Care ◽  
Death And Dying ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

BackgroundAdvance care planning (ACP) enables patients to consider, discuss and, if they wish, document their wishes and preferences for future care, including decisions to refuse treatment, in the event that they lose capacity to make decisions for themselves. ACP is a key component of UK health policy to improve the experience of death and dying for patients and their families. There is limited evidence about how patients and health professionals understand ACP, or when and how this is initiated. It is evident that many people find discussion of and planning for end of life care difficult, and tend to avoid the topic.AimTo investigate how patients, their relatives and health professionals initiate and experience discussion of ACP and the outcomes of advance discussions in shaping care at the end of life.Design and data collectionQualitative study with two workstreams: (1) interviews with 37 health professionals (general practitioners, specialist nurses and community nurses) about their experiences of ACP; and (2) longitudinal case studies of 21 patients with 6-month follow-up. Cases included a patient and, where possible, a nominated key relative and/or health professional as well as a review of medical records. Complete case triads were obtained for 11 patients. Four cases comprised the patient alone, where respondents were unable or unwilling to nominate either a family member or a professional carer they wished to include in the study. Patients were identified as likely to be within the last 6 months of life. Ninety-seven interviews were completed in total.SettingGeneral practices and community care settings in the East Midlands of England.FindingsThe study found ACP to be uncommon and focused primarily on specific documented tasks involving decisions about preferred place of death and cardiopulmonary resuscitation, supporting earlier research. There was no evidence of ACP in nearly half (9 of 21) of patient cases. Professionals reported ACP discussions to be challenging. It was difficult to recognise when patients had entered the last year of life, or to identify their readiness to consider future planning. Patients often did not wish to do so before they had become gravely ill. Consequently, ACP discussions tended to be reactive, rather than pre-emptive, occurring in response to critical events or evidence of marked deterioration. ACP discussions intersected two parallel strands of planning: professional organisation and co-ordination of care; and the practical and emotional preparatory work that patients and families undertook to prepare themselves for death. Reference to ACP as a means of guiding decisions for patients who had lost capacity was rare.ConclusionsAdvance care planning remains uncommon, is often limited to documentation of a few key decisions, is reported to be challenging by many health professionals, is not welcomed by a substantial number of patients and tends to be postponed until death is clearly imminent. Current implementation largely ignores the purpose of ACP as a means of extending personal autonomy in the event of lost capacity.Future workAttention should be paid to public attitudes to death and dying (including those of culturally diverse and ethnic minority groups), place of death, resuscitation and the value of anticipatory planning. In addition the experiences and needs of two under-researched groups should be explored: the frail elderly, including those who manage complex comorbid conditions, unrecognised as vulnerable cases; and those patients affected by stigmatised conditions, such as substance abuse or serious mental illness who fail to engage constructively with services and are not recognised as suitable referrals for palliative and end of life care.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

scholarly journals Before the 2020 Pandemic: an observational study exploring public knowledge, attitudes, plans, and preferences towards death and end of life care in Wales

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Ishrat Islam ◽  
Annmarie Nelson ◽  
Mirella Longo ◽  
Anthony Byrne
Keyword(s):  
Social Media ◽  
End Of Life ◽  
Health Professionals ◽  
End Of Life Care ◽  
Public Attitudes ◽  
Death And Dying ◽  
Service Utilisation ◽  
Life Care ◽  
Manner Of Death ◽  
Attitudes Towards Death

Abstract Background Understanding public attitudes towards death and dying is important to inform public policies around End of Life Care (EoLC). We studied the public attitudes towards death and dying in Wales. Methods An online survey was conducted in 2018. Social media and the HealthWiseWales platform were used to recruit participants. Data were analysed using descriptive statistics and thematic analysis. Results 2,210 people participated. Loss of independence (84%), manner of death, and leaving their beloved behind were the biggest fears around death and dying. In terms of EoLC, participants sought timely access to care (84%) and being surrounded by loved ones (62%). Being at home was less of a priority (24%). Only 50% were familiar with Advance Care Planning (ACP). A lack of standard procedures as well as of support for the execution of plans and the ability to revisit those plans hindered uptake. The taboo around death conversations, the lack of opportunities and skills to initiate discussion, and personal fear and discomfort inhibited talking about death and dying. 72% felt that we do not talk enough about death and dying and advocated normalising talking by demystifying death with a positive approach. Health professionals could initiate and support this conversation, but this depended on communication skills and manageable workload pressure. Participants encouraged a public health approach and endorsed the use of: a) social media and other public platforms, b) formal education, c) formal and legal actions, and d) signposting and access to information. Conclusions People are ready to talk about death and dying and COVID-19 has increased awareness. A combination of top-down and bottom-up initiatives across levels and settings can increase awareness, knowledge, and service-utilisation-drivers to support health professionals and people towards shared decisions which align with people’s end of life wishes and preferences.

scholarly journals Life-and-Death Attitude and Its Formation Process and End-of-Life Care Expectations Among the Elderly Under Traditional Chinese Culture: A Qualitative Study

2021 ◽  
pp. 104365962110214
Author(s):  
Lei Lei ◽  
Quanxi Gan ◽  
Chunyan Gu ◽  
Jing Tan ◽  
Yu Luo
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
Formation Process ◽  
End Of Life Care ◽  
Chinese Culture ◽  
Life Quality ◽  
The Elderly ◽  
Life Care ◽  
Life And Death ◽  
The Individual

Introduction With the global aging process intensified, the demand for end-of-life care has surged, especially in China. However, its development is restricted. Understanding the life and death attitude among the elderly and its formation process, and clarifying their needs, are so important to promote social popularization of end-of-life care. Methodology This qualitative study included 20 elderly residents in Nan and Shuangbei Communities, Chongqing City, People’s Republic of China. Data were collected through semistructured in-depth individual interviews and processed by thematic analysis method. Results Three themes and eight subthemes were identified: Characteristics of formation process (passive thinking, closed and single), life-and-death attitude (cherish and enjoy life, quality of life priority, let death take its course) and expectations of end-of-life care (preferences, basic needs, good death). Discussion Life-and-death attitude and end-of-life care expectations of the elderly support the development and delivery of end-of-life care. Furthermore, the individual-family-hospital linkage discussion channel needs to be further explored.

scholarly journals Compassion in healthcare – lessons from a qualitative study of the end of life care of people with dementia

2013 ◽  
Vol 106 (12) ◽  
pp. 492-497 ◽  
Author(s):  
Jacqueline Crowther ◽  
Kenneth CM Wilson ◽  
Siobhan Horton ◽  
Mari Lloyd-Williams
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
People With Dementia

scholarly journals Family caregivers’ conceptualisation of quality end-of-life care for people with dementia: A qualitative study

2016 ◽  
Vol 31 (8) ◽  
pp. 726-733 ◽  
Author(s):  
Nathan Davies ◽  
Greta Rait ◽  
Laura Maio ◽  
Steve Iliffe
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Psychological Impact ◽  
Third Sector ◽  
Life Care ◽  
People With Dementia ◽  
Diagnosis Of Dementia ◽  
Bereaved Family

Background: People with dementia have been described as the ‘disadvantaged dying’ with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers’ perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia. Aim: This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia. Design: Qualitative study using in-depth interviews and analysed using thematic analysis. Setting/participants: Purposive sampling from a third sector organisation’s caregiver network was used to recruit 47 caregivers in England (2012–2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers. Results: Three over-arching themes were derived from the interviewees’ discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness. Conclusion: End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.

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