My grandfather died at the Mayo Clinic in the 1940s. While he was dying, no one told him — neither his family nor his doctors — that he had a fatal illness. The day before he died he received cards from close friends encouraging him to “get well soon.” The time he could have spent taking care of unfinished business was wasted.
In contrast to my grandfather’s end-of-life experience, an acquaintance of mine died recently after a long illness. He made great use of the years he had after his diagnosis. A mutual friend and I were talking the other day about some of his accomplishments; what she said really stuck with me: “…he had the gift of time.” Yes, he did have the gift of time. As I thought about it, that is what we all have — we just don’t notice.
A lot has changed since my grandfather’s death. In those days patients mostly just did what the doctor said. Today, we have a lot of say about our healthcare decisions. We also have technology for preserving life — technology that can paradoxically make life more difficult, in some ways. Recently, there has been a corresponding increase in wisdom about how to use that technology to bring healing at the end of life. If healing is narrowly defined as indefinitely prolonging the functions of major organs, then the effort will inevitably end in failure and there isn’t much place for wisdom. But that technology can also be used to control pain and produce time to finish what is really important; that is where the healing, success and wisdom come in. Quality of life is important, not just length of life.
In my experience, when people find out they have months left, healing takes on a different and bigger meaning. For example, healing relationships becomes urgent, and certainly this kind of healing is an important part of the total medical care picture. Ira Byock , the well-known hospice doctor, explains this a lot better than I can in his book, Dying Well.
I write this now because AARP and the Foundation for End of Life Care are sponsoring a free presentation about advanced directives on Oct. 15 at 5:15 p.m. at Centennial Hall. Advanced directives — including living wills — are written instructions that specify medical treatment and other actions to take in the event a person can no longer make decisions for himself or herself due to illness or incapacity.
Simply sitting down with your family and talking about advanced directives can provide your family with information that will someday help with inevitable decisions. Learning about advanced directives with your family is one important way you can tap into this wisdom. This advanced directives event will feature presentations by Juneau attorneys Vance Sanders and Beth Chapman and by hospice leader Nancy Davis. Additionally, these presentations will be followed by a panel discussion that will include those speakers as well as community leader Dr. Bob Urata, the medical director of hospice in Juneau.
This is an opportunity to start taking charge for you and your family. For example, if someone in your family develops cancer, only an informed family can think through what is really best. What is best for a mother in her 30s with a potentially curable cancer is not what is best for a great-grandmother in her 90s. In both cases, there will be a need for healing, but again, the word healing needs a more complete meaning. I know from personal experience that when something like this happens, the family must craft a balance between the need to keep fighting the illness and the need to accept what cannot be fixed. Only a family that has studied the options can find the right balance. Also, the family will need to find the way to express its desires so that these desires will be honored. You have the opportunity to engage right now and start making choices for yourself and your family. In other words, notice and accept your gift of time.
• Hal Geiger has lived in Juneau since 1982. He is the President of the Foundation for End of Life Care, a Juneau-based non-profit that supports hospice, bereavement care and community education (foundationforendoflifecare.org).