Original studyEducating Nursing Home Staff About the Progression of Dementia and the Comfort Care Option: Impact on Family Satisfaction with End-of-Life Care
Section snippets
Study Design
A pre-post study was conducted to compare levels of satisfaction pre- and post-intervention (Figure 1). The pre-intervention group was composed of close relatives of residents who died in the context of advanced dementia between January 1 and August 31, 2005. The post-intervention group was based on deaths occurring between January 1 and August 31, 2006. The intervention, composed of an educational program and a booklet for staff, was implemented between September and December 2005. In January
Results
The number of deaths that occurred in the context of advanced dementia at MGC was 71 in the pre-intervention group and 56 in the post-intervention group. Table 1 describes the selection process for contact persons. The number of persons that could be reached by phone among contacts of eligible decedents in the pre- and post-intervention was 45/61 and 35/52 respectively. The participation rate was 60% for both groups (27/45 and 21/35). The main reason expressed for refusal to participate was
Discussion
An educational program for nursing staff and physicians that focuses on the option of comfort care for advanced NH residents with dementia is an innovative intervention. Our pilot program is also a rare palliative care NH intervention where measurement with a validated instrument was used to assess an important clinical outcome. The educational program appears to have had an effect on family satisfaction with care in many aspects. The most notable improvement was in the area of communication
Conclusion
Despite the absence of statistically significant results, the results of this pilot study are encouraging in that we found indications that educational strategies for staff and families, including an information booklet on comfort care, may have improved family satisfaction with end-of-life care. The educational program and the content of the booklet were generally well accepted by the doctors and nursing staff. Our relatively simple intervention appears to have facilitated communication
Acknowledgments
The authors thank the Foundation Maimonides Geriatric Centre (MGC); Barbra Gold, MGC Executive Director; and Lucie Tremblay, Director of Nursing and Clinical Services, for their continuous support. Thanks also to Deborah Scipio for gathering information from medical records and to Eva Jeliazkova, MD, research assistant. Finally thanks to Jenny van der Steen, PhD for her suggestions to improve the manuscript. There is no conflict of interest to report for this project.
References (38)
- et al.
Improving communication among attending physicians, long-term care facilities, residents and resident's families
J Am Med Dir Assoc
(2004) - et al.
Judging the quality of care at the end-of-life: Can proxies provide reliable information?
Soc Sci Med
(2003) - et al.
Validation of toolkit after death bereaved family member interview
J Pain Symptom Manage
(2001) The emotional context facing nursing home resident's families: A call for role reinforcement strategies from nursing homes and the community
J Am Med Dir Assoc
(2008)Dementia and neurodegenerative diseases
- et al.
Palliative care for patients with dementia
- et al.
A national study of the location of death for older persons with dementia
J Am Geriatr Soc
(2005) - et al.
Ethical aspects of decision-making in demented patients: a report from the Netherlands
Alzheimer Dis Assoc Disord
(1996) - et al.
Controversies in ethics in long-term care
(1995) - et al.
Hospice approach to the treatment of patients with advanced dementia of the Alzheimer type
JAMA
(1986)
Older person's opinions about life-sustaining procedures in the face of dementia
Arch Fam Med
Nursing home to emergency room?The troubling last transfer
The Hastings Cent Re
Advance care planning and the relevance of a palliative care approach in dementia
Age Ageing
Treating people with dementia: When is it okay to stop?
End-of-life care in US Nursing Homes: A review of the evidence
J Am Med Dir Assoc
A systematic review of the scientific evidence for the efficacy of a palliative care approach in advanced dementia
Int Psychogeriatr
Discomfort in nursing home patient with severe dementia in whom artificial nutrition and hydration is forgone
Arch Int Med
Pneumonia: The demented patient's best friend?Discomfort after starting or withholding antibiotic treatment
J Am Geriatr Soc
Barriers to excellent end-of-life care for patients with dementia
J Gen Intern Med
Cited by (63)
Patient- and Caregiver-Reported Assessment Tools for Palliative Care: Summary of the 2017 Agency for Healthcare Research and Quality Technical Brief
2017, Journal of Pain and Symptom ManagementDementia prevention, intervention, and care
2017, The LancetCitation Excerpt :Good person-centred care requires a whole-person approach and several multicomponent complex interventions and pathways have been developed. Training and educational programmes on end-of-life care for nursing home staff improve knowledge and increase bereaved family members' satisfaction with end-of-life care.587,588 Research has focused on specific interventions, such as pain management, or when not to treat—eg, with antibiotics—rather than active palliative interventions.589
The relationship between caregivers' perceptions of end-of-life care in long-term care and a good resident death
2020, Palliative and Supportive Care
This project was financially supported by Foundation Maimonides Geriatric Centre.