In the early 1970s when I was a young ICU nurse, none of us medical professionals had even heard of a “living will”. There was a universal presumption for life and “quality of life” was something to be improved, not judged.
Nevertheless, sick people could and did refuse treatment and even check themselves out of the hospital against medical advice. When patients appeared to be dying, they or their families could agree to a “do not resuscitate” (DNR) order. Overly aggressive or useless treatments could be discouraged when such measures were considered medically futile or excessively burdensome for the patient. But one thing we didn’t do was offer to withhold or withdraw medical care like tube feedings to cause or hasten a patient’s death.
Unknown to us, all this began to change after Louis Kutner, a Chicago lawyer, wrote an article in the Indiana Law Journal titled Due Process of Euthanasia: The Living Will, A Proposal” in 1969. (emphasis added). By 1970, The Euthanasia Society of America (later renamed the Society for the Right to Die) distributed 60,000 living wills. In 1976, California passed the nation’s first “living will” law. Now, there are proposals to eventually include even physician-assisted suicide in “living wills”.
I use the common term “living will” to represent the wide variety of end of life documents that have evolved since the original “living will”, including the newest but problematic one called POLST (physician orders for life-sustaining treatment).
I wrote a 2001 article “Of Living Wills and Butterfly Ballots” because I was concerned that many people were signing such documents with little knowledge of the history and problems with such documents that I witnessed as a nurse and ethics committee member. However, with the crucial help of a sympathetic media, court cases involving seriously brain-injured people like Terri Schiavo and government mandates such as the 1990 Patient Self-Determination Act have resulted in the heavy promotion of “living wills” as simple, worry-free documents. Now the federal government is set to begin paying healthcare providers for talking to all Medicare beneficiaries about such documents.
Can “living wills” be hazardous to your health?
Recently, I talked to lawyers who expressed confusion and concern over the “living wills” they were asked to draw up. In addition, Medscape, a subscription website for medical professionals, and the American Medical News have published recent articles such as “Advance Directives May Be Hazardous to Your Health” and “Clearing Up Confusion on Advance Directives”. The last article even warns
“misinterpretations of end-of-life documents too often result in lost lives or unwanted care” such as when “physicians incorrectly assume that DNR means not to treat a patient who is critically ill”.
When even doctors and lawyers are confused, there is a big problem. In the real world of medicine, I even heard some doctors say that if in doubt, it might be legally safer not to treat than to treat someone with a “living will” in an emergency because of lawsuits where a patient with a “living will” survived or had serious impairments.
SHOULD I EVEN HAVE A “LIVING WILL”?
When “living wills” first came out, I felt I was safer not to have one to make sure I received treatment. Later, I changed my mind. I felt it was safer to designate someone I trusted with the legal authority to make decisions if I was unable to speak for myself rather than just leave it to my family members, some of whom vigorously disagreed with my stance for feeding brain-injured people like Terri Schiavo.
I never tell people that they must or must not have a “living will” but everyone should be fully informed. I do encourage people to check out information sites like the Pro-Life Healthcare Alliance’s “Informed-A Guide to Critical Medical Decisions” which has sections explaining ventilators, CPR (cardiopulmonary resuscitation), feeding tubes, misuse of opioids and sedatives as well as end of life considerations.
There are also several informative and protective “living will” documents from organizations like the Patients Rights Council and the American Life League. The National Right to Life Committee even has such documents online and specific to state laws.
Some Points to Consider before signing a “living will” style document
Here are some of my personal recommendations as a nurse before signing a standard “living will” or even a protective one.
1. Make sure the document is as short as possible, simple to understand and that the presumption for life is expressly stated so that if doctors are in doubt about your wishes, they should treat you.
What most people do not know is that “living will” style documents often go unread by doctors and nurses until a critical situation develops and time is of the essence. Even worse, some doctors and nurses still assume or misinterpret “living wills” as meaning the patient does not want treatment, especially if the patient is older or disabled.
2. Avoid vague terms like “significant recovery” and “terminal event” that have no objective medical standard and can easily be misinterpreted.
I’ve seen patients who have just had a stroke or head injury incorrectly judged “terminal” or “incurable” by doctors. Such patients often get better with time and treatment. And, of course, any treatment that is medically futile or excessively burdensome to the patient can be ethically withdrawn later. I add the emphasis because now futility and burden are too often assumed to mean an inadequate “quality of life” or economic burden to the family or society.
3. Designate one person you trust to make your medical decisions with a backup person or persons.
Sometimes when only one person is the designated decision maker, he or she may be unavailable or incapacitated so a backup is important especially in a critical situation.
4. Consider not checking off particular treatments or conditions to be automatically refused.
Personally, I wanted a positive “living will” that only designates my decision maker and his/her right to make decisions about my care rather than signing a “living will” to refuse future treatment or set possible future conditions where I would want treatment stopped or withheld. Instead, I want all current options, risks and benefits of treatment fully explained to my decision maker based on my current condition.
5. Many “living wills” contain a section on pain with such sentences such as “I want my doctor to give me enough pain medicine to relieve my pain”. You might consider adding a phrase like “without hastening my death.”
I have seen unnecessarily high doses of pain medicine deliberately given to make a patient unconscious while food and water were stopped. Often, this was called “comfort care” instead of terminal/palliative sedation but the result was hastening or causing death by dehydration and/or suppression of breathing.
Everyone wants and deserves adequate pain control at the end of life. Carefully increasing doses of pain medication and other measures work in virtually any situation and family members should advocate this for their loved ones.
There may be no perfect “living will” but as a former hospice nurse and family caregiver myself, I believe that dying people have a right to a good death with as few medical interventions as possible for comfort without deliberately hastening or causing death. The time before death may be short or long but I believe that people have the right to die at their own natural pace.
Death is not something to get over with as soon as possible. As some people with terminal illness have told me, they hated being treated as if they were already dead when they were still alive. They wanted to hear jokes, be with family and friends, go to church, etc. And since hearing is thought to be the last sense to go, I interacted with my dying patients in comas just as I did with my conscious patients.
The process of coming to terms with death can be difficult at times but it also can be a meaningful time to review a life with all its joys and sorrows as well as a time for family and friends to show love, support and even healing.