Worse yet, you can have your directives written down and located in the minds of others and even in your physician’s office, maybe at the hospital (where you may or may not be when they’re needed); and still your loved ones may not be able to re-construct your wishes because, though you documented them, your family can barely interpret while they’re in crises and with health professional to boot and abound unable to help them because *they* don’t know how to have these conversations in ways that meet your families needs for information and for comfort.

A colleague and I are working on a large scale solution to guide patients, families and clinicians through shared decision making. The tool results in a higher quality of life and appropriate use of resources by walking patient, family and clinicians, step by step, through (a) deciding (or
deciding again) whether to implement CPR if the patient’s heart and
breathing stops naturally; (b) whether or not to choose other possible
treatments and (c) how to have the time you would want at the natural end of
life.

In crises, people don’t know it, but they are choosing whether they get  to say what they would say, be as they would be at the natural end of life; or whether they get separated by horrifying, medically overloaded situations that prolong, disrupt and dishonor the natural process of dying and, which complicate grief for survivors. Rarely is there a choice in between. Researchers have been trying to solve that problem for years and  haven’t plumbed the depths of it yet!

Here are some questions that you can ask your physician if you become in a life threatening situation where you have to decide what to do. Think about the answers to these questions as if they are guides helping you choose how to spend your last days together:

How long will my person live with or without treatment?

Will this treatment benefit or harm my person (on a scale of 1-10).

How much will this treatment cost?

What would you do if this was your (mom, dad, kid, spouse…)?

Then ask your heart. You will know what to do.

If you choose being-with your person to the end of their life in a natural, quiet  and blessed way, remember to say these things: I love you, I forgive you, please forgive me, thank you and good-bye.

Hope that helps!

I just finished reading a book, “Intern: A Doctor’s Initiation” by Sandeep Jauhar. After reading that I wondered if medical education and those early years of initiation do anything at all to inculcate that precious sensitivity.

I am touched by your post, by your sensitivity. I have come across doctors who think palliative care is a waste of time and a synonym for euthanasia. One doctor even labelled it illegal.

How do we make today’s doctors realize that palliative medicine is not another distant discipline and but an approach all of us can adopt regardless of your specialization? I have seen patients feeling better just because the doctor is there. Not suited up for surgery, not poking, not auscultating, not even touching–just being there. Yet, most busy doctors say they do not have time for such sentimental business.

I know it must come from within. But I am curious to know how you teach your people to care.