I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone.
We would like to think Hippocrates made this statement about the field of palliative care. Considering the state of medical practice during Hippocrates’s time, and the definition of palliative care, he probably did.
The World Health Organization1 defines palliative care as care that
improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.
This should be how all medical care is defined. But unfortunately, it is not. To better understand why palliative care is an important issue in the current debate about health care reform, we first briefly review landmark legal cases in the area of end-of-life care. We then discuss the role of palliative care in conversations in the current health care climate and conclude by emphasizing the importance of integrating palliative care into the standard medical curriculum.
A Brief History of End-of-Life Care in the United States
The 1970s brought technology, gadgets, and the “do everything always” mantra to U.S. medicine. With these scientific advancements, suddenly “doing everything” included supporting life in minimal states of consciousness for indefinite periods of time. Initially, patients found this “unnatural,” and it brought backlash.
In 1975, the parents of 22-year-old Karen Quinlan sought removal of Karen’s ventilator given her persistent vegetative state. Karen’s parents saw their daughter’s treatment as extraordinary measures that conflicted with their Catholic values. In the landmark legal case Quinlan v. New Jersey,2 the lower court initially ruled in favor of the hospital, holding that the Quinlans could not request removal of the ventilator. However, in 1976 the Supreme Court of New Jersey reversed the decision, and Karen was extubated.
This case is legally significant both because it contributes to the law of surrogacy and also because it defines patient autonomy in medical decision making. It is culturally significant because it demonstrates a shift in medicine. Pursuit of all heroic interventions at the end of life was becoming the default position.
Since then, the pendulum has swung. The medical profession began to realize that “do everything always” is usually not what is best for the patient. In fact, it is not the type of care most physicians choose for themselves and their families.
A recent study from PLOS ONE3 showed that doctors’ opinions about end-of-life care have not changed significantly since 1989, a year before the Patient Self-Determination Act was passed. In a 1989 cohort of surveyed physicians, 88% wanted to be an organ donor and chose DNR/DNI (do not resuscitate/do not intubate) status. The results of a repeat survey in 2013 were the same. Interestingly, we also know this aligns with the wishes of most Americans: 80% of patients would prefer less aggressive care at the end of life—specifically to avoid the terminal cycle of hospitalizations and intensive care unit admissions.4 Fifty-five percent of patients who indicate they want to die at home, die in the hospital.5
To add to the quagmire, the tragic case of Baby “K,” the anencephalic infant who was kept alive via court order despite her terminal prognosis, positioned the right-to-die conversation on a collision course with the right-to-life movement.6 This debate has continued with the most recent devastating situation of Jahi McMath, the 13-year-old with a brain death diagnosis that her parents continue to challenge.7
One could argue that these latter examples are exceptions because issues surrounding death and palliative care involving children are different. However, these types of cases have muddied the conversation and introduced an element of distrust surrounding end-of-life care. There is a creeping misconception that physicians may not advocate fully for patients who are terminally ill.
We see this distrust in other ongoing debates about end-of-life care. In 2009, attempts to incorporate compensation for end-of-life conversations into the Affordable Care Act (ACA) and other pilot programs to better study and fund palliative care resulted in a deteriorative discussion of “death panels.” Americans are undeniably uneasy with end-of-life discussions. But the true value of and need for these conversations was drowned out by the invective.
The Missed Conversation
Recently, a junior attending physician was recalling a patient she met in the elevator on his way to the hospital’s palliative care unit. He requested the floor number, but then asked: “What is palliative care? I have never heard that term before.” The physician admitted she was a little shocked by the man’s question given her perception of the public discourse on the issue recently, but this should not have been unexpected. When the topic of palliative care comes up, people are always surprised to learn that it is not “just another word for hospice.” It includes hospice but is also the long-term coordinated care of the chronically ill, which is delivered at a cost savings.
Why does it matter that the average American understand what palliative care means? Because right now we are spending exorbitant amounts of money on health care we do not want and cannot afford.
Five percent of Americans account for 50% of the health care dollars spent in the United States,8 and those are largely spent at end of life. Specifically, 5% of Medicare beneficiaries die each year accounting for about 27% of Medicare expenditures.9 Given that 80% of patients want less aggressive care at the end of life,4 it is likely that much of the care received by this 5% is unwanted.
And we know that palliative care works. A 2010 study published in the New England Journal of Medicine compared a palliative care model with a regular care model in cancer patients. The patients receiving palliative care showed 58% less depression, 39% less aggressive end-of-life care, and longer median survival times by several months.10 In 2007, the American Journal of Managed Care published a review of the palliative care model as applied to a patient cohort that largely carried an oncologic diagnosis. The report showed 30% fewer emergency department visits, 28% fewer hospital admissions, and two years more life expectancy under the palliative care model. This study also showed that the price tag for these results was $18,000 per patient/per month lower than the regular care model.11
Yet, currently Medicare beneficiaries have to choose between hospice care and curative care—they cannot have both at the same time.12 This is a ridiculous choice to make. Given what we know about the palliative model and that chronic conditions make up the largest proportion of expenses in the Medicare program, focusing more resources on palliative care in the ACA and aggressively pursuing Medicare reform that incorporates a palliative care model seems like low-hanging fruit. Yet while the ACA does contain provisions that attempt to shift reimbursement away from fee-for-service to value-based care with models like accountable care organizations and patient-centered medical homes, palliative care was left a nonreimbursable service. This happened because we could not have the conversation we needed to have.
We are now seeing private insurance companies offering reimbursement for advanced care planning discussions, and palliative care is the fastest growing specialty field in medicine out of sheer demand. Eighty percent of Americans want to die at home and avoid ICU care.13 As of 2011, 67% of all hospitals with 50 or more beds14 and 85% of hospitals with more than 300 beds had a palliative care team.15 In 2000, only 24% of hospitals with 50 or more beds had palliative care programs.14
These are steps in the right direction, but they are not enough. Most people who die in this country are on Medicare. The need for palliative care and required policy reform is not something we can continue to ignore.
The Missing Piece?
So, why the delay in embracing palliative care models? It would be naive to say the answer is anything but multifactorial. But we do think there are a few key issues that put the pieces together.
First, it is very difficult to comprehend the concept of a “natural death.” We believe most people hope to die peacefully in their sleep at home. However, once doctors start intervening and adding treatments and devices, the concept of natural becomes the path of least resistance or “letting things play out.” Death on a ventilator may seem natural because it means we are letting the illness take its course, despite the fact that the very involvement of the ventilator already takes “natural” out of the process.
Second, there is an unfortunate distrust of the medical establishment that has paralleled the public awareness and discussion that health care costs money, and your doctor is aware of that fact when treating you. A slow dissolution of trust in the medical establishment has been an unfortunate side effect of our national discussion on the rising cost of health care. With physicians as the gatekeepers, they are inherently implicated as potential nodes for making cost-conscious decisions. But when “cost savings” is translated to “rationing,” doctors sitting on government panels meant to control costs become “death panels,” and patient autonomy is quashed. A clear discussion of palliative care and the benefits and cost savings it provides as an added service, not as an act of rationing, can change minds. But even broaching this subject has been a challenge.
Which leads to the third issue: If we want patients to understand the dying process and to trust us, we clinicians need to be more comfortable with death ourselves, and better equipped to care, consult, and console. We must all come to terms with the fact that a cure is—at best!—temporary.
Changing Medical Education
The American Academy of Hospice and Palliative Medicine Workforce Task Force estimates that there is a shortage of as many as 18,000 palliative care doctors in the United States.16 While we need to fill the gap in physician coverage, we also need to bring palliative care to the forefront of conversations about health care.
In September 2014, the Institute of Medicine (IOM) released the report Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life,17 which quantified the significant shortage of access to palliative care services in the United States, especially in rural areas. The report explained that the best way to fill the gap was to train all physicians in palliative care techniques. All physicians should be “competent in basic palliative care, including communication skills, interprofessional collaboration, and symptom management,” the report concluded.
Currently, U.S. medical schools include an average of just 17 hours of end-of-life care instruction in four years of training.17 That is the equivalent of one morning lecture a year for four years.
Furthermore, in talking to young students and residents at our institution, Vanderbilt University School of Medicine, it is clear how uncomfortable most of them are with walking into a patient’s room and addressing code status, much less navigating the issues of a terminal diagnosis. And this is after some exposure in their early medical education to palliative care.
A significant barrier to palliative care education is the practicality of adding to the already-crowded repertoire of medical student testing. To become a licensed physician, students and young doctors must pass the United States Medical Licensing Examination in three Step exams over the course of medical training. The same debate that applies to elementary and secondary education applies here too: We have to teach to the test if we want to produce licensed physicians. The IOM17 recommends that medical schools, accrediting boards, and state regulatory agencies change certification requirements to include palliative care, but that the impetus to change curriculum is highly informed by what is on the test.
The IOM17 also focuses on the significant lack of communication skills training in medical school and residency. In a profession that deals daily with life-and-death decisions, communication skills are paramount. But in the palliative care space, being effective is about more than just delivering a clear explanation. It requires empathy.
And palliative care is one area where empathy should not be so hard to find. We will all face these exact decisions ourselves. Yet, to cope with the emotional stressors of being a physician, we learn to put distance between ourselves and our patients—even a patient who is facing death. Effective empathetic communication about end-of-life issues requires the physician to have spent some time contemplating and processing his or her own mortality, and we should be doing this in medical school and residency.
Ironically, while we try to avoid the fact that the natural course of a human life always ends in death, we depend on death in our training. We use cadavers in anatomy class, and interns and residents are allowed to intervene in patient care when we know that death is inevitable. The only chance to do that emergent periocardiocentesis is probably on a patient who will almost certainly not survive. But instead of sensitizing us to the life cycle, this often has the effect of hardening and distancing physicians from death, perhaps because it is easy to interpret the Hippocratic Oath as a charge to cure instead of as an opportunity to care, consult, and console for a patient’s full life span. Maybe it is one way we cope with our own mortality.
However, dealing with death on a personal level is an imperative prerequisite to dealing with the death of our patients. We are trained to cure, but to “cure” is incongruent with the course of a life. In fact, we should view the word “cure” as an anathema. Life is finite and fragile. As physicians, we must grapple with this truth before we hold the hand of our first dying patient.
As a society, we will come to accept palliative care as a much-needed and desirable field of medicine. It is what is best for patients, and we cannot afford not to. But getting there will require a multifaceted approach including payment reform, encouraging an open conversation among the U.S. public, and training our physician workforce to offer the best possible care and guidance until a patient’s last breath.