On Dying in America
The Institute of Medicine has produced a new report called “Dying in America” as reported in the New York Times on September 18th, 2014. The panel’s chairman, David Walker, was quoted as saying:
“The bottom line is the health care system is poorly designed to meet the
needs of patients near the end of life. The current system is geared towards doing more, more, more, and that system by definition is not necessarily consistent with what patients want, and is also more costly.”
Not surprisingly, the article also included a quote from Burke Balch, director of the National Right to Life Committee’s Powell Center for Medical Ethics.
“The report’s emphasis on cost-slashing will intensify, rather than calm, the well-founded fears of older people and those with disabilities that the renewed push for government funding and promotion of advance care planning is less about discovering and applying their own wishes than about pushing them to accept premature deaths.”
Cost, of course, is one of the forces driving the discussion, but the two quotes also illustrate a debate that is trapped in previous assumptions. Marc Dunkelman, in discussing the exploding costs for medical care noted:
“…two conventional narratives have come to frame the answer. The first is largely demographic: as the baby boomers age out of the workforce, the number of workers paying into the system won’t keep pace with those drawing benefits out…Second, many people argue that the unsustainable growth of entitlement programs has been driven by a health care delivery system run amok…But while those two factors get all the press, there a third issue at play—one that most Americans would likely celebrate. Health-care costs are being driven up by the fact that, on the whole, Americans don’t die young anymore. Over the last several decades, the rate of death from acute medical conditions, infectious diseases, malnutrition, and workplace accidents has been stemmed by miraculous advances in medicine and public health…Unfortunately, the nation’s social safety net hasn’t adjusted to the new landscape…Institutions constructed to address the challenges of a population that died much younger have been caught flat-footed when asked to care for the nation’s burgeoning population of old people.”
The full report is available from the Institute of Medicine. As is typical for IOM reports, it is thoughtful, data-based, and was written with a full awareness of the problem from the standpoint of patients, families, providers, and society.
Many people nearing the end of life are not physically or cognitively able to make their own care decisions. It is often difficult to recognize or identify when the end of life is approaching, making clinician-patient communication and advance care planning so important. Advance directives were developed to ensure that the decisions people made when fully able are followed when they can no longer speak for themselves. However, these checkbox-style documents have proven inflexible, inconsistent with subsequent events and decisions, and for various reasons both ineffective and unpopular…the vast majority of people have not engaged in an end-of-life discussion with their health care provider or family and do not have an advance directive. People who are younger, poorer, less educated, and nonwhite are less likely to have such a document. Moreover, within all population groups, end-of-life preferences vary widely. Clinicians and even close family members cannot accurately guess or assume what an individual’s preferences will be; they must ask the patient—that is, have “the conversation”—and do so as often as necessary.
Advance care planning conversations often do not take place because patients, family embers, and clinicians each wait for the other to initiate them. Understanding that advance care planning can reduce the burden of confusion and guilt among family members forced to make decisions about care can be sufficient motivation for ill individuals to make their wishes clear. Even when these important conversations have occurred and family members are confident they know what the dying person wants and wishes, making those decisions is emotionally difficult, and families need assistance and support in this role. (p. S-9).
Certainly these statements are consistent with my experience dealing with “end-stage” disease, particularly kidney failure, over these past 40 years. While I have a desk drawer full of thank you notes from families after the death of their loved one, I also remember one family member who accused me of negligence and “allowing my mother to bleed to death,” even though she was sentient and expressed a clear desire to cease further efforts to prolong her life. Then there was the son who wanted to know why his mother had a pacemaker placed three months earlier when she had requested DNR status and had then died without resuscitative efforts. While it is easy to categorize these statements as expressions of grief, intellectualization of their attacks does not reduce the distress I experienced as the target.
The report recommends more formal training for physicians and other healthcare professionals in communication about dying. While I agree, I am a bit skeptical about the training aspect. My observation has been that physicians, being human, vary widely in their innate comfort level discussing death. Studies show that many of us were drawn to medicine by a desire to thwart the effects of disease and certainly to delay, if not prevent, death. While age and experience may teach the physician the limits of his/her therapy, it does not necessarily lead to more comfort discussing the issue, particularly if one is occasionally subjected to the sort of attack mentioned previously.
The report does discuss the financial implications of end-of-life care, as mentioned in the quotes from The New York Times. However, they are not calling for cessation of acute care, but for a bolstering of supportive care services. The authors explicitly state that “many of the most urgent needs of these patients and their families are not medical per se” (p. S-13.) This gets at the point made by Dunkelman, that our systems of care were designed for acute illnesses, and our social support systems for frail persons has not evolved to keep pace with the medical realities.
Lastly, the report calls for developing public awareness and a common vocabulary about these difficult issues.
More than a quarter of all adults, including those aged 75 and older, have given little or no thought to their end-of-life wishes, and even fewer have captured these wishes in writing or through conversation. This is the case despite the results of recent polls showing Americans harbor several consistent worries about care near the end of life, centered around its potential high costs and the desire not to be a burden—financial or otherwise—on family members.
Expecting people to understand or have meaningful conversations about end-of-life care issues presumes a common vocabulary; however, surveys show people do not understand what palliative care is or what role it plays near the end of life, do not have a clear concept of “caregiver,” and may be confused by the various titles assigned by state laws to people who serve as health care agents (such as surrogate decision makers or proxies). Even some clinicians mistakenly confuse palliative care (care oriented toward quality of life for people with serious illnesses) with hospice (a model for delivering palliative care for people in their last months of life).
The urgency of the problem is nicely illustrated by data showing 14% of the U. S. population has both chronic medical conditions and functional limitations, while only 48% were characterized as having no chronic condition or functional limitation. (p. I-3). In other words, what we normally consider “good health” is a minority experience. Not surprisingly, this healthy minority represents only 14% of the total cost of healthcare.
For physicians, the challenges outlined in the report are clear. The report identifies several areas where we can make a difference that is important to both patients and to the organizations that serve them. Key are the “problem of burdensome transitions” and frequent re-admissions, unwanted or burdensome care, and earlier and more frequent involvement of a specially trained palliative care team.
The report does consider the problem of quality metrics, although most of the focus is on those specific for hospice care, and the lack of recognized metrics for palliative care.
It does not consider a problem I encounter regularly, the “hospital-dependent patient.” As defined by Drs. Reuben and Tinetti,
Hospital-dependent patients differ from those with chronic critical illness, many of whom require ventilators to sustain life, in that they may be precariously and transiently compensated while hospitalized. They are often comfortable and may have an acceptable quality of life (e.g., interactions with family and friends) in the hospital when supported and comforted by high nurse-to-patient ratios, available monitoring and diagnostic capabilities, and on-site physicians and therapists who can respond quickly to changes in their condition. Yet they are unable to make it outside the hospital setting when the response is not quick enough or the necessary treatments are not available. Such patients are usually old, almost always have multiple chronic conditions, and have minimal physiological reserve to compensate for acute stress or injury. They develop pulmonary edema, flares of chronic obstructive pulmonary disease, orthostatic hypotension, myocardial ischemia, acute kidney injury, fevers, and sudden delirium and may experience falls, often without identifiable precipitants. Hospital-dependent patients tend to follow a course of readmissions with progressive deterioration in functional status and loss of resilience over a period of months to years. Usually, each re-hospitalization finds them worse than when they were discharged a few weeks (or days) earlier, and treatments become less effective. The final period of life is often characterized by a series of crises, apprehension, and discomfort until a decision to switch to hospice care is made or the patient dies in the hospital despite the fact that “everything” was done.
Our current practices are designed to minimize time in the hospital, while making sure we “check the boxes” required to prove we are providing high quality care. For the patient with congestive heart failure, for instance, this means frequent checking of laboratory studies, radiography, and echocardiograms, even when these were done recently. Sometimes, the studies are repeated, because the clinical condition seems different, sometimes it was an honest oversight of the previous report. More often, I fear, it is because the computerized order set is easier to implement as a package than to de-select the items placed there to make sure the hospital scores well on its publicly reported metrics.
As I see it, our challenge is to identify when the patient has started on the progressive deterioration as outlined above. While everyone touts electronic medical records, and I use three regularly and a fourth occasionally in my practice, none do a particularly good job at helping me recognize that the frequency of hospitalization has started to increase. For those for whom I am providing outpatient dialysis care, I have the opportunity to see their frailty develop over time, independently of the need for hospitalization.
This is not all that difficult. I remember talking to a long-term patient in the office about another long-term patient who had recently died. She observed: “Yes, I was not surprised. When I first came back to dialysis (from a failed second kidney transplant), she was walking into the unit. Then she was using a walker, and here lately, she had been coming in by wheelchair only.” We really need to find a way to configure our EMR’s to make it easier to capture the clinical realities noted by this astute patient.
My current research interest is in creating a usable working definition of frailty in dialysis patients as a way of identifying patients for whom palliative care plan goals are more appropriate than “standard” care plan goals. The preliminary stages have identified some workable candidates, and I hope to be able to test the prognostic value of this approach in a large cohort of patients.
This project has been met with skepticism by some of my colleagues, resistance by some, and whole-hearted cheering by others. I think all of our professional societies need to work harder at defining circumstances where our “usual and customary” care is no longer appropriate. This effort, while difficult, is certainly congruent with the thrust of the IOM report, and would represent a professionally responsible effort to not only define not only what we can do, but what we cannot do using the best evidence available. What do you think?
9 October 2014
Rationing is a dirty word, but a necessary part of healthcare reform. A consideration of the implication of this for practicing physicians.
CMS is in its third year of applying penalties to hospitals with excess readmissions, but almost 75% of hospitals were penalized this year. Is this a quality improvement or a surtax?
Shared Decision Making
A consideration about decision making at the person, group and organizational levels.