An Alzheimer's patient is rushed to the emergency room, where her relatives tell doctors she has swallowed food down the wrong passageway.
They insert tubes so she can take in air and fluids. She survives the crisis. But the visit is so invasive that it worsens her other chronic conditions. Months later, she dies in an exhausted state.
It's a painful way to end a life, but Dr. Anthony Riley says it's one he sees all too often — and one patients and families can avoid if they plan carefully.
Riley, a Towson geriatrician, has spent years advocating so-called advance-care planning, the process of choosing ahead of time what kinds of treatments one wants and does not want at the end of life.
Had this hypothetical patient made out an advance-care plan, she could have spelled out in writing that, should she ever develop swallowing difficulties (a predictable dementia symptom), she be allowed to stay at home and given a liquid diet, making her final months more comfortable.
When adults make such plans, advocates say, they're making cogent decisions about what they truly want at the end of life. This eases the pressure on loved ones who might otherwise have to make the decisions for them and even sidesteps costly procedures the patient doesn't want or need.
"We're simply talking about rational decision-making about what truly matters to us" at the end of life, Riley said.
Riley, the founding medical director of Gilchrist Hospice Care in Towson, will spread the word about advance-care directives between now and December in monthly talks in the Civiletti Conference Center at the Greater Baltimore Medical Center. The free talks will cover everything from what forms individuals need to make a plan to what decisions they're likely to face as they age. The next talk is 5:30 p.m. Wednesday (gilchristhospice.org or 443-849-8205).
What is advance-care planning and why is it important?
Advance-care planning is a means by which we look down the road, anticipate what medical decisions we're likely to face, weigh the potential benefits and burdens of each, and put our preferences in writing. I can't stress enough how crucial it is to do this in advance, even by months or years, and not in the midst of a medical crisis, when emotions are running high.
What are the main issues involved in these choices?
Our training as physicians is mainly biomedical; we tend to focus on diseases. We're naturally optimistic about the tools we have to treat those diseases, [and] under the current payment system, we're rewarded for performing interventions. As a result, when we're presenting patients with a range of treatment options, we don't always mention non-intervention.
A fully informed end-of-life patient might choose what he or she sees as a better quality of life over suffering the risks and burdens of particular medical treatments.
Well, if you look at colonoscopies, they're effective [diagnostic] tools in cancer screening, but they can wipe geriatric patients out. That's why they're not recommended in patients with limited life expectancy. Most patients don't realize that — or that there are less invasive practical alternatives, such as fecal occult blood tests.
Or consider congestive heart failure. When it's diagnosed, [doctors] will say, "It's very treatable." And it is, with medications, defibrillators, heart transplant and more. But few realize the five-year prognosis for congestive heart failure is equivalent to that of certain kinds of cancer. Ten years out, 10-20 percent of patients are still alive.
Does a patient want every option exhausted for a 20 percent chance at living 10 years? Would he or she choose to avoid certain treatments, given the risks and burdens? It depends on how one defines "quality of life." The beauty of America is we still let people make that choice.
What forms does one need to write down a plan?
There are two. The first is the advance directive. It's a legal document that allows the patient to name a health care agent, a person doctors can turn to if the patient can no longer make decisions. It looks into the future and expresses a philosophy of care under certain conditions. It might say, "if I'm in a vegetative state" or "if I have a terminal illness," I don't want artificial nutrition or I don't want ventilation. It often goes into effect only when certain conditions are present.
Then there's the Maryland Medical Orders for Life-Sustaining Treatment, or MOLST. That's a medical order made by the physician or nurse practitioner. It translates the broader wishes of the advance directive into actionable, real-time physician orders.
It's mostly a binary form: "Given this stage of [a particular] illness, I want these and I don't want those." It covers wishes on everything from CPR to blood transfusions and being transported to the hospital.
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The advance directive can go unchanged for a long time. We recommend updating the MOLST regularly as a patient's conditions change.
When should patients lay out their plan?
It's never too early to start. Some make theirs out in their 30s or 40s when they're totally healthy and revise their MOLST as they age. Others wait. But if patients receive any kind of life-altering diagnosis, they should complete the process right away. This allows them to consider and make educated decisions about treatments they'll probably be asked about in the future.
Some people might fear ACP is a sort of rationing.
It isn't. In the United States, we let patients make these choices, and we let them do so affirmatively as well as negatively. Affirmatively means choosing to get interventions, all the way up to the point of intensive care, including intubation and tube feeding. Negatively means specifying what you don't want done under certain conditions.
"Rationing of care" would be the limiting of needed, wanted and beneficial care. Rational care insures that wanted, needed and beneficial care is provided. ACP is rational care.