Craig Klugman, Ph.D.
For two decades, people in bioethics and medicine have extolled the virtues of advance directives. These documents allow a person to (a) list procedures, treatments, and values regarding desired future medical care and (b) designate an individual to be a surrogate decision-maker, when the patient lacks the capacity to make decisions and communicate them. Studies show that nearly 21% of adults today have completed such documents. And yet there is substantial evidence that advance directives are of limited utility. Often they cannot be found when needed, do not provide clear direction, leave doubt as to whether the person completing the document truly understands what it said, or the surrogate disagrees with the patient’s instructions. Still, having the document has been viewed as better than not having a document so that there is at least some guidance as to what a patient would have wanted when he or she no longer can speak. Having a directive was viewed as harmless since in most jurisdictions a patient can rescind the documents at any time and the directive only comes into effect, in most places, when the patient has lost his or her voice (decisional-capacity).
In a recent conversation, a friend shared her experience about her mother’s cancer battle. In her home state Mrs. F had gone for treatment and was told that her cancer was too advanced to benefit from chemotherapy, the treatment of choice for her particular disease. Mrs. F was referred to hospice and told there was nothing more to be done. The family asked for chemotherapy and the doctors said that could not be done.
Flash forward three months and Mrs. F is doing very well. Her daughter brought her halfway across the country and Mrs. F was given treatment. Although not cured, Mrs. F is doing well with her health improving.
Why was one medical community unwilling to provide chemo for a condition that was viewed as hopeless while another readily gave it to the patient’s benefit? As my friend tells the tale, the reason was her mother’s advance directive. The first hospital said there was nothing to be done because Mrs. F had an advance directive. The document that is intended to allow the patient to have a say in medical care when capacity is lost was viewed as overriding the patient’s own words. Mrs. F was competent and capacitated but the presence of her directive prevented her from getting care. At some point in their medical education, these professionals were told that advance directive means “do not treat, no matter the patient’s status.”
Having an advance directive does not remove a patient’s voice. If a patient can speak with capacity then the patient’s wishes must override the documentation. Has the practice of medicine become so focused on paperwork that the breathing, speaking patient in front of the practitioner is ignored? The answer is apparently yes. My friend has said that if she is ever asked if she has an advance directive, the answer is going to be “no.” No one should be denied care that can provide benefit, that is wanted, and that is funded, simply because of someone misunderstanding the purpose of a piece of paper.
Luckily, with strong family support and a 1,500-mile flight, Mrs. F received the care that she wanted and has benefited from it. In this different city, physicians understand that an advance directive is not a declaration that a capacitated patient does not want care. Perhaps the problem relates to a system of medical education that encourages following decision-trees and computer algorithms and discourages creative, critical thinking. A greater emphasis on critical thinking would encourage someone to note the apparent conflict of a value that honors autonomy in a written document but denies that same autonomy when a capacitated patient speaks.
Although it seems that this story has a happy ending, its bizarreness continues. When a very capacitated Mrs. F asked is she could have a manicure—hardly a request on the order of a ventilator or a DNR—the hospital staff said that they would have to get permission from her daughter first because of the existence of a durable power of attorney for health care.