Wednesday, August 19, 2009

The Death of End-of-Life Counseling

In the hysteria of "Death Panels" promoted by Sarah Palin and talk-radio, the proposal to fund end-of-life counseling through Medicare has met its untimely demise. Some celebrate this fact, noting that they don't want the government anywhere near the end of their lives. While I understand the sentiment, I strongly disagree. Right now, the government isn't the problem at all. The problem really, is with the doctors, and that's where prior decisions could be extremely useful in determining end of life care.
Judaism has a great deal to say about the decisions that we make as we approach life's end. According to classical Jewish thought, life represents sanctity and holiness. Every moment that a person spends on this earth represents a gift from God and an opportunity to perfect the soul and grow closer to the Divine. For this reason, Judaism will almost always steer a patient towards life.
It's important here to be clear. Judaism does not require a patient to suffer in all circumstances. Judaism does not obligate the suffering patient to choose any and every procedure and medical technique to preserve life, no matter how painful for no matter how short an extension. There is a balance that I think many in the Orthodox community fail to appreciate.
Some people seem to think that Judaism requires you to always do everything possible. I've even seen rabbis insist that families force doctors to perform painful procedures that were clearly against the patient's wishes for this reason. My heart still pulls at me when I remember these poor people, connected to a respirator, unwilling to communicate, but clearly afraid and subject to the decisions of family members who were taking what I consider to be harsh and extreme advice.
The notion that Judaism forces patients to extend life is simply not true. The wishes of the patient are critical. We must take into account his willingness to endure pain and his wishes regarding his illness, and this personal decision carries great weight. So it's not a black-and-white issue. It's a subtle, complicated and difficult issue that requires careful analysis in each specific situation.
America and Western culture don't share this underlying sense of sanctity. Life is more about experience, pleasure and, as the Declaration of Independence states, "the pursuit of happiness." If you're suffering, it's difficult if not impossible to be happy. If you're chained to a hospital bed, how can that be a life worth living? Why would we engage in extraordinary measures to prolong your life, if that will translate into another month of pain, or another week in bed on a respirator? So doctors, armed with their own sense of values, legitimately will steer patients away from a choice of life, towards a choice focusing on comfort and lack of pain at life's end, in essence giving up the fight, and accepting and even welcoming (and in some cases advancing) death.
Despite the challenging balance within Jewish thought about the end of life, the American medical system operates on a completely different set of values, which emphasize comfort, quality of life and productivity, values that Judaism rejects.
All of this makes end of life counseling all the more important. It's nearly impossible to calmly and rationally consider this complicated and rather personal ethical question in the heat of the moment. These questions need to be discussed, considered and addressed long before anyone enters the hospital.
Ideally, I think it's best to talk about these issues with a spiritual leader, and to consider which rabbi (and what type of rabbi) you'd want to help with this type of decision during such a difficult time. I strongly advocate using the RCA's health care proxy, which allows you to designate who has the power to make these important decisions for you during illness and crisis. (I would also add that your child's rabbi might not be the right fit for you. Rabbis from different streams within Orthodoxy view these issues quite differently, with vastly different outcomes. So choose your rabbi, let your children know about your choice, and ask them to honor your wishes should the need ever arise.) The bottom line is, every single Jew should fill out a health care proxy, appointing trusted religious figures to assist in the making of these decisions when the time comes.
And there's the rub. Who wants to talk about death? No one wants to consider what decisions they'd like to make while they're in an ICU, connected to who-knows-how-many machines, unable to speak, unaware of their surroundings. I don't even like going to the dentist. What makes anyone think that they'd voluntarily approach their doctor or rabbi or clergy and say, "Let's sit down and talk about how I'm going to die."
Only, that's precisely what they should be doing.
As a rabbi, I was happy to help people fill out a health care proxy. But the number of people who actually approached me was rather small. And I really didn't feel right calling members of my shul out of the blue and saying, "I'd like you to come in so that we can talk about your death." Maybe that's what I should have done. Probably. But that's not such an easy call to make.
Which is why it's so sad that Congress chickened out on the funding for this type of counseling. It's not that doctors don't discuss these issues with patients. Of course they do. But they discuss these issues when patients are facing a difficult diagnosis or procedure, and it's already late to make a rational, calm decision. Moreover, once again, they present their unique perspective, and not necessarily one aligned with Jewish values.
Funding would have created a small industry. It would have given social workers and part-time rabbis the ability and financial incentive to call people, schedule precisely these types of appointments, and receive compensation for their time and efforts. (Hey, maybe rabbis could have billed Medicare for their counseling. New type of shul fundraiser?)
But without the funding, there's no incentive for people with training to invest the energy in getting the elderly to even have these types of discussions. So they won't have them, because no one wants too.
And then it will be too late. And the pressures of the doctors, the hospital staff, the nurses - are almost overwhelming and impossible to resist.