You’ll be hearing a lot all month about National Health Care Decisions Day (April 16) and the importance of doing your advance care planning and completing your advance medical directives. ICYMI, in the fall of 2020, one of palliative care’s most prestigious voices, Dr. Sean Morrison, published an article in the Journal of Palliative Medicine aptly titled, “Advance Directives/Care Planning: Clear, Simple, and Wrong.” In sum, the article stated that 30 years after the Patient Self-Determination Act (which required health facilities to inquire/inform patients about their advance directives), 80 systematic reviews covering >1660 published research studies, and funding by the NIH (our tax dollars) of >750 research studies totaling >$300 million, and “untold millions” spent by philanthropic foundations, we have “only limited and low-quality evidence that advance directives/care planning can actually result in changes in patient, family, clinical, utilization, or financial outcomes.” In short, advance directives “don’t work.”
Needless to say, the effect was that of a depth charge detonation in the placid lake of palliative care’s assumptions and strenuous assertions about the importance of advance care planning/directives. Rebuttals were written, panels convened, pods cast, webinars aired, all in breathless efforts to ensure we don’t abandon advance care planning altogether!
In fairness, Dr. Morrison’s main point was NOT that therefore no one should do any advance care planning or complete advance directives or that we should leave off any and all efforts to encourage and more fully implement them. His point was that maybe it was time to turn our attention, research efforts, and scarce financial resources to other efforts – such as teaching clinicians how to have effective “goals of care” conversations that would elicit meaningful preferences at the moment of medical need rather than pondering and documenting hypotheticals that may or may not come about and may or may not be congruent with the patient’s actual preferences and goals and medical realities sometime in the far future. Still, the bomb Dr. Morrison dropped is still reverberating and attracting a lot of return fire.
I must say that Dr. Morrison’s skepticism about how advance directives “work” has been nagging at me for some time. More and more as I’ve continued to preach the gospel of advance care planning over the past two decades, I’ve been concerned that I’m actually selling snake oil. In truth, SO many stars have to align for advance directives to “work” – to achieve outcomes in care and treatment that people have stated they want. I’ll spare you the entire telling of the links in the long chain that must all fasten up – it’s a lot! And a lot of it is outside any individual person’s control or even knowledge. It can seem like it’s just not worth the effort.
So where does that leave us on this National Health Care Decisions Day? Well, for what it’s worth, I do still think that going through a thought process about what kind of care and treatment you want and don’t want is worthwhile. And, it’s actually a legal necessity to designate someone to make such decisions for you when you can’t. So here’s my wiki on advance care planning/directives, born of 20 years of study and teaching, giving and taking professional guidance, being a patient and a family member of patients many times over. Ready?
3-by-3 for Getting Your Care Your Way: Three Realities and Three Steps for Effective Advance Care Planning
- Everybody dies. The mortality rate among humans is still, eventually, 100%. That includes you.
- In America, only a small percentage of people die suddenly without the opportunity for medical intervention and the need for medical decisions. Most people die slowly, over a number of years, with increasing debility and decreasing decisional capacity. It is almost guaranteed that at some point, you will need someone else to make decisions for you. If you want your choice of person doing that – and not some default based on outdated societal assumptions about relationships – you need to make an official designation of decision-making authority.
- The American “healthcare system” and the clinicians who work within it are highly educated, “acculturated,” and motivated to “do everything” to fix you – sometimes without adequate regard for the suffering that might entail. There is a kind of inexorable momentum to treatment for a longstanding illness even as it moves, also inexorably, toward death. Dr. Jessica Zitter aptly termed this the “medical conveyor belt.” It’s up to you, or your substitute decision maker, to ensure your passage through that momentum is as much your choice as the system’s.
- Pick someone you trust, knows you well, is easy to communicate with about hard topics, and is assertive and confident enough to go toe-to-toe with lots of healthcare professionals and the “system” to ensure your choices are known and, as much as possible, honored. ASK that person if they are willing to serve as your healthcare agent. (Pro tip: Think beyond your spouse or life partner. They have a lot of “skin the game” and may have some unanticipated conflicts of interest when it comes to enforcing your choices. They might also be in the same car wreck, get the same pandemic disease at the same time, or be dealing with their own debilities at the time you need them most. A better choice might be an adult child, other relative, or close friend.)
- Download your state’s official medical power of attorney appointment form* and complete it as directed, naming your choice as your healthcare agent. Give a copy to them. Give a copy to everyone else with a close interest in your well-being. Give a copy to your primary care physician and, best of all, get it into your electronic medical record. Keep the original handy, NOT in a safe deposit box. (Pro top: Revisit this document and your choice every 5 years or so; remember to update it if your relationship with your chosen person ends or changes in a way that prevents them from serving, or they change their mind.)
- Talk often and openly with your person about your values, your preferences, your choices, not just for medical treatment and care but for your life. Play out the “what-ifs”: What if I have a stroke? What if I get cancer? What if I’m physically disabled? What if I lose a lot of my mental capacity? A very effective aid in this process is The Conversation Project’s Starter Guide. Think about, but beyond specific treatments. Ventilator, tube feeding, CPR/resuscitation, dialysis, chemotherapy are the biggies, but there are so many possibilities, and so many treatments that haven’t even been invented yet, it’s not possible or helpful to anticipate them all. (I once saw a living will that stated, “Don’t put me in an iron lung.”) Think more about what constitutes, for you right now, a life worth living.
There you have it. Simple. But, as Mother Theresa was fond of saying, “Simple, but not easy.” April 16 is a good day to start this process, but it can be any day, any time, preferably before too many days go by. Whether you are 18 or 81, it’s never too early, but it can quickly become too late.
*Many states have combined the medical power of attorney appointment form with the “living will.” The former allows you to legally designate a person as your substitute decision maker; the former allows you to spell out specific treatments you don’t want (or do) if you are terminally ill or permanently unconscious. You don’t have to complete both parts, although you can, if you are very firm in your choices.