For years, advance medical directives, popularly known as living wills, have been promoted as giving people control over what happens to them at “end of life”, i.e., when they are in dire medical straits. (1) It is hard to disagree with the concept. Certainly, people have the right to refuse treatment they don’t find helpful or to say no to certain types of invasions of their bodies. This goes to the core of personal autonomy. Yet advance medical directives, which often involve checking off boxes in a document filled with boilerplate language, may be invoked years later in situations that the person did not think of or intend. (2)
The dilemma it seems to me is that in situations where a person is judged unable to communicate, advanced medical directives operate as a sort of poor man’s substitute for informed consent. In an ableist health care system focused on cost containment, this may be dangerous.
Living wills are usually triggered when a person is deemed terminally ill or with an irreversible condition. This creates an ambiguity regarding whether the prohibitions in a living will apply even when the patient has a very treatable condition if he also has an incurable condition. (This is one reason why some people with permanent disabilities are leery of signing a living will.) Is this something that is always reflective of a person’s intent or what may become his intent as his life circumstances change? A person who has developed a congestive heart condition, for example, may want treatment for a strep throat. Patients, families and doctors may not fully appreciate this distinction.
One study found that doctors are likely to view living wills as being broader than they actually may be. 50% of doctors in the study misinterpreted a living will as having a “do not resuscitate” (DNR) order when it did not and about the same percentage over-interpreted DNR orders as meaning no treatment except “comfort care” or “end-of-life” care. (3)
As Diane Coleman said a decade ago, “advance care planning has developed under the false premise that the primary or only problem is overtreatment of dying people. A balanced approach would also address the problem of under treatment of people who may or may not be terminally ill.” (4)
In my view, this lack of balance and unawareness of medical and social context is one of the flaws of the Conversation Project. The program encourages everyone to decide what treatment they do or do not want at end of life and then draft advance directives accordingly. (5) The trouble is that the playing field is not level. Health care disparities abound and large groups of people must struggle to get the care and practical support they need. (6)
The Conversation Project suggests that people uncover their views by considering a series of questions and then rating where they fall between opposite alternatives. Examples include “I strongly prefer to spend my last days in a health care facility” versus “I strongly prefer to spend my last days at home” and “I would want to try every available treatment to extend my life even if it’s uncomfortable” versus “I would not want to try treatments that impact the quality of my life in order to extend my life.” Among the “ideas” the project provides regarding how to respond to “what matters to me most through the end of my life” are being independent. (7)
All this would seem to fuel anticipatory fears about being disabled. Short shrift is given to problem solving. What is being depicted as pro-active is not in fact pro-active. It would be more constructive for individuals and the community to focus on issues such as what are the ways to minimize the chances that a person will end up in a nursing home or how can the treatment a person would want be delivered in the least uncomfortable manner.
More generally and apart from the Conversation Project, linking advance directives with so-called end of life care in and of itself creates bias. Why would you want to have doctors pull out all the stops when you are going to die anyway? This bifurcation between the care you may want in hypothetical situations when your time is running out and the care you would ordinarily want may be artificial. It may create self-fulfilling prophesies.
Early in the pandemic, older adults with covid-19 would go to emergency rooms and medical providers would implement their advance directives (for instance, no CPR or mechanical ventilation) because of an assumption that proved to be erroneous that the virus was “universally fatal” to seniors. Dr. Sean Morrison, a gerontologist and palliative care specialist at Mount Sinai Hospital, said he and his colleagues witnessed this happen repeatedly. (8)
In a similar vein, Dr. Joseph Fins, an expert in consciousness levels, has stated in regard to people who have sustained major brain injuries, “It’s glossing over all the unknowns for the sake of a quicker, cleaner solution. It’s wrong to be so uniformly fatalistic so early on, especially with all the data emerging about the prospects for later-stage recovery.” (9)
Morrison and other specialists are proposing a different model for advance care planning to enhance patient decision making and autonomy. Rather than segregating out so-called “end of life” care from health care in general, the priority should be on helping people make complicated decisions when they become seriously ill. (10)
“We’re saying stop trying to anticipate the care you might want in hypothetical future scenarios,” Dr. James Tulsky, who is chair of the department of psychosocial oncology and palliative care at the Dana-Farber Cancer Institute, has stated. “Many highly educated people think documents prepared years in advance will protect them if they become incapacitated. They won’t.” (11)
According to Morrison, “we should be focused on helping them [patients] make difficult decisions in the moment, when actual medical circumstances require attention.” (12)
For example, if a person was in danger of cardiac arrest due to blood loss from an injury, the question would not be do you have a DNR (resuscitation may involve the cracking of ribs) but do you want resuscitation if needed in this situation for survival?
This approach would be a huge step forward but it can be improved with input from the disability community. Access to in-home aide support is crucial to promoting the personal autonomy we all want. This is an issue that should concern the whole population. Any able bodied person can become disabled and any person with a mild or moderate disability can become more significantly disabled. (The latter is something that our movement should give more bandwidth to).
We can also advocate that supported decision making (13) be used more in medical situations. Everyone should have such a network of friends or trusted advisers who can help them make major medical decisions when needed. Let’s take the concept mainstream. This would minimize the reliance on health care proxies where one person has total decision making authority for another person and reduce possible conflicts of interest.
Advance directives are a dead end without choices, alternatives and flexibility.
1 thought on “Lisa Blumberg: Getting Beyond Advance Medical Directives”
I broke a rib once. It was as bad as having a bad cold. Let’s question the ableist idea that DNR orders are good because broken ribs are worse than death. How many people think a bad cold is worse than death?
I broke a rib once. It was as bad as having a bad cold. Let’s question the ableist idea that DNR orders are good because broken ribs are worse than death. How many people think a bad cold is worse than death?