Last week, the Institute of Medicine released a new report titled Dying in America.
The committee that worked on the report included some long-time grantees and friends of the John A. Hartford Foundation, such as June Simmons of the Partners in Care Foundation, Jean Kutner, a Beeson Scholar and faculty member at the University of Colorado, Diane Meier, leader of the Center to Advance Palliative Care, Patricia Bomba of Rochester, NY’s Excellus Blue Cross/Blue Shield, and Joan Teno of the Center of Excellence in Geriatric Medicine at Brown University.
As always, we are proud to be associated with leaders who give their time to explore such urgent issues.
I’ve just started scratching the surface of the report and its recommendations. But I am happy to understand from reporting (see the New York Times article End-of-Life Care Needs Sweeping Overhaul, Panel Says) on the report, that the same anonymous donor who funded the IOM study also plans to support its dissemination and I hope it will have long legs and a lot of impact. (Yuck. Yes, I know. An anonymously funded study by the Institute of Medicine is a mistake. An anonymously funded advocacy campaign to spread the word of the report is probably an even bigger mistake. I hope that the IOM will re-examine its policies for accepting funding.)
I suspect that given its emphasis on workforce, it will give another tool to our Eldercare Workforce Alliance to advocate for greater preparation of the healthcare workforce to the complex care needs of older adults—including both the short “active dying period” and the months or years leading up to the end.
It is perhaps obvious, but still worth noting, that the vast majority of those who die in any given year are old—in fact, in 2011 72.8 percent of all those who died were 65 and older, with a gigantic concentration among those 85 and up. This is a good thing and to be expected. While the regret and shock caused by the deaths of the young or those expected to have many years ahead of them may make it particularly memorable, death is primarily a problem of those 65 and up. And so it is one of the concerns of the Hartford Foundation to help society deal with death as well as possible.
I’m sure that I will have more to say about this report over time as I understand it more thoroughly, but I was struck by a story I read in chapter 2, titled The Impact of Unwanted, Uncoordinated Treatment: A Family Narrative. The story is included below, but in short, it details a man with advanced dementia who falls and breaks his hip in assisted living. An operation to repair the hip leads to pain and delirium and, on hospital day 12, against family wishes, the man is discharged to a useless three-day stay in a psychiatric hospital, then dumped in an emergency department, and admitted for another futile hospital stay, followed finally by a residential hospice and death within four days.
As I’ve written before, sometimes the most important part of creating change is seeing what’s wrong with the status quo and imagining a better world. What struck me most strongly about this story is the bloodless and “no villians here” way it is presented and discussed. While it is the accepted wisdom in “quality improvement” circles that this non-judgmental approach is the right one, I think that it runs serious risks of failing to face the facts.
Imagine, if you will, that the patient in this story was a child in age and not just in mental capacity. Without consent or even consultation with the family, that child is discharged from a hospital, transported across state lines for inappropriate “treatment” of no clear benefit (except financial to the institution), and then dumped on another institution for care. I think you would understand that what is being described is not just “fragmented care,” but kidnapping, assault, and, most trivially, fraud.
Taking people places against their will for illegal purposes by force or deception is kidnapping. Providing medical treatments for people who don’t want them and without sincere belief in their benefits to the person being treated is assault. And, billing either the family or Medicare for any of this is fraud and profiteering.
Sometimes, as we have seen in other instances (rampant anti-psychotic drug prescription and physician disillusionment), the problem with the health care system is not good people being driven to do the wrong thing by ignorance or lack of alternatives. Sometimes, corruption is just corruption.
That it is performed by fast-talking people in white coats rather than black masks and guns and to older adults rather than a child makes it no less wrong. I don’t think we should accept that this is the slippery slope that good people with good intentions inevitably slide down when incentives are misaligned.
Fixing the problems of Dying in America may be harder than we think.
The Impact of Unwanted, Uncoordinated Treatment: A Family Narrative (From the IOM Report, Dying In America)
The subject of this narrative is a New England man who died at age 98, several years after telling his family and signing directives to exclude “heroic” measures at the end of his life. His daughter recounts his experience:
In 2010, he had been suffering from a form of senile dementia progressively for at least 10 years, though his physical health was excellent. The death of his wife, however, in May of that year, caused him greater confusion and anxiety than he had ever experienced. ...
Early in the morning on December 7, 2010 the staff at the assisted living facility, where he lived in Maine, found him on the floor. They phoned an ambulance and he was taken to a nearby hospital, where a left hip fracture was diagnosed. ...
The surgery was “successful” and my father “recovered” post-operatively very well. However, his agitation—presumably prompted by pain, unfamiliar surroundings, lack of comprehension of the circumstances—increased daily. ... In the four weeks prior to his death, my father lived under the care of five differentinstitutions in two states. Only the last place, the hospice, appeared willing orable to provide care and comfort to a man who was obviously at the end of his life.
After he had been in the hospital in Maine for 12 days, a social worker phoned one morning to say an ambulance was on its way to take him to a hospital in Haverhill, Massachusetts, where his medications would be “adjusted”. ...The transfer was already in progress; we, the family, were merely being notified. When we arrived at the hospital in Maine, distraught at the short notice, we asked to see the doctor who was discharging my father. A psychiatrist, he explained the reasons for my father’s abrupt discharge. According to medical practice, it was well known (from patients who could give a reliable history) that post-op pain is gone after three days. Given the state my father was in—he was groaning in evident agony—I began to suspect that the situation was purposely misunderstood by the professionals in charge of his care.
It was clear that there was no good future for my father: I knew his comprehension could not be improved medically; only his physical activity and his mental agitation could be subdued by drugs. Distressed myself, I pleaded with this psychiatrist that all my father needed was “care and comfort,” a phrase my own doctor had assured me was the medically acceptable option. At this, the psychiatrist looked me straight in the eye and said, “I’m sorry, but because of my own personal and religious beliefs, I am not able to discuss that with you.”
When we arrived at the Haverhill facility—which we only then discovered was a mental hospital—my father was already admitted to a ward of mostly elderly patients who, we had been told, were being treated for medical as well as psychiatric problems. However, it was there that an aide, trying to help my father to the toilet, recoiled in horror when he saw the staples still holding the incision site together, asking, “How do we get him to the toilet with a broken hip?” A staff social worker ... seemed surprised that this new patient had come from Maine, but then remembered that their marketing person had just visited the Maine hospital. My father’s transfer was apparently the first success of their new marketing campaign.
She told us that on Monday morning we would be called for a family meeting to consider my father’s care. ... His distress and confusion steadily increased. By Sunday, he was hostile, even to us (we had never seen that before) and obviously paranoid....
Monday morning came, and no one contacted us. I phoned both the social worker and the nurses’ station on the floor, but no one was available to talk to me about my father. Fifteen minutes after my last phone call, my sister received a call from the Haverhill hospital to inform her that they were transferring my father to a nearby regional hospital emergency room. Why? Because he was dehydrated and had an elevated white cell count.
When we got to the emergency department and saw my father, he was heavily sedated. ... We were later told that my father was not dehydrated and that actually his white cell count was only slightly elevated. The Haverhill mental hospital had kept him the three nights required for reimbursement by Medicare and then got rid of him.
The staff at the regional hospital were terrific. ... We agreed to have him admitted to their “Adult Behavior Unit”. ... Despite his dementia, my father had somehow retained the old-fashioned courtesy and personal decorum of a by-gone era—being addressed by well-meaning young staff members as “Sweetie” added to his bewilderment. He hated being there. ... A few days after Christmas, when it was evident that my father wasn’t going to improve and neither could he stay there, a thoughtful and efficient social worker suggested a hospice center also in Haverhill.
The hospice staff was uniformly kind, supportive, unhurried, and caring; they provided a wonderfully peaceful place to live while dying. He died four days later, and we still regret that he didn’t get there sooner.