I’d like to know what my loved one wants before a life changing diagnosis which does not allow them to state their opinion.
I am an advocate of individuals determining how they want to live out the their lives. I took such comfort in knowing that we honored dad’s wishes. His gift to me was peace when he passed because I knew we were doing what he wanted.
It is why I support the New Jersey Health Care Quality Institute and their Conversation of Your Life (COYL) program. It is why I tell all my clients that an invaluable gift to their family is having an intentional conversation on end of life wishes. Then sign an Advance Directive, a Physicians Order of Life Sustaining Treatment (POLST) form and/or select a Power of Attorney for Healthcare.
I wonder, should there be a similar process or document in place to facilitate discussions around new medical advances and medications that are not yet on the market?
I’m not saying this would be easy, but it has been on my mind since the FDA approved the controversial drug Aduhelm (aducanumab) to treat patients with Alzheimer’s disease. It is the first drug approved for Alzheimer’s since 2003, which is significant. What is turning out to be even more significant is the accelerated approval pathway that was used. It is significant because it may provide meaningful therapeutic benefit but there is still some uncertainty about the drug’s clinical benefit.
The studies show that Aduhelm substantially reduce amyloid beta plaques and that the reduction in these plaques is reasonably likely to predict important benefits to patients. Since it was approved, the FDA has modified the original language of the approval to recommend that it only be used in certain patients with mild cognitive impairment or early Alzheimer’s disease. But the real issue for many are the known side effects. Thirty percent of people experienced reversible brain swelling and more than ten percent had tiny brain bleeds. We don’t know if aducanumab works or not to slow down dementia, so the decision to take it is like participating in a clinical trial.
I am not here to weigh in on the benefits of this drug, but it does beg the question, when potential side effects are severe, would I want to use it? It is an especially poignant question because someone with Alzheimer’s cannot answer it for themselves. It falls on family members to decide and that can cause a huge rift if everyone does not agree.
We know the emotional component of caregiving is different for family members. So many emotions are determined by the relationship they have with the person who falls ill. Guilt plays a huge part for many people when they push to start or continue a course of treatment. At the same time, another family member may take the position mom or dad would not want to live this way. How do you reconcile the two? I would rather have an intentional conversation that dug into what my loved one would want for themselves before they can’t tell me.
If I was going to have that conversation, here is one way to approach it:
“Medicine is coming up with new treatments and therapies all the time for heart disease, cancer and dementia, to name just a few conditions. Since we don’t know what the treatment would be, it is hard to know if you might want it. But I’m wondering, at the age of 89, would you want to take a chance on a new drug that might give more time but would not cure the disease? What reactions would you not want to live with day in and day out? For example, nausea, difficulty breathing or the possibility of a stroke.”
Like an advance directive ,the conversation would be ongoing with changes made as age advances, new life events are on the horizon or diagnosis is given. What do you think? Is it possible to have a directive for treatments that have not yet been developed? What would you want to cover in the document?
Disclaimer: The material in this blog is for educational purposes only. It is not intended to replace, nor does it replace, consulting with a physician, lawyer, accountant, financial planner or other qualified professional.
Deb is available as a caregiver consultant. She will answer the question: “Where do I start?” and find the resources to alleviate your stress. If you would like to invest a half hour to learn how she can help you, please contact her at: Free 30 minute consulting call
Deb is the author of “Your Caregiver Relationship Contract.” This book explains how to have an intentional conversation and the how unspoken expectations can cause problems. Click here to learn more about Your Caregiver Relationship Contract.