People with advanced illness by definition have at least one chronic diagnosis that responds poorly to treatment, declining functional ability, and poor prospects for full recovery. For anyone this ill, the end of life is near. Whether they have cancer or non-cancer disease, over half of these people will die within six to twelve months and few medical treatments will extend their lives. Yet our standard of practice is to wheel them ever more frantically through the “revolving door” of the hospital as the end of life approaches.
Over 1/4 of all Medicare dollars are spent in the last year of beneficiaries’ lives. Spending is low until about 3 months before death. Then it sweeps suddenly upward, going vertical in the last month of life. Almost a third of the entire year’s spending happens in the last month before death, 80 percent of it in the hospital.
That’s a lot of treatment. But is it “health care?” It can’t have much to do with health, since it culminates in death for so many. And as anyone who has delivered that kind of treatment will tell you, it has very little to do with caring. You may try to be the model of the caring physician in Emergency Departments, hospital wards and ICUs. But at 4 AM as you’re straining to snake a catheter into the tiny artery running down the left wrist of any number of 85-year-old patients with Alzheimer’s and pneumonia while they scream at you in pain and terror, and you have no way of letting them know why you are putting them through what they clearly perceive as torture, and when they die a few hours later and everyone else in the ICU sighs with relief because they knew it was inevitable and they’re glad the suffering is over, you could be forgiven for wondering if any part of what you just did to those people should be referred to as “care.”
What would real healthcare look like for people who are this ill? It would focus on their health, not their illness. Our views about illness and death are seriously skewed. We as “providers” see these people as sick patients who need to come to us for treatment. But that’s not how they see themselves. Up until the day they die, or come close enough to it that they can’t help calling 911, many of them get by quite well. They adapt to conditions that many healthy people, including doctors, imagine as intolerable.
That amounts to projecting evil fantasies onto the seriously ill. It’s irrational, but it’s universal. It’s the root of the fierce resistance that many people, especially doctors, throw up against talking about advance directives, hospice or palliative care. This is sadly ironic in view of modern medicine’s devotion to objective evidence.
We need to wake up and see seriously ill people as they see themselves. We need to ask them who they are and what they want. Not what they want or don’t want in their health care. That comes later. First we need to ask them what they want in their lives, and then support them in their drive to get it. First help them pinpoint their own personal goals, which can be as simple as “I just want to walk to the dinner table with my family.” Then the medical decisions follow naturally from the personal ones.
We need to support people’s natural drives and stop resenting them as a nuisance. People with advanced illness are like everyone else. They don’t like being a burden and they crave independence. This drives their doctors (and their families) crazy because it leads to risky living situations. We need to provide them real care that preserves their independence and reduces their risk. Then everybody wins, including Medicare. Wasteful, costly and frankly cruel hospitalizations are avoided – not the necessary ones, just the unwanted ones.
We know how to provide real healthcare to this population. It’s called advanced care, and it includes the best of current treatment and palliative care. We’ll talk about it more in future posts.