Please, let us connect to our fellow patients!

Everyone concerned with improving health care should take a look at this article in the New York Times by Dr. David Stern. Its written by a cancer patient relating two experiences in what is obviously a high status hospital.

He wonders if he could have helped, or been helped by, his roommates, in both of whih cases had more advanced diagnosis than he. He did not even know their names, and heard their emotional and physical paid and felt unable to do anything.  In the econd case:

As with my last hospital roommate, I never saw this man’s face and we never spoke, but I feel immeasurably close to him, as though in some ways I know him better than my dearest friends. He heard me gasping for air through the night and yelping in pain as the chest tube got pulled, and I heard him trying to be brave for his family, reassuring them that they would go forward with whatever came next as best they could. I heard him speak in a reassuring voice to his children, only to hang up and weep loudly into the night until passing into a sleep from pure exhaustion.

Listening to him was like a kind of sonar, an echo bouncing back to me from my own future path, hinting at what’s to come.

When I was getting ready for discharge, I had the urge to pull the curtain and embrace him as he told me the secrets of what to expect next. I would ask how had he navigated the path from here to there. I would lay down the weight of uncertainty that surrounds my life and ask: What should I do now? How I can live with only a vague sense of dread of what’s to come as my guide?

But he could not have given me answers, just as no one could have articulated what lay ahead for me at other junctures, such as when I started medical school, became a husband and a father or at the time of my diagnosis. The next steps must be discovered in the journey itself.

Actually, maybe, no almost, certainly that patient could have given you something relevant and helpful, if not the final answer.  And, it would have helped my roommate to have helped me.  I certainly find that waiting room chats can be incredibly helpful to all of us.

I have to same, more importantly, that this article inspired in me no fear, notwithstanding a progressing terminal cancer.  This is simply because I have absolute faith that my doctors and other providers, my hospital, my palliate care program, and ultimately my hospice:

  • will let me make the connections I need to make,
  • keep me out of pain, unless I choose otherwise,
  • help me make human connections with those around me,
  • and will listen seriously to my suggestions for how to improve my experience and the system as a whole.

And, above all, I am certain, at least if I had asked, they would have obtained any HIPPA waiver they felt necessary, and introduced me and my roommate.  (Both my hospitalizations were in single rooms, as a general infection control measure.)

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HIPPAA Family Information Solution

It is pretty much a common understanding that the well-intentioned HIPPAA privacy rules have sown much confusion.  In particular, as discussed here, they are as often used as a shield against people and their families understanding what is going on — critical of course to true partnering —  rather than sword to ensure access to information.  Of course, read carefully the regs, even as currently drafted, actually provide a lot of flexibility to the holders of private health care information.

During a recent fascinating and creative HHS phone call to discuss ways to create useful and accessible online prescription records (of which more in a later blog), someone had a superb idea — to issue a model HIPPAA consent form that includes with the usual insurance company and provider list, language like “any and all family members,”  with, of course the option to check or not check it.

Of course, not everyone will want to check the whole family, and might want rather to list individuals who are to be given access, and that should be made possible with a space for such a list or appropriate general description.

Someone else then suggested that the use of such a form should be mandated by HHS.

What I now personally and routinely do is write that language in myself on the current form, drawing explicit attention to it to the professional staff, and suggesting that it will make their lifes simpler, and encouraging them to put it in their standard form.  So far, one test only, a very positive response to the idea.

So here is an example of a thing we can do to change the culture by popular will, and of an improvement can ultimately be normalized by the system and government.

I would only add that any provider unhappy with such an approach would certainly face questions from me about their value system and philosophy.