Medicine aims to relieve patient suffering and cure illness. To relieve suffering is the heart of what doctors do. However, respect for individual autonomy and self-determination are fundamental principles in Western medical ethics and decision-making, often expressed as a desire for control over the timing and manner of death. Patients who become demented often formulate advance euthanasia and assisted suicide directives. Dealing with such request is quite complex because of the specific medical and conflicting ethical questions they raise. Some specific medical and ethical issues arise regarding these substantive requirements when evaluating the euthanasia request of a person suffering from dementia. In jurisdictions that allow euthanasia, the most fundamental prerequisite for a person to make autonomous decisions is capacity. Whether anyone with moderate or severe dementia, and even some with mild dementia, could be deemed to be competent by these criteria is debatable, but during the course of their disease people with dementia sooner or later lose their capacity to make self-determined decisions.
Background: Despite the importance of persons with dementia (PWDs) engaging in advance care planning (ACP) at a time when they are still competent to appoint a surrogate decision maker and meaningfully participate in ACP discussions, studies of ACP in PWDs are rare.
Objective: We conducted an intervention development study to adapt an efficacious ACP intervention, SPIRIT (sharing patient's illness representations to increase trust), for PWDs in early stages (recent Montreal Cognitive Assessment [MoCA] score =13) and their surrogates and assess whether SPIRIT could help PWDs engage in ACP.
Design: A formative expert panel review of the adapted SPIRIT, followed by a randomized trial with qualitative interviews, was conducted. Patient–surrogate dyads were randomized to SPIRIT in person (in a private room in a memory clinic) or SPIRIT remote (via videoconferencing from home).
Setting/Subjects: Twenty-three dyads of PWDs and their surrogates were recruited from an outpatient brain health center. Participants completed preparedness outcome measures (dyad congruence on goals of care, patient decisional conflict, and surrogate decision-making confidence) at baseline and two to three days post-intervention, plus a semistructured interview. Levels of articulation of end-of-life wishes of PWDs during SPIRIT sessions were rated (3 = expressed wishes very coherently, 2 = somewhat coherently, and 1 = unable to express coherently).
Results: All 23 were able to articulate their end-of-life wishes very or somewhat coherently during the SPIRIT session; of those, 14 PWDs had moderate dementia. While decision-making capacity was higher in PWDs who articulated their wishes very coherently, MoCA scores did not differ by articulation levels. PWDs and surrogates perceived SPIRIT as beneficial, but the preparedness outcomes did not change pre–post.
Conclusions: SPIRIT engaged PWDs and surrogates in meaningful ACP discussions, but requires testing of efficacy and long-term outcomes.
Illness blogs have been used by many individuals to describe their experiences, share knowledge, and gather support. The purpose of this study was to identify needs, concerns, and advice from the blogs of caregivers caring for a person with dementia at the end of life (EOL). A qualitative thematic analysis was performed of 192 blog postings from six dementia family caregivers during the EOL. A Google search using a systematic identification method was followed. Caregivers were females caring for mothers (n = 5) and husbands (n = 1). Themes varied by EOL stage within the contextual environment of Grief/Loss, Family, and Spirituality. Pre-death themes were Care Transitions and Quality; dying were Physical and Emotional Aspects; and post-death were Relief and Remembering. Four additional themes transitioned across stages: Decision-Making, Health Care Providers, Advice, and Caregiver Support. Findings suggest caregiver needs, concerns, and advice vary by EOL stage. Implications for tailored interventions should be considered.
Background and Objectives: To address the unique characteristics of Alzheimer's disease and related dementias (ADRD) that complicate end-of-life (EOL), we created, refined, and validated a dementia-focused EOL planning instrument for use by healthy adults, those with early-stage dementia, family caregivers, and clinicians to document EOL care preferences and values within the current or future context of cognitive impairment.
Research Design and Methods: A mixed-method design with four phases guided the development and refinement of the instrument: (1) focus groups with early-stage ADRD and family caregivers developed and confirmed the tool content and comprehensiveness; (2) evaluation by content experts verified its utility in clinical practice; (3) a sample of healthy older adults (n = 153) and adults with early-stage ADRD (n = 38) completed the tool, whose quantitative data were used to describe the psychometrics of the instrument; and (4) focus groups with healthy older adults, family caregivers, and adults with early-stage ADRD informed how the guide should be used by families and in clinical practice.
Results: Qualitative data supported the utility and feasibility of a dementia-focused EOL planning tool; the six scales have high internal consistency (a = 0.66–0.89) and high test–rest reliability (r = .60–.90). On average, both participant groups reported relatively high concern for being a burden to their families, a greater preference for quality over length of life, a desire for collaborative decision-making process, limited interest in pursuing life-prolonging measures, and were mixed in their preference to control the timing of their death. Across disease progression, preferences for location of care changed, whereas preferences for prolonging life remained stable.
Discussion and Implications: The LEAD Guide (Life-Planning in Early Alzheimer's and Dementia) has the potential to facilitate discussion and documentation of EOL values and care preferences prior to loss of decisional capacity, and has utility for healthy adults, patients, families, providers, and researchers.
BACKGROUND: Caring for someone with dementia can be physically and emotionally difficult. Acting as a caregiver can make it difficult to access sources of support, particularly in the later stages of dementia. This paper reports the development and presents the targets (subject areas) and components of a prototype website to support family caregivers of a person with dementia towards the end of life.
METHODS: Adopting an iterative approach and co-production methods the development process consisted of four stages: Stage1-Synthesis of data: three sources of data (interviews, systematic review and theory) were synthesised using tabulation, to identify the targets of the prototype; Stage2-Identifying intervention targets and components: a research development group (health practitioners, a family caregiver and academic experts) met to discuss the development, using a modified nominal group process, refining the synthesis from stage 1; Stage3-Developing the intervention prototype: an outline of the prototype was developed based on stage 1 and 2; and Stage4-User testing: interviews with caregivers testing the prototype website.
RESULTS: Qualitative interviews with caregivers identified four targets for the intervention: 1) feeling prepared and equipped; 2) feeling connected and supported; 3) valuing themselves as a caregiver and as an individual; 4) maintaining control of the caring situation and being the coordinator of care. The systematic review provided evidence on how and what components could address these targets, including providing information, peer support, contact with professionals, and psychological support. Theory helped to narrow the focus within each of these targets. Active discussion with the research development group and end users provided an outline of the prototype website. The prototype website presented addresses these targets with written information, videos from other caregivers, and peer and professional support sections. The subject areas covered included expectations at the end of life, support with day-to-day caring, care planning, and communication.
CONCLUSIONS: This paper provides a detailed account of the development process of a prototype website for caregiver support. The transparent methodology and key lessons learnt from developing the prototype should help those who are developing similar interventions, across complex, progressive conditions and not just limited to dementia.
OBJECTIVES: To conceptualize a "good end of life" for people with dementia from the perspectives of bereaved family caregivers in Japan.
DESIGN AND PARTICIPANTS: A qualitative study using in-depth, semi-structured interviews focused on the family caregivers' perceptions of their loved one's experiences. Family caregivers who had lost their relatives with dementia more than six months previously were recruited using maximum variation sampling by cultural subpopulation. A thematic analysis was conducted.
RESULTS: From 30 interviews held, four main themes emerged. A good end of life for people with dementia means experiencing a "Peaceful Death" while "Maintaining Personhood" at a "Preferred Place" allowing for feelings of "Life Satisfaction." A "Preferred Place" emerged as a basic requirement to achieving a good end of life according to the three other themes, in particular, "Maintaining Personhood." However, the interviewees experienced difficulties in ensuring that their loved ones stayed at a "Preferred Place."
CONCLUSIONS: Despite different cultural backgrounds, perceptions of a good end of life with dementia were remarkably similar between Japan and Western countries. However, recent societal changes in family structures and long-term care access in Japan may explain the theme of a comfortable place taking a central position. We suggest that these themes be considered and translated into care goals. They could supplement established end-of-life care goals for quality of life in dementia, which aim to maximize functioning and increase comfort.
TRIAL REGISTRATION NUMBER: Ethics Committee of the Graduate School and Faculty of Medicine, Kyoto University (R0808-2).
Education of health and social care professionals is essential in preparation to confidently and effectively support families affected by dementia to undertake advance care planning. This article describes a training needs analysis of Admiral Nurses, dementia specialists, in facilitating advance care planning for future care.
Methods: A questionnaire survey was completed by Admiral Nurses attending end-of-life care masterclasses in 2017 and 2018. Both quantitative (years registered as a nurse, years as an Admiral Nurse and subjective level of confidence in completing advance care plannings) and qualitative data (interventions perceived to increase confidence) were collected.
Findings: There were 75 completed responses (two incomplete returns). There was no correlation between levels of confidence and years registered as a nurse. However, there was a small positive correlation between confidence and number of years as an Admiral Nurse (r = 0.23; p < 0.05). Themes identified qualitatively to enhance practice were advanced communication skills, supervised practice, resources to frame conversations and a guide and template for advance care planning.
Conclusion: Although Admiral Nurses are specialists in dementia, several educational initiatives could be employed to better enable them to support advance care planning for families affected by dementia. This training needs analysis is contributed towards developing an educational intervention for Admiral Nurses to improve advance care planning support.
ABSTRACT: Objectives:To examine factors that influence decision-making, preferences, and plans related to advance care planning (ACP) and end-of-life care among persons with dementia and their caregivers, and examine how these may differ by race.
DESIGN: Cross-sectional survey.
SETTING: 13 geographically dispersed Alzheimer's Disease Centers across the United States.
PARTICIPANTS: 431 racially diverse caregivers of persons with dementia.
MEASUREMENTS: Survey on "Care Planning for Individuals with Dementia."
RESULTS: The respondents were knowledgeable about dementia and hospice care, indicated the person with dementia would want comfort care at the end stage of illness, and reported high levels of both legal ACP (e.g., living will; 87%) and informal ACP discussions (79%) for the person with dementia. However, notable racial differences were present. Relative to white persons with dementia, African American persons with dementia were reported to have a lower preference for comfort care (81% vs. 58%) and lower rates of completion of legal ACP (89% vs. 73%). Racial differences in ACP and care preferences were also reflected in geographic differences. Additionally, African American study partners had a lower level of knowledge about dementia and reported a greater influence of religious/spiritual beliefs on the desired types of medical treatments. Notably, all respondents indicated that more information about the stages of dementia and end-of-life health care options would be helpful.
CONCLUSIONS: Educational programs may be useful in reducing racial differences in attitudes towards ACP. These programs could focus on the clinical course of dementia and issues related to end-of-life care, including the importance of ACP.
Cognitive decline and dementia have become major concerns for many individuals reaching later life within contemporary Western societies. This fear of decline is central to the social divide between the third age embodying ideals of maintained health, activity and lifestyle choices, and the fourth age, a social imaginary encompassing the irreversible decline associated with ageing. In this article, we explore how brain-training technologies have become successful by relying on tensions between the third and fourth ages. We review current debates on the concepts contained in brain training and examine the emphasis on the moral virtue of ‘training the brain’ in later life as an extension of fitness and health management. We underline the limited consideration given to social positioning within old age itself in the literature. We further argue that using brain-training devices can support a distancing from intimations of dementia; a condition associated with an ‘ageing without agency’. Drawing on Bourdieu, we use the concept of distinction to describe this process of social positioning. We discuss the impact that such ‘technologies of distinction’ can have on people with dementia by ‘othering’ them. We conclude that the issue of distinction within later life, particularly within the field of cognitive decline, is an important aspect of the current culture of active cognitive ageing.
OBJECTIVES: In clinical settings, untreatable biliary sludge in the gallbladder can be observed in older adults with advanced dementia. The underlying cause of biliary sludge existence in patients with dementia is currently unknown. Therefore, we aimed to investigate the prevalence, risk factors, and related outcomes of biliary sludge formation in the gallbladder of older adults with dementia.
DESIGN: Cross-sectional study.
SETTING: Geriatric ward of University Hospital in Japan.
PARTICIPANTS: Inpatients aged 80 and older living with dementia.
MEASUREMENTS: We evaluated the presence of biliary sludge by diagnostic ultrasonography and collected data regarding patient demographic information, cognition (mini-mental state examination [MMSE]), physical activity (Barthel Index), oral food intake (food intake level scale [FILS]), clinical stage of dementia (functional assessment staging [FAST] of dementia), and patient performance status (Zubrod/ Karnofsky score).
RESULTS: Male sex, larger gallbladder volume and calories from oral intake were significantly associated with the presence of biliary sludge (P = .02, .02, .002, respectively). There was a significant negative correlation between the FAST stage and the FILS level in all patients (P < .001). More advanced dementia and dysphagia was more likely to be found in patients with Alzheimer disease (AD) with biliary sludge, compared to patients with AD without biliary sludge (FAST 7a, FILS II and FAST 6c, FILS V, respectively, P = .06, 04). A logistic regression analysis revealed that the eating status of FILS I and II, generally called "fasting or anorexia", was a significant risk factor for forming biliary sludge in older adults with dementia (P = .031, odds ratio: 5.25, 95% confidence interval: 1.16-23.72).
CONCLUSIONS: Fasting status may be associated with the existence of biliary sludge in older adults with dementia. Therefore, supportive care for eating might be an important solution to comfortable end-of-life care for older adults with advanced dementia.
Importance: Early palliative care interventions drive high-value care but currently are underused. Health care professionals face challenges in identifying patients who may benefit from palliative care.
Objective: To develop a deep learning algorithm using longitudinal electronic health records to predict mortality risk as a proxy indicator for identifying patients with dementia who may benefit from palliative care.
Design, Setting, and Participants: In this retrospective cohort study, 6-month, 1-year, and 2-year mortality prediction models with recurrent neural networks used patient demographic information and topics generated from clinical notes within Partners HealthCare System, an integrated health care delivery system in Boston, Massachusetts. This study included 26 921 adult patients with dementia who visited the health care system from January 1, 2011, through December 31, 2017. The models were trained using a data set of 24 229 patients and validated using another data set of 2692 patients. Data were analyzed from September 18, 2018, to May 15, 2019.
Main Outcomes and Measures: The area under the receiver operating characteristic curve (AUC) for 6-month and 1- and 2-year mortality prediction models and the factors contributing to the predictions.
Results: The study cohort included 26 921 patients (16 263 women [60.4%]; mean [SD] age, 74.6 [13.5] years). For the 24 229 patients in the training data set, mean (SD) age was 74.8 (13.2) years and 14 632 (60.4%) were women. For the 2692 patients in the validation data set, mean (SD) age was 75.0 (12.6) years and 1631 (60.6%) were women. The 6-month model reached an AUC of 0.978 (95% CI, 0.977-0.978); the 1-year model, 0.956 (95% CI, 0.955-0.956); and the 2-year model, 0.943 (95% CI, 0.942-0.944). The top-ranked latent topics associated with 6-month and 1- and 2-year mortality in patients with dementia include palliative and end-of-life care, cognitive function, delirium, testing of cholesterol levels, cancer, pain, use of health care services, arthritis, nutritional status, skin care, family meeting, shock, respiratory failure, and swallowing function.
Conclusions and Relevance: A deep learning algorithm based on patient demographic information and longitudinal clinical notes appeared to show promising results in predicting mortality among patients with dementia in different time frames. Further research is necessary to determine the feasibility of applying this algorithm in clinical settings for identifying unmet palliative care needs earlier.
Objectives: As key team members caring for people with advanced illness, nurses teach patients and families about managing their illnesses and help them to understand their options. Our objective was to determine if nurses' personal healthcare experience with serious illness and end-of-life (EOL) care differs from the general population as was shown for physicians.
Design: Observational propensity-matched cohort study.
Setting: Fee-or-service Medicare.
Participants: Nurses' Health Study (NHS) and a random 20% national sample of Medicare beneficiaries aged 66 years or older with Alzheimer's disease and related dementias (ADRD) or congestive heart failure (CHF) diagnosed in the hospital.
Measurements: Characteristics of care during the first year after diagnosis and the last 6 months of life (EOL).
Resuts: Among 57 660 NHS participants, 7380 had ADRD and 5375 had CHF; 3227 ADRD patients and 2899 CHF patients subsequently died. Care patterns in the first year were similar for NHS participants and the matched national sample: hospitalization rates, emergency visits, and preventable hospitalizations were no different in either disease. Ambulatory visits were slightly higher for NHS participants than the national sample with ADRD (13.1 vs 12.5 visits; P < .01) and with CHF (13.7 vs 12.5; P < .001). Decedents in the NHS and national sample had similar acute care use (hospitalization and emergency visits) in both diseases, but those with ADRD were less likely to use life-prolonging treatments such as mechanical ventilation (10.9% vs 13.5%; P = .001), less likely to die in a hospital with a stay in the intensive care unit (10.4% vs 12.1%; P = .03), and more likely to use hospice (58.9% vs 54.8%; P < .001). CHF at the EOL results were similar.
Conclusions: Nurses with newly identified serious illness experience similar care as the general Medicare population. However, at EOL, nurses are more likely to choose less aggressive treatments than the patients for whom they care.
L'auteure a suivi durant huit mois la vie de neuf résidents d'un habitat collectif pour personnes âgées. Située dans la région lyonnaise, cette structure accueille des personnes atteintes de la maladie d'Alzheimer et de différents troubles psychiatriques. Les notes prises au jour le jour reflètent avec humour les soins et les difficultés qui caractérisent le quotidien de ces patients.
Cultural competence, a clinical skill to recognise patients' cultural and religious beliefs, is an integral element in patient-centred medical practice. In the area of death and dying, physicians' understanding of patients' and families' values is essential for the delivery of culturally appropriate care. Dementia is a neurodegenerative condition marked by the decline of cognitive functions. When the condition progresses and deteriorates, patients with advanced dementia often have eating and swallowing problems and are at high risk of developing malnutrition. Enteral tube feeding is a conventional means of providing artificial nutrition and hydration to meet nutritional needs, but its benefits to the frail population are limitedly shown in the clinical evidence. Forgoing tube feeding is ethically challenging when patients are mentally incompetent and in the absence of an advance directive. Unlike some developed countries, like the United States of America, death and dying is a sensitive issue or even a taboo in some cultures in developing countries that forgoing enteral tube feeding is clinically and ethically challenging, such as China and Malaysia. This article in three parts 1) discusses the clinical and ethical issues related to forgoing tube feeding among patients with advanced dementia, 2) describes how Hong Kong Chinese, North American, and Malaysian Islamic cultures respond differently in the decision-making patterns of forgoing tube feeding for patients with advanced dementia, and 3) reiterates the clinical implications of cultural competence in end-of-life care.
Objective: To improve patient participation in advance care planning in nursing homes where most patients have some degree of cognitive impairment.
Methods: This was a pair-matched cluster randomized clinical trial with eight wards in eight Norwegian nursing homes. We randomized one ward from each of the matched pairs to the intervention group. We included all patients above 70. The primary outcome was prevalence of documented patient participation in end-of-life treatment conversations. The intervention included implementation support using a whole-ward approach where regular staff perform advance care planning and invite all patients and next of kin to participate.
Results: In intervention group wards the patients participated more often in end-of-life treatment conversations (p < 0.001). Moreover, the patient's preferences, hopes AND worries (p = 0,006) were more often documented, and concordance between provided TREATMENT and patient preferences (p = 0,037) and next of kin participation in advance care planning with the patient (p = 0,056) increased.
Conclusion: Improved patient participation - also when cognitively impaired - is achievable through advance care planning in nursing homes using a whole-ward approach.
Practice implications: Patients with cognitive impairment should be included in advance care planning supported by next of kin. A whole-ward approach may be used to implement advance care planning.
For a growing number of persons with dementia (PWDs), advance care planning (ACP) can help families make important end-of-life (EOL) care decisions that reflect PWDs' values and preferences. The current exploratory study aimed to understand advance directive planning and decision making among PWDs and caregivers. A survey was conducted with a convenience sample of 47 ethnically diverse PWD caregivers recruited from rural health care facilities in Southwest Texas. Sixty-eight percent of PWDs and caregivers were Hispanic. The majority of PWDs had completed an advance directive (60%) and preferred equally shared decision making between family (including the PWD) and physicians (57%). Under a hypothetical EOL scenario for PWDs, caregivers chose comfort (40%) and palliative care treatment (55%) more than other goals and treatment options. In this scenario, Hispanic PWDs were less likely than non-Hispanic White counterparts to complete an advance directive (48% vs. 81%, p < 0.05) and to choose only pain and symptom management (46% vs. 81%, p < 0.05). Although the overall ACP rates among rural PWDs may be comparable to those for the general PWD population, ethnic differences exist. More culturally competent education efforts are needed to promote ACP among PWDs in culturally diverse rural communities.
Introduction: Older patients with hip fracture have a 20% to 30% mortality rate in the year after surgery. Nonoperative care has higher 1-year mortality rates and is generally only pursued in those with an extraordinarily high surgical risk. As the population ages, more patients with hip fracture may fall into this category. The orthopedic surgeon is typically the main consultant responsible for deciding between surgery and conservative management, and the reasoning behind one decision over the other is often poorly understood. We undertook a review to determine decision-making tools for surgery in high-risk patients with hip fracture.
Materials and Methods: A review was conducted using PubMed to determine articles published using the terms palliative care, conservative care, nonoperative, hip fracture, orthopedic procedures, fracture fixation, and surgery. Our search resulted in 13 articles to review. These were further screened to determine tools for use in surgical decision-making.
Results: Several potential decision-making tools were found in our search. The potential tools to identify patients who would benefit from nonoperative treatment included the Palliative Performance Scale for severe dementia, the Lawton Instrumental Activities of Daily Living and Katz Activities of Daily Living scales for prefracture immobility, a combination of clinical signs and laboratory tests to determine risk of imminent death, and the Charlson Comorbidity Score for additional serious comorbidities. No tools have been prospectively tested in a clinical setting.
Discussion: Evaluation of each patient using a variety of decision making tools should help the orthopedic surgeon determine which patients would be better suited to non-operative management. After determining the benefit of non-operative care, they must effectively allow the fracture to heal while ameliorating pain. Palliative care physicians can fulfill this role by providing support and symptom relief.
Conclusions: Surgical decision-making for hip fracture repair in the elderly patients is not straight forward. Several tools may be helpful to the surgeon in determining who may be better suited for nonoperative care or a palliative care referral. Prospective data do not exist in these decision-making tools.
General practitioners (GPs) play a key role in the timely diagnosis of dementia and also in advance care planning (ACP). They often have known patients and their families for decades and are familiar with their values and treatment preferences; they are, therefore, in a position to initiate the ACP process even before the appearance of the first symptoms of dementia and certainly following disclosure of the diagnosis. To do so, they should recognise whether patients are receptive to an ACP consultation or whether they might reject it for personal, social or cultural reasons. Under no circumstances should the patient or their family be coerced into making these provisions. In most countries, the current framework does not provide enough time and money for GPs to carry out actual ACP consultations completely on their own. There is evidence that specially trained health professionals are able to more effectively discuss treatment goals and limits of life-prolonging measures than GPs who are well acquainted with their patients. Consequently, we suggest that it will be the GPs' task to seize the right moment for starting an ACP process, to raise awareness of patients and their relatives about ACP, to test the patient's decision-making capacity and, finally, to involve appropriately trained healthcare professionals in the actual ACP consultation process. Care should be taken that these professionals delivering time-intensive ACP consultations are not only able to reflect on the patient's values but are also familiar with the course of the disease, the expected complications and the decisions that can be anticipated. The GP will ensure an active exchange with the ACP professional and should have access to the documentation drawn up in the ACP consultation process (treatment plan and advance directive including instructions for medical emergencies) as soon as possible. GPs as coordinators of healthcare provision should document appropriately all specialists involved in the care and ensure that treatment decisions are implemented in accordance with the patient's preferences for future care or the presumed will of the patient.