scholarly journals How Do Persons with Young and Late Onset Dementia Die?

2021 ◽  
pp. 1-10
Author(s):  
Carola Roβmeier ◽  
Julia Hartmann ◽  
Lina Riedl ◽  
Bianca Dorn ◽  
Julia Fischer ◽  
...  
Keyword(s):  
End Of Life ◽  
Late Onset ◽  
Emotional Symptoms ◽  
Term Care ◽  
Quality Of Dying ◽  
Somatic Comorbidities ◽  
Advance Care ◽  
Germany Objective ◽  
Late Onset Dementia

Background: End of life symptoms and symptom management as well as the quality of dying (QoD) of persons with advanced dementia (PWAD) have not yet been systematically studied in Germany. Objective: 1) To investigate symptoms, treatment and care at the end of life, advance care planning, and circumstances of death of recently deceased PWAD; 2) To determine whether there are differences between young and late onset dementia (YOD and LOD). Methods: The study was performed in the context of the project EPYLOGE (IssuEs in Palliative care for persons in advanced and terminal stages of Young-onset and Late-Onset dementia in Germany). Closest relatives of recently deceased patients with advanced YOD (N = 46) and LOD (N = 54) living at home or in long term care were interviewed. Results: Circumstances of death, symptoms, and treatment appeared to be similar between YOD and LOD, except that persons with LOD had significantly more somatic comorbidities and were admitted to hospital in the last three months of life more often than persons with LOD. At end of life, 60%of PWAD appeared to be “at peace”. Difficulty swallowing, gurgling, shortness of breath, and discomfort were observed most frequently. Large interindividual differences in suffering and QoD were present. Determinants of QoD were not identified. Conclusion: Our findings suggest that low QoD was caused by inadequate recognition and/or insufficient treatment of burdensome physical and emotional symptoms. PWADs’ needs should be assessed regularly, and strategies focusing on treatment and implementing support for both the patient and caregiver must be established.

Providing Medical Care at the End of Life – A Cross-Sectional Study of Long-Term Care Facilities in Switzerland

Praxis ◽  
2021 ◽  
Vol 110 (15) ◽  
pp. 831-838 ◽  
Author(s):  
Sophie Pautex ◽  
Martin Schneider ◽  
Pierre-Alain Charmillot ◽  
Catherine Bassal ◽  
Émilie Morgan de Pauly ◽  
...  
Keyword(s):  
End Of Life ◽  
Cross Sectional Study ◽  
Specific Knowledge ◽  
Cross Sectional ◽  
Term Care ◽  
Longterm Care ◽  
Quality Of Dying ◽  
Assess Quality

Abstract. The provision of high-quality palliative care in nursing homes (NHs) requires specific knowledge and skills among health professionals. The aims of the study were to assess quality of care during the dying process and quality of end-of-life of NH residents in the French and Italian parts of Switzerland. 90 residents died during the study period (mean age 88.7 years). Mean of the “End-of-Life in Dementia Scales – Comfort Assessment while Dying” score was 35.7 (theoretical range 14–42). Mean of the “Quality of Dying in LongTerm Care” score was 38.3 (theoretical range 11–55). In conclusion, the quality of dying and quality of end-of-life care in NH studied can be improved improved, in particular on the anticipation level. Die Bereitstellung einer qualitativ hochwertigen Palliativversorgung in Pflegeheimen erfordert spezifische Fähigkeiten. Ziel der Studie war es, die Qualität der Sterbebegleitung von Bewohnern, die in der französisch- und italienischsprachigen Schweiz in Pflegeheimen sterben, zu bewerten. 90 Bewohner starben während der Studiendauer (Durchschnittsalter 88,7 Jahre). Der mittlere Wert der «End-of-Life in Dementia Scales – Comfort Assessment while Dying» lag bei 35,7 (theoretischer Bereich 14–42). Der Mittelwert der Skala «the Quality of Dying in LongTerm Care» lag bei 38,3 (theoretischer Bereich 11–55). Zusammenfassend lässt sich sagen, dass die Qualität der Versorgung am Lebensende in den untersuchten Pflegeheimen verbessert werden kann, insbesondere im Hinblick auf die Antizipation.

Challenges in implementing an advance care planning programme in long-term care

2016 ◽  
Vol 24 (1) ◽  
pp. 87-99 ◽  
Author(s):  
Ciara McGlade ◽  
Edel Daly ◽  
Joan McCarthy ◽  
Nicola Cornally ◽  
Elizabeth Weathers ◽  
...  
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Long Term Care ◽  
Care Plan ◽  
Care Planning ◽  
Life Care ◽  
Term Care ◽  
Advance Care

Background: A high prevalence of cognitive impairment and frailty complicates the feasibility of advance care planning in the long-term-care population. Research aim: To identify challenges in implementing the ‘Let Me Decide’ advance care planning programme in long-term-care. Research design: This feasibility study had two phases: (1) staff education on advance care planning and (2) structured advance care planning by staff with residents and families. Participants and research context: long-term-care residents in two nursing homes and one community hospital. Ethical considerations: The local research ethics committee granted ethical approval. Findings: Following implementation, over 50% of all residents had completed some form of end-of-life care plan. Of the 70 residents who died in the post-implementation period, 14% had no care plan, 10% (with capacity) completed an advance care directive and lacking such capacity, 76% had an end-of-life care plan completed for them by the medical team, following discussions with the resident (if able) and family. The considerable logistical challenge of releasing staff for training triggered development of an e-learning programme to facilitate training. Discussion: The challenges encountered were largely concerned with preserving resident’s autonomy, avoiding harm and suboptimal or crisis decision-making, and ensuring residents were treated fairly through optimisation of finite resources. Conclusions: Although it may be too late for many long-term-care residents to complete their own advance care directive, the ‘ Let Me Decide’ programme includes a feasible and acceptable option for structured end-of-life care planning for residents with variable capacity to complete an advance care directive, involving discussion with the resident (to the extent they were able) and their family. While end-of-life care planning was time-consuming to deliver, nursing staff were willing to overcome this and take ownership of the programme, once the benefits in improved communication and enhanced peace of mind among all parties involved became apparent in practice.

scholarly journals Applying the Knowledge-to-Action Framework to Engage Stakeholders and Solve Shared Challenges with Person-Centered Advance Care Planning in Long-Term Care Homes

2021 ◽  
pp. 1-11
Author(s):  
George A. Heckman ◽  
Veronique Boscart ◽  
Patrick Quail ◽  
Heather Keller ◽  
Clare Ramsey ◽  
...  
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
Long Term Care ◽  
Sufficient Information ◽  
Care Planning ◽  
Term Care ◽  
Health Crisis ◽  
Knowledge To Action ◽  
Advance Care

Abstract As they near the end of life, long term care (LTC) residents often experience unmet needs and unnecessary hospital transfers, a reflection of suboptimal advance care planning (ACP). We applied the knowledge-to-action framework to identify shared barriers and solutions to ultimately improve the process of ACP and improve end-of-life care for LTC residents. We held a 1-day workshop for LTC residents, families, directors/administrators, ethicists, and clinicians from Manitoba, Alberta, and Ontario. The workshop aimed to identify: (1) shared understandings of ACP, (2) barriers to respecting resident wishes, and (3) solutions to better respect resident wishes. Plenary and group sessions were recorded and thematic analysis was performed. We identified four themes: (1) differing provincial frameworks, (2) shared challenges, (3) knowledge products, and 4) ongoing ACP. Theme 2 had four subthemes: (i) lacking clarity on substitute decision maker (SDM) identity, (ii) lacking clarity on the SDM role, (iii) failing to share sufficient information when residents formulate care wishes, and (iv) failing to communicate during a health crisis. These results have informed the development of a standardized ACP intervention currently being evaluated in a randomized trial in three Canadian provinces.

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

2022 ◽  
Vol 22 (1) ◽  
Author(s):  
Rhéda Adekpedjou ◽  
George A. Heckman ◽  
Paul C. Hébert ◽  
Andrew P. Costa ◽  
John Hirdes
Keyword(s):  
End Of Life ◽  
Long Term Care ◽  
Care Home ◽  
Do Not Resuscitate ◽  
Multistate Models ◽  
Term Care ◽  
Health Trajectories ◽  
Advance Care Directives ◽  
Advance Care

Abstract 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.

Selecting the Best Instruments to Measure Quality of End-of-Life Care and Quality of Dying in Long Term Care

2013 ◽  
Vol 14 (3) ◽  
pp. 179-186 ◽  
Author(s):  
Mirjam C. van Soest-Poortvliet ◽  
Jenny T. van der Steen ◽  
Sheryl Zimmerman ◽  
Lauren W. Cohen ◽  
David Reed ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Long Term Care ◽  
Life Care ◽  
Term Care ◽  
Quality Of Dying

Changing Focus: End-of-Life Care in a New York State Managed Long-Term Care Program

2017 ◽  
Vol 38 (10) ◽  
pp. 1371-1390
Author(s):  
Mary Ann Meeker ◽  
Deborah P. Waldrop
Keyword(s):  
End Of Life ◽  
Long Term Care ◽  
Qualitative Content Analysis ◽  
New York State ◽  
The United States ◽  
Care Providers ◽  
Term Care ◽  
Quality Of Dying

In the United States, managed long-term care programs offer a noninstitutional approach to meeting the needs of increasing numbers of frail elders. Providing services that support both quality of life and quality of dying poses unique challenges. Using a qualitative descriptive design, we explored these challenges from the perspectives of care providers. Themes were identified using qualitative content analysis techniques applied to transcripts of 33 semistructured interviews. Professionals comprising an interdisciplinary care team and home health aide direct care providers described cues by which they identified movement into the end-of-life phase, their understandings of how care changed, and their concerns and recommendations for improvement. When the changing care needs could be met, a “good death” ensued, but that was not always possible. Managed long-term care programs are called upon to develop the capacity to integrate the phase of dying into the full story of each life for which they care.

scholarly journals Me & My Wishes Videos: Congruence of End-of-Life Preferences Between Residents With Dementia, Family, and Staff

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 786-786
Author(s):  
Sarah Neller ◽  
Gail Towsley ◽  
Bob Wong
Keyword(s):  
End Of Life ◽  
Life Support ◽  
Medical Intervention ◽  
Treatment Preferences ◽  
Term Care ◽  
Comparison Groups ◽  
Preferences For Care ◽  
Baseline Health ◽  
Support Family

Abstract Me & My Wishes are person-centered videos of long term care residents (ages 65-95) living with dementia discussing their preferences for care including end-of-life (EOL) medical intervention. We evaluated the congruence of six EOL treatment preferences between the residents’ personal videos, medical records (e.g. advance directive), and surveys of family (n= 49) and staff (n=37; 118 responses) knowledge of their preferences. Results were highly discordant. Treatments with the most discordance when comparing videos to comparison groups were IV fluids (medical record, 57.1%) and life support (family, 69.4%; staff, 82.2%). Residents reported EOL treatments were considered acceptable if they were temporary, would relieve suffering, or enabled a return to baseline health. These caveats may lead to discordance if they are not conveyed to family or staff. Our findings highlight the need for conversations among residents living with dementia and their caregivers to improve understanding, congruence and adherence of resident EOL preferences.

scholarly journals Cost of shifting from healthcare to long-term care in later life across major diseases: analysis of end-of-life care during the last 24 months of life

2018 ◽  
Vol 13 (1) ◽  
pp. 40-47 ◽  
Author(s):  
Tomoko Terada ◽  
Keiko Nakamura ◽  
Kaoruko Seino ◽  
Masashi Kizuki ◽  
Naohiko Inase
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Long Term Care ◽  
Later Life ◽  
Life Care ◽  
Term Care

scholarly journals What Are Staff Perceptions About Their Current Use of Emergency Departments for Long-Term Care Residents at End of Life?

2017 ◽  
Vol 28 (6) ◽  
pp. 692-707 ◽  
Author(s):  
Sharon Kaasalainen ◽  
Tamara Sussman ◽  
Pamela Durepos ◽  
Lynn McCleary ◽  
Jenny Ploeg ◽  
...  
Keyword(s):  
End Of Life ◽  
Long Term Care ◽  
Hospital Staff ◽  
Clinical Expertise ◽  
Staff Perceptions ◽  
Term Care ◽  
Reflective Process ◽  
Hospital Deaths ◽  
Chart Audits

The goal of this study was to examine current rates of resident deaths, Emergency Department (ED) use within the last year of life, and hospital deaths for long-term care (LTC) residents. Using a mixed-methods approach, we compared these rates across four LTC homes in Ontario, Canada, and explored potential explanations of variations across homes to stimulate staff reflections and improve performance based on a quality improvement approach. Chart audits revealed that 59% of residents across sites visited EDs during the last month of life and 26% of resident deaths occurred in hospital. Staff expressed surprise at the amount of hospital use during end of life (EOL). Reflections suggested that clinical expertise, comfort with EOL communication, clinical resources (i.e., equipment), and family availability for EOL decision making could all affect nondesirable hospital transfers at EOL. Staff appeared motivated to address these areas of practice following this reflective process.

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