“To die well is the height of wisdom of life.” – Soren Kierkegaard (1813-1855)
If you are like most Americans, when your time comes, you want to go through the process of dying surrounded by those you love, in a place where you are comfortable (your home preferably) and free of fear and/or pain. However, the chances that you will experience such quality of dying are only two out of ten.
Much higher are the chances that you will experience a dying process that involves an Intensive Care Unit or other clinical setting, possible discomfort, either physical or emotional and the presence of several well-meaning health care technicians keeping you tethered to one or more mechanical devices. Your loved-ones will likely be emotional and confused about the treatment alternatives and your preferences. Why is there such a big gap between what we want and what we get at the end of life?
There are several reasons, some of them out of your control, but there is one very important factor that can mitigate most of the negatives mentioned and that is, having a very specific Advanced Medical Directive. This legal document should specify the care you want in certain situations in the event that you can no longer make your wishes known. This factor is totally your responsibility. If you don’t have such a document, the quality of your dying will be left to uninformed others and may add to the emotional burden on those you love.
Ironically, 21st century medicine is both a great positive force for the saving of lives and reduction of suffering but also one of the primary causes of prolonged and needless suffering.
The epidemiological revolution of the 1950s dramatically changed the way we die. There was the discovery of penicillin and other specialized antibiotics and the nearly instantaneous eradication of common and fatal childhood diseases such as polio. There were dramatic improvements in pre-natal care and obstetrics practices, driving down infant mortality. Finally, new surgical and mechanical solutions to life-threatening problems of internal organs contributed to a sharp increase in life expectancy.
Prior to 1950 the typical American trajectory of birth to death was this: birth, development into a healthy adult of 35-40, modest decline in function until the age of 55-60, development of disease or infection followed by rapid decline and death. A New Yorker cartoon of a few years ago cited this old paradigm when one elderly dowager observed to another, “In my day, people died.”
Now the trajectory of life looks quite different. Of course sudden death still occurs; but the typical American can expect to live a longer, healthier life than his or her grandparents and then spend the last 24 to 48 months or longer dealing with one or more (often more) chronic illnesses such as heart disease, cancer, dementia, arthritis, recurring pneumonia, Lou Gehrig’s (ALS) or Hodgkin’s disease, and then, finally, death. “People really die now by inches rather than by miles,” according to Dr. Joanne Lynn, head of the Rand Center to Improve Care for the Dying. “We die in a very slow, chronic way, but our views of dying are (still) based on old views of death—(back) when you were run over by a carriage at the turn of the century and died the next day…so the decisions made (now) about dying are more about living day-to-day.”
It is the quality of that “day-to-day” living and the end-of-life health care decisions that are the crux of a dilemma that will grow at the same rate that Baby Boomers age, decline and die. Medicine and technology are substantially outpacing our knowledge of how best to reconcile this new dying paradigm. Just fifty years ago there was a much different attitude in America regarding death, its inevitability and its role in the natural course of life. Today, Americans reject death, keep it out of sight and the medical community has declared war on death, even for the aged and frail. Health care professionals see death as a failure of strategy and the public views death as something that can be prevented with the next treatment or newest drug. Along with this “rejection of death” mentality comes the troubling consequence of a prolonged dying process, one that is too often needlessly painful, terrifying and lonely.
For selfish reasons alone, each of us should want to change the strong possibility that we will experience a dying process that is counter to what we might want. However, and this is what is really important to my mind, we should want to script our own dying to save our families the anguish, turmoil and guilt associated with making difficult health care decisions on our behalf when they don’t really know what we want and it’s too late to ask.
Here’s what to do. Get your hands on an Advanced Care Plan (Directive) also known as a Living Will and fill it out. One place to start is the website of Project Grace (www.projectgrace.org) a Florida initiative founded by the wonderfully named physician, Lofty Basta. Another source is the website for a non-profit called Aging With Dignity (www.agingwithdignity.org). Both sites offer access to Advanced Directive or Living Will forms as well as other resource material to help you understand the process. Or, simply do an Internet search of “advanced medical care directive” and choose from 1.7 million sources of information that pop up.
Don’t confuse an advanced care plan with a “power of attorney” which merely gives someone the right to pay your bills, deposit checks made out to you, etc. while you are incapacitated. These activities, while valuable, have nothing to do with your wishes for end-of-life care. Neither should you assume that since you have named a “health care surrogate” that your wishes for care will be what you get. Having a health care surrogate who is in possession of your advanced care directive is the gold standard. Without your written directive, he or she may be well-meaning but clueless and at the mercy of family members and the health care community, whose opinions may or may not be consistent with your wishes.
You should be aware that 12 states have additional legal requirements for directing medical teams in end-of-life health care. If you live in one of the following states be sure to determine what other forms are required, but also know that the documents mentioned above are valuable, instructive and strongly recommended even where other forms are required.
Share and discuss your advanced care directive with your immediate family (spouse, children, etc.). You should also discuss the document with your primary care physician and revisit the details with him or her when any change occurs in your wishes. This vital and sensible communication with your physician is part of the process that Sarah Palin referred to as “Government Death Panels”. What utter nonsense. This process of discussion is simply you taking charge of what kind of health care you want at the end-of-life, your life.
You can change your advanced care directive as often as you want. I recommend an annual review or any time that there is a major change in your health or change in your circumstances, e.g. a death in the family, divorce, marriage, etc. The document only takes effect when you become unable to make healthcare decisions on your own and death is imminent. Such a document does not preclude life saving measures should you fall ill or be in an accident unless, as specified in the document, such treatments have very little or no chance of returning you to the quality of life that you have described in the document. Be very specific about the permanent quality of life you do or do not want to endure. The specificity of the document is what protects you from both premature death due to under treatment and a low quality dying due to overtreatment. Just think of the impact that such a document could have had for Terri Schaivo and her family.
Then, there is the challenge of having your advanced care directive available when the health care team and your family most need it. But that is a topic for another article. Stay tuned.