Objectives: Advance care planning (ACP) typically comprises formal preparations (i.e., living will and/or durable power of attorney for health care) and informal discussions with family members and health care providers. However, some people complete formal documents without discussing them with others. If they become incapacitated, their appointed decision makers may lack guidance on how to interpret or enact their formal wishes. We document the prevalence and correlates of this partial approach to ACP.
Method: Using multinomial logistic regression models and data from a U.S. sample of 4,836 older adults in the 2018 wave of the National Health and Aging Trends Study (NHATS), this brief report evaluated associations between social integration indicators and the odds of completing (a) both discussions and formal plans (two-pronged ACP), (b) discussions only, (c) no ACP, and (d) formal ACP only (reference category). We adjust for demographic and health characteristics established as correlates of ACP.
Results: A minority (15%) of NHATS participants reported formal plans without having discussed them. Indicators of social isolation (e.g., smaller social networks and fewer social activities) increased the odds of engaging in formal planning only compared to two-pronged ACP. Socioeconomic disadvantage and probable dementia reduced the odds of having end-of-life conversations, whether as one’s only preparation or in tandem with formal preparations.
Discussion: Socially isolated persons are especially likely to do formal planning only, which is considered less effective than two-pronged ACP. Health care professionals should recognize that older adults with few kin may require additional support and guidance when doing ACP.
This study examined how common thinking of and planning for the end of life (EOL) is among German and Portuguese centenarians, and whether patterns of EOL views are shaped by cultural and individual characteristics. A significant portion of centenarians in both countries reported not thinking about the EOL, not believing in the afterlife, and not having made EOL arrangements. Latent class analysis identified three EOL patterns: Class 1 ( EOL thoughts with EOL arrangements and afterlife beliefs), Class 2 ( EOL arrangements and afterlife beliefs without EOL thoughts), and Class 3 ( Overall low endorsement of EOL items). The proportion of Portuguese centenarians was higher in Class 1 and of German centenarians higher in Classes 2 and 3. Centenarians' demographic, social, and health characteristics were significantly different across EOL patterns. As lack of EOL planning can result in poor EOL quality, enhancing communication among centenarians, family, and health-care professionals seems imperative.
Hospice has grown considerably but the likelihood that someone gets hospice depends on social and organizational practices. This article shows how staff beliefs and work routines influenced hospice utilization in two nursing homes. In one, 76% of residents died on hospice and in the other 24% did. Staff identified barriers to hospice including families who saw hospice as giving up and gaps in the reimbursement system. At the high-hospice nursing home, staff said hospice care extended beyond what they provided on their own. At the low-hospice nursing home, an influential group said hospice was essentially the same as their own end-of-life care and therefore needlessly duplicative. Staff at the high-hospice nursing home proactively approached families about hospice, whereas staff at the low-hospice nursing home took a reactive approach, getting hospice when families asked for it. Findings demonstrate how staff beliefs and practices regarding hospice shape end-of-life care in nursing homes.
OBJECTIVES: To explore how centenarians think about and plan for the end of life (EOL) and to what extent their primary contacts (proxy informants) are aware of these thoughts.
DESIGN: Population-based study with semistructured in-person interviews.
SETTING: Defined geographical region approximately 60 km around Heidelberg, Germany.
PARTICIPANTS: Subsample drawn from the larger study of centenarians (N = 78) with data on centenarians' EOL thoughts from the centenarian and the proxy informant.
MEASUREMENTS: Centenarians reported on their thoughts about the EOL, perception of the EOL as threatening, longing for death, engagement in any EOL planning, and type of EOL plan (will, living will, healthcare surrogate) in place. Proxy respondents answered the same set of questions based on what they thought the centenarians' perspective was.
RESULTS: In nearly half of cases, proxies misjudged whether the centenarian thought about EOL. Although only few centenarians perceived the EOL as threatening, and approximately one-quarter reported longing for death, proxies overestimated centenarians' reports on the former and underestimated the latter. Proxies reported more centenarian EOL planning than centenarians themselves.
CONCLUSION: Even though enrolled proxies were mostly persons very close to the centenarian, many of them did not seem to be well informed about the centenarians' thoughts and plans regarding the EOL, suggesting a lack of communication between centenarians and social network members in this respect. Healthcare professionals should be aware that, even for very old adults approaching the end of their lives, discussions about EOL and EOL planning may need to be actively encouraged and supported.
This study examined how the Medical Order for Life-sustaining Treatment (MOLST) is implemented in two nursing homes in Massachusetts; one had primarily long-term care residents and high hospice utilization, the other had low hospice utilization and a high proportion of post-acute care residents. Qualitative in-person interviews with 21 staff members who had a role implementing the MOLST explored their experiences using the form in their daily work routines. Staff at both nursing homes described benefits of the MOLST such as providing guidance for staff and family. Yet, they also gave detailed accounts of challenges they face in implementing the form. They reported problems with the form itself such as confusing language and conflicting categories as well as a set of procedural challenges that undermined the timely completion of the form. The nursing home with more post-acute care residents faced more challenges with transferability of the MOLST to and from hospitals.
CONTEXT: Direct care workers in long-term care can develop close relationships with their patients and subsequently experience significant grief after patient death (Boerner et al., 2015). Consequences of this experience for employment outcomes have received little attention.
OBJECTIVES: To (1) investigate staff, institutional, patient, and grief factors as predictors of burnout dimensions among direct care workers who had experienced recent patient death, (2) determine which specific aspects of these factors are of particular importance, and (3) establish grief as an independent predictor of burnout dimensions.
METHODS: Participants were 140 certified nursing assistants and 80 homecare workers having recently experienced patient death. Data collection involved comprehensive semi-structured in-person interviews. Standardized assessments and structured questions addressed staff, patient, and institutional characteristics, grief symptoms and grief avoidance, as well as burnout dimensions (depersonalization, emotional exhaustion, and personal accomplishment).
RESULTS: Hierarchical regressions revealed that grief factors accounted for unique variance in depersonalization, over and above staff, patient, and institutional factors. Supervisor support and caregiving benefits were consistently associated with higher levels on burnout dimensions. In contrast, coworker support was associated with a higher likelihood of depersonalization and emotional exhaustion.
CONCLUSION: Findings suggest that grief over patient death plays an overlooked role in direct care worker burnout. High supervisor support and caregiving benefits may have protective effects with respect to burnout, whereas high coworker support may constitute a reflection of burnout.
Beaucoup de décès font suite à une maladie chronique, une dépendance mais aussi à une assistante effectuée par des aidants familiaux. L'objectif de cet article est de décrire comment l'expérience des aidants naturels auprès d'un proche malade affecte leur deuil, en étudiant plus particulièrement les rapports entre les situations d'accompagnement et le processus de deuil difficile, souvent appelé "deuil compliqué". Cet article commence par une brève revue de la littérature générale sur l'accompagnement et le deuil. L'auteur définit ensuite le deuil compliqué et explique pourquoi certains aidants refuse d'accepter la mort de la personne aimée. Finalement, sont donnés des conseils pratiques que les professionnels peuvent utiliser afin d'aider les aidants avant et après la mort du proche accompagné.
L'étude concerne les comportements des parents devenus veufs envers leurs enfants qui sont encore à la maison. Elle pose des questions sur les différences d'attitude selon que le parent restant soit le père ou la mère. Les facteurs de variation sont recherchés à partir d'une enquête qualitative sur cinq mères et cinq pères. Les résultats montrent en points principaux la notion de perte, la restructuration de la vie à la maison et les perceptions des besoins des enfants. Des exemples de témoignages recueillis sont donnés.