Preferences for Care near the End of Life Scale

2001 ◽  
Author(s):  
Donna M. Gauthier ◽  
Robin D. Froman
Keyword(s):  
End Of Life ◽  
Life Scale ◽  
Preferences For 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.

Caring for people with dementia towards and at the end of life

2017 ◽  
Author(s):  
Louise Robinson
Keyword(s):  
End Of Life ◽  
Care Home ◽  
Power Of Attorney ◽  
Good Communication ◽  
People With Dementia ◽  
Suboptimal Care ◽  
Specialist Services ◽  
Old Age Psychiatry ◽  
Gp Care ◽  
Preferences For Care

Research evidence confirms that people dying with dementia receive suboptimal care compared to those with terminal cancer. Good quality end-of-life care in dementia can be achieved. It requires good communication with open and sensitive discussions about future preferences for care; advice about power of attorney, and other practical issues including support services and technology; continuity of care through a named lead GP/care-home nurse; detailed observation for signs of distress once communication has been lost; and referral to specialist services such as old-age psychiatry for behavioural problems, and palliative care for end-of-life symptom management. Most importantly, the uncertainty of the dying trajectory needs to be clearly understood by health professionals and clearly explained to family carers to help them understand the slow and often prolonged pathway to dying.

Bladder and bowel preferences of patients at the end of life: a scoping review

2020 ◽  
Vol 26 (8) ◽  
pp. 432-442
Author(s):  
Nicholas Smith ◽  
Saima Rajabali ◽  
Kathleen F Hunter ◽  
Thane Chambers ◽  
Robin Fasinger ◽  
...  
Keyword(s):  
End Of Life ◽  
Scoping Review ◽  
Patient Preferences ◽  
Symptom Management ◽  
Future Research ◽  
Bowel Symptom ◽  
Outcomes Of Care ◽  
The Many ◽  
Improving Patient Care ◽  
Preferences For Care

Background: Following patient preferences at the end of life should improve outcomes of care, yet patient preferences regarding bladder and bowel care are not often accommodated, as they are not well known in the literature. Aims: This scoping review sought to identify bladder and bowel care preferences of patients at the end of life in published literature. Methods: Papers published in or after 1997 (in English) that focused on adult preferences for bladder and bowel care at the end of life were included. Findings: Scant literature exists on preferences for bladder and bowel care for adult patients at end of life. Further investigation is warranted to arrive at a better understanding of preferences regarding bladder and bowel symptom management. Conclusions: Future research should explore if prioritising the symptoms caused by incontinence, among the many symptoms experienced at the end of life, could be achieved through careful questioning and development of a standardised tool focused on improving patient care and incorporating patient preferences for care.

Staff and family relationships in end-of-life nursing home care

2011 ◽  
Vol 18 (1) ◽  
pp. 42-53 ◽  
Author(s):  
Elisabeth Gjerberg ◽  
Reidun Førde ◽  
Arild Bjørndal
Keyword(s):  
Nursing Home ◽  
Nursing Homes ◽  
End Of Life ◽  
Family Relationships ◽  
End Of Life Care ◽  
Nationwide Survey ◽  
Nursing Home Care ◽  
Terminal Phase ◽  
Life Care ◽  
Preferences For Care

This article examines the involvement of residents and their relatives in end-of-life decisions and care in Norwegian nursing homes. It also explores challenges in these staff—family relationships. The article is based on a nationwide survey examining Norwegian nursing homes’ end-of-life care at ward level. Only a minority of the participant Norwegian nursing home wards ‘usually’ explore residents’ preferences for care and treatment at the end of their life, and few have written procedures on the involvement of family caregivers when their relative is in the terminal phase. According to the respondents, most staff seem to comfort relatives well. However, several challenges were described. The study revealed a need for better procedures in the involvement of residents and relatives in nursing home end-of-life care. The findings emphasize a need to strengthen both the involvement of nursing home physicians and staff communication skills.

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