Die and let die

Here's the thing, you're going to die. Your grandparents are going to die, your parents are going to die, and you are going to die, hopefully in that order. Perhaps this comes as no surprise to you, but if you were born and raised in the U.S. it is possible that you have not yet had to confront death up close and personal. Americans rarely die in the arms of loved ones or even in their own homes. It is much more likely that we will die attached to a latex octopus of tubes, bags and noisy machines. This, in my opinion, is the greatest casualty of American health care. Why can't we just die?

Most people would never wish such a painful and prolonged demise upon their loved ones if they knew what it was really like. Some people do know, sign DNR (do not resucitate) orders, and are still subjected to expensive and invasive "heroic" medicine because of fear of litigation. So what can we do to give our loved ones and our selves the "good death" that has become more myth than reality in modern society?

The experts on palliative care, the clinical term for non-curative management of symptoms at the end of life, are hospice providers. Some of the richest experiences of my music therapy career have been providing care at the end of life through hospice. Rather than the intense and often experimental treatments in mainstream medicine, hospice focuses on pain management, spiritual and emotional care, and preparation for death in a peaceful and warm environment, often the patient's home. Also, every adult needs to prepare a living will so that loved ones can honor that person's wishes without agonizing over what they would have wanted. Finally, anyone who cares about a loved one's right to die should petition their lawmakers to pass legislation similar to what is currently on the books in Oregon. Yes, this is controversial, and unfairly used to charicature the liberal tendencies of that part of the country. This is not a partisan matter however. Oregon may be the only state that admits it, but "assisted suicide" is practiced in every part of the country. Every day, physicians and nurses nationwide make clinical decisions that may aid in reducing pain while accelerating the death of patients already at the end of life, often through continued use of large doses of opiates like morphine. The use of legal methods like those in Oregon would likely lead to less risk of abuse and increased opportunity for patients to have their wishes for end of life care honored.

The threat of evidence-based practice

A lot has been said about the benefits of evidence-based practice in recent months, especially as it relates to improving the effectiveness of medical care under health care reform. One model in particular, Intermountain Health Care in Utah and Idaho (http://intermountainhealthcare.org/Pages/home.aspx), has drawn national attention for low-cost care with significantly improved outcomes. President Obama has gone so far as to suggest that all medical facilities should rely on strict metrics and "care by committee" to lower health care costs nationwide. As a music therapist and an aspiring physician, this idea is unsettling to me. I'm not bothered by protocols clearly supported by data, washing hands for example, or following a checklist to prepare a patient for surgery. Unfortunately, data hungry as we may be, the vast majority of medical maladies are not so clearly understood and even less clearly described by what quantitative means we have available.

This lack of statistical significance is even more evident in quantitative anayisis of behavioral health issues and complex disorders such as autism. That's not to say that quantitative studies can't provide helpful guidelines for treatment of all sorts of clinical issues, but there is a dangerous trend of setting protocols for virtually every clinical presentation, and much of it is based on financial and legal motivations in the insurance industry. Saddest of all is the seeping of this medical groupthink into music therapy. The allure of labeling one's approach as "evidence-based" is difficult to resist when most people in the general public wouldn't know how to begin to take a closer look at that evidence. The fact is, much of the evidence out there is from music therapy studies with very small groups, which makes them fairly insignificant statistically, but compelling trends just the same. One of my goals as I struggle through the quagmire of American medical education is to figure out how to respect the lessons of our vast, quantitative medical knowledge about the human body without forgetting the singularity of the human being.