Nyt article on “Not The Good Death We Were Promised”

A wonderful piece in the New York Times, under above heading, draws timely attention to the inadequacies of the current delivery of hospice service.

When a doctor said my father had about six months to live, I invited a hospice representative to my parents’ kitchen table. She went over their Medicare-funded services, including weekly check-ins from a nurse and 24/7 emergency oversight by a doctor. Most comfortingly, she told us if a final “crisis” came, such as severe pain or agitation, a registered nurse would stay in his room around the clock to treat him.

But:

But at the very end, confronted by a sudden deterioration in my father’s condition, hospice did not fulfill its promise to my family — not for lack of good intentions but for lack of staff and foresight.

At 7 p.m. on the night before my father’s last day of life, his abdominal pain spiked. Since his nurse turned off her phone at 5, I called the hospice switchboard. To my surprise, no doctor was available, and it took the receptionist an hour to reach a nurse by phone. She told us we should double his dose of oxycodone, but that made no difference. We needed a house call.

The only on-call nurse was helping another family two hours away. So my sister and I experimented with Ativan and more oxycodone, then fumbled through administering a dose of morphine that my mother found in a cabinet, left over from a past hospital visit. That was lucky, because when the nurse arrived at midnight, she brought no painkillers.

After the nurse left, my father’s pain broke through the morphine. I called the switchboard again, and it took three hours for a new nurse to come. She was surprised he hadn’t been set up with a pump for a more effective painkiller. She agreed that this constituted a crisis and should trigger the promised round-the-clock care. She made a phone call and told us the crisis nurse would arrive by 8 a.m.

 

The nurse did not come at 8 a.m. Or 9 a.m. When his case worker was back on duty, she told us — apologetically — that the nurse on that shift had come down with strep throat. Her supervisor stopped by, showed us the proper way to deliver morphine (we’d been doing it wrong) and told us a pain pump and a crisis nurse should arrive by noon.

Noon passed, then 1 p.m., 2 p.m. No nurse, no pump.

By this time, my father had slipped into a coma without our noticing; we were thankful his pain was over but heartbroken he wouldn’t hear our goodbyes. Finally, at 4 p.m., the nurse arrived — a kind, energetic woman from Poland. But there was little left to do. My father died an hour later.

The thought terrifies all of us facing end of life.  I still believe that such an end is utterly unnecessary, and that it occurs points to multiple failures in the system.  And, this is even scarier:

Kaiser Health News discovered there had been 3,200 complaints against hospice agencies across the country in the past five years. Few led to any recourse. In a Medicare-sponsored survey, fewer than 80 percent of people reported “getting timely care” from hospice providers, and only 75 percent reported “getting help for symptoms.”

Without getting into the specifics of pain relief, or the complex incentives in the capitation payment system, let me suggest that the earlier the partnering team discusses all the options, and the more patient, family, and team, make affirmative choices between hospices, based in part on this government data, on whether certain steps were followed, the pressures for quality to increase.  I would go further and say that any hospice for which this data is not available, for whatever reason, is just off the list.

There were also some great letters in response to the article.

 

 

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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.

 

Does Anything Ever Change – Queen Elizabeth I Had To Intervene to Protect Against Professional Monopoly Over-Protection By Physicians

I am reading a wonderful book called The Gardens of the British Working Class.  It is one of those books that seems to be about what some would call a “little thing,” but is really about all of life.  The author, Margaret Willes tells a wonderful story (starting at page 38) as to which we would all recognize the issues and circumstances, both for medicine and law:

Towards the end of Henry VIII’s reign, in 1543, an act was passed allowing those experienced in he nature of herbs, roots and waters to practice and use them as a gesture of Christian charity.  This caused much consternation in some quarters. .  .  .  The College of Physicians summoned a series of women before their court for administering medicines and giving advice.  But in one instance, when a poor woman Margaret Kennix, was accused of supplying her friends and neighbors with herbal remedies, the Queen intervened in person.  In a letter sent to the College secretary via Secretary Walsingham, the Queen declared:

“It is her Majesty’s pleasure that the poor woman should be permitted by you quietly to practice and minister to the curing of diseases and wounds, by means of certain simples, in the application whereof it seems God hath given her an especial knowledge.  I shall therefore desire you to take order amongst yourselves for the readmitting of her into the quiet exercise of of her small talent, lest by the renewing of her complaint to her Majesty through your hard dealing towards her, you procure further inconvenience thereby to yourselves.”

How perfect.  I particularly love the subtlety of the implicit threat that the College of Physicians should not take actions by which “you procure further inconvenience thereby to yourselves.”  Something tells the lawyer in me that they had no need of class actions that are now used to obtain compliance for the whole group in such circumstances in those days (although sadly recent Supreme Court rulings have, with some exceptions, made dramatic inroads into the practical availability of the remedy.).

The incident also makes me wonder if, in her day to day administration of the realm, Queen Elizabeth may have been more of a feminist than we realize.  My popular culture impression is that “she had to act as a man to be a queen.”  It would be a great PhD thesis to look through those day to day records, with this incident in mind, to see if the truth may not be much more complicated and interesting.  And, I wonder what Walsingham and others thought about her attitude.

(This is a slightly edited version of a post that appears also in my access to justice blog.