Outcomes of advance care directives after admission to a long-term care home: DNR the DNH?

Background Residents of long-term care homes (LTCH) often experience unnecessary and non-beneficial hospitalizations and interventions near the end-of-life. Advance care directives aim to ensure that end-of-life care respects resident needs and wishes. Methods In this retrospective cohort study, we used multistate models to examine the health trajectories associated with Do-Not-Resuscitate (DNR) and Do-Not-Hospitalize (DNH) directives of residents admitted to LTCH in Ontario, Alberta, and British Columbia, Canada. We adjusted for baseline frailty-related health instability. We considered three possible end states: change in health, hospitalization, or death. For measurements, we used standardized RAI-MDS 2.0 LTCH assessments linked to hospital records from 2010 to 2015. Results We report on 123,003 LTCH residents. The prevalence of DNR and DNH directives was 71 and 26% respectively. Both directives were associated with increased odds of transitioning to a state of greater health instability and death, and decreased odds of hospitalization. The odds of hospitalization in the presence of a DNH directive were lowered, but not eliminated, with odds of 0.67 (95% confidence interval 0.65–0.69), 0.63 (0.61–0.65), and 0.47 (0.43–0.52) for residents with low, moderate and high health instability, respectively. Conclusion Even though both DNR and DNH orders are associated with serious health outcomes, DNH directives were not frequently used and often overturned. We suggest that policies recommending DNH directives be re-evaluated, with greater emphasis on advance care planning that better reflects resident values and wishes.

Advance care tweeting: A mixed-methods analysis of online conversations surrounding National Healthcare Decisions Day hashtags on Twitter (Preprint)

BACKGROUND Within most Western societies, topics related to death and dying continue to be taboo, and opportunities for presence and engagement during end-of-life that could lead to a good death are avoided as a result. Several efforts have been made to help people engage in advance care planning (ACP) conversations, including completing advance care directives, so they may express their goals-of-care if they become too sick to communicate their wishes. One major effort in the United States towards encouraging such challenging discussions is the annual celebration of National Healthcare Decisions Day (NHDD). OBJECTIVE The present study explored ACP from a socio-cultural perspective, using Twitter as a communication tool. METHODS All publicly available tweets published between August 1st 2020 and July 30th 2021 (N = 9,713) were collected and analyzed using the computational, mixed-method Analysis of Topic Model Network (ANTMN) approach. RESULTS Results revealed conversations, driven primarily by laypersons (96% of tweets originated from unverified accounts) surrounded three major themes: importance and promotion, surrounding language, and finally, systemic issues. CONCLUSIONS Based on the results, we argue there is a need for awareness of what barriers people may face in engaging in ACP conversations, including systemic barriers, literacy levels, misinformation, policies, including Medicare reimbursements, and trust among health care professionals. This is incredibly important for clinicians and scholars to be aware of as we strive to re-envision ACP so that people are more comfortable engaging in ACP conversations. In terms of content of Tweets, we argue there is a chasm between the biomedical and biopsychosocial elements of ACP, including patient narratives. If used properly, Twitter conversations and NHDD hashtags could be harnessed to serve as a connecting point between organizations, physicians, patients and family members, to lay the groundwork for the trajectory towards a good death.

Failing to Plan Is Planning to Fail: Utilization of Advance Care Directives in Older Adults Living With HIV

Advance Care Planning (ACP) makes up an integral part of the care continuum, especially for those living with chronic conditions such as HIV. Little research exists to understand how intersections of race, gender, sexuality and gender identity combine to influence the choices made by older adults living with HIV regarding ACP. The Research on Older Adults with HIV (ROAH) 2 study collected data from across the US and investigated the incidence and range of ACP amongst those 50+ living with HIV. Correlational analysis indicated that being White was significantly related to having at least one directive (R=0.070, p=0.035) where being African American correlated negatively with several forms of ACP. Additionally, there were also significant relationships between being Transgender, being gay, and being a woman as to the engagement with ACP options. Further analysis explored the impact of finance, self-rated health and social support networks.

Medical decisions concerning the end of life for cancer patients in three Colombian hospitals – a survey study

Background Cancer patients’ end-of-life care may involve complex decision-making processes. Colombia has legislation regarding provision of and access to palliative care and is the only Latin American country with regulation regarding euthanasia. We describe medical end-of-life decision-making practices among cancer patients in three Colombian hospitals. Methods Cancer patients who were at the end-of-life and attended in participating hospitals were identified. When these patients deceased, their attending physician was invited to participate. Attending physicians of 261 cancer patients (out of 348 identified) accepted the invitation and answered a questionnaire regarding end-of-life decisions: a.) decisions regarding the withdrawal or withholding of potentially life-prolonging medical treatments, b.) intensifying measures to alleviate pain or other symptoms with hastening of death as a potential side effect, and c.) the administration, supply or prescription of drugs with an explicit intention to hasten death. For each question addressing the first two decision types, we asked if the decision was fully or partially made with the intention or consideration that it may hasten the patient’s death. Results Decisions to withdraw potentially life-prolonging treatment were made for 112 (43%) patients, 16 of them (14%) with an intention to hasten death. For 198 patients (76%) there had been some decision to not initiate potentially life-prolonging treatment. Twenty-three percent of patients received palliative sedation, 97% of all patients received opioids. Six patients (2%) explicitly requested to actively hasten their death, for two of them their wish was fulfilled. In another six patients, medications were used with the explicit intention to hasten death without their explicit request. In 44% (n = 114) of all cases, physicians did not know if their patient had any advance care directives, 26% (n = 38) of physicians had spoken to the patient regarding the possibility of certain treatment decisions to hasten death where this applied. Conclusions Decisions concerning the end of life were common for patients with cancer in three Colombian hospitals, including euthanasia and palliative sedation. Physicians and patients often fail to communicate about advance care directives and potentially life-shortening effects of treatment decisions. Specific end-of-life procedures, patients’ wishes, and availability of palliative care should be further investigated.

Problematizing “Planning Ahead”: A Cross-Cultural Analysis of Vietnamese Health and Community Workers’ Perspectives on Advance Care Directives

Informed by values of autonomy and self-determination, advance care planning assumes that individuals should independently take control of their future health. In this article, we draw on research conducted with Vietnamese health and community workers to problematize individualized approaches to planning ahead, reframe notions of “cultural and linguistic barriers,” and expose how homogeneous messages about care at the end of life are not readily translatable within and across diverse groups. Anthropological and feminist critiques of inclusion and exclusion are used to reorientate Anglophone framings of the individual and of cultural and linguistic differences. In this article, we suggest that it is the narrow singularity of care for the self—rather than diverse relationalities of care—that should be overcome if aging and end-of-life care policy and practice is to be broadened and made relevant to migrant and non-English-speaking groups.

Advance care planning

Advance care planning (ACP) enables individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and healthcare providers, and to record and review these preferences if appropriate. ACP interventions have potentially beneficial outcomes for patients and healthcare systems, including increased completion of advance care directives, alignment of care to expressed preferences, better quality of communication and improved quality of life, reduction of unwanted hospital admissions, and increased use of palliative care. Aspects of ACP have been adopted in national and international healthcare policy. However, due to barriers to ACP, the occurrence in practice remains low. For instance, some people find ACP challenging: they may neither wish to ‘foresee’ the future nor to discuss the implications of their illness. Some may find it difficult to express their wishes or find the emphasis on autonomy to be countercultural. This chapter examines evidence about the effectiveness of ACP, describes the current practices, analyses its barriers and facilitators, and formulates best practices. It also explores the challenges of raising awareness of ACP among the general public, which is a necessary precursor to ACP. It draws on an international Delphi consensus study that was charged with developing a definition of ACP and recommendations for its application.

Does Alice Live Here Anymore? Autonomy and Identity in Persons Living and Dying With Dementia

Conventional scientific definitions of dementia, or its newer proposed alternate—neurocognitive disorders place emphasis upon cognitive function, particularly memory. The changes in thought, emotion, behavior, personality, and biological function are usually considered only of secondary importance. At the core of the illness, however, lies a progressive loss of self, and by extension, of personhood, identity, autonomy, and agency. The identity of the person living with dementia, and the deterioration of a sense of self assumes significance in planning end of life care, including palliative care. A consideration of self and identity is also significant where physician assisted death, incorporating euthanasia, has legal sanctity. As dementia progresses, there is usually a progressive loss of personal decision making capacity and legal competence. Shared decision making, advance care directives and proxy representatives are options available to safeguard autonomy and agency in such cases. Advance care directives are often treated as static documents. The loss of self and deterioration of identity in persons with dementia means, that there is a psychological discontinuity across time and space, though biological continuity is retained. The discontinuity in self and identity however, imply that the person with dementia changes considerably and so too may values and beliefs. A document which best reflected the wishes of the person with dementia in the past, may not always do so now. Advance directives and proxy representatives may need to be dynamic and evolve over time, particularly where end of life care and physician assisted death is being invoked.

Provision of Advanced Care Planning Information by Public Institutions of Higher Education in the U.S.

This study explored how many, and in what form, U.S. public institutions of higher education (IHE; n=1,642) provide information regarding advance care planning (ACP), advance care directives (ACDs), and end-of-life (EOL) care on their official websites. Chi-square analysis was used to examine relationships between the availability of information and three institutional characteristics (size, type, and medical degree offering). Results show that most public IHE (92.1%, n=1,513) do not provide any information regarding ACDs or ACP on their websites. Overall, large, four-year institutions that offer medical degrees were significantly more likely to provide ACP and ACD information on their official websites.