Mom’s health is declining and she talks about being “ready to go”. My brother wants her to keep having tests and treatments but my sister says we need to stop making her do that. How do we decide what’s really best for her?
The first and perhaps most important point is that your mom has the right to make decisions about her care and her wishes need to be honored! Medical technology has led to unrealistic expectations, where adult children expect their parents to “live forever” and won’t discuss death—they [and many doctors] have ‘death anxiety’. Examples of situations like this are well described by Dr. Monica Williams-Murphy, in her book It’s ok to Die; and by Hank Dunn, a hospice chaplain, who describes this reluctance to ‘let go’ (vs. ‘giving up’), in his Hard Choices for Loving People.
The primary goal of medicine is to prevent or relieve suffering, especially as we approach the end of life. Because our technology now often creates situations which keep people alive but who are suffering, doctors and families can be responsible for either relieving suffering or prolonging it. (A senior told me, if we believe in heaven, why would anyone delay passing on to a place of peace and healing when neither of those will ever be possible again in this world? )
This then begs the question, “how do you know when to say enough”; when do you shift gears from a goal of ‘curing’ to one of ‘comfort & caring’? Very few seniors want to be kept alive or live in a nursing home regardless of the pain or costs. For the majority, comfort and being able to enjoy life with family and friends (quality time) is more important, even if they don’t live as long (quantity time).
Deciding what’s ‘best’ or most appropriate must be individualized. At one extreme of the choosing comfort spectrum, I’ve known patients who decide they won’t have any tests, not take any drug except to help control pain if needed, and leave whatever happens up to God & Nature. At the other extreme, others go to several doctors regularly, take over 15 different prescriptions, and believe firmly that this helps them to live longer and better [even though the evidence suggests the opposite!].
A good conversation starter to help families discuss these emotional topics is the “One Slide Project”, found at engagewithgrace.org: after everyone discusses the five questions, they should have a better understanding of one another’s end-of-life care preferences.
I use a similar set of topics with families, to help them clarify their goals and choices, which are particularly important once we achieve ‘senior status’ and have a serious illness. Remember—when we have a life-limiting disease, no good comes from avoiding the topic of dying!
I’ll discuss these next time!