Cheap Political Victories and End of Life Care: A Better End for Anyone?
As if just talking about dying weren’t hard enough for most of us, now comes the disinformation campaign about end-of-life care discussions waged by opponents of health care reform. Let’s be clear and set the facts straight for any still confused: The proposed language in some of the draft health reform bills was nothing like the scandalous assertions claimed by those using it to advance a very different agenda. It was not a “death board” (one of the more outrageously absurd assertions made), nor was it intended to create a system to ration care to the elderly. All the draft legislation proposed was simply to permit Medicare to reimburse doctors for conducting purely optional discussions with patients about end-of-life care. Reimbursement! Even then, it was only permitted every five years!
Now, thanks to this disinformation campaign, it would appear that this particular part of the proposed legislation has been—forgive me—killed. But the fact that each person must be prepared to have an end-of-life discussion with his physician remains immutable. We are all mortal, and the vast majority of us will grow old, develop several chronic conditions, and die.
Along the way, we will want doctors to help us make decisions about myriad issues, some easier than others. Will we want hospice care? Will we want to move to an assisted-living community? Are we willing to try a ventilator or a feeding tube? If so, under what conditions and for how long? Those are just a few of the many questions that could come up in an end-of-life discussion, a discussion that would go far beyond the “pull-the-plug” route many of us think encompasses advance planning.
In the late 1990s, when doctors told my grandmother she had terminal kidney cancer and had only a few days to eight weeks to live, she said, “Well, take the damn thing; I have two.” They told her that the cancer was widespread and inoperable. To the best of my knowledge, that was the extent of her end-of-life planning. Although she eventually enrolled in hospice care, she never had time to talk to her doctors about which treatments made the most sense for her and which would only add to her pain and suffering. Instead, she followed her doctor’s orders and went along with whatever they recommended. This included everything from receiving in-hospital blood transfusions, a journey that exhausted her, to having a steel pin put in her leg. She was dying; what was the point of the interventions, and why were we so willing to pursue them?
In the years since my grandmother’s death, I have made a career of writing about end-of-life issues and wonder how different the end of my grandmother’s life would have been if we had been able to have the kind of end-of-life discussions the proposed health reform legislation was intended to permit. Someone might have explained to us the risks and benefits of any number of procedures and may well have let us know that not every procedure would lead to a better quality of life for my grandmother. Some added to the length of her life, only to compromise the quality of that life.
Many experts around the country have developed programs to help people write advance directives, to put into writing and to talk to their doctors, families, and friends what they want done in the event of a serious chronic illness. One such program, Respecting Choices, is run by Gundersen Lutheran Medical Center in LaCrosse, Wisc. Respecting Choices offers a system that organizations can use to enhance advance care planning and also offers advice and guidance for individuals seeking to make advance plans. That site notes that advance care planning “is a process of shared decision making with you, your family, and your health providers to improve understanding, reflection, and discussion about your future health care decisions.” With that as the objective, who wouldn’t want to have such a conversation with his or her doctor?
If Medicare could reimburse doctors for having these discussions, how much richer might we all be for it? Doctors could feel more confident in the care they provide, knowing that patients are making informed choices based on the information at hand. Patients and families could feel confident that their wishes and preferences would be honored, that their doctors know and understand what, exactly, those wishes are. To suggest that such a conversation smacks of being a “death panel” verges on the obscene—a conversation about how one wants to live well in the face of illness is an essential step to getting the care and respect we all deserve, no matter what our stage of life.
While those opposed to health reform may feel that they’ve scored a few cheap points against the legislation by attacking any suggestion of end-of-life care discussions, the end result could well be a sad one—including for them one day. By demonizing end-of-life care discussions, all these opportunistic attacks have really accomplished is to reduce the quality of life for all of us and those we hold most dear at the point of life when we are most vulnerable.
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