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.

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.

Current Practices and Challenges of Medical Services on Health Care System of Mandalay General Hospital

2019 ◽  
Vol 31 (2) ◽  
pp. 131
Keyword(s):  
Health Care ◽  
General Hospital ◽  
Health Care Providers ◽  
Quality Care ◽  
Healthcare Providers ◽  
Medical Services ◽  
Tertiary Level ◽  
Care Providers ◽  
Level Hospital ◽  
Care System

In Myanmar, the main challenge to provide quality healthcare by Universal Health Care approach is documented as low health services coverage with substantial wealth-based inequality. To achieve the effective health care system, strong medical care system is essential. Understanding on challenges and needs in provision of medical services among patients and health care providers is critical to provide quality care with desirable outcomes. The aim of the study was to explore the patients’ and health care providers’ perceptions on the challenges in provision of medical services at the Mandalay General Hospital. This was a qualitative study conducted at the tertiary level hospital (Mandalay General Hospital). The data was collected by using focus group discussions and in-depth interviews with hospitalized patients or attendants, healthcare providers such as medical doctors, nurses, laboratory scientists and hospital administrators in March 2017. The qualitative data was analyzed using themes by themes matrix analysis. Most patients were satisfied with the care provided by the doctors because they believed that they received quality care. However, some patients complained about long waiting time for elective operation, congested conditions in the ward, burden for investigations outside the hospital for urgent needs and impolite manners of general workers. Healthcare providers reported that they had heavy workload due to limited human and financial resources in the hospital, poor compliances with hospital rules and regulation among patients and attendants, and inefficient referral practices from other health facilities. Other challenges experienced by healthcare providers were lack of ongoing training to improve knowledge and skills, limited health infrastructure and inadequate medicinal supplies. The findings highlighted the areas needed to be improved to provide quality health care at the tertiary level hospital. The challenges and problems encountered in this hospital can be improved by allocating adequate financial and human resources. The systematic referral system and hospital management guidelines are needed to reduce workload of health staff.

scholarly journals CAREGIVER BURDEN, BENEFIT, AND PERCEPTIONS OF END-OF-LIFE CARE QUALITY

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S668-S668
Author(s):  
Elizabeth A Luth ◽  
Teja Pristavec
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Hospice Care ◽  
Quality Care ◽  
Care Quality ◽  
National Study ◽  
Life Care ◽  
Care Needs ◽  
Caregiving Burden ◽  
High Burden

Abstract End-of-life care quality (EOLCQ) gauges our success in providing quality care to dying individuals. EOLQC measures rely on reports from bereaved family members who provide care for dying loved ones, but analyses seldom account for how caregivers’ experiences influence their EOLCQ perceptions. Caregivers frequently experience burden, which is linked to poor health outcomes and may negatively bias EOLCQ reports. Individuals may also perceive caregiving benefits that can offset deleterious burden effects, but potentially encourage overly positive EOLCQ perceptions. This paper links National Study of Caregivers (2011) and National Health and Aging Trends Study (2011-2016) data, using regression analysis and a sample of 380 EOL caregivers to examine how caregiving burden and benefits perceptions shape and moderate EOLCQ reports. Caregiving burden is unrelated to EOLCQ in adjusted models. Benefits are associated with marginally greater odds of being informed about the dying person’s condition and reporting their personal care needs were met. Burden and benefits moderate these two measures. Despite benefits, low burden caregivers report they were informed about the dying person’s condition with 90% probability. Regardless of burden, high benefits caregivers report the same with 90% probability. Low burden and benefits caregivers report met care needs with 90% probability. High burden and benefits caregivers have 90% probability of such reports. Given these reports are used in formal hospice care evaluations by CMS, additional research should explore why caregiving burden and benefit are associated with some EOLCQ measures and why individuals reporting high burden and benefits provide more positive EOLCQ appraisals.

Defining end-of-life care from perspectives of nursing ethics

2012 ◽  
Vol 19 (5) ◽  
pp. 608-618 ◽  
Author(s):  
Shigeko (Seiko) Izumi ◽  
Hiroko Nagae ◽  
Chihoko Sakurai ◽  
Emiko Imamura
Keyword(s):  
End Of Life ◽  
Health Care Providers ◽  
End Of Life Care ◽  
Hospice Care ◽  
Medical Model ◽  
Codes Of Ethics ◽  
Nursing Ethics ◽  
Life Care ◽  
Care Providers ◽  
Definition Of

Despite increasing interests and urgent needs for quality end-of-life care, there is no exact definition of what is the interval referred to as end of life or what end-of-life care is. The purpose of this article is to report our examination of terms related to end-of-life care and define end-of-life care from nursing ethics perspectives. Current terms related to end-of-life care, such as terminal care, hospice care, and palliative care, are based on a medical model and are restrictive in terms of diagnosis and prognosis. Using codes of ethics for nurses as a framework, we attempt to identify people to whom nurses are responsible to provide end-of-life care and develop a definition of end-of-life care that is more inclusive and applicable to a broader range of people who would benefit from end-of-life care by nurses and other health-care providers.

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.

scholarly journals Feasibility testing of a community dialogue approach for promoting the uptake of family planning and contraceptive services in Zambia

2020 ◽  
Author(s):  
Margarate Nzala Munakampe ◽  
Theresa Nkole ◽  
Adam Silumbwe ◽  
Joseph Mumba Zulu ◽  
Joanna Paula Cordero ◽  
...  
Keyword(s):  
Family Planning ◽  
Health Care Providers ◽  
Health Workers ◽  
Quality Care ◽  
Healthcare Providers ◽  
Care Providers ◽  
Community Members ◽  
Community Dialogue ◽  
Awareness Programs ◽  
Feasibility Testing

Abstract Background: Community dialogues have been used in participatory approaches in various health prevention and awareness programs, including family planning interventions to increase understanding and alignment of particular issues from different peoples’ perspectives. The main aim of this paper is to document the feasibility testing of a community dialogue approach, which aimed to promote dialogue between healthcare providers and community members. The feasibility testing was part of formative-phase research needed to design an intervention, with the ultimate goal of increasing the uptake of family planning and contraception. The community dialogue intervention generated discussions on key approaches to improve family planning and contraception provision and uptake.Methods: Key stages of the community dialogue were undertaken, with representation from healthcare providers and community members. Participants included frontline and managerial health care providers, community health workers, family planning and contraception users, the youth, other stakeholders from the education sector, and civil society. How the dialogue was implemented (operational feasibility) as well as the cultural feasibility of the community dialogue content was evaluated through participant observations during the dialogue, using a standardised feasibility testing tick-list, and through focus group discussions with the stakeholders who participated in the community dialogue.Results: Overall, 21 of the 30 invited participants attended the meeting- 70 per cent attendance. The approach facilitated discussions on how quality care could be achieved in family planning and contraception provision, guided by the ground rules that were agreed upon by the different stakeholders. A need for more time for the discussion was noted. Also, more balanced representation from the adolescents, other stakeholders in family planning such as the community members was noted, especially in comparison to the healthcare providers. Some participants were not comfortable with the language used. And the young people felt older participants used complicated terminologies.Conclusion: Generally, the community dialogue was well received by the community members and the healthcare providers, as was observed from the sentiments expressed by both categories. Some key considerations for refining the approach included soliciting maximum participation from otherwise marginalized groups like the youth would provide stronger representation.

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.

One Team–Patient, Family, and Health Care Providers: An Interprofessional Education Activity Providing Collaborative and Palliative Care

2017 ◽  
Vol 38 (05) ◽  
pp. 350-359 ◽  
Author(s):  
Christina Melvin ◽  
Nancy Lemieux ◽  
Kelly Melekis ◽  
Shelley Velleman ◽  
Mary Favro ◽  
...  
Keyword(s):  
Nursing Students ◽  
End Of Life ◽  
Health Care Providers ◽  
Interprofessional Education ◽  
Hospice Care ◽  
Care Providers ◽  
Interprofessional Communication ◽  
Undergraduate Nursing ◽  
Centered Care ◽  
Education Activity

AbstractThe article explains an approach to building interprofessional education (IPE) and interprofessional practice opportunities as well as content in palliative/hospice care within undergraduate and graduate curricula for six health disciplines, including speech-language pathology. Graduate students from nursing, medicine, communication sciences, and disorders, physical therapy, social work and nutrition, as well as undergraduate nursing students participated in one of four IPE training sessions using six videotaped simulation scenes portraying the progression of amyotrophic lateral sclerosis. Learning objectives included (1) engaging in effective interprofessional communication and teamwork, (2) discussing therapeutic patient/family communication, (3) employing supportive holistic care with patients and families at end of life, and (4) relating the patient's physiological assessment findings to the dying process. Students discussed the role of the interprofessional team in end-of-life care and were coached on ways to apply interprofessional communication, a key interprofessional education competency, using patient- and family-centered care principles. Results revealed strong positive agreement among the disciplines regarding the value of the learning opportunities provided during this IPE simulation activity.

scholarly journals Demographics matter: the potentially disproportionate effect of COVID-19 on hospital ratings

2021 ◽  
Vol 33 (1) ◽  
Author(s):  
Ariel R Belasen ◽  
Marlon R Tracey ◽  
Alan T Belasen
Keyword(s):  
Quality Care ◽  
Healthcare Providers ◽  
Patient Experiences ◽  
Care Providers ◽  
Exogenous Shocks ◽  
The Usa ◽  
Hospital Consumer Assessment ◽  
Group A ◽  
Consumer Assessment ◽  
Hospital Compare

Abstract Objective To identify how features of the community in which a hospital serves differentially relate to its patients' experiences based on the quality of that hospital. Design A Finite Mixture Model (FMM) is used to uncover a mix of two latent groups of hospitals that differ in quality. In the FMM, a multinomial logistic equation relates hospital-level factors to the odds of being in either group. A multiple linear regression relates the characteristics of communities served by hospitals to the patients' expected ratings of their experiences at hospitals in each group. Thus, this association potentially varies with hospital quality. The analysis was conducted via Stata. Setting Hospital ratings are measured by Hospital Compare using the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey, a patient satisfaction survey required by the Centers for Medicare and Medicaid Services for hospitals in the USA. Participants 2,816 Medicare-certified acute care hospitals across all US states. Intervention None. Main Outcome Measure Differences in the marginal impacts of key community demographics on patient experiences between the two groups of hospitals. Results We provide evidence that low-rated hospitals have much more variability in patient experience ratings than high-rated ones. Moreover, the experiences at low-rated hospitals are more sensitive to county demographic factors, which means exogenous shocks, like coronavirus disease-2019 (COVID-19), will likely affect these hospitals differently, as such shocks are known to disproportionately affect their communities. Conclusions Our results imply that low-rated hospitals with more variability in their HCAHPS responses are more likely to face adverse patient experiences due to COVID-19 than high-rated hospitals. Pandemics like COVID-19 create conditions that intensify the already high demands placed on hospitals and care providers and make it even more challenging to deliver quality care.

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.

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