scholarly journals What’s suffering got to do with it? A qualitative study of suffering in the context of Medical Assistance in Dying (MAID)

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Barbara Pesut ◽  
David Kenneth Wright ◽  
Sally Thorne ◽  
Margaret I. Hall ◽  
Gloria Puurveen ◽  
...  
Keyword(s):  
Nurse Practitioners ◽  
Healthcare Providers ◽  
Clinical Encounter ◽  
Assessment Process ◽  
Assisted Death ◽  
Medical Assistance In Dying ◽  
Empirical Inquiry ◽  
Practice Knowledge ◽  
Right Reason ◽  
The Right

Abstract Background Intolerable suffering is a common eligibility requirement for persons requesting assisted death, and although suffering has received philosophic attention for millennia, only recently has it been the focus of empirical inquiry. Robust theoretical knowledge about suffering is critically important as modern healthcare provides persons with different options at end-of-life to relieve suffering. The purpose of this paper is to present findings specific to the understanding and application of suffering in the context of MAID from nurses’ perspectives. Methods A longitudinal qualitative descriptive study using semi-structured telephone interviews. Inductive analysis was used to construct a thematic account. The study received ethical approval and all participants provided written consent. Results Fifty nurses and nurse practitioners from across Canada were interviewed. Participants described the suffering of dying and provided insights into the difficulties of treating existential suffering and the iatrogenic suffering patients experienced from long contact with the healthcare system. They shared perceptions of the suffering that leads to a request for MAID that included the unknown of dying, a desire for predictability, and the loss of dignity. Eliciting the suffering story was an essential part of nursing practice. Knowledge of the story allowed participants to find the balance between believing that suffering is whatever the persons says it is, while making sure that the MAID procedure was for the right person, for the right reason, at the right time. Participants perceived that the MAID process itself caused suffering that resulted from the complexity of decision-making, the chances of being deemed ineligible, and the heighted work of the tasks of dying. Conclusions Healthcare providers involved in MAID must be critically reflective about the suffering histories they bring to the clinical encounter, particularly iatrogenic suffering. Further, eliciting the suffering stories of persons requesting MAID requires a high degree of skill; those involved in the assessment process must have the time and competency to do this important role well. The nature of suffering that patients and family encounter as they enter the contemplation, assessment, and provision of MAID requires further research to understand it better and develop best practices.

Improving end-of-life conversations in the post-MAiD era

2021 ◽  
Vol 2 (2) ◽  
Author(s):  
Kristie Serota ◽  
Anita Ho
Keyword(s):  
End Of Life ◽  
Hospice Care ◽  
Quality Care ◽  
Healthcare Providers ◽  
Care Providers ◽  
Institutional Policies ◽  
Allied Health Professionals ◽  
Assisted Death ◽  
Medical Assistance In Dying ◽  
Organizational Issues

Legalizing medical assistance in dying (MAiD) has transformed how palliative and hospice care providers (PHCPs) engage in end of life conversations with patients and their loved ones. We do not currently know how PHCPs in the Toronto area have experienced this tremendous shift, and what challenges they have faced in transforming their practice to accommodate MAiD conversations. We must understand the unique challenges faced by PHCPs so that we can improve the education, resources, and supports available to these essential healthcare providers. We also must ensure that Canadians receive the highest quality care at the end of life, whether or not they choose to pursue a medically assisted death. To examine these unique challenges, I interviewed 22 PHCPs to document their experiences of engaging in end-of-life conversations in the post-MAiD era. Participants included physicians, nurses, social workers, and other allied health professionals employed in faith-based and secular institutions. Their personal beliefs about MAiD varied widely; some identified as conscientious objectors, while others actively engaged in MAiD assessment and provision. Initial thematic analysis revealed that challenges include translating the federal legislation into medical practice; navigating inefficient institutional policies and role ambiguity; developing conversation techniques to share MAiD information with patients and families in a balanced way that is informative yet uncoercive; and, navigating the ethical and organizational issues that arise when patients with declining capacity pursue MAiD. Finally, PHCPs shared personal experiences of burnout, emotional weight, and stigma. Understanding how these factors impact the work and lives of PHCPs allows us to develop targeted strategies to improve the institutional policies surrounding MAiD conversations, referrals, and procedures, as well as decrease the negative personal and emotional consequences of engaging in end-of-life conversations in the post-MAiD era.

Hospice Palliative Care (HPC) and Medical Assistance in Dying (MAiD): Results From a Canada-Wide Survey

2019 ◽  
pp. 082585971986554 ◽  
Author(s):  
Rebecca Antonacci ◽  
Sharon Baxter ◽  
J. David Henderson ◽  
Raza M. Mirza ◽  
Christopher A. Klinger
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Nurse Practitioners ◽  
Scope Of Practice ◽  
Full Potential ◽  
Care Organization ◽  
Medical Assistance ◽  
Assisted Death ◽  
Medical Assistance In Dying ◽  
Hospice Palliative Care

Background: With the legalization of medical assistance in dying (MAiD) in Canada, physicians and nurse practitioners now have another option within their scope of practice to consider alongside hospice palliative care (HPC) to support the patient and family regardless of their choice toward natural or medically assisted death. To elucidate insights and experiences with MAiD since its inception and to help adjust to this new end-of-life care environment, the membership of the Canadian Hospice Palliative Care Association (CHPCA) was surveyed. Methods: The CHPCA developed and distributed a 16-item survey to its membership in June 2017, one year following the legalization of MAiD. Data were arranged in Microsoft® Excel and open-ended responses were analyzed thematically using NVivo 12 software. Results: From across Canada, 452 responses were received (response rate: 15%). The majority of individuals worked as nurses (n = 161, 33%), administrators (n = 79, 16%), volunteers (n = 76, 16%) and physicians (n = 56, 11%). Almost 75% (n = 320) of all respondents indicated that they had experienced a patient in their program who had requested MAiD. Participants expressed dissatisfaction with the current psychological and professional support being provided by their health care organization and Ministry of Health - during and after the MAiD procedure. Conclusion: The new complexities of MAiD present unique challenges to those working in the health-care field. There needs to be an increased focus on educating/training providers as without proper support, health-care workers will be unable to perform to their full potential/scope of practice while also providing patients with holistic and accessible care.

scholarly journals Refusing care as a legal pathway to medical assistance in dying

2019 ◽  
Vol 2 (2) ◽  
pp. 73-82
Author(s):  
Jocelyn Downie ◽  
Matthew J Bowes
Keyword(s):  
Spinal Stenosis ◽  
Healthcare Providers ◽  
Natural Death ◽  
Medical Assistance ◽  
Competent Patient ◽  
Medical Assistance In Dying ◽  
Ethical Implications ◽  
Brain Stroke ◽  
The Right ◽  
Right To Refuse

Can a competent individual refuse care in order to make their natural death reasonably foreseeable in order to qualify for medical assistance in dying (MAiD)? Consider a competent patient with left-side paralysis following a right brain stroke who is not expected to die for many years; normally his cause of death would not be predictable. However, he refuses regular turning, so his physician can predict that pressure ulcers will develop, leading to infection for which he will refuse treatment and consequently die. Is he now eligible for MAiD? Consider a competent patient with spinal stenosis (a non-fatal condition) who refuses food (but not liquids in order not to lose capacity from dehydration). Consequently, her physician can predict death from starvation. Is she now eligible for MAiD? Answering these questions requires that we answer three sub-questions: 1) do competent patients have the right to refuse care?; 2) do healthcare providers have a duty to respect such refusals?; and 3) are deaths resulting from refusals of care natural for the purposes of determining whether a patient is eligible for MAiD? If a competent patient has the right to refuse some particular care, and healthcare providers have a duty to respect that refusal, and if the death that would result from the refusal of that care is natural, then that refusal of care is a legal pathway to MAiD. However, if the competent patient does not have the right to refuse some particular care, or if healthcare providers do not have a duty to respect that refusal, or if the death that would result from the refusal of that care is not natural, then that refusal of care is not a legal pathway to MAiD. In this paper, we explore this complex legal terrain with the most profound of ethical implications – access to MAiD.

Patient Safety and Quality Improvement (DRAFT)

2018 ◽  
Author(s):  
Lisa M. Painter ◽  
Cheryl Janov ◽  
Richard L. Simmons
Keyword(s):  
Patient Safety ◽  
Healthcare Providers ◽  
Rapid Response Team ◽  
Rapid Response ◽  
Governmental Organizations ◽  
Non Governmental Organizations ◽  
Quality Movement ◽  
Second Victim ◽  
Right Reason ◽  
The Right

Patients expect safe accountable care from their healthcare providers. Quality is doing the right thing, in the right way, at the right time, for the right reason, and to the right person. A number of governmental and non-governmental organizations have emerged to set standards for quality and safety. Rapid response systems (RRSs) are an important part of safety structure and this chapter aims to provide a basic understanding of the patient safety and quality movement, medical error and adverse events, and the role of the rapid response team (RRT) in identifying and reporting threats to patient safety. It offers a brief introduction of just culture, disclosure, and second victim.

The Impact of Internal Work Environment on the Retention of Healthcare Providers at Turaif General Hospital

2019 ◽  
Vol 10 (12) ◽  
pp. 1183-1199
Author(s):  
Mohammed Alrouili ◽  
Keyword(s):  
Work Environment ◽  
General Hospital ◽  
Professional Growth ◽  
Healthcare Providers ◽  
Entire Study ◽  
Internal Work ◽  
Research Findings ◽  
Study Population ◽  
The Right ◽  
The Impact

This study attempted to identify the impact of internal work environment on the retention of healthcare providers at Turaif General Hospital in the Kingdom of Saudi Arabia. In particular, the study aimed to identify the dimensions of work circumstances, compensation, and relationship with colleagues, professional growth, and the level of healthcare providers’ retention. In order to achieve the study goals, the researcher used the descriptive analytical approach. The researcher used the questionnaire as the study tool. The study population comprised all the healthcare providers at Turaif General Hospital. Questionnaires were distributed to the entire study sample that consisted of 220 individuals. The number of questionnaires valid for study was 183 questionnaires. The research findings were as follows: the participants’ estimate of the work circumstances dimension was high (3.64), the participants’ estimate of the compensation dimension was moderate (3.32), the participants’ estimate of the relationship with colleagues dimension was high (3.62), the participants’ estimate of the professional growth dimension was weak (2.39), and the participants’ estimate of healthcare providers’ retention level was intermediate (2.75). Accordingly, the researcher’s major recommendations are: the need to create the right atmosphere for personnel in hospitals, the interest of the hospital to provide the appropriate conditions for the staff in terms of the physical and moral aspects for building the work adjustment in the staff, and conducting training courses and educational lectures for personnel in hospitals on how to cope with the work pressures.

scholarly journals P040 An unusual case of giant cell arteritis

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_1) ◽  
Author(s):  
Jessica Ellis ◽  
Keziah Austin ◽  
Sarah Emerson
Keyword(s):  
Inflammatory Markers ◽  
Illicit Drugs ◽  
Unusual Case ◽  
Temporal Arteritis ◽  
White Cell Count ◽  
Healthcare Providers ◽  
Temporal Artery ◽  
Low Grade ◽  
Temporal Artery Biopsy ◽  
The Right

Abstract Background/Aims  A 49-year-old female of Nepalese heritage was referred with right-sided headache, scalp tenderness, and a painful swelling overlying the right temple. She denied any visual or claudicant symptoms but felt systemically unwell with a fever. There were no symptoms suggestive of an inflammatory arthritis, underlying connective tissue disease or vasculitis. She was normally fit and well with no past medical history. She did not take any regular medications and denied using over the counter or illicit drugs or recent travel. On review she had a low grade fever. There was a large tender, erythematous swelling overlying the right temple. Bilaterally the temporal arteries were palpable and pulsatile. Peripheral pulses were normal with no bruits. There was no evidence of shingles (HSV) or local infection. Full systemic examination revealed no other abnormalities. Laboratory tests showed: PV 2.56, CRP 101, total white cell count 14.38 (eosinophils 0.4), albumin 33, Hb 115. Urine dip was normal. Renal function, liver function and immunoglobulins were normal. ANCA was negative. Hypoechogenicity surrounding the right frontal branch of the right temporal artery was seen on ultrasound. There were no discrete masses suggestive of cysts, abscess or tumours. Temporal artery biopsy confirmed the presence of vasculitis; histology demonstrated transmural lymphohistiocytic inflammation, disruption of the elastic lamina and intimal proliferation. Prednisolone was started at 40mg daily. Four weeks after initially presenting she was asymptomatic and her inflammatory markers had normalised. Methods  The case is discussed below. Results  Temporal arteritis, or GCA, is primarily a disease of older adults; with age 50 often used as an inclusion criteria, and is more common in Caucasian populations. Limited reports exist of GCA in younger cohorts, but these are rare. An important differential in younger patients, such as ours, is juvenile temporal arteritis. This rare localised vasculitis affects almost exclusively the temporal artery. It is typically a disease of young males, who present with non-tender temporal swelling. Systemic symptoms are unusual and inflammatory markers are normal. Clinical or laboratory evidence of organ involvement, peripheral eosinophilia or fibrinoid necrosis on histology should prompt consideration of an AAV or PAN. Incidence of GCA increases in correlation with Northern latitude, with highest rates reported in Scandinavian and North American populations. GCA is rare in Asian populations. Higher diagnostic rates in countries where physicians have increased awareness of GCA proposed as an explanation for this difference; however differences in incidence are still observed between Asian and Caucasian populations presenting to the same healthcare providers. Conclusion  GCA is an uncommon diagnosis in younger and non-Caucasian patients. Thorough investigation through ultrasound and biopsy helped increase our diagnostic confidence in this unusual case. Rheumatologists must be alert to atypical presentations in order to deliver prompt and potentially sight-saving treatment. Disclosure  J. Ellis: None. K. Austin: None. S. Emerson: None.

scholarly journals Best Practices in Specialized Amyloidosis Centers in the United States: A Survey of Cardiologists, Nurses, Patients, and Patient Advocates

2021 ◽  
Vol 15 ◽  
pp. 117954682110152
Author(s):  
Jose Nativi-Nicolau ◽  
Nitasha Sarswat ◽  
Johana Fajardo ◽  
Muriel Finkel ◽  
Younos Abdulsattar ◽  
...  
Keyword(s):  
Best Practices ◽  
Patient Care ◽  
Nurse Practitioners ◽  
Healthcare Providers ◽  
Multidisciplinary Care ◽  
The United States ◽  
Comprehensive Care ◽  
Patient Support ◽  
Patient Support Group ◽  
Patient Advocates

Background: Because transthyretin amyloid cardiomyopathy (ATTR-CM) poses unique diagnostic and therapeutic challenges, referral of patients with known or suspected disease to specialized amyloidosis centers is recommended. These centers have developed strategic practices to provide multidisciplinary comprehensive care, but their best practices have not yet been well studied as a group. Methods: A qualitative survey was conducted by telephone/email from October 2019 to February 2020 among eligible healthcare providers with experience in the management of ATTR-CM at US amyloidosis centers, patients with ATTR-CM treated at amyloidosis centers, and patient advocates from amyloidosis patient support groups. Results: Fifteen cardiologists and 9 nurse practitioners/nurses from 15 selected amyloidosis centers participated in the survey, with 16 patients and 4 patient advocates. Among participating healthcare providers, the most frequently cited center best practices were diagnostic capability, multidisciplinary care, and time spent on patient care; the greatest challenges involved coordination of patient care. Patients described the “ideal” amyloidosis program as one that provides physicians with expertise in ATTR-CM, sufficient time with patients, comprehensive patient care, and opportunities to participate in research/clinical trials. The majority of centers host patient support group meetings, and patient advocacy groups provide support for centers with physician/patient education and research. Conclusions: Amyloidosis centers offer comprehensive care based on staff expertise in ATTR-CM, a multidisciplinary approach, advanced diagnostics, and time dedicated to patient care and education. Raising awareness of amyloidosis centers’ best practices among healthcare providers can reinforce the benefits of early referral and comprehensive care for patients with ATTR-CM.

scholarly journals “What Is Right for Me, Is Not Necessarily Right for You”: The Endogenous Factors Influencing Nonparticipation in Medical Assistance in Dying

2021 ◽  
pp. 104973232110088
Author(s):  
Janine Brown ◽  
Donna Goodridge ◽  
Lilian Thorpe ◽  
Alexander Crizzle
Keyword(s):  
Health Care Providers ◽  
Nurse Practitioners ◽  
Emotional Labor ◽  
Emotional Impact ◽  
Care Providers ◽  
Medical Assistance ◽  
Endogenous Factors ◽  
Medical Assistance In Dying ◽  
Professional Experiences ◽  
The Social

Access to medical assistance in dying (MAID) is influenced by legislation, health care providers (HCPs), the number of patient requests, and the patients’ locations. This research explored the factors that influenced HCPs’ nonparticipation in formal MAID processes and their needs to support this emerging practice area. Using an interpretive description methodology, we interviewed 17 physicians and 18 nurse practitioners who identified as non-participators in formal MAID processes. Nonparticipation was influenced by their (a) previous personal and professional experiences, (b) comfort with death, (c) conceptualization of duty, (d) preferred end-of-life care approaches, (e) faith or spirituality beliefs, (f) self-accountability, (g) consideration of emotional labor, and (h) future emotional impact. They identified a need for clear care pathways and safe passage. Two separate yet overlapping concepts were identified, conscientious objection to and nonparticipation in MAID, and we discussed options to support the social contract of care between HCPs and patients.

scholarly journals Facing Death: Attitudes toward Physician-Assisted End of Life among Physicians Working at a Tertiary-Care-Hospital in Israel

2021 ◽  
Vol 18 (12) ◽  
pp. 6396
Author(s):  
Keren Dopelt ◽  
Dganit Cohen ◽  
Einat Amar-Krispel ◽  
Nadav Davidovitch ◽  
Paul Barach
Keyword(s):  
End Of Life ◽  
Tertiary Care Hospital ◽  
Human Life ◽  
Tertiary Care ◽  
Terminally Ill ◽  
Background Information ◽  
Care Hospital ◽  
Medical Assistance In Dying ◽  
Terminally Ill Patients ◽  
The Right

The demand for medical assistance in dying remains high and controversial with a large knowledge gap to support optimal patient care. The study aimed to explore physicians’ attitudes regarding euthanasia and examine the factors that related to these attitudes. We surveyed 135 physicians working at a tertiary-care hospital in Israel. The questionnaire was comprised of demographic and background information, DNR procedure information, encounters with terminally ill patients, familiarity with the law regarding end-of-life questions, and Attitudes toward Euthanasia. About 61% agreed that a person has the right to decide whether to expedite their own death, 54% agreed that euthanasia should be allowed, while 29% thought that physicians should preserve a patients’ life even when they expressed the wish to die. A negative statistically significant relationship was found between the level of religiosity and attitudes toward euthanasia. The physicians’ attitudes towards euthanasia are quite positive when compared to other countries. The data shows a conflict of values: the sacredness of human life versus the desire to alleviate patients’ suffering. The Coronavirus-19 outbreak reinforces the importance of supporting physicians’ efforts to provide ethical and empathic communication for terminally ill patients. Future studies should aim to improve our understanding and treatment of the specific types of suffering that lead to end-of-life requests.

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