Today’s post is very personal, reflecting a situation I believe many families go through, brought on by any number of attitudes and fears. I’m hoping that by sharing it, you can find a role for your advocacy work; a way to help families who need someone to provide a reality check.
It’s about providing a gift to some of your patients and their families – in effect, giving them permission to say no to further treatment.
As I thought about the situation, I remembered back many years ago when my mother, who at the time was in her 10th year of her Alzheimer’s diagnosis and had no cognition left. Yet my father kept insisting she be treated for every urinary tract infection (UTI) she acquired (or, perhaps more like, never really got rid of.) It made no sense to me, yet Dad was just so desperate to keep Mom alive.
My post was based on this article from the New York Times: In Cancer Therapy, There Is a Time to Treat and a Time to Let Go which talks about patients desperately insisting on treatment, even though it not only won’t prolong their lives, but will actually cause them more distress. In effect, helping them get past (what many experts call) Magical Thinking.
The question is: Who suggests to the patient and family that a treatment isn’t magical? Who helps them get past wishful thinking and into reality? Who says to a cancer patient, “Chemo is toxic, and while you might get an extra week or two on this earth, you’ll be sicker for that time – your quality of life cannot be improved. Are you sure you still want to put yourself through that?”? To me, this is an ethics question. It’s information that is owed to patients.
Yet no one is offering that information. No – doctors rarely confront their magical thinking patients. Why? Two reasons: it takes too long (there is no reimbursement for time), and doctors often have a financial stake in recommending treatments. Besides, if the treatment doesn’t work out, there is no downside to them anyway.
Family members can’t be objective – nor do they really understand the medicine behind these kinds of decisions. They may be thinking just as magically as their patient-loved one. OR, they may be desperate for the provider to step up and speak up and get real because the patient-loved one won’t listen to them anyway.
Enter patient and health advocates – an objective, yet trusted resource who can help patients and families make such decisions.
In the next few weeks, I’ll be telling you more about a formal approach to Shared Decision Making (SDM) – a process you might want to offer to your clients to help them make decisions about undergoing screenings or treatments, or choosing some sort of hospice or palliative care. It’s not specifically about deciding against treatment – that’s just one of many options. It’s a process that should be taking place through providers – but does not. That spells opportunity for us advocates.(Update – find that post here: Just Who Is Making Your Clients Medical Decisions?)
For the moment, I’m curious about your own experiences with these kinds of decisions, whether they were personal, or with a family member, or with a client. Those of you with a clinical background, in particular – have you worked through these difficult decisions with someone else> How did you approach it> And what decisions did they make?
This can be a learning exercise for all of us.
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Update: November 2015: This post was written in early 2012 and came from an experience I had with my father who was refusing the reality of his terminal medical situation, instead glomming on to magical thinking for himself. He never gave that up, and when he died in late September 2012, he was still frustrated that there was “nothing else that could be done.”
I often wonder whether that served Dad well in his own head, or whether it perhaps was a way to cope with fear…. I think we all deal with our fears, uncertainty and doubts in different ways. What I don’t think is useful is for doctors to foster that magical thinking by putting patients through continual painful, expensive treatment that they know cannot be helpful but from which they can profit plenty.
What is very clear is that advocates and care professionals have an important role to play in this balancing act for the clients.
Your thoughts?
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This topic really resonates with me because I still work 3 days a week in a cancer treatment facility and the topic comes up frequently in ICU. Many clients come to us because everyone else has given up on them and they come for hope, which is often unrealistic. What works for me is to trust the process of grieving and support them with unconditional support and acceptance of where they are. They are frightened, primarily and helping them navigate through the difficult process of letting go requires skill and tact based on years of clinical experience. I have a 44 year old patient now whose lungs are 2/3 filled with tumor and loculated pleural effusion. She has a large family who loves her very much. She will likely end up on a ventilator the next few days, but it will not change her ultimate end point. I have explained the entire process and given options, as the doctors have and they are slowly leaning towards comfort care and deferring the ventilator. What matters most to the families is to know that we care about them as people and offer all the options, and are there to support their decisions without judgement. The care and concern we offer them counts for more than we realize. It’s a heartbreaking decision that they face, but THEIR decision. What they will remember is that they did everything they could do, and that they had someone at their side who really cared for them and felt their pain. Just my opinion….the process is more important than the decision, and families will be the ones who have to live with the decisions they made forever. Some have clarity, others need alot of help navigating this.