In a “reversal of an earlier reversal,” the Obama administration recently “pulled the plug” on its regulatory efforts to reimburse physicians for providing patients with counseling and advanced care planning information. This concept was jettisoned during ACA’s debate and ultimate passage. We all recall the “death panel” controversy and the ensuing debate that ultimately cost this reform provision its life.
Those of us who care for patients at the end of life cringed when the death panel image was resurrected. End-of-life care discussions can provoke emotion, fear and outright dread. Despite greater acceptance of hospice and palliative care in recent years, underlying attitudes and expectations have not changed much. The outcry in response to the news of the regulatory change reflected the distaste and discomfort with the mere mention of terminal illness, treatment and care options.
But if we can take away the emotions, what was the proposed regulation really about?
In its purest sense, it was about supporting both information transparency and consumer-driven care:
- Setting up a mechanism to help patients and families understand their choices as they try to negotiate our complex healthcare system.
- Making the information available before the need, when it’s more likely to be rationally and calmly considered.
- Providing patients—consumers—with enough information to make informed decisions about deeply personal matters.
The proposed change would have legitimized the idea that good care includes physicians who counsel and support patients as they contemplate end-of-life options. This is one reason that it brought another wave of “death panel” outcries. Some 70% of us are likely to receive care at the end of life that is neither wanted nor helpful. Isn’t this an area that warrants greater attention by physicians, patients and payers? End-of-life care is care. Discussing care and treatment options with patients is part of what physicians do every day.
Those who oppose physicians being paid for a one-time patient consultation about end-of-life care insinuate that patients may be directed to less costly options that also involve less aggressive treatment. Put bluntly, they charge that physicians may feel they need to gently suggest that people not make our system pay for end-of-life care when they are going to die anyway. Do we really believe that those who take an oath to “first, do no harm” would approach a request to help someone in this manner?
Fear of mortality
Discomfort with our own mortality underlies the opposition to paying for end-of-life consults. Our medical system views death as the ultimate adverse outcome. Yet, at some level, we all know our lives are finite. Speaking openly and honestly about it appears to be one of the strongest and final taboos in a culture that has so few unmentionables left. Politically, the discussion of dying has certainly emerged as a third rail.
Maybe those who look at the growth of health care costs have that ugly gut feeling that we can’t sustain the anything-you-want approach to care, especially at the end of life. At some level, we know there are limits to our lives and to what modern medicine can ultimately do to hold off death. But if we talk about it with a medical professional we trust, we have to openly acknowledge that it is still rarely spoken about, and quietly when it is.
The irony is that if we were presented with good information on outcomes and quality of life, with enough time and opportunity to consider and discuss it, many of us would not want the end-of-life care that the system typically provides. At the least, we would want care consistent with our own stated wishes and needs.
A study by the Dana-Farber Cancer Institute in Boston showed that patients with end-stage cancer, who were able to have conversations with their physicians about treatment options and care, had a better quality of life and death than the control group who had no such conversations.
Both groups—those who did not discuss options, and those who were able to get information about their condition and treatment options—lived the same length of time. But those who directed their own care not only cost one third less than those who did not, but they and their families reported better physical comfort, coping and acceptance. Better quality outcomes were achieved, and reductions in spending followed. The take away here is that access to information, and discussions with those providing care, are essential to give patients improved quality of life.
Hidden healthcare costs
There are costs associated with our denial of death and our discomfort with confronting end-of-life care—not only in dollars but also in quality of care and quality of life. Most of us have heard some variation of the statistic that almost 80% of our lifetime medical spending will take place during the last year of life, with the vast majority of that occurring within the last 30 days. But focusing solely on the monetary cost of end-of-life care gives support to those who invoke the “death panel” boogeyman.
According to a recent Time/CNN Poll, more than 70% of us say we want to decide about the type and location of the care we receive at the end of our lives. Yet fewer than an estimated 25% of us have valid advance directives in place that specify these wishes. Most of us say we want to die at home, yet 70% of us will end up in an institution. We provide care and utilize resources where the least good is done, from both quality of care and quality of life perspectives.
Much of this unwanted care occurs because patients and families are faced with confusing choices and limited information while under great duress—usually when they or their loved one is seriously ill. How different might their experience and choices have been if conversations had taken place ahead of time? Why should there be so much fear and resistance to making changes that can provide greater clarity and help patients make their care preferences known?
Patients and families need access to clear and complete information on choices for end-of-life care. They need the support and attention of those they trust to prepare the instruments and documents that can make their preferences known. Informed patients make better decisions; they feel empowered and have less anxiety.
The Obama administration’s decision to back away from allowing doctors to be paid to counsel patients with end-of-life concerns further delays the changes we need in end-of-life care.
It is a sad commentary that America is still uncomfortable with patients who want to compassionately, rationally and openly ask their physicians to help them address the one experience we’ll all have, when most of us will interact with our medical systems. Better informed and prepared patients may well ask something different of our system and their medical providers in the future.
Clearly, it’s uncomfortable to talk about the finite nature of our lives and the limitations of medical technology to prevent the inevitable. We also know that legal documents imperfectly express our wishes about unpredictable future situations or conditions. But seeking information often will and should lead to patients’ and families’ conversations, clarifying values, goals, needs and wishes about end-of–life care. And this actually can result in good quality care more consistent with patients’ desires.
Yielding to shrill voices that play on fear and ignorance lets denial and avoidance continue as standard operating procedure, leading to wasted resources, needless suffering and ineffective care.
By pulling their efforts to implement this important regulatory change, the Obama administration backed away from what they judged to be the equivalent of committing political seppuku. The symbolic meaning of this action is clear, whether or not we are comfortable talking about the ends of our lives and the limits of our medical care system to prevent death.
Our system must find ways to provide better quality palliative care to patients at the end of life. We need to make it easier to empower patients to obtain the information they need to direct their own care, and then talk with those who will be involved in their care about what they want.
Let us hope that in the future, these conversations that matter can become part of how we normally provide medical care at the end of life. For now, we have missed another opportunity.
Susan Ponder-Stansel is President and CEO of Community Hospice of Northeast Florida in Jacksonville.