scholarly journals 214 - End-of-life decision-making capacity in older people with serious mental illness

2021 ◽  
Vol 33 (S1) ◽  
pp. 15-16
Author(s):  
Carla Kotzé ◽  
Louw Roos ◽  
René Ehlers

ABSTRACTObjectives:The study’s main aim was to assess the end-of-life decision-making capacity and health-related values of older people with serious mental illness.Design, Setting, and Participants:This was a cross-sectional, observational study, done at Weskoppies Psychiatric Hospital, Gauteng Province, South Africa that included 100 adults older than 60 years of age and diagnosed with serious mental illness.Measurements:Socio-demographic, diagnostic, and treatment data were collected before administration of the Mini- Cog and a semi-structured clinical assessment of end-of-life decision-making capacity. Finally, the standardized interview, Assessment of Capacity to Consent to Treatment, was administered. This standardised instrument uses a hypothetical vignette to assess decision-making capacity and explores healthcare-related values.Results:According to the semi-structured decision-making capacity assessment, 65% of participants had decision-making capacity for end-of-life decisions. The Assessment of Capacity to Consent to Treatment scores were significant (p<0.001) when compared to decision-making capacity. Significant correlations with impaired decision-making capacity included: lower scores on the Mini-Cog (p<0.001); a duration of serious mental illness of 30-39 years (p=0025); having a diagnosis of schizophrenia spectrum disorders (p=0.0007); and being admitted involuntarily (p<0.0001).Conclusions:Two thirds of older people with serious mental illness had decision-making capacity and were able to engage in end-of-life care discussions. Healthcare providers have a duty to initiate advance care discussions, optimize decision-making capacity, and protect autonomous decision-making. Chronological age or diagnostic categories should never be used as reasons for discrimination, and older people with serious mental illness should receive end-of-life care in keeping with their preferences and values.

2021 ◽  
Vol 12 ◽  
Author(s):  
Carla Kotzé ◽  
Johannes Lodewikus Roos ◽  
René Ehlers

Background: The study's main aim was to assess the end-of-life decision-making capacity and health-related values of older people with serious mental illness.Methods: A cross-sectional, observational study, was done at Weskoppies Psychiatric Hospital, Gauteng Province, South Africa that included 100 adults older than 60 years of age and diagnosed with serious mental illness. The Mini-Cog and a semi-structured clinical assessment of end-of-life decision-making capacity was done before a standardized interview, Assessment of Capacity to Consent to Treatment, was administered. This standardized instrument uses a hypothetical vignette to assess decision-making capacity and explores healthcare-related values.Results: The Assessment of Capacity to Consent to Treatment scores correlated (p &lt; 0.001) with the outcomes of the semi-structured decision-making capacity evaluation. Significant correlations with impaired decision-making capacity included: lower scores on the Mini-Cog (p &lt; 0.001); a duration of serious mental illness of 30–39 years (p = 0025); having a diagnosis of schizophrenia spectrum disorders (p = 0.0007); and being admitted involuntarily (p &lt; 0.0001). A main finding was that 65% of participants had decision-making capacity for end-of-life decisions, were able to express their values and engage in advance care discussions.Discussion and Conclusion: Healthcare providers have a duty to initiate advance care discussions, optimize decision-making capacity, and protect autonomous decision-making. Many older patients with serious mental illness can engage in end-of-life discussions and can make autonomous decisions about preferred end-of-life care. Chronological age or diagnostic categories should never be used as reasons for discrimination, and older people with serious mental illness should receive end-of-life care in keeping with their preferences and values.


2020 ◽  
Vol 32 (S1) ◽  
pp. 179-179
Author(s):  
C Kotzé ◽  
JL Roos

Medical practitioners are confronted on a daily basis with decisions about patients’ capacity to consent to interventions. To address some of the pertinent issues with these assessments, the end -of-life decision-making capacity in a 72-year old lady with treatment resistant schizophrenia and terminal cancer will be discussed.In the case discussed there were differences in opinion about the patients decision-making capacity. In light of this, the role of the treating clinician and importance of health-related values in capacity assessment are highlighted. It is recommended that the focus of these assessments can rather be on practical outcomes, especially when capacity issues arise. This implies that the decision-making capacity of the patient is only practically important when the treatment team is willing to proceed against the patient’s wishes. This shifts the focus from a potentially difficult assessment to the simpler question of whether the patient’s capacity will change the treatment approach.Compared to the general population, people with serious mental illness have higher rates of physical illness and die at a younger age, but they do not commonly access palliative care services and are rarely engaged in end-of-life care discussions. Older people with serious mental illness can engage in advance care planning. Conversations about end -of-life care can occur without fear that a person’s psychiatric symptoms or related vulnerabilities will undermine the process. Clinicians are also advised to attend to any possible underlying issues, instead of focusing strictly on capacity. Routine documentation of end-of-life care preferences can support future decision making for family and clinicians at a time when patients are unable to express their decisions.More research about palliative care and advance care planning for people with serious mental illness is needed. This is even more urgent in light of the COVID-2019 pandemic, as there are potential needs for rationing of health care in the context of scarce resources. Health services should consider recommendations that advanced care planning should be routinely implemented. These recommendations should not only focus on the general population and should include patients with serious mental illness.


2002 ◽  
Vol 46 (2) ◽  
pp. 284-298 ◽  
Author(s):  
WILLIAM E. HALEY ◽  
REBECCA S. ALLEN ◽  
SANDRA REYNOLDS ◽  
HONGBIN CHEN ◽  
ALLISON BURTON ◽  
...  

2010 ◽  
Vol 33 (4) ◽  
pp. 240 ◽  
Author(s):  
Karen Choong ◽  
Cynthia Cupido ◽  
Erin Nelson ◽  
Donald M Arnold ◽  
Karen Burns ◽  
...  

Background: End-of-life decisions regarding the administration, withdrawal or withholding of life-sustaining therapy in the critical care setting can be challenging. Disagreements between health care providers and family members occur, especially when families believe strongly in preserving life, and physicians are resistant to providing medically “futile” care. Such disagreements can cause tension and moral distress among families and clinicians. Purpose: To outline the roles and responsibilities of physicians, substitute decision makers, and the judicial system when decisions must be made on behalf of incapable persons, and to provide a framework for conflict resolution during end-of-life decision-making for physicians practicing in Canada. Source: We used a case-based example to illustrate our objectives. We employed a comprehensive approach to understanding end-of-life decision making that included: 1) a search for relevant literature; 2) a review of provincial college policies; 3) a review of provincial legislation on consent; 4) a consultation with two bioethicists and 5) a consultation with two legal experts in health law. Principal Findings: In Canada, laws about substitute decision-making for health care are primarily provincial or territorial. Thus, laws and policies from professional regulatory bodies on end-of-life care vary across the country. We tabulated the provincial college policies on end-of-life care and the provincial legislation on consent and advance directives, and constructed a 10-step approach to conflict resolution. Conclusion: Knowledge of underlying ethical principles, understanding of professional duties, and adoption of a process for mediation and conflict resolution are essential to ensuring that physicians and institutions act responsibly in maintaining a patients’ best interests in the context of family-centred care.


2001 ◽  
Vol 10 (4) ◽  
pp. 230-237 ◽  
Author(s):  
PA Miller ◽  
S Forbes ◽  
DK Boyle

Results from several research studies combined with increasing public tensions surrounding physician-assisted suicide have fueled a growing awareness of the inadequacies of end-of-life care. Investigators also suggest that intensive care unit nurses have a limited role in end-of-life decision making and care planning. This article explores cultural issues influencing end-of-life care in intensive care units, explores factors surrounding the limited involvement of critical care nurses in end-of-life decision making and care planning, and offers recommendations for changing nursing practice. Because improving end-of-life care will require cultural changes, an understanding of the cultural issues involved is needed. Recommendations for changing nursing practice include a model of end-of-life care that incorporates the goals of both cure and comfort care, as well as a shared decision-making process. Nurses are essential to improving end-of-life care in today's intensive care units.


Author(s):  
Julia I Bandini

End-of-life decision-making is an important area of research, and few sociological studies have considered family grief in light of end-of-life decision-making in the hospital. Drawing on in-depth interviews with family members in the intensive care unit (ICU) during an end-of-life hospitalization and into their bereavement period up to six months after the death of the patient, this article examines bereaved family members’ experiences of grief by examining three aspects from the end-of-life hospitalization and decision-making in the ICU that informed their subsequent bereavement experiences. First, this article explores how the process of advance care planning (ACP) shaped family experiences of grief, by demonstrating that even prior informal conversations around end-of-life care outside of having an advance directive in the hospital was beneficial for family members both during the hospitalization and afterwards in bereavement. Second, clinicians’ compassionate caring for both patients and families through the “little things” or small gestures were important to families during the end-of-life hospitalization and afterwards in bereavement. Third, the transition time in the hospital before the patient’s death facilitated family experiences of grief by providing a sense of support and meaning in bereavement. The findings have implications for clinicians who provide end-of-life care by highlighting salient aspects from the hospitalization that may shape family grief following the patient’s death. Most importantly, the notion that ACP as a social process may be a “gift” to families during end-of-life decision-making and carry through into bereavement can serve as a motivator to engage patients in ACP.


2015 ◽  
Vol 24 (3) ◽  
pp. 232-240 ◽  
Author(s):  
Natalie Pattison ◽  
Geraldine O’Gara ◽  
Timothy Wigmore

Background Little research has examined the involvement of critical care outreach teams in end-of-life decision making. Objective To establish how much time critical care outreach teams spend with patients who are subsequently subject to limitation of medical treatment and end-of-life decisions and how much influence the teams have on those decisions. Methods A single-center retrospective review, with qualitative analysis, in a large cancer center. Data from all patients referred emergently for critical care outreach from October 2010 to October 2011 who later had limitation of medical treatment or end-of-life care were retrieved. Findings were analyzed by using SPSS 19 and qualitative free-text analysis. Results Of 890 patients referred for critical care outreach from October 2010 to October 2011, 377 were referred as an emergency; 108 of those had limitation of medical treatment and were included in the review. Thirty-five patients (32.4%) died while hospitalized. As a result of outreach intervention and a decision to limit medical treatment, 56 (51.9%) of the 108 patients received a formal end-of-life care plan (including care pathways, referral to palliative care team, hospice). About a fifth (21.5%) of clinical contact time is being spent on patients who subsequently are subject to limitation of medical treatment. Qualitative document analysis showed 5 emerging themes: difficulty of discussions about not attempting cardiopulmonary resuscitation, complexities in coordinating multiple teams, delays in referral and decision making, decision reversals and opaque decision making, and technical versus ethical imperatives. Conclusion A considerable amount of time is being spent on these emergency referrals, and decisions to limit medical treatment are common. The appropriateness of escalation of levels of care is often not questioned until patients become critically or acutely unwell, and outreach teams subsequently intervene.


2000 ◽  
Vol 16 (1_suppl) ◽  
pp. S31-S39 ◽  
Author(s):  
Daren K. Heyland ◽  
Joan Tranmer ◽  
Deb Feldman-Stewart

Recent studies of patient/family satisfaction with end-of-life care suggest that improvements in communication and decision making are likely to have the greatest impact on improving the quality of end-of-life care. The apparent failure of recent studies specifically designed to improve decision making strongly suggest that there are powerful determinants of the decision making process that are not completely understood. In this paper, we present an organizing framework that describes the decision making process and breaks it into three analytic steps: information exchange, deliberation, and making the decision. In addition, we report the results of a preliminary study of end-of-life decision making that incorporates aspects of this organizing framework. Thirty-seven seriously ill hospitalized patients were interviewed. The majority wanted to share decisional responsibility with physicians. We demonstrated the feasibility of measuring certain aspects of the decision making process in such patients. By providing and using a framework related to end-of-life decision making, we hope to better understand the complex interaction and processes between dying patients, caregivers, and physicians.


2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Hille Voss ◽  
April Loxton ◽  
Julie Anderson ◽  
Joanne Watson

Abstract Background Due to developments in health and social care, people with profound intellectual and multiple disability (PIMD) are living longer than ever before, meaning they are increasingly experiencing life-threatening health conditions requiring palliative care. Little is known about providing end-of-life care for people with PIMD. The aim of this study was to explore health practitioners’ perspectives and practices relating to end-of-life decision-making and planning for people with PIMD. Methods Seven in-depth semi-structured interviews were conducted with health practitioners employed in a range of hospital and community services throughout Melbourne, Australia. Questions were designed to gather information about their experience, perceptions, and attitudes relating to people with PIMD during and at the end of their life. Each interview, ranging from 40 to 60 min in length, was audio recorded and transcribed. Inductive thematic analysis was used to analyse the data. Results Four main themes emerged: limited participation, bias, dignity, and quality of death. Health practitioners indicated that people with PIMD are frequently excluded from participating in decision-making related to end-of-life care. Participants discussed reasons for this exclusion including challenges with communication and cognition. Participants reported a need for additional support and guidance in providing care for people with PIMD at the end of life. Professional and family bias played a role in end-of-life decision-making for people with PIMD. Participants reported a disproportional focus by palliative care practitioners on physical as opposed to emotional and spiritual well-being for patients with PIMD at the end of life. Finally, participants reported that people with PIMD generally did not die in specialised palliative care settings, but in segregated supported living environments. Conclusions Due to negative perceptions of a person with PIMD’s decision-making capacity, people with PIMD are likely to be assessed as unable to express choice and preference regarding end-of-life care and are offered limited opportunity to be involved in their own end-of-life care. This research provides guidance for the development of training and professional development relating to people with PIMD at the end of life. It is hoped that this will increase the accessibility of end-of-life services for people with PIMD, ensuring that a respectful and dignified death can be a reality for all humankind regardless of disability.


Sign in / Sign up

Export Citation Format

Share Document