Sep 25, 2015 - 01:04 PM
On the other hand, my mother-in-law, who had severe lung disease, was having so much pain that she consented to have surgery. I would like to say that it was worth it, but she had surgical complications and did not have the peaceful death that I would have wished for her.
I wish you and your loved one well in making this decision. To answer your question, there is no ‘appropriate time’ to decline a medical procedure. Each situation depends upon the individual.
It doesn’t make the decision any easier, but on the other hand we still have the right to make our own decisions.
Jan 25, 2016 - 10:41 AM
Thanks for your question. It’s an important one when faced with 10 or 15 years of dementia in an older person. Unfortunately I can’t give you a simple, straightforward answer about each and every procedure – there are so many combinations we can imagine. I think what you are really asking is this: what is really most important to my loved one? What are her or her top priorities? And if we can identify that, then how do I (we) ensure that everything done or not done agrees with those priorities? There will always be tradeoffs unfortunately, even more so in persons with advanced dementia.
When you or I have a medical problem there are tradeoffs too, but we can better manage them. For example, we tolerate pain and suffering while hospitalized (have you needed an IV line for 3 or 4 days recently…it’s no picnic!). But we expect to be cured by modern medicine, and we often expect to ‘get back on our feet’ so to speak. Go back to work, care for ourselves, take vacations and so on. And we assume we will survive the treatments or procedures, obviously.
With dementia – especially advanced dementia, where the person may no longer be independent or even able to communicate – they cannot avoid the tradeoffs. They simply don’t have the reserves that we do. That’s why it’s so important to know what the top priority really is. Is it survival at all costs, the most number of days alive regardless of pain, function or ability to communicate? For many that is the goal, and that’s fine. In that case there is no surgery or procedure too burdensome, as long as there is a very good chance of prolonging life, of supporting that goal.
But for others the priority might be no pain or suffering at all, regardless of how long – or short – life is. In that case even an EGD would not be tolerable, because it violates that priority. For others the most important priority is being at home surrounded by loved ones, or even dying at home. In that case even an urgent ambulance ride to the ER in the middle of the night would violate their priorities and their wishes. That person might benefit from hospice services early, not just in the final week before death as so many people do. Hospice can help families keep their loved ones at home, free from pain, and supported in the final six months or year of their lives, but only if it’s requested early.
The hardest part is coming to agreement on what the top priority really is. It takes honest conversation with patients and with families, and I know how hard that can be. Support for those conversations from physicians is hit or miss. Some do it well, others not at all. Palliative care physicians and their teams do it better than most, so you can ask for some guidance there if the hospital has that service available. Or a primary care physician who has known the patient for a good amount of time. Just telling the hospital physicians that you would like a thoughtful conversation about decision making, and demanding that they make the time to do so, might get everyone to slow down just enough to get you the help you need.
Finally, know that you are not alone in grappling with these issues. Many, many families struggle with the same questions, so thank you for being courageous enough to ask.