scholarly journals Practitioners’ perceptions of acceptability of a question prompt list about palliative care for advance care planning with people living with dementia and their family caregivers: a mixed-methods evaluation study

BMJ Open ◽  
2021 ◽  
Vol 11 (4) ◽  
pp. e044591
Author(s):  
Jenny T van der Steen ◽  
Sten Heck ◽  
Carla CM Juffermans ◽  
Mirjam Marjolein Garvelink ◽  
Wilco P Achterberg ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Evaluation Study ◽  
Care Planning ◽  
Life Care ◽  
Mixed Methods Evaluation ◽  
Advance Care ◽  
Question Prompt

ObjectivesIn oncology and palliative care, patient question prompt lists (QPLs) with sample questions for patient and family increased patients’ involvement in decision-making and improved outcomes if physicians actively endorsed asking questions. Therefore, we aim to evaluate practitioners’ perceptions of acceptability and possible use of a QPL about palliative and end-of-life care in dementia.DesignMixed-methods evaluation study of a QPL developed with family caregivers and experts comprising a survey and interviews with practitioners.SettingTwo academic medical training centres for primary and long-term care in the Netherlands.ParticipantsPractitioners (n=66; 73% woman; mean of 21 (SD 11) years of experience) who were mostly general practitioners and elderly care physicians.OutcomesThe main survey outcome was acceptability measured with a 15–75 acceptability scale with ≥45 meaning ‘acceptable’.ResultsThe survey response rate was 21% (66 of 320 participated). The QPL was regarded as acceptable (mean 51, SD 10) but 64% felt it was too long. Thirty-five per cent would want training to be able to answer the questions. Those who felt unable to answer (31%) found the QPL less acceptable (mean 46 vs 54 for others; p=0.015). We identified three themes from nine interviews: (1) enhancing conversations through discussing difficult topics, (2) proactively engaging in end-of-life conversations and (3) possible implementation.ConclusionAcceptability of the QPL was adequate, but physicians feeling confident to be able to address questions about end-of-life care is crucial when implementing it in practice, and may require training. To facilitate discussions of advance care planning and palliative care, families and persons with dementia should also be empowered to access the QPL themselves.

scholarly journals Palliative Care With Dementia and Family Caregiver Involvement (A Collaborative Symposium between the Hospice, Palliative, and End-of-Life Care and Nursing Care of Older Adults Interest Groups)

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 786-786
Author(s):  
Jenny van der Steen ◽  
Christopher Johnson ◽  
Sheryl Zimmerman
Keyword(s):  
Palliative Care ◽  
Interest Groups ◽  
End Of Life ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

Abstract This collaborative symposium offered by the Hospice, Palliative, and End-of-Life Care and Nursing Care of Older Adults Interest Groups addresses palliative care including advance care planning considerations for family caregivers and persons with dementia. Family caregivers may need information about palliative and end-of-life care that is specific to the person, the situation or the stage of dementia. This symposium shows information needs also differ by country and setting. Conversations about symptoms, and about current and end-of-life treatment preferences need support from healthcare professionals. The symposium shows results of a study on video recordings with end-of-life preferences and how, as a stand-alone, they may not inform palliative care practice, and integration of information sources for advance care planning is needed. We will also show that a question prompt list with examples of questions to encourage family caregivers to ask healthcare professionals can and should have different contents for different countries as the content reflects socio-cultural differences. In more studies, participants clearly neede information on the disease trajectory and available services. Such needs go beyond need for information on pain and other symptoms, as family caregivers often appreciate opportunities for social activities for persons with dementia. A decision aid study shows that persons with dementia and family caregivers can participate in advance care planning conversations when supported by the right tools. We argue that local client participation is important when developing tools. Overall, the symposium highlights the need for tailored tools to support face-to-face conversations with all stakeholders to encourage person-centred caregiving.

scholarly journals 309 The Growing Need for Advance Care Planning Discussion: An Admission to Die for?

2019 ◽  
Vol 48 (Supplement_3) ◽  
pp. iii17-iii65
Author(s):  
Aoife McFeely ◽  
Cliona Small ◽  
Susan Hyland ◽  
Jonathan O'Keeffe ◽  
Graham Hughes ◽  
...  
Keyword(s):  
Palliative Care ◽  
Older People ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Advance Care ◽  
Early Decision ◽  
One Year ◽  
The Right

Abstract Background Older people living in nursing homes (NHs) are among the most frail and vulnerable in our community. Over the last 5 years, a review of our local NH admission database revealed a 7% increase in the number of unscheduled hospital attendances from NHs (1015 in 2012/13 vs 1435 in 2016/17). Additionally we have seen an increase in the number of NH residents experiencing ≥2 unscheduled re-admissions within one year (21.1% in 2012/13 vs 30.45% in 2016/17). Our aim was to examine the proportion of patients from NHs who died within 24 hours of presentation, prompting a review of methods that could prevent inappropriate hospital transfers and promoting dignified and comfortable end of life care. Methods A prospective database was collected between 01/01/2016 - 31/12/2017. This recorded all emergency admissions of older people from NHs recording length of stay, readmission rates and mortality. The data was retrospectively analysed, looking specifically at patients who died in hospital ≤ 24 hours Results Of 1435 ED admissions, 49 patients (3.4%) died in hospital ≤ 24 hours after presentation. Of these, 31 patients (61%) died in palliative care suites. 8 patients (16.3%) died in the ED. Conclusion A small number of NH residents presenting to our hospital died within 24 hours. A large proportion of these patients died in a palliative care suite, suggesting poor prognosis was identified rapidly after presentation. We wonder if some of these hospital transfers were avoidable and could certain patients have experienced less disruptive deaths in their NHs? Advanced Care Planning can be difficult for all involved. However, it plays an essential role in ensuring people receive the right care, at the right time, in the right place, from the right team. We support the collaborative roles of a palliative care CNS or Geriatric ANP, and integration with NH Outreach services, to facilitate early decision-making and promote better end of life care.

IMPROVING END-OF-LIFE CARE AND ADVANCE CARE PLANNING FOR FRAIL OLDER ADULTS IN CANADA

2018 ◽  
pp. 1-7
Author(s):  
J. Downar ◽  
P. Moorhouse ◽  
R. Goldman ◽  
D. Grossman ◽  
S. Sinha ◽  
...  
Keyword(s):  
Older Adults ◽  
Palliative Care ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Frail Older Adults ◽  
Key Concepts ◽  
Advance Care

We present five Key Concepts that describe priorities for improving end-of-life care for frail older adults in Canada, and recommendations based on each Key Concept. Key Concept #1: Our end-of-life care system is focused on cancer, not frailty. Key Concept #2: We need better strategies to systematically identify frail older adults who would benefit from a palliative approach. Key Concept #3: The majority of palliative and end-of-life care will be, and should be, provided by clinicians who are not palliative care specialists. Key Concept #4: Organizational change and innovative funding models could deliver far better end-of-life care to frail individuals for less than we are currently spending. Key Concept #5: Improving the quality and quantity of advance care planning for frail older adults could reduce unwanted intensive care and costs at the end of life, and improve the experience for individuals and family members alike.

Outpatient palliative care at a tertiary cancer center: Perceptions, pathways, and pitfalls.

2012 ◽  
Vol 30 (34_suppl) ◽  
pp. 28-28
Author(s):  
Kavitha Ramchandran ◽  
Sandy Trieu ◽  
Stephanie Harman ◽  
Judy Passaglia ◽  
Janet Rodriguez ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Cancer Center ◽  
Care Planning ◽  
Life Care ◽  
Code Status ◽  
Wide Range ◽  
Advance Care

28 Background: To describe an outpatient palliative care program at a quaternary cancer center- Stanford Cancer Institute. Outpatient palliative care (PC) programs are still in their nascency. Best practices are still being developed and key performance metrics are being delineated. This is a description of Stanford Cancer Institute outpatient PC program. Methods: Observational study of the first six months of encounters to the outpatient PC program. Description of potential barriers to launch and growth, as well as description of resources required for continued success. Data evaluated included program volume, referral patterns, advance care planning, symptom assessment and team structure as collected by the clinical team. Results: Initial barriers to program initiation included lack of funding and infrastructure. Additional barriers included coordination between teams, flow of care (patients late for next appointments), and cultural perceptions of palliative care as equal to end of life care. There are 32 referring practitioners to the program. Over the first six months the outpatient PC program has seen growth with volume increasing from 10 consults per month to 26 consults per month for a total of 60 patients. At the time of initial consult, 11 of the 60 patients seen had an advance directive. Only 1 patient had a physician order for life sustaining treatment (POLST). Code status was documented in 21 of the 60 patients. Conclusions: Our program had multiple barriers to launch: perceptions that palliative care equaled end of life care, lack of infrastructure and funding, and difficulty with coordination between teams. With administrative support the program secured funding, developed infrastructure with the assistance of IT, Cancer Center administration, and Care Coordination. Consults now come from a wide range of providers. Based on preliminary data indicating a very low percentage of completion of these tasks by patients on initial consult there is need for outpatient palliative care for advance care planning. Future growth will include continued penetration of the cancer center, increasing volume of consults, and additional assessments of patient satisfaction, symptom improvement, and hospital utilization.

scholarly journals Relating to the end of life through advance care planning: Expectations and experiences of people with dementia and their family caregivers

Dementia ◽  
2022 ◽  
pp. 147130122110663
Author(s):  
Natashe Lemos Dekker ◽  
Sascha R Bolt
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Fine Tuning ◽  
Care Planning ◽  
Life Care ◽  
People With Dementia ◽  
Advance Care ◽  
Life Care Planning

Background Dementia is widely considered a progressive condition associated with changes in cognitive capacities, which promotes the idea that people with dementia need to anticipate end-of-life care preferences. There is a growing body of interventions meant to support advance care planning (ACP) for people with dementia and their families. However, a deeper understanding of their experiences and expectations regarding planning the end of life is needed to inform ethically sound and person-centered ACP. This study explores how end-of-life care planning for people with dementia is experienced and perceived in practice. Methods We conducted a secondary analysis of qualitative data from in-depth interviews and ethnographic fieldwork. Participants included people with dementia living in the community or in nursing homes, family caregivers, and professional caregivers. During reflective sessions, the researchers moved back and forth between their original data and overarching topics related to ACP. Both performed deductive coding to filter relevant information from their data. Ongoing discussions allowed for the fine-tuning of themes. Results End-of-life care planning for people with dementia can encompass a paradox of control. While it may foster a sense of being in control, it may also feel like relinquishing control over future situations. It raises concerns regarding responsibility, as present, former and future wishes may not align. Family caregivers are often responsible for concrete end-of-life decision-making, prompting them to weigh previous wishes against present situations. Further, people with dementia may wish to focus on the present and distance themselves from the future. Discussion Advance decisions about end-of-life care are often decontextualized and people may find it difficult to oversee their future conditions and preferences. The widely recognized purpose of ACP to exert control over end-of-life care may need revision to match the needs of people with dementia while they are coping with their condition and an uncertain future.

scholarly journals End of Life Care and Family Issues and their Concerned at Palliative Care at Bhaktapur Cancer Hospital

2019 ◽  
Vol 4 (3) ◽  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Life Threatening Illness ◽  
Family Issues ◽  
Life Threatening ◽  
Advance Care ◽  
Life Threatening Event

palliative care also focuses on issues beyond end of life care such as care for those with cronic illness and potentially life threatening illness in remission. In addition end of life care focuses on a number of issues beyond the scope of palliative care such as advance care planning which should be under taken even by healthy and young persons who may experiance an unanticipated acute, life threatening event such as an accident.

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