Taking the Pain Out of Medical Decision-Making
A tough topic gets blunt treatment: Here's what to know now about health care advance planning
On the heels of Tax Day this year comes National Health Care Decisions Week, which occurs from April 16 to April 22. The switch this year from one day to a full week may be a stretch because — let’s be honest — at least half of us refuse to consider our own demise for even a moment, let alone for a whole week.
But in the interest of inspiring advance care planning, here’s an offer: If you’ll give me a few minutes, I’ll explain why you should spend some time thinking about medical decision-making.
You must protect your rights and autonomy as a patient in any health care situation.
Since the case of Karen Ann Quinlan over four decades ago, legal and health care professionals have been telling us that advance planning for medical decision-making should target the final days or weeks of life. It turns out they were wrong — and when I say “they,” I mean me, too.
Not long ago, in updating my 2006 book on advance directives, I looked back on what frustrated readers and audience members had been telling me for 10 years. As they journeyed through the health care system with sick and dying loved ones, they had faced a series of challenging decisions over years or even decades. Rather than questions of a ventilator or a feeding tube, the mind-numbing barrage of daily choices typically included insurance benefits, the dizzying array of treatment options for a life-limiting or chronic condition, and whether to authorize painful tests for someone with a late-stage degenerative disease.
Time and again I heard this sentiment: “We would have made different decisions if only we’d understood.”
It was a lightbulb moment for me: Preserving the right to informed consent and to receive competent and compassionate health care and end-of-life care is entirely dependent on the decision-maker's level of health literacy.
Health literacy is the ability to obtain, process, and understand basic health information needed to make informed medical decisions. Whether you are considering an elective surgery, dealing with a mountain of prescriptions or confronting the need for hospice care, health literacy is essential. Having logistics in place to get user-friendly answers to your questions and mindfully evaluate available options is key to protecting your rights and autonomy as a patient in any health care situation.
Back to National Health Care Decisions Week. Frankly, we're at the point where most people go astray: the paperwork. The good news is that effective and relevant health care advance directives can light the path to health literacy for the patient, proxy and physician, provided they:
- identify the patient's values and personal goals;
- clearly communicate specific end-of-life directives;
- authorize the proxy to make informed decisions as the patient would, if able;
- specify health care professionals' duty to honor the patient's wishes; and
- outline a method for shared decision-making under all medical circumstances.
And a comprehensive and relevant advance directive acts as an invaluable decision-making tool for those who will self-manage care to the end of life, as well as for a future health care proxy.
Consider your response to the questions that should only be answered for each one of us, by each one of us: "When do you think enough is enough?" and "If you are ever too ill to think or speak for yourself, whom do you want to speak for you?" Make sure your advance directive includes your autonomous answers to these vital questions. If you need assistance making it all legally enforceable, see an attorney.
By walking through the process of effective advance care planning, you'll take one of the most valuable steps toward achieving health literacy: making preparations to be an informed patient. You'll also empower your proxy to practice substituted judgment on your behalf, if necessary, and you'll be ready to act as the best advocate you can be for someone else, if you ever have that privilege.
Attorney Jo Kline Cebuhar is the author of books on medical decision-making and the meaning of legacy, including "The Practical Guide to Health Care Advance Directives."