Medical Treatment During End of Life

Our local newspaper recently carried two articles that highlight two different aspects of medical care for persons living with dementia (PlwD).*

The first described an experimental Medicare program being offered in a few cities including Phoenix, where hospice services will be offered to people who are seriously ill and still receiving treatment. They will be looking for results that show if this lengthens lives and saves money, by reducing emergency room visits and other acute care services.

One thinks first of the person receiving chemotherapy or radiation treatments, but what about heart medications or other life extending drugs? Wouldn't it be wonderful to have a compassionate (and free!) team of caregivers to help with dementia care without having to make the decision about whether to give up those drugs or not? Sometimes these "life extending" drugs can also be helpful, as with those that treat ever-so-painful pneumonia.

The other article discussed the practice of continuing to test seniors for problems like breast cancer well into their eighties, as long as the tests are not dangerous. "A loving daughter of a PlwD said, "Why not? I want my mother to have the best possible care." Of course she does. But are tests like mammograms good care for a person with a disease like dementia? We believe that imposing such an experience on a dementia patient is not good care for several reasons

• First, many of the tests are scary or painful. Take a mammogram, for example. Every woman knows how uncomfortable these are. 
• Because most PlwD wouldn't be able to understand why they were being mistreated, they could become combative and difficult to manage without possible dementia-sensitive drugs that they would not otherwise need.
• The likelihood of finding a cancer that can be treated in  PlwD's lifetime is low.
• Any treatment would probably make the dementia worse, cause major discomfort or both so that even if it extended the person's life, quality of life would be lower than it would have been without treatment.

Both of these articles address end of life issues. No one is a greater advocate of hospice and good care for seniors than we are. People need to start using hospice much sooner than most do. It would be wonderful if they didn't have to make a decision to stop life-extending drugs. It would allow people to consider using hospice services sooner--but when should the use of life-extending methods stop? As for testing, we all need to do what we can to maintain our health, and testing is often where that starts--but when is it more damaging than helpful?

There comes a time in dementia care when the focus must switch from extending life to enhancing it--to making it as comfortable as possible. And so, yes, as long as these life-extending measures do not decrease a person's comfort level, why not leave them in place? But the truth is that they often conflict with dementia drugs or limit a person's enjoyment in other ways.

For example, Jim (Whitworth) loves grapefruit but can't eat it because it conflicts with his heart medication. That's fine for Jim. He has many other enjoyments and doesn't miss this much. But if his chances for enjoyment were severely limited as they are for many with dementia, eating something he can still enjoy might top the list. Then would the drugs be worth keeping? Would he even want a less enjoyable life extended?

Family members who opt for treatment or tests that they hope will extend the life of their loved one with dementia are usually responding to their own needs, rather than the needs of their loved one. Step back, look at it all from the view of the person living with dementia, and then make the decision. What would you want if you were in their present situation? Not what they would have wanted when they were dementia-free, but now. That is the answer that counts.

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.


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* Acronyms:
AD: Alzheimer's disease
BPSD: Behavioral and psychological symptoms of dementia
DLB: Dementia with Lewy bodies, where cognitive/behavioral issues occur first
LBD: Lewy body dementia, an umbrella term for both DLB and PDD
MCI: Mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
PD: Parkinson's disease
PDD: Parkinson's disease with dementia, where mobility issues occur first
PlwD: person/people living with dementia
PlwPD, LBD, PDD, AD, etc.: person/people living with PD, LBD, etc.

For more information about Lewy body disorders, read our books: A Caregivers’ Guide to Lewy Body Dementia Managing Cognitive Issues in Parkinson's and Lewy Body Dementia Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.