Choice/Decisions Part II

I had planned to make the Part II a Sunday feature last weekend, but so many things kept occurring, new articles, conversations etc., that I’ve written and rewritten this segment. This morning, I decided that I just need to post it; otherwise I could keep tinkering with it forever.

In response to the “choice” survey, that I sent to friends and colleagues over a week ago, and blogged about on Jan. 30, one person responded with an interesting article from the New York Times, “An Ill Father, a Life-or-Death Decision.

In the article a reporter describes how she dealt with a choice in the care of her very ill and compromised father. The outcome was the father made a choice to continue very aggressive treatment, even though there was no chance of a recovery, and the man ultimately died six months later after considerable intervention.

Among the responses to the survey on choice in health care, more than one wrote of concern about the incredible costs of care when there is no chance of survival. In direct response to the article, one person estimated that the cost of care for the last six months of this man’s life was probably close to a million dollars and would be tapping an already strained medical staff. Ultimately, the writer felt that no one probably benefited from these extra six months.

The high costs of care, particularly in the last six months of life, is a hot topic among health professionals, legislatures, insurers, condition based organizations, i.e. The American Cancer Society, and just about anybody who has to pay health insurance. This is a very touchy subject, as “health care rationing” is not a popular idea in the United States.
I read an article this week in the newsletter from my state’s independent living organization that stated, “VCDR opposes any legislation legalizing physician assisted suicide (sometimes called “End of Life Choices” or Death with Dignity” legislation). We would prefer to see policy and legislative efforts focus on making real improvements in and increasing and equalizing access to needed end-of-life and chronic pain services.”

It may appear that assisted suicide is not the same thing as limiting interventions in patients with terminal health issues, but I can assure you that these topics are very much linked in many people’s mind. First you limit the care that can be provided, then you sanction assisted suicide and ultimately the ground work is laid for what happened to the disabled, mentally ill, and aged during the Nazi regimen.

There is considerable data that shows that the highest medical expenses occur in the last six months of a person’s life. Interestingly, when I was working with employers on an AIDS related project, they were very clear that having employees with HIV/AIDS wasn’t their biggest concern as far as health insurance and premiums. Instead, they explained that the high and continuing costs for an employee’s premature baby could destroy their health insurance program.

During the AIDS epidemic in the 80s, a number of hospitals and community groups did talk to people with AIDS about the fact that the costs were quite high with ICU care and the chances of their coming out of one was slim. Consequently, many men signed advance directive forms that indicated they did not want any type of medical intervention that would prolong their life, including admission to an ICU.

Many hospitals, health centers and public health clinics have implemented prenatal programs to reduce premature births. Whether people like it or not, rationing does occur as insurers wont pay for procedures and treatments in certain situations. For those requiring transplants, there are all sorts of restrictions on who can be a candidate.

These measures do save money. However, where does the money saved go? Is it redistributed? If so, how and where? In short, there is no guarantee that money saved by not prolonging lives, in situations such as the one described in the NY Times article, would be put towards something better.

Particularly in this economy, I understand why people are questioning the high costs of health care at the end of life. However, I’m not so sure that’s the critical question. Maybe the place to start is trying to understand what decisions go into people choosing, or not choosing, to prolong life where there is no chance of recovery.

From what I’ve seen, there is a process that people go through before they can accept that it’s time to let go. For some, it’s a short time frame, for others it seems to take forever. A friend with extensive cancer absolutely wanted to continue chemotherapy even though the oncologist was clear that there was no hope and the treatment could kill him. However, he went ahead with it and when it made him even sicker, he was maintained for almost three months on blood transfusions every few days.

While it would be easy to look at this situation and wonder why, I quickly began to realize that there were clearly some items on his “to do list.” Once he was able to take care of it, he basically said I’m done and died within three days. In those three months he was not only able to settle personal matters, he established a legacy program for youth, whose impact will last for many generations. If this were looked at in terms of a cost benefit analysis, society benefited by this man having those last three months of life. For him, this time was priceless.

I’ve seen various aspects of this over and over again. Probably my most moving account of someone extending life long after she ever said she wanted it to be was a mother who knew that as long as she was dying, her daughter would be stationed stateside and out of the Gulf War. Another person I worked with knew that his benefits for his wife would end with his death, left very clear instructions to keep him on every possible means of life support. When that time came, his wife was the one who said “enough.”

One study indicates that families come to the decision to withdraw treatment when they both recognize and come to terms with the futility of continuing treatment. Advance directives and good communication from medical providers were two factors that helped in making these hard choices more acceptable to families. Journal of Family Nursing Vol. 5, No. 4 pages 426-442 (1999)

An English study of gender differences among those 63-93 making choices about technologies extending life found that older women voiced more opposition to extending their lives then men, as they did not want to be a burden on others. Older men’s attitudes were primarily “self-oriented,” reflecting a concern to stay alive for as long as possible with fewer expressing concern about consequences for others. Journal of Aging Studies, Vol 22, Issue 4, December 2008, pages 366-375

At the same time I was reading the various articles on choice and decision making, I came across an article by John Selby, executive counselor, “Death is Your Real Life Coach." He writes Life is mystery enough; death is the ultimate mystery, and we naturally tend to fear the unknown.

Thus most of us tend to be chronically anxious about our own coming demise -- we run away from death, and when we do finally die we tend to run up a giant last-minute medical bill that does no one any good.

The biological truth is that no one gets out of here alive. There might be life and transformation after we die (we won't know until we do), but we must first experience the process of biological death before discovering if there's anything beyond. Therein lies the rub….

As therapists regularly point out, trying to avoid the fact that at some point we are going to physically cease to exist is counter-productive, because it generates doubt-plagued denial syndromes and free-floating anxiety about our future. This anxiety in turn permeates every moment of our lives, turning heaven on earth into earthly hell. I never worked with a client in therapy whose root anxiety wasn't their buried fear of their coming death.

So how many people insist on extensive treatment and intervention even though it’s not going to improve quality of life and only postpone death by days, because of their fear of death? I suspect that’s the case for more people than we realize.
What is clear is that most people need help in closing out their lives. While I have had such conversations with clients, when it was my close friend that so was ill, I found it difficult to engage in those conversations, wanting desperately to believe the stories about people who were cured at the 11th hour. Clearly, I wasn’t the person to have that conversation. My friend was fortunate to have a really good physician who could talk about it.

In December, there was a big to do over allowing Medicare visits to discuss Living Wills and other end of life matters. I’ve been the advocate for any number of patients and have watched doctors, nurses and social workers try to discuss end of life issues with compassion, understanding and concern. This has not always been favorably received by the patient and their families.

Ultimately, while we can strive to train the medical profession, make programs available such as hospice and palliative care, the American public also needs to do it’s part in coming to terms that we are after all mortal.