In This Episode:
Dr. K explains the basics of hospice care, with a special focus on hospice for people with Alzheimer’s disease and related dementias. She covers:
- The difference — and relationship — between hospice and palliative care
- What kind of services and benefits you can get through hospice
- How hospice eligibility is determined by Medicare
- The difference between severe Alzheimer’s disease and “terminal” Alzheimer’s
- How to know when someone with Alzheimer’s might be eligible for hospice
- Why some people with dementia “recover” and may be discharged from hospice
- Common misconceptions people have about palliative care and hospice
- Why hospice is a good choice for most patients and families facing the end of life
025 – Interview: Palliative Care to Live Well with Cancer
- Hospice in Dementia, Medications, & What to Do If You’re Concerned
- Medicare.gov: How Hospice Works
- Medicare: Local Coverage Determination (LCD): Hospice – Determining Terminal Status
- How to Understand the Stages of Alzheimer’s & Related Dementias
- What are Activities of Daily Living (ADLs) & Instrumental Activities of Daily Living (IADLs)?
- Advanced Dementia: A Guide for Families
e-Patient Dave says
Dr. K, thank you yet again for this episode. I sorta-kinda knew a lot of it, but frankly in this case you’ve provided something I can share with people who need to understand.
I’m happy to say that now when I google “palliative care” the highlighted definition is this page https://getpalliativecare.org/whatis/, which says it’s “specialized medical care for people with serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.”
I’m seeking a clear and compelling way to explain palliative. That definition, and your podcast, talk about relief from symptoms, both from the disease and from problems caused by treatments. I know it’s separate from curative care, trying to stop a disease or condition; either can be done with or without the other, right?
So I’m wondering if it’s accurate to say this: it’s like the way cold medicines are advertised as “relief from the symptoms of” XYZ. Cold medicines don’t stop the virus – your body eventually beats it. But symptomatic relief lets you get on with life, or at least feel less miserable. Same for some over-the-counter cough medicines (cough suppressants), right? They don’t stop the biological cause of the cough – they stop the cough itself, which is a symptom of the disease, right?
I have a feeling the cough analogy is a little bit imprecise, so please correct it. It interests me because anyone can understand how good it is to have a good cough medicine, or cold medicine. So, if a loved one is miserable because of a disease that can’t be stopped (or IS being treated), or miserable because of the treatment (side effects), perhaps we can learn to ask “Can you do anything about these symptoms??”
Am I understanding correctly? Is this a valid way for us all to think about palliative care and treating symptoms separate from the disease?
Thank you again for your generosity in sharing all this information. I tell people every week about this podcast. Yesterday in particular this episode was important to someone.
e-Patient Dave says
Wow, that Get Palliative Care page includes this YouTube, which is a great clear summary in less than 2 minutes.
I love that the script doesn’t say a thing about end of life – rather, “Its main goal is to improve your quality of life from the symptoms, pain and stress that are an inevitable byproduct of both the disease and the medical intervention. In short, palliative care provides support for your bridge.”
Leslie Kernisan, MD MPH says
Exactly. People often conflate palliative care with end-of-life care, but it’s really an approach that we should apply to anyone who is suffering or distressed by their health problems.
Leslie Kernisan, MD MPH says
Yes, palliative care is focused on symptom relief, whereas most medical care is very focused on cure, minimizing the risk of death, and/or minimizing the risk of disease progression.
Another way to think of it is that palliative care is more focused on what matters to patients and how they are feeling, whereas medical care has otherwise usually focused on what the doctors think is most important. It’s a little sad that doctors have historically often been rather oblivious to how patients are feeling, but there it is.
Personally, I would like to see palliative care principles become the default in medicine, rather than being some special kind of approach that you have to ask for, or qualify for. Dr. Muriel Gillick recently wrote a good post about this here: “Pushing Palliative Care”
Thanks as always, Dave, for your interest in the podcast and in these issues!