BACKGROUND: Preparation for an impending death through EOL (end-of-life) discussions and human presence when a person is dying is important for both patients and families.
OBJECTIVE: The aim was to study whether EOL discussions were offered and to what degree patients were alone at time of death when dying from Covid-19, comparing deaths in nursing homes and hospitals.
DESIGN: The national Swedish Register of Palliative Care (SRPC) was used. All expected deaths from Covid-19 in nursing homes and hospitals were compared with, and contrasted to, deaths in a reference population (deaths in 2019).
SETTING AND SUBJECTS: A total of 1346 expected Covid-19 deaths in nursing homes (n=908) and hospitals (n=438) were analyzed.
RESULTS: Those who died were of a more advanced age in nursing homes (mean 86.4 years) and of a lower age in hospitals (mean 80.7 years) (p<0.0001). Fewer EOL discussions with patients were held compared with deaths in 2019 (74% vs. 79%, p<0.001) and dying with someone present was much more uncommon (59% vs. 83%, p<0.0001). In comparisons between nursing homes and hospital deaths, more patients dying in nursing homes were women (56% vs. 37%, p<0.0001) and significantly fewer had a retained ability to express their will during the last week of life (54% vs. 89%, p<0.0001). Relatives were present at time of death in only 13% and 24% of the cases in nursing homes and hospitals, respectively (p<0.001). The corresponding figures for staff were 52% and 38% (p<0.0001).
CONCLUSION: Dying from Covid-19 negatively affects the possibility of holding an EOL discussion and the chances of dying with someone present. This has considerable social and existential consequences for both patients and families.
OBJECTIVES: Nursing homes (NHs) are critical end-of-life (EOL) care settings for 70% of Americans dying with Alzheimer's disease/related dementias (ADRD). Whether EOL care/outcomes vary by NH/market characteristics for this population is unknown but essential information for improving NH EOL care/outcomes. Our objectives were to examine variations in EOL care/outcomes among decedents with ADRD and identify associations with NH/market characteristics.
OUTCOMES: Place-of-death (hospital/NH), presence of pressure ulcers, potentially avoidable hospitalizations (PAHs), and hospice use at EOL. Key covariates were ownership, staffing, presence of Alzheimer's units, and market competition.
SETTING AND PARTICIPANTS: Long-stay NH residents with ADRD, age 65 + years of age, who died in 2017 (N = 191,435; 14,618 NHs) in NHs or hospitals shortly after NH discharge.
METHODS: National Medicare claims, Minimum Data Set, public datasets. Descriptive analyses and multivariable logistic regressions.
RESULTS: As ADRD severity increased, adjusted rates of in-hospital deaths and PAHs decreased (17.0% to 6.3%; 11.2% to 7.0%); adjusted rates of dying with pressure ulcers and hospice use increased (8.2% to 13.5%; 24.5% to 40.7%). Decedents with moderate and severe ADRD had 16% and 13% higher likelihoods of in-hospital deaths in for-profit NHs. In NHs with Alzheimer's units, likelihoods of in-hospital deaths, dying with pressure ulcers, and PAHs were significantly lower. As ADRD severity increased, higher licensed nurse staffing was associated with 14%-27% lower likelihoods of PAHs. Increased NH market competition was associated with higher likelihood of hospice use, and lower likelihood of in-hospital deaths among decedents with moderate ADRD.
CONCLUSIONS AND IMPLICATIONS: Decedents with ADRD in NHs that were nonprofit, had Alzheimer's units, higher licensed nurse staffing, and in more competitive markets, had better EOL care/outcomes. Modifications to state Medicaid NH payments may promote better EOL care/outcomes for this population. Future research to understand NH care practices associated with presence of Alzheimer's units is warranted to identify mechanisms possibly promoting higher-quality EOL care.
Objectives: Geriatric palliative care approaches support deprescribing of antihypertensives in older nursing home (NH) residents with limited life expectancy and/or advanced dementia (LLE/AD) who are intensely treated for hypertension (HTN), but information on real-world deprescribing patterns in this population is limited. We examined the incidence and factors associated with antihypertensive deprescribing.
Design: National, retrospective cohort study.
Setting and Participants: Older Veterans with LLE/AD and HTN admitted to VA NHs in fiscal years 2009-2015 with potential overtreatment of HTN at admission, defined as receiving at least 1 antihypertensive class of medications and mean daily systolic blood pressure (SBP) <120 mm Hg.
Measures: Deprescribing was defined as subsequent dose reduction or discontinuation of an antihypertensive for =7 days. Competing risk models assessed cumulative incidence and factors associated with deprescribing.
Results: Within our sample (n = 10,574), cumulative incidence of deprescribing at 30 days was 41%. Veterans with the greatest level of overtreatment (ie, multiple antihypertensives and SBP <100 mm Hg) had an increased likelihood (hazard ratio 1.75, 95% confidence interval 1.59, 1.93) of deprescribing vs those with the lowest level of overtreatment (ie, one antihypertensive and SBP =100 to <120 mm Hg). Several markers of poor prognosis (ie, recent weight loss, poor appetite, dehydration, dependence for activities of daily living, pain) and later admission year were associated with increased likelihood of deprescribing, whereas cardiovascular risk factors (ie, diabetes, congestive heart failure, obesity), shortness of breath, and admission source from another NH or home/assisted living setting (vs acute hospital) were associated with decreased likelihood.
Conclusions and Implications: Real-world deprescribing patterns of antihypertensives among NH residents with HTN and LLE/AD appear to reflect variation in recommendations for HTN treatment intensity and individualization of patient care in a population with potential overtreatment. Factors facilitating deprescribing included treatment intensity and markers of poor prognosis. Comparative effectiveness and safety studies are needed to guide clinical decisions around deprescribing and HTN management.
AIMS AND OBJECTIVES: The purpose of this study is to elucidate the attitudes and knowledge of nursing home (NH) staff involved in the decision-making process surrounding tube feeding for people with advanced dementia, and regarding palliative care and eating difficulties in this population.
BACKGROUND: Dementia's final stage is associated with eating difficulties. "Comfort feeding" is the approach endorsed by the American Geriatrics society for those with advanced dementia and eating difficulties. Despite this, tube feeding remains a persisting practice in NHs in Israel.
DESIGN: Qualitative descriptive study.
METHODS: 27 NH employees from different sectors employed by seven NHs in Northern Israel underwent semi-structured, face-to-face interviews. The COREQ checklist was used to aid with reporting and analysis of results.
RESULTS: In Israel, there is an emerging palliative care discourse in caring for people with advanced dementia living in the NH setting. However, many interviewed didn't demonstrate an accurate understanding of this term or of the term "comfort feeding". Several barriers toward implementation of palliative care were identified and include a lack of formal education regarding nutrition in advanced dementia, socio-economic factors and their association with the two types of NHs operating in Israel (those with exclusively private funding, and those reimbursed by the Ministry of Health).
CONCLUSIONS: Interviews with NH staff regarding eating difficulties in advanced dementia shed light on the palliative care discourse, which is in a liminal stage in many countries. The themes which emerged may help inform future recommendations regarding palliative care in general and more specifically in NH residents with advanced dementia, in countries where policy is still being developed and refined.
RELEVANCE TO CLINICAL PRACTICE: Understanding barriers toward implementation of a palliative approach and comfort feeding specifically could improve the care for people with advanced dementia in the NH setting.
Background: Increasing numbers of people dying from COVID-19 are reported, but data are lacking on the way they die.
Objective: To study symptoms and symptom relief during the last week of life, comparing nursing homes with hospitals.
Design: The Swedish Register of Palliative Care with national coverage was used. Breakthrough symptoms were registered as Yes/No. Symptom relief was recorded on a 3-grade scale as complete—partial—no relief.
All deaths in COVID-19 were contrasted to deaths in a reference population (deaths 2019). Deaths at nursing homes were compared with deaths in hospitals.
Setting and Subjects: All deaths in hospitals or nursing homes (n = 490) were analyzed. Deaths in other settings (specialized palliative care wards [n = 11], in palliative home care [n = 2], or in their own homes [n = 8]) were excluded (n = 21). Only patients with expected deaths (n = 390) were entered in the final analysis.
Results: Breathlessness as a breakthrough symptom was more common in COVID-19 patients than in the 2019 reference population (p < 0.001) and relief of breathlessness, as well as anxiety, delirium, and death rattles was less successful in COVID-19 patients (p < 0.05 to p < 0.01 in different comparisons). Patients were older in nursing homes than in hospitals (86.6 years vs. 80.9 years, p < 0.001) and more often female (48% vs. 34%, p < 0.001). Breakthrough of breathlessness was much more frequently reported in hospital settings than in nursing homes, 73% versus 35% (p < 0.0001), and complete relief was more rarely possible in hospitals, 20% versus 42% (p < 0.01). The proportion of partial relief+complete relief was comparable, 92% versus 95% (ns). Also, anxiety and pain were more often completely relieved in nursing homes (p < 0.01 in both comparisons).
Conclusion: The lower symptom prevalence in nursing homes may be explained by elderly frail residents dying already in the first phase of the COVID-19 disease, before acute respiratory distress syndrome develops.
COVID-19 mortality disproportionally affects nursing homes, creating enormous pressures to deliver high-quality end-of-life care. Comprehensive palliative care should be an explicit part of both national and global COVID-19 response plans. Therefore, we aimed to identify, review, and compare national and international COVID-19 guidance for nursing homes concerning palliative care, issued by government bodies and professional associations. We performed a directed documentary and content analysis of newly developed or adapted COVID-19 guidance documents from across the world. Documents were collected via expert consultation and independently screened against prespecified eligibility criteria. We applied thematic analysis and narrative synthesis techniques. We identified 21 eligible documents covering both nursing homes and palliative care, from the World Health Organization (n = 3), and eight individual countries: U.S. (n = 7), The Netherlands (n = 2), Ireland (n = 1), U.K. (n = 3), Switzerland (n = 3), New Zealand (n = 1), and Belgium (n = 1). International documents focused primarily on infection prevention and control, including only a few sentences on palliative care-related topics. Palliative care themes most frequently mentioned across documents were end-of-life visits, advance care planning documentation, and clinical decision making toward the end of life (focusing on hospital transfers). There is a dearth of comprehensive international COVID-19 guidance on palliative care for nursing homes. Most have a limited focus both regarding breadth of topics and recommendations made. Key aspects of palliative care, that is, symptom management, staff education and support, referral to specialist services or hospice, and family support, need greater attention in future guidelines.
OBJECTIVES: Family carers (FCs) of nursing home (NH) residents are best placed to notice deteriorations that signal impending death in their relative, which can open a conversation with healthcare professionals (HCPs) about adjusting the care plan. We explored contributors to bereaved FCs' decision to transition towards palliative-oriented care for their relatives in NHs.
METHODS: This qualitative descriptive study used a phenomenological design. Thirty-two bereaved FCs across 13 Italian NHs completed semi-structured interviews. Additional data were collected on NH referrals to palliative care services (PCS) in the 6 months before study start and treatments provided in the last week of life. Content analysis with a combined inductive and deductive approach was applied to identify codes and fit them into an a priori framework. When codes did not fit, they were grouped into new categories, which were finally gathered into themes.
RESULTS: FCs reported four types of "trigger events" that made them doubt that their relative would recover: (1) physical deterioration (e.g., stopping eating/walking or swallowing problems); (2) social confirmation (e.g., confirming their relative's condition with friends); (3) multiple hospitalizations; and (4) external indicators (e.g., medical examinations by external consultants). A "resident-centered environment" helped FCs recognize trigger events and "raise awareness of the possibility of death"; however, the "need for reassurance" was pivotal to a "gradual transition towards palliative-oriented care". When participants did not recognize the trigger event, their relative continued to receive curative-oriented care. NHs that referred residents to PCS discussed palliative-oriented care more frequently with FCs, had a lower nurse-to-resident and nurse aide-to-resident ratio, and administered more palliative-oriented care.
SIGNIFICANCE OF RESULTS: Trigger events represent an opportunity to discuss residents' prognosis and are the starting point for a gradual transition towards palliative-oriented care. Adequate staffing, teamwork, and communication between FCs and healthcare professionals contribute to a sensitive, timely shift in care goals.
AIM: To better understand the participation of nursing staff in end-of-life nutrition and hydration decision-making in an American nursing home.
DESIGN: A qualitative exploration with ethnographic focus.
METHODS: In April 2017, in-person, semi-structured interviews were performed with 19 nursing staff members in a nursing home located in the south-eastern United States. Additional information was gathered through participant observation during interviews and review of organizational and regulatory policies. Transcripts were coded and analysed using qualitative methods described by Roper and Shapira (2000).
RESULTS: Three primary themes relating to nursing staff participation in end-of-life nutrition and hydration decision-making were identified: (a) Formal decision-making: decisions made and implemented by persons with the authority to make legal and binding care decisions in the nursing home setting; (b) Informal decision-making: decisions not requiring medical orders; and (c) Influential factors: factors that influence actions of nursing staff.
CONCLUSION: A variety of factors have an impact on nursing staff participation in end-of-life nutrition and hydration decision-making. Participation is closely aligned with the type of decision, whether formal or informal, and role, whether Certified Nursing Assistant/Aide, Licensed Practical/Vocational Nurse, or Registered Nurse.
IMPACT: End-of-life nutrition and hydration decision-making in nursing homes differs from decision-making in other care settings and presents a challenge globally. Interventions that support the participation of nursing staff in end-of-life nutrition and hydration decision-making have the potential to positively impact the experiences of residents and family members faced with these issues in the nursing home setting.
Residents of Aged Care Facilities (RACF) experience burdensome hospital transfers in the last year of life, which may lead to aggressive and potentially inappropriate hospital treatments. Anticipating these transfers by identifying risk factors could encourage end-of-life discussions that may change decisions to transfer. The aim was to examine the feasibility of identifying an end-of-life risk profile among RACF residents using a predictive tool to better anticipate predictors of hospital transfers, death or poor composite outcome of hospitalisation and/or death after initial assessment. A retrospective cohort study of 373 permanent residents aged 65+ years was conducted using objective clinical factors from records in nine RACFs in metropolitan Sydney, Australia. In total, 26.8% died and 34.3% experienced a composite outcome. Cox proportional hazard regression models confirmed the feasibility of estimating the level of risk for death or a poor composite outcome. Knowing this should provide opportunities to initiate advance care planning in RACFs, facilitating decision making near the end of life. We conclude that the current structure of electronic RACF databases could be enhanced to enable comprehensive assessment of the risk of hospital re-attendance without admission. Automation tools to facilitate the risk score calculation may encourage the adoption of prediction checklists and evaluation of their association with hospital transfers.
L’auteur raconte sa reconstruction après la mort de Paula, sa compagne. Il témoigne de la douleur du deuil et de sa rencontre avec Chloé, avec qui il
partage désormais sa vie. Ce roman fait suite à "Jardins : saisons".
Marie Dorval travaille dans un établissement où vivent Suzanne, Tonton, Louise, tous âgés et plus ou moins touchées par la démence sénile ou d’autres maladies liées au vieillissement. Elle y croise également Marie-Paule, la fille d’une des résidentes qui vient quotidiennement donner un repas à sa mère. Roman autobiographique sur l’univers des maisons de retraite.
In the UK and the Westernised countries, most people die aged 80+ from disabling, chronic and degenerative diseases, having spent several years in poor health. There is thus continuity between long-term care (LTC) and end of life care (EOLC) in old age, but this continuity is poorly understood within policy and almost nothing is known about what determines the modality and intensity of LTC provision in old age towards the end of life. Drawing on multinomial logistic regression analysis of the English Longitudinal Study of Ageing (ELSA), this paper evaluates how health and socio-demographic factors affect the relative probability of receiving care through one of five long-term care arrangements (LTCAs) from the time of need at age =50 to death; and assesses the consequences this has for the English LTC and EOLC policy and planning. The study reveals that hospices provide end-of-life LTC for cancer diagnoses and adults aged 50-64, while care homes provide open-ended and end-of-life LTC for non-cancer diagnoses, dementia, severe disability, and adults aged 80+. Further, the informal, formal, mixed and care home LTCAs reflect increasing levels of disability and ill-health, and decreasing levels of family support, with differences concerning education and gender. Finally, dementia and Parkinson's disease are the single strongest determinants of high formal LTC provision, and overall high care needs determine high formal LTC provision. Within the English context, the consequences of this are that: 1) Continued reliance on informal family care is not sustainable; 2) To provide free formal LTC to old adults with high care needs is appropriate; and 3) Hospices do not cater for the prevalent form of dying in old age while care homes do, being the de facto hospices for severely disabled, very old (80+) adults with dementia. Yet this is not represented in English EOLC policy and research.
BACKGROUND: Nearly 70% of nursing home residents are eligible for palliative care, yet few receive formal palliative care outside of hospice. Little is known about nursing home staff attitudes, knowledge, skills, and behaviors related to palliative care.
METHODS: We administered a modified survey measuring attitudes toward death to 146 nursing home staff members, including both clinical and nonclinical staff, from 14 nursing homes.
RESULTS: Nursing home staff generally reported feeling comfortable caring for the dying, but half believed the end of life is a time of great suffering. Pain control (63%), loneliness (52%), and depression (48%) were the most important issues identified with regard to these patients, and there was ambivalence about the use of strong pain medications and the utility of feeding tubes at the end of life. Top priorities identified for improving palliative care included greater family involvement (43%), education and training in pain control (50%) and in management of other symptoms (37%), and use of a palliative care team (35%) at their facility.
CONCLUSIONS: Findings show there is a need for more palliative care training and education, which should be built on current staff knowledge, skills, and attitudes toward palliative care.
OBJECTIVES: PACE Steps to Success is a 1-year train-the-trainer program aiming to integrate nonspecialist palliative care into nursing homes via staff education and organizational support. In this study, we aimed to explore whether this program resulted in changes in residents' hospital use and place of death.
DESIGN: Secondary analysis of the PACE cluster randomized controlled trial (ISRCTN14741671). Data were collected on deaths over the previous 4 months via questionnaires at baseline and postintervention.
SETTING AND PARTICIPANTS: Questionnaires were completed by the nurse/care-assistant most involved from 78 nursing homes in 7 European Union countries.
MEASURES: We measured number of emergency department visits, hospital admissions, length of hospital stay, and place of death. Baseline and postintervention scores between intervention and control groups were compared, and we conducted exploratory mixed-model analyses. We collected 551 out of 610 questionnaires at baseline and 984 out of 1178 at postintervention in 37 intervention and 36 control homes.
RESULTS: We found no statistical significant effects of the program on emergency department visits [odds ratio (OR) = 1.38, P = .32], hospital admissions (OR = 0.98, P = .93), length of hospital stay (geometric mean difference = 0.85, P = .44), or place of death (OR = 1.08, P = .80).
CONCLUSIONS AND IMPLICATIONS: We found no effect of the PACE program on either hospital use in the last month of life or place of death. Although this may be related to implementation problems in some homes, the program might also require a more specific focus on managing acute end-of-life situations and a closer involvement of general practitioners or specialist palliative care services to influence hospital use or place of death.
The coronavirus disease 2019 (COVID-19) pandemic is causing unprecedented challenges for long-term care homes (LTCHs). There have been several clusters of severe acute respiratory syndrome coronavirus 2 infections within LTCHs and approximately half of all deaths in Canada at the time of writing have been in this setting.
[Début de l'article]
As more people live and die in the community despite complex health needs and functional impairment, the need for hospice increases. We found high and increasing penetration of hospice in community-based residential settings, compared with hospice use in private residences and nursing homes.
Background: Increasing utilisation of hospice services has been a major focus in oncology, while only recently have cardiologists realised the similar needs of dying patients with heart failure (HF). We examined recent trends in locations of deaths in these two patient populations to gain further insight.
Methods: Complete population-level data were obtained from the Mortality Multiple Cause-of-Death Public Use Record from the National Center for Health Statistics database, from 2013 to 2017. Location of death was categorised as hospital, home, hospice facility or nursing facility. Demographic characteristics evaluated by place of death included age, sex, race, ethnicity, marital status and education, and a multivariable logistic regression analysis was performed to analyse possible associations.
Results: Among 2 780 715 deaths from cancer, 27% occurred in-hospital and 14% in nursing facilities; while among 335 350 HF deaths, 27% occurred in-hospital and 30% in nursing facilities. Deaths occurred at hospice facilities in 14% of patients with cancer, compared with just 8.7% in HF (p=0.001). For both patients with HF and cancer, the proportion of at-home and in-hospice deaths increased significantly over time, with majority of deaths occurring at home. In both cancer and HF, patients of non-Hispanic ethnicity (cancer: OR 1.29, (1.27 to 1.31), HF: OR 1.14, (1.07 to 1.22)) and those with some college education (cancer: OR 1.10, (1.09 to 1.11); HF: OR 1.06, (1.04 to 1.09)) were significantly more likely to die in hospice.
Conclusion: Deaths in hospital or nursing facilities still account for nearly half of cancer or HF deaths. Although positive trends were seen with utilisation of hospice facilities in both groups, usage remains low and much remains to be achieved in both patient populations.
BACKGROUND: Considering social cognitive theory and current literature about successful advance care planning in nursing homes, sufficient knowledge and self-efficacy are important preconditions for staff to be able to carry out advance care planning in practice.
AIM: Exploring to what extent nurses' knowledge about and self-efficacy is associated with their engagement in advance care planning in nursing homes.
DESIGN: Survey study as part of a baseline measurement of a randomised controlled cluster trial (NCT03521206).
SETTING/PARTICIPANTS: Nurses in a purposive sample of 14 nursing homes in Belgium.
METHODS: A survey was distributed among nurses, evaluating knowledge (11 true/false items), self-efficacy (12 roles and tasks on 10-point Likert-type scale) and six advance care planning practices (yes/no), ranging from performing advance care planning conversations to completing advance directives.
RESULTS: A total of 196 nurses participated (66% response rate). While knowledge was not significantly associated with advance care planning practices, self-efficacy was. One unit's increase in self-efficacy was statistically associated with an estimated 32% increase in the number of practices having carried out.
CONCLUSIONS: Nurses' engagement in advance care planning practices is mainly associated with their self-efficacy rather than their knowledge. Further research is necessary to improve the evidence regarding the causal relationship between constructs. However, these results suggest that educational programmes that focus solely on knowledge might not lead to increasing uptake of advance care planning in nurses.
BACKGROUND: With a growing nursing home population suffering from chronic progressive illnesses and evolving patterns of comorbidities, end-of-life communication takes on a critical role to enable healthcare professionals to gather information about the resident's wishes for care at the end-of-life and organise the care plan accordingly.
AIM: To explore nurses' perspective about the process by which end-of-life communication impacts on the goal of end-of-life care in nursing home residents.
DESIGN: A qualitative descriptive research design based on thematic analysis was performed. Fourteen nurses involved in the care of residents during their last week of life were recruited across 13 Italian nursing homes and accounted for 34 semi-structured interviews. A combined approach of analysis that incorporated a data-driven inductive approach and a theory-driven one was adopted.
RESULTS: Twelve themes described how end-of-life communication may contribute to adjust the care plan in nursing home according to the nurses' perspective. Five antecedents (i.e. life crisis or transitions, patient-centered environment, arising the question of possible dying, quality of relationships and culture of care) influenced the establishment and quality of communication, and five attributes depicted the characteristics and potential mechanisms of end-of-life communication (i.e. healthcare professional-resident and healthcare professional-family carers communication, knowledge of family carers' preferences, knowledge of residents' preferences, family carers and residents understanding, and shared decision-making), while curative-oriented and palliative-oriented care goals emerged as consequences.
CONCLUSION: This study provides insight into the nursing perspective of end-of-life communication between healthcare professionals and bereaved family carers of nursing home residents. Several factors influenced the occurrence and quality of end-of-life communication, which contributed to the transition towards palliative-oriented care by using and improving knowledge about family cares' and resident's preferences for end-of-life care, promoting family carers and residents understanding about prognosis and treatments available, and fostering shared decision-making.
BACKGROUND: In Switzerland as in many countries, steady trend is observed in nursing homes to promote writing of advanced directives (ADs). Implementation of ADs reflects the rise in public concern for the persons' right to self-determination and informed decision. The issue of end-of-life conditions is particularly acute in situations with dementia. This article investigates how ADs interventions in nursing homes strive simultaneously to behave in line with the principles of care ethics and with the intention to respond to legally binding instructions. Healthcare to dying residents with dementia in nursing homes is interpreted in light of the Regulation theory.
METHODS: Nursing home palliative care reference nurses were contacted through questionnaire. One hundred twenty-one addresses were reached, 69 responses were collected, giving a response rate of 57%. In order to deepen the understanding, 10 semi-directive interviews were conducted in 10 different nursing facilities with 12 palliative nurses.
RESULTS: Presently, Swiss nursing homes are lacking a model of AD suitable to people with dementia. The study sheds light on dissimilarities in the purpose assigned to ADs' procedure in the different facilities. Discrepancies in end-of-life care practices reveal more the influence of structural and organisational devices specific to each setting than conflicting views on end-of-life care principles. We analyse the interpretation of the Law and its implementation in the participating NHs as compromises that could be accounted for as a form of social regulation.
CONCLUSION: Dementia accentuates the uncertainty inherent to end-of-life trajectories. The implementation of standardised procedures aimed at collecting the wishes of the person deprived of his or her discernment is source of dissonances with regard to the multiple interests involved in these care situations. In this context, the drafting of ADs during end-of-life care in NH correspond to new normative constraints requiring new collective regulation actions.