Lee Burnside, MD, MBA, is a geriatrician and palliative care physician in the Division of Geriatrics at the University of Washington. He works in palliative and hospice care and is a member of the UW Memory Brain and Wellness Center. He has had a longtime interest in caring for and improving the lives of persons with dementia and their family, friends and community. He has worked closely with the Seattle Frye Museum and their Creative Aging programs.
What is Palliative Care?
The quick answer that I often give is “palliative care is a branch of medicine that tries to make things better when we cannot fix the underlying problem.”
What a lot of people don’t realize is that palliative care is a lot more than just focusing on physical symptoms. That is certainly a big part of palliative care; however, many times there are issues that are more problematic than physical comfort. I like to think of Cicily Saunders’ approach to “whole pain.” Cicily Saunders was a British physician considered to be the founder of modern hospice. She categorized suffering into four types: physical, emotional, psychosocial and spiritual. I think this holistic approach to suffering is very useful.
The role of palliative care is not just to address physical suffering, but other issues that may be causing distress for a person or their family. It can be quite complicated to address these types of issues alone and that is why palliative care is best done by a team. Teams will typically have a spiritual care provider and social worker in addition to nurses and physicians.
The other main role of palliative care is to help with decision making. There can often be difficult decisions to make when someone is ill. Palliative care clinicians are trained in helping a patient and family review what is important to them, and to decide how it applies to the current situation. This is often referred to as assessing goals of care.
People often confuse palliative care and hospice care. What is the difference?
This is probably the most common question about palliative care.
Hospice is a type of palliative care – it is a defined service. You could consider palliative care as a big umbrella of care, with hospice as the part that is focused on the last stages of life. In the United States, hospice is meant to be for persons with six months or less of life expectancy and who choose to focus on symptom management, not treatments or cure. Hospice services (usually through Medicare, although other insurances follow Medicare guidelines) involve a team. There is a nurse, a chaplain, a social worker and volunteer services available. The need for different team member skills certainly varies from person to person — for example, not everyone will need social work or chaplain services, but they are available if needed.
It’s important to note that the percentage of persons utilizing hospice services with a diagnosis of dementia has been steadily increasing. Hospice used to be much more focused on cancer management at the end of life. Now, about a third of all hospice patients are receiving hospice care for a dementia diagnosis and that percentage is increasing.
Who is appropriate to receive palliative care?
Palliative care is appropriate for persons with a chronic incurable illness or a terminal illness. Palliative care does not necessarily need to be provided by a palliative care specialist. Most primary care specialists are quite skilled at assessing symptoms and providing pain relief as well as assessing other non-physical needs (the emotional, psychosocial or spiritual needs I mentioned above). Many subspecialists like oncologists, for example, do a lot of palliative care as well.
When care gets a bit more complex — like in hospitalization for a serious illness, or with severe symptoms or towards the end of life — that is typically when a palliative care specialist would become involved. There are some outpatient palliative care programs, but currently not nearly enough to manage the care needs in the Seattle area, although this is slowly improving.
How could palliative care help someone with Alzheimer’s or another type of dementia?
A lot of people in the later stages of dementia are already receiving palliative care. Typically, care in advanced dementia is focused on comfort, minimizing medications, making sure physical and emotional needs are met, as well as minimizing unnecessary medical testing or interventions such as blood draws. Clinic visits are often limited as well.
Where I think palliative care could help a person with dementia is if there are issues of agitation, physical discomfort or family distress regarding how a person with dementia is doing. It is not uncommon that decisions need to be made regarding a medical intervention (say a surgery) for a person with dementia, and it may not be clear if it would be best to proceed with that intervention. Palliative care can help with this type of decision making.
I am considering palliative care for my loved one. Who do I talk to about this?
I would say the first person to talk to would be your loved one’s primary care provider, or perhaps a neurologist if they are closely followed for their dementia.
Hospice is typically considered for a person with dementia when there is a significant decline in appetite, weight loss or recurrent infections (lung or urine infections). Typically, a person at this stage has very little-to-no speech. Again, hospice criteria are for persons with six months or less to live. This can be hard to determine in hospice, as there tends to be a very slow decline, but your primary or specialty clinicians can help determine this.
Is there something else about palliative care that you think people should know?
Yes! It does not mean “giving up” or having no hope. Sometimes, the perception of palliative care is one of “well, there is nothing left to do so let’s turn to palliative care or hospice.”
Palliative care, including hospice, “does” a lot. It is very much an active endeavor to continually look at care needs and to provide appropriate care and comfort to both a patient and their loved ones.
The goal for palliative care is to optimize what we can to improve the quality of life, whatever that may mean for the individual and their family. Facing dementia is a very complicated process. I do hope that a palliative care approach to dementia becomes more understood and utilized.