Planning End-of-Life Care for Patients with Dementia
Roles of Families and Health Professionals
Bibliographic Data
| ID | 13630217 |
|---|---|
| Authors | Charles E Gessert (St. Mary's/Duluth Clinic Health System, corresponding author), Sarah Forbe (0000-0002-8361-6390, University of Kansas Medical Center), Sarah Forbes (University of Kansas Medical Center), Mercedes Bern‐klug (0000-0001-6546-6141, University of Kansas Medical Center), Mercedes Bern-Klug (University of Kansas Medical Center) |
| Year | 2001 |
| Volume | 42 |
| Issue | 4 |
| Pages | 273-291 |
| Publication date | 2001-06-01 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | OMEGA - Journal of Death and Dying (JOURNAL) |
| Journal identifiers | ISSN: 0030-2228 • E-ISSN: 1541-3764 |
| Publisher | SAGE Publishing (PUBLISHER • US) |
| DOI | 10.2190/2mt2-5gyu-gxvv-95ne |
| PMID | 12569923 |
| OpenAlex | W2124932225 |
| Language | EN |
| Citations received | 8 |
| References cited | 37 |
We examined families' end-of-life decision making and their interactions with health professionals. Twenty-eight family members of institutionalized dementia patients participated in four focus groups. We found that participating family members were not well prepared for their decision-making roles, and that they: 1) experienced substantial burdens and loss in caring for institutionalized elders; 2) had limited understanding of the natural progression of dementing conditions; 3) were uncomfortable in setting goals for their relatives' end-of-life care; 4) had little experience with death, and were ambivalent about the anticipated death of their relative; and (5) reported that they had little substantive communication with health professionals regarding end-of-life care planning. We concluded that many of the needs of such families could be addressed through improved application of the principles of advance care planning, including regular structured discussions, involvement of surrogate decision-makers, and anticipation of clinical decisions. Health professionals should take the lead in 'normalizing' the discussion of death
Advance care planning · Ambivalence · Anticipation (artificial intelligence · Assisted suicide · Dementia · Disease · End-of-life care · Family caregivers · Focus group · Health care · Health professionals · Palliative care · Political science · Psychiatry · Sociology · Grief, Bereavement, and Mental Health · Medicine · Nursing · Palliative Care and End-of-Life Issues · Patient Dignity and Privacy · Psychology · Social Psychology · Gerontology
Memento Mori? Differences in translating perceived engagement into end-of-life preparatory activities in Germany and South Korea
A decision aid to support family carers of people living with dementia towards the end‐of‐life
Medicare Hospital Charges in the Last Year of Life
Surrogate Decision Makers' Understanding of Dementia Patients' Prior Wishes for End-of-Life Care
Problematic Integration and Family Communication about Decisions at the End of Life
Advance Care Planning in the Delivery of Adult Protective Services
Dying With Dementia
Agencies Displayed by Patients, Medical Teams, and Caregivers at the End of Life from the Perspectives of Family Members – A Qualitative Study
| Unique citing works | 8 |
|---|---|
| Citations per year | 0,44 |
| Citation span | 2008 - 2025 (18) |
| Citation velocity | recent |
| Highly cited | No |
| Citation types | Neutral: 8 |