In June of 2011, I flew to Washington, D.C. to say good-bye to my friend, Alvin. I wanted to be there with him and his family during his peaceful passage from this life. Unfortunately, his end was not peaceful. It was a nightmare because he, like too many patients being transferred from one level of care to another these days, was lost in the transition abyss.
I had known Alvin my entire life. Through his leadership at the Equal Employment Opportunity Commission — where he served as deputy director for many years — he was an example to me and countless others of what a government agency can accomplish through the efforts of idealistic and empathic individuals.
I knew he was ill with a terminal disease. We had talked about it together on a number of occasions after he first sought my advice. Less than a week before he died, Alvin was hospitalized for pneumonia — the most common cause of death in patients with his disease, end-stage pulmonary fibrosis. He was admitted to one of our nation’s premier academic medical centers, his doctor there a specialist in lung disease. He was treated with powerful antibiotics and steroids, given 100 percent oxygen to breathe. His grip on this life rapidly waned.
My friend could have opted for continued life support, to have had a tube inserted into his windpipe while attached to a mechanical ventilator. Many others might have chosen this route.
In our conversations, Alvin made it clear to me that he believed that living on a machine was not living at all. He understood the logistical and economic realities: If he chose to live on in an Intensive Care Unit — an expensive and limited resource in today’s high tech medical world — intubated and on life support, he would be depriving others, perhaps younger and more viable, of a better chance of survival. “I do not want that for myself,” he told me more than once.
Alvin chose palliative care, hospice care. He chose to die at home, his family by his side. I am a primary care doctor who has worked in the medical trenches for 35 years. I believe that Alvin made the right decision.
It should have been a peaceful passage. Palliative care medicine has come into its own in recent years. Very few, if any, patients have to suffer in their last days and hours. Hospice has been central to the improvements in end-of-life care. But sadly, Alvin’s death did not happen this way.
He was sent home from the hospital with orders for oxygen. A prescription for morphine was handed to the family with little instruction on how to appropriately use the drug. Hospice was — rightly — expected to handle this.
Alvin arrived home by ambulance, and it was immediately apparent that the home oxygen supplied was insufficient for his needs. The EMTs had only one answer for this: “We’ll just take him back to the hospital.” The family, trying to honor Al’s wishes, refused. They then discovered that many pharmacies were closed; the open ones refused to fill the morphine prescription. The hospice personnel — their services supposedly arranged at hospital discharge — were nowhere to be found on a Saturday evening.
I arrived from Texas at 11 o’clock that night and found my friend, five hours after leaving the hospital, struggling for each breath. He was tangled in his oxygen tubing, incoherent, ripping off his mask moment to moment. He was suffocating. His family was distraught. With the help of a private duty nurse, we managed to settle him down once we were able to secure additional oxygen and, finally, the morphine — and use it appropriately and effectively.
Sixteen hours after arriving home, Alvin passed away. Two hours after this, a nurse from a hospice agency showed up at the door for the first time. “I’m terribly sorry,” she said again and again. “It’s not supposed to happen this way.” And then she added, “I’d like to say it has never happened this way before, but that wouldn’t be true.”
She instructed me to flush the almost full vial of morphine down the commode, and attest to this for the record. “Be sure you remove the label and shred it before you throw the vial away,” were the nurse’s parting words. Of course, there is a rationale for this, but given how much Alvin-the-person struggled without hospice assistance, I could only shake my head at what seemed a silly detail in this sad circumstance. “I don’t make up the rules,” she said.
THE ROOTS OF THE PROBLEM
According to the National Transitions of Care Coalition, 42 percent of hospitals surveyed reported that “things fall between the cracks when transferring patients;” on discharge, 30 percent of patients have at least one medication discrepancy; one in five U.S. patients discharged to home experience an adverse event within three weeks; and on average, 20 percent of Medicare beneficiaries who are discharged are readmitted within 30 days, 34 percent within 90 days.
The manner in which my friend died is categorized by those who study these things, as a “system error.” A nice, clean term, shorn of emotion. But how did our system of medical care get to this treacherous place, where so many patients awaiting transfer from an acute care hospital to the next level of care teeter on the edge of a transition abyss?
The driving force behind these changes has been Medicare. Its “prospective payment system” (or “Diagnosis Related Group” protocol, wherein payment is based on diagnoses rather than true costs) forces hospitals to plan discharges practically from the moment patients are admitted in order to maximize their profitability under this system. Which is why patients are sent out “quicker and sicker” than ever before. Even if they have only a few hours of life left in them. The mindset of many doctors towards the best interest of their patient has been negatively impacted as a result of this DRG system. Worse, physicians are financially incentivized by managed care, and soon by “accountable care,” to progressively shorten hospital lengths of stay.
We also have Medicare (enabled by the medical-specialty dominated American Medical Association) to thank for the withering of primary care in this nation. The Centers for Medicare and Medicaid Services has chosen time and time again to reimburse technical medical procedures far above and beyond “cognitive services” — the thinking, reasoning, and consensus-building skills involved in sound clinical decision-making in day-to-day, year-to-year, patient-by-patient doctoring. As we collectively hurtle down the path of health reform — as policy wonks promote still largely untested entities known as “medical homes” and “accountable care organizations” (ACOs) — I see no concrete proposals that are apt to change the status quo.
In addition, the current “hospitalist” approach to inpatient medical care, which has all but replaced the old “attending physician” model, too often does not provide the level of comfort that patients and families need and deserve. In September/October of 2008, a study by Pham, et al in Health Affairs concluded that hospitalist care increases the burden of care coordination and blurs accountability for the quality of post-discharge care.
The proponents of this model have always argued that care provided by hospitalists is more efficient and — especially in these days of impending Medicare insolvency — cheaper. However, in a recent study (Annals of Internal Medicine, August 2011), Kuo et al, after reviewing almost 60,000 Medicare cases admitted to 450 hospitals across the nation, concluded that this is not the case. Indeed, despite shorter lengths of stay, hospitalist-treated patients were less likely to be sent home post discharge, less likely to have follow-up with their primary physicians, and had more readmissions and ER and nursing home visits. These added costs — which in large measure contribute to the transition abyss problem — combine to offset any savings due to hospitalist inpatient care.
BRIDGING THE TRANSITION ABYSS
For the complex medical patient, for the difficult issues raised by ministering to the frail elder, and for the fraught circumstances at end-of-life, someone must be in charge. Someone who shoulders the burden to “attend” her patient. To arrange and follow-up on the often mundane but essential discharge instructions. To be the safety net for the transitions-in-care pitfalls that occur when patients are transferred to multiple care sites: hospital to skilled care to rehab to nursing home and finally, maybe, back to home.
What can medical professionals — doctors, nurses, social workers or anyone given the task of discharge planning — do to help prevent our patients from falling into the transition abyss? Attention to detail is the essential attribute. On the day of discharge one must sit down with the medical chart in hand and document current plans, orders, and medications for the patient. This “discharge summary and plan” is usually dictated into a medical record system, but often there is a delay of a day or more until the final typed report gets to where the patient is going. Written instructions in some form must accompany the patient. Too often they do not.
A telephone call to the responsible individual at the facility is another essential step in the process that can easily be overlooked in the din of an acute care hospital, lost in the chaos of shift changes. Still, attention to detail is a time-tested system that works — and might even be enhanced if the electronic health record can be serviceably adopted across all sites of care, which is not generally the case today.
The American Medical Directors Association (AMDA–of which I am a member) is an organization dedicated to high quality care in skilled nursing units and long-term care facilities. These facilities struggle every day as patients are dropped on their doorsteps after being discharged — often too abruptly — from acute care hospitals. Staff do the best they can sifting through hastily copied hospital records trying to determine the patient’s diagnoses, medication list, treatment plan, code status, etc. — all the essential information needed for a smooth transfer. Too often it is not available.
AMDA recently published “Transitions of Care in the Long-Term Care Continuum,” a 72-page practice guideline to assist caregivers with the transition process. It is a fantastic document outlining chains of command, and full of checklists and tables. But will it be used?
The transfer process is incredibly time-consuming. And, of course, Medicare does not begin to recognize these efforts at “care coordination” with anything that approaches reasonable reimbursement. Nevertheless, professionals involved in transfers must be invested in the long-term best interest of the patient. In this age of “team care,” the responsibilities are often diffused, lines are blurred. When the system fails, finger-pointing becomes the default position. The AMDA guideline says it best:
There was an important job to be done and Everybody was sure that Somebody would do it. Anybody could have done it, but Nobody did it…Everybody blamed Somebody…when Nobody did what Anybody could have done.
And yet, I believe that “team care” is a concept whose time has come. But only if there is a quarterback, a team leader whose responsibility it is to make sure all proceeds according to the game plan. These “transitionalists” are called many things depending on the institution in which they work: “guided care nurse,” “transition coach,” and “transition care nurse” are a few of the labels in use today. And in these harried times, this class of professional is perhaps better qualified than most doctors to carry out this role.
IT COMES DOWN TO EMPATHY
Better qualified than a doctor? Why might that be?
Medical education — with its emphasis on the intricacies of modern medical science and research — too often fails to train young doctors sufficiently in end-of-life counseling and palliative care treatment measures. There is so much to learn and so little time. I am often surprised by how many fourth year medical students have never, in their clinical encounters, experienced in an up close and personal manner the death of a patient, the suffering that too often befalls individuals and families unprepared by their caregivers at life’s end. These young doctors are only months away from going out into the world to care for you and me. Why have they not had more experiences on which to hone their empathy? And without these experiences, their ability to foresee the potential devastation of a poor transition is limited indeed.
I believe that the unnecessary suffering my friend Alvin and too many others endure while lost in transition is not just a “system error.” It is a system-wide lack of empathy. Tell me: What would have been the harm in discontinuing all treatment except for oxygen and morphine while keeping my friend one more night in the hospital? Surely, a doctor with any experience should have realized that Al could not last longer than another day, two at the most? This is for a physician to gauge, not a family member. Traditionally, this was the role of a patient’s family doctor, once a wise and informed friend. And an advocate.
And where are today’s primary care doctors? Sadly, they are missing in action, as medical students choose more lucrative and predictable careers as hospitalists, proceduralists, intensivists, and specialists. The percentage of medical students who choose primary care has collapsed by 50 percent in the last few years alone.
Perhaps it is time look at other systems, other models. Great Britain, where the concept of Hospice care arose, has recently enacted its “Gold Standard Framework (GSF)” described as:
a systematic common-sense approach to formalising best practice, so that quality end of life care becomes standard for every patient. It helps clinicians identify patients in the last year of life, assess their needs, symptoms and preferences and plan care on that basis, enabling patients to live and die where they choose. GSF embodies an approach that centres on the needs of patients and their families and encourages inter‐professional teams to work together.
We live in an age of medical miracles, of mega-medical complexes, of teams of caregivers and researchers, of pharmaceutical cornucopias. And yet, every day we fail patients because, in our rush to get on to the next case, we forget something essential, something basic to caregiving: beneficence.
May the hours my friend spent lost in transition before his death remind us that bureaucracy — including the practice of medicine itself — devoid of empathic responsiveness is hypocrisy, and may not lead to that peaceful passage each of us will one day seek.