Health Care Reform and End of Life Counseling

Anyone who reads the news, or watches it on television, knows that the current debate over health care reform contains a number of issues which have driven people into a frenzy. One of these was the idea of reimbursing for end of life consultations every five years.

Having recently lost my husband to metastatic prostate cancer, I can tell you that leaving discussions about end of life decisions until the last minute puts an enormous burden on family and caregivers, as well as the patient. Being told that one has less than a year to live, in all probability, is a devastating blow. What follows is a virtual tornado of emotion; disbelief, anger, frustration, fear, and helplessness, to name a few. Most people go into battle mode; resources are devoted almost exclusively to the physical, mental and emotional needs of the patient and family. The last thing they want to do is add the stress of making critical decisions about care, finances, burial arrangements and other end of life decisions. As a matter of fact, it is probably the worst time to be making those types of decisions, as judgment is bound to be at least somewhat clouded by circumstance.

End of life decisions tend to be put off during young adulthood; very few young, healthy individuals put any thought into their own mortality. Yet the news is filled with sad stories of people dying, in car accidents, workplace incidents, or as victims of crimes. Disease and mental illness take their toll as well. Not planning for end of life decisions can jeopardize the well-being of the family left behind, both emotionally and financially.

Avoidance of end of life counseling is not restricted to the young, however. My husband was certainly old enough to know better, and yet he refused to face the fact that he needed to make arrangements, even before he was given a poor prognosis from cancer. His answer, typically, was "I'll take care of it when the time comes." Unfortunately, when the time came, he was unable to take care of things for himself. In fact, it was the doctor who suggested the local hospice program, pointing out to my husband that even if he did not feel he needed the program, as the primary caregiver, I certainly would. The doctor's office made the arrangements for me, which was a real blessing.

What part does recommending end of life counseling play?

It is an opportunity on the part of the health community to open up a discussion that might otherwise never be held. Most people will find themselves visiting a doctor's office at least once in a five year interval. Most of us, when filling out the requisite medical history, are asked to reveal potentially embarrassing or uncomfortable information about ourselves. Doctors routinely ask questions about substance abuse, sexual activity, and mental health. If we can discuss these sorts of awkward topics with our health care provider, than why not end of life topics? After all, they are most likely the ones who will be helping us make those critical choices when the time comes. Those decisions, by the way, include far more than whether or not to "pull the plug", and many of them are things that one doesn't necessarily think about.

There are the basics, of course; questions about who will make decisions for you, if you are no longer able, for example. But if you don't let anyone know ahead of time what you want, how do you expect them to follow through? It seems rather unfair to place that sort of burden on someone who is already in a difficult position.

Then there are all of the decisions to be made about various treatments and interventions available, as opposed to doing nothing. Many people wish to extend their lives by all possible means, while others abhor the idea of being kept alive by feeding tubes, ventilators, and such. How do you feel about it? Have you thought about it? Have you told anyone?

Asking doctors to open up a discussion about end of life issues with their patients, on a regular basis, seems to be a reasonable and healthy thing to do. Making sure that the office visit is covered seems to be reasonable as well, as people will be more willing to participate if they don't have to pay out of pocket. It is a real shame that something which could have been beneficial in health care reform was turned into a "hot button issue", which stirred up a lot of unnecessary anger and fear.

If you haven't already, please talk to your family and/or doctor, and make your wishes known. Draw up a will, advanced medical directive, and power of attorney; review finances, beneficiaries, and life insurance; decide on a guardian for any minor children; and give some thought to discussing or planning funeral arrangements. It will give you and your family peace of mind, keep you in control of important decisions, and ease the burden of others if something does happen to you. It could be the most precious gift you ever give your loved ones.