It’s hard to pinpoint just when it was decided that we could sidestep anything unpleasant in our lives by simply not thinking or talking about them. Wouldn’t it be great if this avoidance technique worked? ‘Let’s not mention anything about death – that way, no one dies.’ We know full well life doesn’t work this way, yet we persist, especially when facing tough or painful decisions, decisions with real consequences. This is most particularly true in the realm of medicine and health care. Our doctors don’t want to take on end-of-life discussions, nor do the rest of us. The result of all this demurring?
Let’s see. Studies funded by the Agency for Healthcare Research and Quality (AHRQ) clearly show that most patients have not made advance care plans. Keep in mind that the Patient Self-Determination Act guarantees patients the right to refuse or accept treatment and to prepare an advance medical directive. They just aren’t doing it. In fact, AHRQ research has found that:
- Fewer than 50% of severely or terminally ill patients studied had an advance care directive in their medical records.
- Barely 12% of patients with an advance care directive had received any input from their doctors in its creation or development.
- Between 65% and 76% of physicians whose patients had directives were not aware that the documents existed.
- Having an advance care directive did not increase documentation in a medical chart regarding patient preferences.
- Advance care directives were used to help make end of life decisions in less than half of the cases where a directive existed.
- Most advance care directives were not applicable until a patient had become incapacitated and ‘absolutely hopelessly ill’.
- Providers and patient surrogates had real difficulty knowing when to stop treatment. They often waited until the patient crossed the threshold over to actively, obviously dying before the directive was invoked.
- Language in the directives was often too nonspecific, too general to provide clear instructions.
- The surrogates named in the directives were often not present to make decisions or were too emotionally upset to offer guidance.
- The physicians involved were only about 65% accurate in predicting patient preferences and tended to make errors of undertreatment, even after reviewing a patient’s directive.
- Surrogates who were family members tended to make prediction errors of overtreatment, even if they had reviewed or discussed the advance directive with the patient or assisted in its development.
There are some interesting conclusions we might draw from these findings, especially the last two. Physicians and medical professionals, with their training, science and firsthand experience with treatment options and their consequences, go for under-doing it as the end approaches, while family members, desperate not lose a loved one, go for over-doing it. Where are the patients themselves in this situation?
Once again, things are not black and white. While the majority of people who die in this country (80 to 85 percent) are Medicare beneficiaries age 65 and older, there are also newborns, infants and children in the mix. Of the older people, most die from chronic conditions such as diabetes, COPD, renal failure, Alzheimer’s, heart disease and cerebrovascular disease. Only roughly 22% of deaths in people over age 65 are from cancer. Does this make some kind of difference as far as planning goes?
Yes. People with terminal cancer often follow an expected trajectory or course of dying. They usually maintain their activities of daily living until about two months prior to death. Most functional disability occurs in those last two months.
The story is very different for those patients with chronic diseases such as heart disease or COPD. These people tend to go through periods of slowly deteriorating health marked by sudden severe episodes of illness that require hospitalization. The patient usually recovers and a pattern is established: declining health, hospital stay, return home, repeat. Eventually, the patient dies. There is a great deal of uncertainty among these patients about when death is going to occur.
Patients with other chronic conditions such as dementia, stroke or simply the increasing frailty of old age experience a third trajectory of dying. Their mental and physical health steadily declines, ending finally in death. These patients are often not told their chronic disease is terminal. Figuring out or estimating a time of death for these patients is far more difficult that it is for cancer patients.
Challenging, isn’t it? All the futuristic medical equipment, scanners and computers and the scientists who use them on one side, and the frail patient whose health crisis finds him hospitalized yet again on the other. Is this the one? Does he die this time? Despite all the skill and technology, no one is really quite sure. The anguishing starts. What can we do to keep him going? Should we keep him going? Is that what he wants? Are we doing the right thing?
The patient might have an incurable disease and medical treatment won’t cure that condition, but it will most certainly resolve the immediate crisis. The patient’s life could possibly be extended. He is close to death, surely, but is he in the act of dying? There is no clear and recognizable line here, no sharp threshold between being very sick and actually at-that-moment dying – until it happens. And suppose the patient is incapacitated or a minor? This leaves everything up to the doctors and the families.
Making very important decisions in the midst of a crisis is never a good plan. If ever there is a time when communications will break down, this is that time. Dying patients and their families consistently report that they were hopelessly confused about the medical treatments, conditions and prognoses the doctors discussed with them mid-emergency. Afterward, they felt they made choices whose consequences they did not understand. And often, because they were in totally unfamiliar territory, they went for the ‘keep him alive at all costs’ option – not necessarily what the patient wanted at all.
Okay. Doctors are supposed to start these conversations well before there’s a crisis, but they don’t. Family members and surrogates don’t want any part of death or dying talk. But the patients themselves? Only 5% – 5%! – stated they found advance care planning too difficult to discuss. The rest were fine with it, in fact, wanted to plan, wanted to be ready.
We’ve got to fix this. Next up, ways to make it work.