Palliative Care in Dementia: Educating Families, Nursing Staff and Physicians About Palliative Care in Advanced Dementia
Research Partners: National Core for Neuroethics, UBC Faculty of Medicine, Vancouver (Canada), Alzheimer Society of Canada (2003), Réseau Québécois de la Recherche sur le Vieillissement (2009), and CIHR (2011)
Death with dementia is increasingly common. Although predicting the journey of a patient with advanced dementia is difficult, it is an incurable life-limiting illness for which palliative care for the patient is often appropriate. Dementia patients are otherwise at risk of overtreatment with burdensome and possibly non-beneficial interventions.
In advanced dementia, families have generally an important and challenging role in medical decision making, especially in the absence of written or verbal advance directives. To help them participate actively in those decisions, families should receive timely information. For instance, they need to understand the course of dementia, possible complications and therapeutic options. Families may also want clarifications about their role in the decision-making process, especially if withholding or withdrawing life prolonging measures are considerations.Further, being prepared for death and what to expect at the end of life can be important for families’ own wellbeing. On the other hand, physicians and nurses also need training regarding palliative care in dementia in order to feel at ease when presenting the palliative care option to families.
Knowledge Translation Strategies Used
To educate families of nursing home residents, Dr. Arcand developed a booklet in French and English, in accordance with recent literature and current expert opinions. It was reviewed and improved following comments by recently bereaved family members, fellow clinicians, and communication experts.
The booklet answers frequently asked questions by families about trajectory of the disease, clinical issues, decision making processes, symptom management of end of life in dementia, what to expect when patients are dying, and the grieving process. The booklet provides valuable information so decision-makers can better understand the risks and benefits of care options and actively participate in decision-making. It reassures family members who opt for comfort care that this is an acceptable option, and considered the most appropriate approach in advanced dementia both from a clinical and an ethical perspective. Although respectful of others’ views, values, and beliefs, the booklet’s premise is that providing comfort is the main duty in advanced dementia and that life prolonging therapy may not only be futile but also prolong suffering. Therefore, counselling towards a “low-tech,high touch” approach is offered for issues such as tube feeding and intravenous fluids for irreversible nutrition/hydration problems and for the management of end-stage pneumonia.
The second strategy is to educate physicians and nursing staff about palliative care and advanced dementia. The training material has been developed and is presently being tested in a research project supported by a CIHR grant. This educational material will be available in 2013.The implementation strategy for nursing homes is short training sessions and ongoing support by a more extensively trained “champion” local nurse. Finally, an article about the relevance of palliative care in advanced dementia and the proper management of symptoms in this context is in preparation. It will be submitted shortly for publication in Canadian Family Physician – Care of the Elderly series.
Evaluation & Outcomes
Studies have already shown that the booklet is well accepted by family members and practitioners in various Canadian settings (Sherbrooke, Quebec and the Hamilton region, Ontario). Results from a pilot study in Montreal, which used a validated instrument “After death bereaved family interview”, also suggested that the booklet improves communication between family and staff, as well as satisfaction with care. In addition, the booklet has been accepted by the World Health Organization as an example of better practice in the field of geriatric palliative care.
The CIHR sponsored research has started in 4 Nursing Homes (2 experimental and 2 control/usual care). Validated instruments are being used to assess the main study outcomes, including patient comfort in the last 3 months of life, patient comfort in the last week and family satisfaction with care. It will hopefully demonstrate clinically significant benefits such as better comfort for residents in the last months of life, better comfort in the last week of life and better family satisfaction with care.
The booklet was written in collaboration with Chantal Caron PhD. René Verreault MD PhD from Laval University, Quebec is the co-principal investigator on the CIHR project.
Training material for the project was prepared during Dr. Arcand’s tenure as a Canadian Dementia Knowledge Translation Network (CDKTN) Visiting Scholar based at the National Core for Neuroethics at University of British Columbia, Canada.
Arcand M., Monette J., Monette M., Sourial N., Fournier L., Gore B., Bergman H. (2009). Educating nursing home staff about the progression of dementia and the comfort care option: Impact on family satisfaction with end-of-life care. Journal of the American Medical Directors Association, 10(1):50-55.
Caron C., Arcand M., Griffith J. (2005). Creating a partnership with families in decision-making for end-of-life care in Alzheimer disease: The perspective of family caregivers. Dementia, 4:113-116.
Van der Steen J.T., Hertogh C., de Graas T., Nakanish M., Toscani F., Arcand M. (2013). Translation and cross-cultural adaptation of a family booklet on comfort care in dementia: Sensitive topics revised before implementation. Journal of Medical Ethics, 39:104-109. (epub) doi:10.1136/medethics-2012-100903
Van der Steen J.T., Arcand M., et al. (2012). A family booklet about comfort care in advanced dementia: Three country evaluation. Journal of the American Medical Directors Association, 13(4):368-375.
Van der Steen J.T., et al. (2011). Physicians’ and nurses’ perceived usefulness and acceptability of a family information booklet about comfort care in advanced dementia. Journal of Palliative Medicine, 14:614-22.
World Health Organization (2011). Palliative care for older people: Better practices. Hall S., Petkova, H., Tsouros A.D., Costantini, M., Higginson, H.J., (Eds.) Copenhagen, Denmark: World Health Organization.