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. If you are deeply steeped in the work of advance care planning, you’ll know there has been/continues to be some controversy about the effectiveness of advance care planning – at least in ways that can be measured in clinical research studies.
I must say that skepticism about how advance directives, in particular, “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, so many links have to connect up, for advance directives to “work” – to fully achieve “goal-concordant care.” I’ll spare you the litany of the links in the long chain – it’s a lot! And a lot of them are outside any individual person’s control or even knowledge. It can seem like it’s just not worth the effort. Yet here I am, newly minted CEO of an organization that has as one of its core activities promoting advance care planning!
So on this National Health Care Decisions Day, I’m here to say I still believe! I believe – more strongly than ever, really – that going through a thought process about what kind of care and treatment you want and don’t want and sharing that with a trusted person is worthwhile, even essential. And, it’s actually a legal necessity to designate someone to make healthcare decisions for you when you can’t. If you don’t make that official or verbal designation, you could end up with someone who doesn’t know your values or can’t get past their own concerns enough to follow them.
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 or the happenstance of who’s in the waiting room – 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, who 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 in 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 another relative or close friend.)
- Download the California Advance Healthcare Directive 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 or a shoe box in the top of your closet. (If you are not in California, you can download your state’s official medical power of attorney appointment form here.) (Pro tip: Revisit this document and your choice every 5 years or so, or anytime there is a big change in your life, family structure, health, or the availability/willingness of your agent to serve.)
- 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. Think more about what constitutes, for you right now, a life worth living. (Pro tip: CCCC’s decision aids for CPR, tube feeding, ventilator support, and artificial hydration outline in simple, easy-to-understand language the pros and cons of these life-sustaining treatments.)