Is Advance Care Planning Pointless? (Spoiler: No)
To no one’s surprise, I started this post in January and I am only now getting around to finishing it. Despite my tardiness, I still think this is an important conversation to have so we’re gonna have it.
You may have seen this piece from Kaiser Health News because it has made waves since it came out, especially in the death care community. If you haven’t read it, here’s a rundown of what it says:
Americans have been urged for decades to complete their advance directives (if you aren’t sure what advance direct and advance care planning are, read this blog post that goes over the basics).
A group of experts* (Dr. Sean Morrison, Dr. Diane Meier, Dr. Ronald Arnold) is now saying we need to stop telling people to complete advance directives because they aren’t improving end-of-life care (the experts that the article refers to also wrote this opinion piece in JAMA on the same topic).
These experts say that despite the time and effort that has been put into getting more people to do advance care planning, it isn’t achieving the desired results. Most notably, it “ has not been shown to ensure that people receive care consistent with their stated preferences”.
Another doctor, Dr. James Tulsky, says that we need to stop trying to anticipate the care we may want in future hypothetical situations because documents created years before the situation don’t protect us when we’re incapacitated.
He says that the reasons for this are documented in studies (although this article fails to provide any reference list for these studies) which show that people’s preferences change as their health status changes, the forms sometimes offer vague and/or conflicting goals for end-of-life care, families, POAs, and clinicians often disagree with a patient’s stated preferences, documents aren’t readily available when needed, and services that could support a patient’s wishes aren’t always readily available.
The author then goes on to state that these above opinions on advance care planning are controversial and receiving pushback.
Another doctor (Dr. Rebecca Sudore), who is of an opposite opinion, it seems, to all those that were interviewed for the first part of the article, says that advance care planning has evolved significantly in the past decade and now the focus is on conversations between patient’s and healthcare providers and the patient’s goals and values. The focus is no longer on completing documents and this progress shouldn’t be discounted.
This doctor also says that anticipating what people want at the end of their lives is no longer the primary goal of advance care planning. The new priority is helping people make complicated decisions when they become seriously ill.
Further still, when people with serious illnesses have these kinds of conversations they have less anxiety, feel more in control of their care, feel better prepared for the future, and can better communicate with loved ones and healthcare providers (this point was made by Dr. Jo Paladino).
Dr. Randall Curtis stated that although advance care planning is not necessarily helpful for making specific treatment decisions or guiding future care, it brings peace of mind and helps prepare people to make those decisions when the time for that comes.
Dr. Curtis believes that the assessment of the effectiveness of advance care planning needs to include these “deeply meaningful unmeasurable benefits”.
The author then discusses the history behind the push for advance care planning. She discusses Cruzan v. Director, Missouri Department of Health. This is a Supreme Court case from 1990 which involved a 25-year-old woman whose car skidded off the highway resulting in a brain injury that left her permanently unconscious. Her parents, after several years, petitioned to have her feeding tube removed and the hospital refused. The case made it to the Supreme Court and in a 5-4 decision the hospital’s right to refuse was upheld because there needed to be “clear and convincing evidence” of an incapacitated person’s wishes.
Later in the year, Congress passed the Patient Self-Determination Act which set forth a requirement for hospitals, nursing homes, home health agencies, health maintenance organizations, and hospices to ask if someone has an advance directive and if they do, to follow those to the extent possible.
The author returned to Dr. Meier on this topic, who stated that the result of the Patient Self-Determination Act is very often just a check-box exercise that doesn’t include in-depth discussions about prognosis, quality of life, or a realistic plan.
Dr. Meier noted that only 37% of adults have completed advance directives, which in her view is a sign of uncertainty about their value.
Another doctor, Dr. Scott Halpern, says there are other issues that compromise the utility of these documents. These issues include inconsistent patient preferences and preferences that are difficult to apply in real-life situations (leaving medical providers without clear guidance).
The article then goes back to Dr. Morrison, who says the focus needs to be on helping people make difficult decisions in the moment, when there are actual medical circumstances that require attention (instead of asking them the make decisions about hypothetical scenarios in the future)
The article then says it is difficult to determine when the end of life is at hand and when treatment might postpone that eventuality (it’s unclear if this is the author’s opinion or also from Dr. Morrison).
The author goes on to say that despite the controversy around written advance directives, there is support among experts for naming a healthcare power of attorney (also known as a proxy, agent, and sometimes surrogate). The article then discusses considerations when picking a power of attorney and provides resources about advance care planning.
Before we get into the problems I have with the article, I need to address something. Most people who I have seen discussing this online never made it to the second half of the article that presents the counterargument to “advance care planning is useless.” That, combined with the title of the article, has led to a barrage of comments about the futility of trying to educate and assist with advance care planning. I welcome discussion on this, but only if we can have an informed conversation, which includes reading the entirety of the article.
Now, let’s talk about some issues I have with this article.
First (and this is mostly a picky technical issue)- the article really should have started with the history of advance care planning. In my experience, when people understand why this push to have these conversations and complete these documents began (and specifically when they learn about Terri Schiavo and Nancy Cruzan cases) they have more appreciation for their importance and value and are more likely to partake in these conversations and complete their documents.
Second- advance care planning is not only for the end of life. Although that may be the situation when these documents are most often used, there are other scenarios of serious illness or injury where the information contained within advance directives is important and comes into play. The fact that it is often framed as something for the elderly or seriously ill means that part of the conversation is being left out and we are missing a huge group of people (usually aged 18-50 and those who are otherwise healthy) who don’t think this applies to them. Those people are still counted for seeing who has or hasn’t completed the documents, so it isn’t surprising that the data shows that only 37% of adults having advance directives in place.
Additionally, in the article, Dr. Morrison says the focus needs to be on helping people make decisions in the moment. This is absolutely wrong. First of all, if discussions aren’t happening ahead of time and the person can’t speak for themselves (which is when these documents come into play), how will the person speaking for them know what the person would want? Or are we just okay with them making decisions without knowing that person’s values and preferences? This is not what the focus should shift to, which brings me to my next point.
Third- Those who have been doing the work to educate and help people complete their documents have never said that these are unchangeable documents or that they shouldn’t be updated. These should regularly be reviewed and updated regularly. So yes, the point that “documents created years before the situation don’t protect us when we’re incapacitated” may be true, but if these conversations are regularly had and documents updated as needed they should protect us when we’re incapacitated.
The reasons that are given for why documents don’t protect us aren’t super valid. The first is that preferences change as health status changes. This may be true but again, this is why these discussions should be continually had and why documents should be reviewed and updated regularly. The second is that the forms may offer vague or conflicting goals. Again, this may be true (although it depends on the documents) and may reflect a lack of easily understandable education to make decisions that aren’t conflicting. The third point, that families, POAs, and clinicians often disagree with the patient’s stated preferences, is not at all valid. It is not their decision to make. As long as the person wasn’t coerced into their choices, they are their choices. If there is concern that the person doesn’t understand the implication of the choices, providing education can be helpful but again, the fact that someone made a choice you don’t agree with doesn’t mean the process is useless. Finally, the fact that the documents arne’t always available is a problem but doesn’t mean that the documents are useless.
Fourth- if healthcare providers are treating these discussions as a check-box activity and not having in-depth and meaningful conversations about diagnosis, prognosis, and possible outcomes of available options (which are all things this article asserts), that is a failure of the medical community, not of the documents.
I believe this is a multifaceted issue that includes lack of end-of-life education, lack of confidence around difficult conversations, and lack of time as the demands placed on healthcare providers increase. None of this will be solved by getting rid of advance directive documents.
Finally- Advance directive is an umbrella term for a group of documents and the process of discussing your wishes and documenting them. The living will, which includes the treatments you want/don’t want is one of these and the healthcare power of attorney (and, in Arizona, mental healthcare power of attorney) is another.
The second half of this article states that experts do agree that naming a healthcare proxy (or power of attorney or agent) is important and is usually done by filling out a form. That is part of the advance care planning process. So why spend most of the article bashing the process to come in and say this?
Additionally, while I don’t dispute the importance of naming a healthcare power of attorney, not everyone has a trusted person who can and will act as a power of attorney. For these people, completing a living will is going to be their best bet for having their wishes honored.
In summary, this article made a lot of people feel that this work (educating people on advance directives and helping them complete these documents) is pointless. This article did provide information for both viewpoints in this conversation, but I believe many of the arguments made by those who believe our current paradigm for advance care planning is pointless, are wrong. Our system is not perfect and there needs to be more education for healthcare providers and patients alike to allow this process to live up to its full potential, but the discussion should be about how to improve things, not about getting rid of the process entirely. I for one will continue to encourage people to complete their advance directives, to review and update them regularly, and to discuss these documents and their wishes with their loved ones routinely.
*I want to make a disclaimer that I’m using the language of the article. All I know about these individuals is that they are doctors. I don’t know that they’re experts, because doctors are not inherently experts in end-of-life topics or advance care planning. This is not to say that these individuals aren’t, I just can’t say either way.