So important; so misunderstood... how to handle end-of-life-care. This subject is easily among the top items on my list of Things That Seriously Get Under My Skin. Earlier this year, I posted a long but excellent essay by Atul Gawande about this same topic here.
In my experience shadowing palliative care doctors, learning about end-of-life issues in med school, and having conversations with friends and family members who have experience with hospice, I can't help but raise a skeptical eyebrow at two of the quoted doctors in this article, as well as others who share their opinion that any legislation aimed at addressing the obvious deficits in thoughtful, informed-decision-based care of patients and their loved ones during a very hard time is somehow overstepping its bounds and "telling people how to die."
Research shows that, across the board, both palliative care and hospice increase quality of life, increase quality of care, increase satisfaction of patients, their caregivers, and their healthcare providers, lead to fewer invasive procedures and lower usage of medications, and even prolong life when patients are informed about and given the chance to utilize these options.
I think that part of the problem of how we deal (or, more accurately, don't deal) with these issues lies with the failure of most medical schools and residency programs to provide any training in these areas, leaving most doctors without the necessary tools to feel confident that they can provide meaningful care to their patients in any way other than trying all possible interventions to keep them alive as long as possible. But I also think that a large part of the blame for our lack of compassionate end-of-life care lies with the toxic political discourse that has been perpetuated in this country about this subject. Politicians pursuing personal gain have manipulated the public understanding of this critical aspect of healthcare to score cheap points by throwing around terms like "death panels."
This robs both patients and their physicians of the opportunity to have straightforward, honest and caring conversations with accurate information about end of life options; conversations that would empower patients and their families to think about and actively choose what is best for them. The earlier these conversations can be started, the more choice patients can actually have. For all the conflated fears of legislated death panels and someone else choosing whether you live or die, the way to have the least control over how you die is to never talk about it with your physician and your family. If you have not clearly stated your wishes and if you and your family have not been informed of the options available, the more likely it is that you will suffer extreme medical interventions to keep your body alive, even if it wasn't your wish. The more likely it is that radical resuscitation, intubation, sedation, and analgesics will be used. The more likely it is that your loved ones will have to make anguished decisions about your care without explicit directives from you, and the more likely that they themselves will suffer guilt and depression.
Let me be clear: I am not advocating that people chose minimal medical intervention and that the best way to go is to just accept death. I would never say that to anyone; I don't even know if that is what I want for myself. But what I am advocating, and what I wish for all of my loved ones, is the right to have open, honest and informed conversation with one's physician about a realistic prognosis, all treatment and other care options available, and the drawbacks and benefits of each, so that one can truly decide and control, to the extent possible, the end-of-life care option that best honors one's wishes in accordance with one's values.
This article is from today's New York Times:
Law on End-of-Life Care Rankles Doctors
I shouldn’t be surprised when doctors object to laws telling them how to practice medicine, as does New York State’s new Palliative Care Information Act — not surprised, but in this instance, distressed.
Vehemently opposed by the Medical Society of the State of New York, the law passed last summer by a two-thirds majority of the Legislature and took effect in February. The legislation was written in collaboration with Compassion and Choices of New York, an organization that advocates for informed choices and greater physical and emotional comfort at the end of life.
The act, which I discussed in this column last August, states that when patients are found to have a terminal illness or condition, health care practitioners must offer to provide information and counseling about appropriate palliative care and end-of-life options. Patients or their surrogates are entirely at liberty to refuse an offer to discuss these options.
California passed a similar law in 2009, and other states are considering them. These measures promise to reduce the cost of care at the end of life, as well as the suffering often associated with it; palliative care is meant to reduce the severity of disease symptoms, pain and stress.
Although there are penalties for violation, it is not the specter of punishment that raises the hackles of some physicians. Rather, they say the new requirement interferes with how they choose to deal with their patients and does not take into account the nuances of a doctor-patient relationship.
In an article in The New England Journal of Medicine last month, Dr. Alan B. Astrow and Dr. Beth Popp of Maimonides Medical Center in Brooklyn wrote that they were troubled by “the law’s heavy-handed intrusion into the doctor-patient relationship.” They stated, “In asserting power over the way in which deep and troubling human questions should be addressed, the New York Legislature seems likely only to generate cynicism at the times when critically ill patients and their families are most in need of honesty, kindness and engagement.”
Another New York physician, Dr. Yashar Hirshaut, an oncologist at NewYork-Presbyterian/Weill Cornell Medical Center who also objects to the act, said in a letter to me that “the new law is going to have a direct negative effect on too many cancer patients.” He wrote that when he explained what the law required to a patient with a life expectancy of six months, her response was, “What, are they trying to kill me?”
How the Law Can Help
This law is not about ending a patient’s life. Rather, it is intended to make the end, when that end is near, as physically and emotionally painless as possible. The law is intended to spare terminally ill patients from futile medical interventions that can detract from the quality of their remaining days.
Despite their opposition to this legislation, Dr. Astrow and Dr. Popp acknowledged that “seriously ill patients and their families need accurate information about prognosis and treatment options; physicians’ repeated failure in this realm is clearly a public health problem that the profession should be required to address.”
David C. Leven, who heads Compassion and Choices of New York, said in an e-mail that “the law simply requires physicians to do what the authors say should be required of them. The profession has not addressed this public health problem. The Legislature did.”
While legislation may not be the ideal way to go about this, the fact is that too many doctors fail to inform their terminally ill patients about the risks of continuing aggressive treatments to the bitter end and the benefits of opting only for treatment of discomforting symptoms through palliative or hospice care.
Doctors are notorious death-deniers, often more reluctant than their patients to admit that it is pointless to pursue treatment that is medically futile. They either fail to mention hospice care or suggest it far too late — usually within a week of death, when hospice personnel have little time to get to know the patient and family and to provide the kind of care that can make for a graceful exit from this world.
Studies have shown that patients with a short life expectancy who choose hospice over continued treatment and last-ditch assists like ventilators and feeding tubes live not only better but, surprisingly, longer on average. Researchers also have found that surviving family members are less likely to experience prolonged depression and grief when their loved ones are spared grotesque medical interventions and receive only comfort care at the end of their lives.
Even knowing these facts, some patients are likely to choose to take advantage of anything and everything in the medical armamentarium that could conceivably grant them extra days, weeks or months of life. And such a choice is the prerogative of every terminally ill patient; the new law does not in any way deny that choice. It merely says that patients should be offered the chance to learn about the alternatives.
Nor does the law prohibit patients (or families) from changing their minds and requesting aggressive measures after an initial acceptance of palliative care.
Communication Skills Needed
Many physicians fear that merely broaching the subject of palliative care will strip terminally ill patients of hope. But I have to wonder whether offering unrealistic hope for a cure, or overly optimistic prognoses, isn’t more harmful to patients and their families. If patients are unaware that the remaining time is short, they may lose the chance to resolve important personal issues, say meaningful good-byes, and leave legacies or memories that survivors can cherish long after death.
Few physicians trained more than a decade ago were taught how to communicate emotionally challenging information to their patients. But in recent years the medical literature and continuing education courses have sought to fill in this gap.
For example, Dr. James A. Tulsky of the Center for Palliative Care at Duke University Medical Center wrote in The Journal of the American Medical Association that “talking about treatment choices at the end of life does not necessarily rob patients of hope. Redirecting the patient’s goal toward realistic hopes and being present with compassion can serve as a powerful act in helping patients make decisions while maintaining a hopeful outlook.”
Dr. Tulsky advised that patients be told, in effect, to hope for the best but to prepare for the worst. Their goals can be broadened to include not just successful treatment, he suggested, but also the measures they want taken if they cannot be cured and advice on how to accomplish important tasks that might otherwise be left undone.
Terminally ill patients may fear not just death, but also that in choosing palliative or hospice care, they will be abandoned by their primary physicians. Disappearing doctors are all too common when curative treatment options are exhausted. If doctors truly want to preserve hope, they owe it to their patients to stick around until the end.