I heard a talk last year by Arthur Leonard Caplan, PhD, a well known and well respected bioethicist, who presently is the Director of the Division of Bioethics at New York University. His talk to a group of healthcare professionals addressed the dilemma of why so many people die in healthcare institutions without having their end of life plans recognized and honored. As a point of inquiry, and as an effective way of laying the groundwork for the essence of his talk, Dr. Caplan started his presentation by asking how many people in the audience had Advance Directives. I would estimate that roughly 15% (40 out of 300) of those present raised their hands in the affirmative. And this was a sophisticated audience of healthcare professionals. Dr. Caplan was obviously not preaching to the choir. I found this astounding, especially in light of the fact that Living Wills and Advance Directives are now regarded as such an integral part of a patient’s medical record, particularly when the patient is admitted to the hospital. The absence of the guidance an Advance Directive can offer is one of the many reasons people today don’t die the way they want to.
But the problem runs much deeper than just not having an Advance Directive.
The fact is that, basically, most people don’t like to talk about dying. And in addition, most of the time we don’t even fully accept that each of us will eventually die. Rather, we tend to deal with this inevitability by simply saying, “Yes, I know I have to die eventually, but it probably won’t happen to me.” Woody Allen has chimed in on this issue with his comment, “I’m not afraid of dying. I just don’t want to be there when it happens.” Ignoring that we have to die engenders a false sense of security. Besides denying this fact of life to ourselves, we tend to avoid discussing our eventual death with family and friends because we don’t want to upset them (or us). Most people feel that it would be a depressing conversation. Nowhere was the painful nature of the subject so obvious than when President Obama’s Affordable Care Act was debated and the issue of Medicare reimbursement for a doctor visit to discuss end of life issues, planning, and patient wishes became a center of attention. It was immediately politicized into a “death panel,” and then it was falsely disseminated that end of life care would be rationed. This to me was just another avoidance of having the discussion of how we want to die and planning appropriately for it.
A big part of the fear of dying is rooted in the fear of facing the unknown. Interestingly, it is well documented that people who have had near-death experiences and survived actually report a serene, pleasant, and profound occurrence that follows a similar pattern in different people and involves a feeling that is difficult to describe in words. People who have had near-death experiences usually lose all fear of dying after having had that experience. But even without that reassurance of what dying may be like, the fear of the unknown should not prevent you from discussing how you want to go through the dying process itself, should there be a choice at the end of your life. Such a discussion can set the stage for some control over what happens to you before you die, assuming that death is not sudden and unexpected. This discussion and appropriate planning can give a certain amount of comfort, since potential end of life choices have been decided ahead of time and not left to chance or decision makers who don’t even know you. In many ways, this is also such a gift to your family or friends, because it lets them know what you want without putting such a heavy responsibility on them to make a difficult decision for you, a decision that might otherwise leave them with some guilt, if they didn’t know your wishes for end of life care. Finally, talking about dying can lead to closeness with family members and/or friends. It clears the air and can foster intimacy because of the honesty. And such an open discussion can enrich relationships when everyone is reminded that our time is finite.
Assuming you find the courage to discuss with family members or friends how you want to die, you must then chose a medical proxy who has medical power of attorney and who can make decisions for you at the end of your life, if you are not able to. It is not enough just to choose someone with this responsibility. You must have a detailed conversation with your medical proxy so that he/she knows exactly what you want to happen, should difficult decisions need to be made and you are unable to make them. Hard as it is or may seem to have this discussion, it can give such a sense of relief and comfort to know that someone will be in charge at a difficult time, if you may not be able to make your wishes known, and will insist that your wishes are respected and carried out. In addition, the medical proxy can help prevent chaos and turmoil when different family members disagree on what course to follow when a family member is dying. So often, life is prolonged or heroic measures done when the patient would not want it, but certain relatives do want that course of action taken. In such a situation, the medical proxy with medical power of attorney makes the decision based on the patient’s instructions and can avoid the confusion and misunderstanding that leads to prolonging life against the patient’s will.
It should be no surprise that the person planning how he/she wants to die, should there be choices, needs Advance Directives. And yet, so few people in the United States, roughly 15-20%, similar to the healthcare audience mentioned above, have Advance Directives that clearly delineate what they want at the end of their lives. The Advance Directives give the medical proxy power to make decisions the patient would want, should that patient not be capable to decide for himself/herself as they near the end of life. These decisions can be quite complex and involve different case scenarios. Most people who have Advance Directives sign a standard form in their lawyer’s office and feel that everything is taken care of. But I was quite astonished and enlightened when I took a mini course with Mark Peterson, Ed.D, a retired clinical psychologist, consultant, and educator in Philadelphia. I learned not only about the necessity of Advance Directives, but also about the intricacies of Advance Directives and the importance of specifics within them.
Dr. Peterson, whose website is www.havingyourvoice.com , has devised different clinical scenarios with options of care that might be chosen in each case, such as assisted breathing, nutrition, pain management, and all levels of other medical interventions. It made me realize that simply saying “No Resuscitation” in your Advanced Directives is not enough. You must consider what you really want under a range of circumstances. For example, if you were in a coma with little chance of recovery, but could feel the pain of an infected toenail, would you want that treated with minor surgery? It became obvious to me that there are many shades of gray in making end of life decisions. It takes a lot of thought to decide what you really want under a wide range of different clinical circumstances.
After making your wishes known to the lawyer drawing up your Advance Directives, you should give a copy of the document to your medical proxy, family members and primary care physician. If you are admitted to a hospital, a copy of your Advance Directives should be on your chart, and if you are in a chronic care facility, the staff should also have a copy. Obviously, creating Advance Directives takes effort and a lot of thought, but not having them makes it very likely that you won’t have much say at the end of your life.
In Dr. Caplan’s talk, he emphasized that patients not being prepared is half of the problem of why people don’t die a dignified death or at least have their wishes honored when they are dying. Physicians and the approach toward medical care may also be part of the problem of why people often don’t die the way they want to. I’ll discuss that next time.
Donald M. Friedman, M.D.
Spirituality and Healthcare