Point of View

We should be able to die well, knowing the costs

June 14, 2013 

During the past seven years, I’ve become well-acquainted with our health care system, initially because of a chronic autoimmune illness, but more recently because of a cancer diagnosis.

For those diagnosed with an illness that will require significant medical intervention, the cost of care can create enormous anxiety. This is true both for those with insurance and for those without it. Even patients who are fortunate enough to have insurance as I am generally find out how much they owe long after services have been rendered and claims have been processed. Although we are nearing the end of my course of chemotherapy, we have virtually no idea how much we will have to pay for the treatment, which only adds to our anxiety.

The recent proposal put forward by Republicans requiring hospitals to make public the costs of common services and procedures is a step in the right direction and would at least give patients some sense of what they might owe. It would be nice if the costs of nearly all services were made public (most any other business does this), but a small step forward is better than none at all.

The Republican proposal should have the added benefits of forcing doctors to familiarize themselves with how much their services actually cost and of curbing at least some of the recently documented outrageous pricing discrepancies. Of course, we shouldn’t praise Republicans too highly: One of the best ways to diminish the apprehensions of many in our state is to opt in to the expansion of Medicaid – an option they’ve callously blocked.

As a patient diagnosed with a potentially fatal illness, I would love to see North Carolina become the first state in the Southeast to adopt a physician-assisted suicide bill, one that minimally would allow terminal patients in irremediable pain the option of euthanasia (or “dying well”).

As a humanist, I do not fear death itself – for us, death is simply loss of consciousness – but I do fear the process of dying and all the pain and indignity it may entail. Unfortunately, this fear dictated a few of my recent treatment decisions, and it undoubtedly will continue to generate anxiety over the next months and years as we wait to see if the lesions return.

Those who are terminally ill ought to have the assurance of knowing they can opt out comfortably when their illness becomes too much to bear or so erodes their quality of life that the costs of pressing on far outweigh the benefits. Having this assurance would lessen my own apprehension considerably.

Forcing anyone to endure to the bitter end, no matter what the level of pain or the indignity, seems utterly inhumane to me. Like most humanists, I’ve always found it odd that we don’t give a second thought to extending euthanasia to our pets yet refuse such compassion to one another.

I’ve come to the conclusion that Western medicine hasn’t sufficiently addressed its paternalism. I’ve always had the impression that my rheumatologist respects my values and desires, but the same cannot be said for my oncologists.

None was willing to tailor treatment to my specific needs and values. The prescribed regimen was uniform and nonnegotiable, predicated on the overriding value: “Save a life at whatever cost to the patient’s current quality of life.” (I only ever asked for less medication, never for more. Must I have every last toxin my physician recommends injected into my veins?) The slightest hint of my questioning “doctor’s orders” was met immediately with condescension and anger.

Most websites of major medical centers include a statement that professes respect of patient autonomy, but I can no longer take such statements seriously.

Admittedly, this is not a matter for our legislature but rather for medical school faculty and administration. Indeed, the law is already behind any patient who wishes to refuse treatment or to accept only some of what a physician has to offer. But it certainly would ease our burden considerably if doctors would refrain from imposing their own values and help us in the ways we wish to be helped.

Jim Metzger of Greenville received his Ph.D. in religion from Vanderbilt University. He currently teaches ethics and religious studies at Pitt Community College.

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