Every Patient's Advocate

Refusing Treatment, Advanced Directives, and a Broken Heart

The universe has been telling me all week to write more about refusing medical treatment.

Several readers of my newspaper column sent me questions about it — without even knowing I had already addressed the subject on my blog.

And, several readers of this blog sent me personal comments about refusing treatment, sharing their stories or those of their loved ones. As sad as some of those stories are, they are empowering, too, because they show that the patient and family were in control of the necessary medical decision-making.

Further, advanced directives — those documents that help you determine and specify what your own choices are about life-prolonging treatment, including ventilators, feeding tubes, hydration — were the subject of one of my radio show interviews.

But then, the gravity of such a decision — the decision to refuse any treatment that will prolong life — really struck a much closer and ominous chord when I received a letter from dear friends, Annette and Paul. We have been friends for 30+ years, and even when we moved hundreds of miles apart, we used to visit each other as often as possible. From the before-kids days, to the kids-growing-up days, and now to the kids-are-all-grown-up days — it’s a longtime and valued friendship.

It seems Paul was diagnosed less than two weeks ago with pancreatic cancer — and it has metasticized and progressed so far that he has only a few weeks to live. Together Annette and Paul have decided that Paul will refuse any cancer-specific treatment and he will spend as much quality time as he can with his family, and be kept as comfortable as possible with pain relieving drugs.

Paul is still young — not even 60 yet. His daughters are young adults, but grandchildren aren’t yet in the picture. He hasn’t even had the opportunity to enjoy the fruits of his labor in his retirement. It just seems so unfair.

I still can’t write this without choking up. It has affected me on so many levels. I am sad, and angry that such a wonderful and vital man is so ill, and that his family and friends will watch as he is snatched out from under us! It just breaks my heart.

And yet — I absolutely applaud his and Annette’s ability and wherewithall to make such a difficult decision. How marvelous that Paul gets to get through this on his own terms! I will always admire their strength in making the choices they did.

So what’s the take-away for all of us? That making treatment decisions is OUR choice and no one else’s. And, even more importantly, that it’s important to share your feelings about these kinds of choices with your loved ones. There may be a day you can’t articulate your thoughts — either you’ll be too sick, or injured, or you’ll have a stroke, or heart-attack, or be in an accident — something may get in the way of your communication.

Spend some time having this conversation with your loved ones so they know how you feel about your end of life care. Fill out those advanced directives (healthcare proxies, DNRs) so they’ll know how you feel. You’ll feel empowered knowing you’ve made firm plans — right until the end.

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