End-of-Life Care for Individuals With Dementia: Keeping Goals of Care in Mind
They say one does not die from dementia, but this is not exactly true. Alzheimer disease (AD) and other neurodegenerative dementias are terminal illnesses.1 People live with these conditions for years, slowly declining in cognitive abilities and function. As these diseases progress into the latter stages, there are physical changes that affect the motor system (ie, decreased walking, increased falls, swallowing difficulty) and the immune system (ie, more frequent infections). The person with dementia sleeps more and more of the day, speech or verbal output is minimum, and they typically eat less.1,2 Death is inevitable, and the conversations about treatment can become challenging, especially when there has not been prior discussion and consideration of these issues.
Ongoing Conversations
The 2 hardest conversations with patients and family members are at the beginning, when a diagnosis is shared, and at the end of the disease course. But, the conversation about end-of-life care should be not a one-time event. Ideally, it should start at the time of diagnosis and continue throughout the course of the disease. When patients are in the early stage and able to express their wishes, it is important that opportunities be provided for them to do so. Patients should be encouraged to set their own goals by expressing them verbally to family members and in writing as part of an advanced directive. They should contribute to advanced care planning where and whenever possible.
End-of-life care decisions become more complicated for families and caregivers if the dying person has not expressed the kind of care he or she would prefer. Both patients and family members newly diagnosed with AD or another dementia often cannot imagine the later stages of the disease. Ongoing conversations about “what if” and “when” should be considered part of routine care. Dementing illnesses can last for years, so there are usually multiple interactions and opportunities with providers in the medical system for these conversations. The excuse given too often is lack of time. The reality is these are hard conversations, difficult to initiate, and uncomfortable for many providers who lack experience, training, and skills to help patients and families navigate in this area. But there is a growing body of resources to help patients, families, and providers that can assist in these conversations, including continuing education courses for providers, and webinars, books, and internet sites for patients and families.
Consider Individuals’ Goals of Care and Quality of Life
Quality of life is an important issue when making health care decisions for people with dementia. When making care decisions for someone else near the end of life, one must consider the individual’s goals of care and weigh the benefits, risks, and side effects of the treatment. Treatment decisions may be based on a person’s comfort at one end of the spectrum and extending life or maintaining abilities for a little longer at the other. Often, no one decision is inherently “right” or “wrong”; the value of the decision is based on the context of the person’s medical condition and their wishes. Helping families and caregivers to understand the complexities of these issues throughout the course of the disease should be part of what medical providers routinely do as part of dementia care.
Ethical questions abound at end of life and are intensified in the patient with dementia. When does treatment become torture? What is life-prolonging, and when should a life no longer be prolonged? With dementia, a person’s body may continue to be physically healthy while his or her thinking and memory are deteriorating. Difficult decisions about how treatments that maintain physical health, such as installing a pacemaker or operating on a fractured hip from a fall, fit within the values of the patient, their expressed wishes, or the care plan are easier to make when these issues have been openly discussed at an earlier time.
Palliative Care for Persons With Dementia
Patients with advanced dementia and their caregivers are faced with a range of physical and psychosocial needs at the end of life. Palliative care and hospice should be considered as part of the continuum of care for patients with dementia, whether living at home, in assisted living, or at a nursing facility. Hospice, despite its benefits, is underutilized for advanced dementia patients, regardless of setting. The number of patients with dementia receiving hospice care continues to grow but remains low with only 13% of hospice patients in 2015 having a dementia as their primary diagnosis.3 Providers often do not consider this option, and families may be reluctant to do so due to denial about the patient’s condition, and, in some cases, hospice personnel may have limited experience caring for end-stage dementia patients.
Conclusion
It is important that providers recognize that AD and other dementias require care plans that anticipate a terminal phase and communicate this to patients and families throughout the course of the disease. In addition, incorporation of palliative care and hospice into discussions of end-of-life care options should be a routine part of dementia care discussions.
References
1. Mitchell SL, Teno JM, Kiely DK, et al. The clinical course of advanced dementia. N Engl J Med. 2009;361(16):1529-1538.
2. Alzheimer’s Society. Symptoms and memory in the later stages of dementia. https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/how-dementia-progresses/symptoms-memory. Accessed September 21, 2018.
3. National Hospice and Palliative Care Organization. Regulatory Alert: Proposed FY2017 hospice age index and payment rate update and hospice quality reporting equirement. ttps://www.nhpco.orghttps://s3.amazonaws.com/HMP/hmp_ln/imported/public/regulatory/FY2017_Proposed_Wage-Index_Alert_042516.pdf. Published April 25, 2016.
Accessed Sept. 21, 2018.
