Improving Advance Care Planning
By Jennifer Moore Ballentine
April 16 is National Healthcare Decisions Day, so designated in 2008. The day after Tax Day was selected because – I kid you not – “’Tis impossible to be sure of any thing but Death and Taxes.”1 In recognition of the day, healthcare organizations hold events and offer resources to encourage completion of advance directives. This year, the Institute will offer our course Working With POLST at no charge in April. It’s a great course, and the POLST is a great tool. We hope you’ll sign up! So why am I inwardly wincing?
Like many in palliative care, I have passionately championed advance care planning—conducting 72 community and professional presentations, 5 focused conferences, 4 multi-session trainings, and 10 plenaries and panels over about 10 years. And as the years have gone by, I’ve felt more and more uneasy about the through-line message: If you take the time to reflect, discuss, and document your wishes, you’ll get the care you want and you won’t get the care you don’t want. Though I could never quite bring myself to say so, it just isn’t true.
Last fall, Dr. Sean Morrison, professor and chair of the Brookdale Department of Geriatrics and Palliative Medicine at the Icahn School of Medicine at Mount Sinai in New York City, co-director of the National Palliative Care Center, and director of the National Palliative Care Research Center, finally said it, in the Journal of Palliative Medicine no less.2
In a short article, “Advance Directives/Care Planning: Clear, Simple, and Wrong,” he noted that after 80 systematic reviews of more than 1,660 research articles covering more than 30 years at a cost of literally hundreds of millions of dollars, the bottom line is that the “vast majority” of adults don’t have advance directives and even when they do, the directives make no difference in their care.
Comparing advance care planning to his family’s 1975 Ford Pinto, a car with a “fundamentally flawed design yet one whose every broken part we dutifully repaired,” Morrison concludes that advance care planning will never achieve the desired result of care concordant with goals, and honestly, we all just need to move on.
The Flap and the Follow-Up
Well you can imagine the flap. Mind you, there are researchers, clinicians, and laypeople who have literally devoted their lives to the cause of advancing advance care planning, and whole organizations focused on encouraging conversations and designing scripts or tools, an entire industry of cloud-based registries or EMR-embedded workflows and programs to enable and retrieve documentation. . . .
Furthermore, advance care planning has been the “abracadabra” opening literal and figurative doors to audiences that hospice and palliative care organizations could otherwise never reach. What retirement community or church or club is going to invite someone in to talk about dying and death? Bye, Felicia! But a presentation on advance care planning? You betcha!
Levity aside, advance care planning provides a genuinely safe context in which to introduce hard topics like serious illness, incapacity, and decline, and to offer up something to do about it. Someone of Morrison’s stature saying that it’s all pretty much a waste of precious resources and it’s time to haul advance care planning to the junkyard got a lot of knickers in a big twist.
In a follow-up GeriPal podcast, Morrison slightly modified the message. His point, he clarifies, is not that advance care planning isn’t worthwhile or shouldn’t be done—in fact, having a healthcare proxy, “we know that that’s a good thing.” His point is that we don’t need to research it anymore – that we can move our research focus, time, and dollars on to other crucially important aspects of palliative care. And, more importantly, it’s the “advance” part of advance care planning that Morrison objects to:
… Does having something [in] advance take the burden off [the] proxy decision maker? I suspect it does in some circumstances … That being said, I would be really interested in the study that compares that to a healthcare professional who sits down and has a very good goals of care in the moment discussion and guides somebody through a decision that couldn’t be predicted in advance and what the outcomes on that family are. My guess quite honestly is that yeah, the advance directive may have made the decision making a little easier, but I suspect that if you compare that to what is a very good in the moment, goals of care discussion, the impact will be a lot more favorable…
The key phrase here is “has a very good goals of care in the moment discussion,” which is not exactly easy-peasy, lemon squeezy. In his article Morrison makes a point I’ve made many times in my talks on this subject: “Like learning a surgical procedure, [the goals of care conversation] requires specialized knowledge and skills, training with feedback from experts, and ongoing practice.”
The Value of Context, Conversation, and Training
So, what do we make of all this? Here’s what I think:
It is in fact true that advance care planning and advance directives – BY THEMSELVES – are no guarantee of “goal-concordant care.”
However, I do believe that there is value in the thought process and the conversation and even the documentation. More importantly, there is value in knowing that more than likely medical decisions will need to be made, and more than likely by someone other than you. If the COVID crisis has taught us nothing else, it’s that the need for these decisions can happen a lot sooner and faster than you might think.
So there is value in providing guidance to proxies and family members – not about specific treatments (I once saw a living will that said, “Don’t put me in an iron lung!”) but about what is important and where you would draw that line between “this life is worth living” and “let me go.”
In the context of a present serious illness or imminent decline, specific choices are more relevant and possible, and documentation in a POLST is the best tool we have so far (per the research). But the tool is only as good as the conversation that informs it (garbage in – garbage out).
So above all we need clinicians with the specialized knowledge and skill, with the training, and with lots of practice. So take our POLST course and check out our other offerings in advance care planning, sharing serious news, and communication strategies for informed and shared decision making.
And on April 16, take a little time for yourself and ask, what life is worth living and when should they let you go? After you pay your taxes.
1 The Cobbler of Preston, Christopher Bullock, 1716
2 Morrison, R. S. (2020). Advance directives/care planning: Clear, simple, and wrong. Journal of Palliative Medicine, 23(7), 878–879. https://doi.org/10.1089/jpm.2020.0272