Wednesday, November 4, 2009

“What can I expect?”

Proposed health-care reform legislation includes a provision that allows Medicare to pay for "end-of-life" counseling for seniors and their families who request it. The provision -- which Sarah Palin erroneously described as "death panels" for seniors -- nearly derailed President Obama's health-care initiative. Some Republicans still argue that the provision would ration health care for the elderly.

Does end-of-life care prolong life or does it prolong suffering? Should it be a part of health-care reform?

“What can I expect?”

The critical issues at the end of a person’s life are dignity, compassion and respect. “End-of-Life” counseling is no more or less than a treatment option. To withhold information about a treatment option is disrespectful, demonstrates an appalling lack of compassion and ultimately deprives her of her dignity.

When any one of us goes to the doctor for almost any reason, the question we are asking is: “What can I expect?” If the answer is that we will get better over time or that we need treatment to get better, we ask again: “Then what can I expect?” And if the answer to that first question is, “You won’t get better” even then we find ourselves asking: “Then what can I expect?” Because it is our treatment path, we believe that our question should be dignified with an answer and that our wishes should be respected. We call this informed decision making and it is based on the elemental principle of respect.

Everyone has a right to know what their doctor knows about their condition. Say your doctor knows you have cancer. She must tell you, even if she thinks it will upset you, even if she is sure you won’t treat it, even if she knows you can’t afford treatment, she is duty bound to tell you what your options are. But let’s say your doctor knows the gender of the baby you’re carrying. You can instruct her to keep that information from you. That, again, is a decision she must respect.

If this all seems obvious to you, that’s because it has been public policy for years. Medicare already pays for Hospice care when families and patients request it. Medical professionals, clergy and social workers are paid by Federal funds in those cases. Hospice care, like any other medical procedure, can be declined by the patient or those speaking on her behalf. And we don’t call it a death panel, we call it compassion.

The essential element of end-of-life treatment is that, to the highest degree possible, it adhere to the patient’s individual desires. Our government, our insurance companies, our employers, our clergy and sometimes even our family may think they know what is best for us, they may be motivated by the most genuine desire to do what is right. But, as a 94 year old Rabbi recently told me, “In such a case, I do not want you to do what’s right. I want you to do what I tell you.”

This same Rabbi told me a story which is worth telling here. An ancient and well respected Rabbi of the second century was ill and close to dying. In keeping with the belief that only God decides when life should end, his students stood around his bed day and night and prayed for him and their prayers kept him alive. Day and night he lingered on and on. Then one day his dearly beloved nurse, who was not Jewish but who had served him faithfully for years, walked into the Rabbi’s bedroom, picked up a very expensive lamp and smashed it to the ground. The praying men were startled into silence and the Rabbi was permitted to slip away… with dignity, compassion and respect.