Open Notes

A very interesting article on the benefits of patients reading the notes their doctors write about them

Hospice

Again, my view of the future of health care predicts payment systems will evolve so that we are paying for health care, not just disease management services rendered.  There are a lot of statistics about the small percentage of the population with chronic diseases taking up most of our health care dollars today.  It’s the 80/20 rule, only more so.

That topic does warrant further exploration, but today I wanted to talk about the amount of money spent at end of life.  Inordinate sums are spent at the end of people’s lives, with no measurable improvement in quality of life, and frequently very little increase its length.  Money magazine measures end of life spending at one quarter of Medicare dollars spent on health care.

The interesting thing about this topic is that the solution is already in place.  Hospice became a Medicare reimbursable service in 1982.  By 2013, approximately 14 Billion dollars on hospice care.  But that would have been more if those patients had not elected hospice.  Hospice is already not fee for service.  Agencies receive a certain amount per day, and are expected to provide total care for the patient.

The patients are kept comfortable.  The patients are kept at home.  The family is taught about the disease process and the grief process.  I have never talked to a family that has gone through this that didn’t love their hospice agency.

All this, yet it costs the health care system LESS than conventional care.

How can we get our technology obsessed culture to accept that every extra day of life, full of tubes and wires and gadgets, is not a day better?  How can we let families have the peace of an ending without beeps and bells and fluorescent lights?

My father was a small town family physician who went on to be a Navy doctor and administrator for the last part of his career. We have a close family, and most of us write. Vertrees wrote about his brother's passing in the late 80s, and his words are just as true today:

A PIECE OF MY MIND

My oldest brother, Donn, born in 1923, died recently. He was one of the brightest, most intellectual people I have ever known. He spent his life as a teacher, first of high school students, then of life and living it to congregations of Protestants. In the course of his travels around the world, running schools, he contracted intestinal amebiasis. He dated his "troubles" to that onset (whether it was causative is anyone's guess), but by 1984 he had significant idiopathic ischemic myocardiopathy with an ejection fraction of 17% on cardiac catheterization. He was dutifully told of the dismal prognosis, the lack of utility of surgical treatment, and made peace with himself and others around him. He did not, however, succumb ... he simply became more feeble and had less reserve (of every kind). He and his wife therefore went to China to work in an import/export business that required someone of integrity, but with little stamina, to be on-site. This exposed him to a far different type of medicine and an altogether different outlook on life. It seemed to strengthen his already somewhat mystical approach to life and its vicissitudes. 

He came home to rest in the early '90s, whereupon his friends and congregation built him a parish house in which to relax and continue to teach every other Sunday to a small but devoted crowd. In March of 1995 he began to require the benefits of our modem, high-tech medical care system. 

Beset by the usual uncertainties of reliance on and access to a generalist, he and his well-intentioned family/advisors sought out care and treatment from a series of highly-skilled, technologically-attuned, subspecialty-trained physicians. Singly and in groups they were caring, conscientious, thoughtful and careful practitioners of their art. No one of them remained in charge long enough to develop a "long-term" view, nor did any assume the mantle of total responsibility for planning the "what we will do, how long will we do it, and what should be the desired outcome" kinds of issues. Between March and November, I would estimate that roughly $3-500,000 were expended by various third parties as he bounced from one physician/facility to another (Donn had no funds, save Medicare coverage; it wasn't something about which he worried nor for which he had remotely prepared). Some shifts in care were geographically induced (sick while away from home), some occasioned by well-meaning but non-efficacious advice ("I know someone with that problem and Dr. Soandso did a wonderful job"; "Have you tried the [fill in your own favorite, he heard them all] Clinic?"), and some precipitated by a caring-but-guilt-ridden family, who could not bear to see him suffer the multi-systems effects of failing heart ("Someone else must be able to do something!").

I visited him as I could, pressed by my own agenda and hampered by distance. We talked when he felt like it and I listened to the clamor of those facing the daily task of giving kindness to a soul losing its way. I expressed my own mordant, experience-generated recommendations, but they were too strident and to-a-point which others were not ready to accept (though Donn was, I thought). By well-intentioned people he was diuresed, digitalized, after-load reduced, ultrasounded, thallium-stressed, MUGAed, scintigraphied, cathed, bypassed, dobutamined, cardioverted (some of these several times) by each new steward of his diminishing ship of state. He even had his pleurae scarified, to lessen the constant, terrifying effusions. He was finally sent home. with kind Hospice accompanying and morphine, the only succor and tool that could really allow him to slip away in a "care and comfort" mode. 

I muse on these events, in my current role as a resource allocator in a large healthcare system. No one meant for the cost to be so great, nor the outcome so poor; no one, given the clarity of the retrospectoscope and the chance to do it again, would have done all that was done. The man should have been allowed to sit on his porch and die peacefully, much earlier then that event actually happened, I think to myself. Is it any wonder our current system is wildly expensive? Are there really malice, ignorance and mean-spiritedness rampant in our field of endeavor, or has the decision tree not been properly written in our medical schools? Must politicians, lawyers, business people (a euphemism for "bottom-line" types) and nitwitted journalists be our guides from this thicket? I hope not! But unless each individual physician seizes each individual case by its medical and fiscal throat, we shall have none to blame but ourselves. Must the solution require team-think? Are we so fractioned, so limited in our personal outlooks that we have no room for the group/national needs vice those of the individual patient? These are hard choices; my immediate worry, as I spoke to the panoply of folk rend(er)ing care, is that the consideration of allowing life to ebb as a natural process was not even considered, nor discussed among the professionals or the family. Yet these are good, highly-trained, altruistically-motivated people, not charlatans.

Should we allow uncaring actuaries to read us a list of “whens," or should we seize the moment to think about this, at the crucial time in each case, which all physicians (of whatever stripe) can recognize more capably than anyone else? 

Donn and his hard-pressed family are resting now. Someone else (all of us!) has borne the cost. New patients are daily brought to CCUs in similar straits, none easily diagnosed/prognosed prospectively. The escalation of expenditures, balanced against the immediacyl"non-cost"(!) of one more test/procedure, make easy decisions impossible. Change is all about us; one case makes little more than another anecdote ... but this one is very personal to me and my current position. How will we handle the next one? Better, I hope; one step at a time, I guess. 

Vertrees Hollingsworth MD

Clinical Associate Professor of Family Practice F. Edward Hebert School of Medicine

Uniformed Services University of the Health Sciences

Bethesda, Maryland 

My father was admitted to hospice in August 2011, and died in his sleep at home on February 14, 2012. No extraordinary measures at all, and that's the way he would have wanted it.

We need hospice in this country, now more than ever. It's the right thing for the patients and family, and it's the right thing for our health care economy.