(Next Avenue invited all our 2016 Influencers in Aging to submit essays about the one thing they would like to change about aging in America. This is one of the essays.)
Most adults have at least heard of the phrase “advance care planning” and know that it has something to do with living wills or medical powers of attorney — documents we generally refer to as advance directives.
But most adults have not thought about the fact that everyone has a default advance care plan, regardless of age or health condition. Medical decisions will be made for you when you can no longer make those decisions for yourself. By procrastinating important advance care planning, however, you are ceding control over your fate to others whose behavior will likely not be primarily driven by devotion to your personal values.
Alternatively, you can shape your plan to reflect your identity and values, just as you shape your relationships, your environment and your work.
Let’s take a look at four common reasons for avoiding advance care planning:
1. I’m uncertain about the documents needed. This may seem blasphemous from a lawyer, but here’s a secret — you don’t have to use any particular document.
Ambivalence is OK. Guidance in an advance directive can be very general, describing what values or priorities are important to you.
It’s true that every state has approved forms created by legislation or authoritative state groups such as the bar or medical association. But, these forms are intended to provide just one clear pathway to document wishes, not to eliminate all other avenues.
Other avenues may include less formal writings such as a letter to family members, answers written in an advance care planning workbook, statements recorded on video or documented discussions with one’s health care providers.
The point is that, in its broadest sense, any documented expression of your future wishes about health care is an advance directive. And most health care providers are respectful of a patient’s expression of wishes in any form, as long as they know of them and there’s no doubt about their authenticity.
2. It’s not necessary until I’m seriously ill. It’s true that the majority of us will die after a relatively long decline due to one or more chronic illnesses. So, we naturally think advance-care planning can wait. And wait. And wait. We also ignore the fact that most of us will have one or more periods of temporary illness or accidental injury during which we will be incapable of making decisions for ourselves.
Having a clearly identified decision-maker with knowledge of your treatment goals and knowledge about what it means to be your advocate is a priceless gift. Indeed, this is the first task in all advance care planning — naming a willing health care agent or proxy and discussing your health care values and goals with that person. This is equally as true for an 18-year-old as for a 98-year-old.
3. I’m putting it off because I don’t really know what I want. We are all ambivalent about illness and death to one extent or another. And, most of us will likely change our minds more than once about when “enough is enough” during the experience of serious illness.
Ambivalence is OK. Guidance in an advance directive can be very general, describing which values or priorities are important to you. Specific instructions tend to be reliable only when you have had considerable personal experience with a particular illness and its treatment.
Don’t get bogged down in details — the only matter that really needs specificity is the breadth of authority you give to your agent or proxy. It should be broadly defined to cover all health decisions flexibly and with broad discretion to interpret your values and wishes in light of the medical circumstances you face.
4. My family members and health care providers will probably do what I would want anyway. It’s true that most family members and health care providers want to do the right thing. But in this age of sophisticated, high-tech medicine where different teams of medical providers have responsibility for each of your organ systems, decisions are driven by forces you may not be able to predict.
Providers generally have one more treatment they can try and get paid for, even if it degrades your quality of life further. Health care providers and facilities are too often poorly coordinated, so without someone at the helm, treatment suffers.
Family members with whom you never talked about your health care priorities, goals and wishes will likely be in great distress at the realization that they don’t truly know what you would want. Or they may apply their personal preferences to your situation. Few families agree about everything, so conflict about what to do about your health care becomes highly probable if you haven’t engaged in serious advance care planning.
You may be asking: How do I begin? You can find the best advance care planning tools that I know on the website of the American Bar Association, where I direct the Commission on Law and Aging. Try any or all of the tools and follow whichever resonates with you.
You will find that the process is surprisingly uplifting. But no matter which tool you use, know that, in the end, it is only as good as the degree to which you engage your family or friends and your primary care provider in the process. In this case, talk is action.
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