Comfort care found to add precious months at the end of life
An interview with palliative care expert Cynda Hylton Rushton
Palliative care is back in the news, and fortunately, receiving much more thoughtful coverage on evidence of its benefits to patients, its ability to enhance standard, disease-directed care, and even its often elusive definition.
A recent study in the New England Journal of Medicine found that metastatic lung cancer patients who received traditional therapy and palliative care were more likely to live longer, report a better quality of life and avoid aggressive end-of-life care—as compared to patients who only received cancer therapy. Meanwhile, those who received aggressive treatment during their last days experienced the lowest quality of life and were the least at peace with their situation, according to the Aug. 19 study .
Now, the confusing discussion of whether doctors ought to discuss palliative care with seriously ill patients has resurfaced, and it challenges what many considered to be a poor decision: removing the advanced care-planning consultation (including palliative and hospice care) benefits from the federal health-care bill. The provision would have reimbursed doctors for time spent speaking with patients about their options and preferences for end-of-life care.
Palliative care remains misunderstood among patients, and even some physicians, in part because the term doesn’t obviously communicate the focus on the patient’s comfort and quality of life that are central to this compassionate practice—whereas “death panel,” while blatantly inaccurate, was instantly vivid. First uttered by former Alaska Gov. Sarah Palin (in a Facebook post , no less), the malicious phrase went viral online, in newspapers and on picket signs.
 Cynda Hylton Rushton, a core faculty member of the Johns Hopkins Berman Institute of Bioethics, says the fear and confusion is partially rooted in the deeply held values and assumptions about the meaning of palliative care. It is not synonymous with end-of-life care.
Palliative care is about living
“It is not about giving up. Instead, it may be the means to living longer and better,” Rushton says. “To discuss preferences about how one wants to live including which treatments one wants to receive honors the ethical principle of respect for persons, rather than undermining the dignity of life.”
Rushton says that describing palliative care as tantamount to “death panels” misrepresents the reasons for having conversations about preferences about treatment and end-of-life care. “The goal is to open the dialogue, not to convince people to pursue a singular course of action,” she explains. “Whether data will influence the understanding about such issues is unknown. But clearly, there are now facts to confirm that living more comfortably extends life—isn’t that the essence of a reverence for life?”
And along with the increased attention to palliative care comes a heightened focus on hospice care. Hospice care focuses on terminally ill patients who are no longer seeking a treatment or cure. But hospice is also but only one form of palliative care. In other words, patients may simultaneously receive disease-directed treatments while receiving palliative care, in order to help manage their discomfort and enhance their quality of life. That combination of care was precisely what the patients in the NEJM study received.
“Health-care institutions, including our own, have marketed the idea that we can cure or fix most problems. The reality is that there are relatively few diseases that are curable. Many can be palliated, but not cured,” Rushton says. “We must begin to articulate and accept the limits of our knowledge and science and consider our moral commitments to each other as human beings.”
Another study, published in May 2009 in the Archives of Internal Medicine , found that patients who discussed hospice care with their physician were roughly three times more likely to elect it. Other studies have reported that patients are more likely to choose comfort-based care once they have carefully considered all the information regarding their options, as well as the risks and benefits associated with each form of treatment.
However, doctors often find it extremely difficult to tell patients and their loved ones when an illness appears to be in its final stages. It is never easy to confront a person with his own mortality, and there is usually some other treatment option that hasn’t been tried yet and may offer some chance of success—however small that promise might be. Besides not wanting to extinguish hope, what physician would want to live with the doubt that he or she made the wrong decision?
And yet, bioethicists argue , to not present dying patients with all the facts is to deprive them of the ability to make a fully informed decision about how to proceed—a decision that is likely the most difficult one they will ever have to make.
At worst, this could be construed as doctors being completely deceitful. But more likely, they are ill-equipped to initiate a frank discussion with patients about end-of-life care. “There are clearly gaps in the education of physicians and nurses that spans their foundational training and continuing education. Many practicing doctors and nurses never had the kind of training that is needed to skillfully and competently navigate these complex conversations,” says Rushton, who has helped develop several innovative training programs for nurses and physicians over the years.
Providing palliative care alongside disease-directed treatments—making patients’ lives more comfortable while addressing troubling symptoms—may allow them to more openly approach decisions about how they want to live—and die. “One dimension of this is that some people perceive that there are no decisions about one’s dying,” Rushton says. “In fact, there are many decisions along the way that are open to people to consider how their dying honors the life they have lived, instead of seeing death as failure.”
Reframing the issue
Rushton makes the point that one of the most important distinctions is that palliative care is about living, and end-of-life care is one aspect of the continuum of palliative care. “We need a new narrative about what it means to live well within our communities. A re-framing of expectations is needed so that we can begin to accept that life is finite—that there are choices about how we live our lives and that medical technology is only one option,” Rushton says. “Much of what fuels the debates around health care is fear: People fear pain and suffering and being abandoned. If we could begin to address those fears, not by promising more technology and drugs, but through compassionate caring, communities, perhaps we could begin to create a new narrative about living.”
It is becoming increasingly clear that a cultural shift needs to occur in this country. “Expectations about modern medicine are often unrealistic, with many believing that access to treatment means access to every possible treatment—no matter how small the likelihood of effectiveness,” Rushton says. “The pursuit of cures and scientific discovery is needed alongside efforts to make the lives of those who will not benefit from the new discoveries more comfortable and supported.”