Unless you are one of the nation’s 400,000 dialysis patients, you may not know that a law passed by Congress 39 years ago provides almost entirely free dialysis to patients whose kidneys have failed, regardless of age or ability to pay. The law itself is really remarkable in its attentiveness to poor and to the discrepancies in health care between the rich and the poor. According to the NY Times:
When Congress established the entitlement to pay for kidney patients in October 1972, dialysis and transplants were new procedures that were not covered by health insurance. There were horrifying stories — rich people got dialysis and lived while poor people died. In Seattle, a committee meted out dialysis by voting on who could get it. A man who was supporting a family, for example, took precedence over a single woman.
Unfortunately, the law has some unfortunate and unforeseen consequences. While it was intended to protect the poor, relatively healthy, middle-aged population, it is now being used by the elderly, oftentimes who are suffering from a number of other medical conditions. More than one third of dialysis patients are 65 or older and account for 42% of the costs. In light of sky-rocketing health care costs, kidney specialists are now urging doctors to be honest and forthright with patients who are considering dialysis, and to encourage patients to decline dialysis and pursue palliative care.
One idea, promoted by leading specialists, is to change the way doctors refer to the decision to forgo dialysis. Instead of saying that a patient is withdrawing from dialysis or agreeing not to start it, these specialists say the patient has chosen “medical management without dialysis.”
“That is the preferred term,” said Nancy Armistead, executive director of the Mid-Atlantic Renal Coalition, a Medicare contractor that collects data and patient grievances.
The phrase, she says, “acknowledges that death is imminent,” but it also sends an important message: “We are not just sending people home to die. We are offering palliative care.”
A committee of the Renal Physicians Association recently formulated guidelines to use in deciding when dialysis is appropriate. It provides questions that doctors should ask themselves before suggesting the treatment. One is the “surprise” question: Would I be surprised if this patient is dead within a year?
This is just the tip of the iceberg when it comes to very difficult questions this nation is going to have to ask in the upcoming years about health care rationing. In this country, we value autonomy above all when it comes to health care. We want to make our own decisions and to ultimately be in control of how any treatment we choose to pursue proceeds. We are also afraid of dying and largely averse to palliative care. And yet, we may see more and more proposals like this one: efforts to encourage “medical management” when the potential good consequences don’t outweigh the bad.
On the one hand, such “medical management” (i.e. rationing by another name) is good and necessary in light of extra 38 million people who are now ensured health care, the aging US population, and the overall increase in demand for health care services. On the other hand, I think we also need to be on our guard lest purely consequentialist ethical thinking guide how such rationing proceeds. The dialysis law was put in place to protect a poor and vulnerable segment of the population, and any just health care reform, whether legal or cultural, will need to be attentive to the ongoing needs of the poor.
Additionally, there is a fear that such rationing will lead to something that looks a lot like state-sponsored euthanasia (remember the death panel scare?). I don’t think that foregoing dialysis at the end of life and pursuing palliative care implies at all a slippery slope towards euthanasia, but it will take a major cultural shift to teach people that a longer life is not necessarily a better life without also concluding that a life of pain and suffering is not worth living, as Charlie’s recent post talked about. “Some life is better than no life,” insisted a woman interviewed for the above-cited article who chose to pursue dialysis at the end of her life. Since starting dialysis, she has been hospitalized four times. Ethically, we need to figure out is how we can talk about quality of life in a way that still affirms this woman’s dignity and the value of her life while also recognizing the legitimate argument for forgoing expensive and burdensome treatment.
Despite the major challenges ahead, we need to accept that rationing is the new reality. Rather than debating whether to ration health care or not, we need to start talking about how to ethically ration health care in such a way that still protects and affirms the dignity of all, even the dying, and is attentive to the needs of the poor.