If you have an elder who goes into the hospital, and you don’t think his or her problem has been solved yet, ask the medical team why it hasn’t been solved. Push to keep the patient in the hospital until the problem is solved. Don’t give up. Ask the hard questions.
Adult children and other family members often struggle to accept that an elder has dementia. Sometimes they believe that the elder is doing things 'on purpose'. Sharing experiences and listening to others' experiences can help understand the disease and the behaviors and realize that it is the 'disease' that is causing the behaviors.
Our system is geared toward doing more, more, more for patients, even if it’s clear that the end of life is near. Often, the report finds, this “more is better” approach runs contrary to what the patient wants. And, of course, it costs more. But is it the right thing to do?
There’s a lot of discussion on the Internet right now about an essay published in the current issue of The Atlantic Monthly. In the essay, 57-year-old writer Ezekiel J. Emmanuel makes a radical statement: He says that he wants to die at 75. He says that everyone, including him, will be better off if, as the headline to the article says, “nature takes its course swiftly and promptly.”
Emmanuel, director of the Clinical Bioethics Department at the U.S. National Institutes of Health and head of the Department of Medical Ethics & Health Policy at the University of Pennsylvania, makes a radical statement to get people talking, and boy, did he succeed at that: The piece has only been up for one week and there are already more than 3,000 comments, more than ten times what most websites consider a robust response.
It’s important to understand that Emmanuel isn’t suggesting that someone put a bullet in his brain on his 75th birthday. He’s saying that “living too long is also a loss.” He’s pointing out that too many of our elders spend years and years in a diminished state, in which they cannot work or fully enjoy life. He’s saying that he doesn’t want to be remembered as a shadow of his younger self. And he’s saying that, after 75, he will have lived a full life and he’s not going to go to any extreme measures to prolong his life after that time: no flu shots, no cancer screening, nada.
Of course, the writer’s family is not thrilled with his position. They think that when he turns 75—if he’s still healthy—he’ll move the deadline to 80, and then perhaps to 85.
He points out that “health care hasn’t so much slowed the aging process as it has slowed the dying process.”
As I do geriatric house calls around the Bay Area, I daily encounter patients who might be said to be dying in slow motion.
But here’s where I disagree with The Atlantic Monthly contributor: Being old and frail doesn’t mean that all enjoyment of life disappears. Even my patients with dementia still find joy in a sunny garden, or a chocolate chip cookie, or a hug from a family member. Even a patient who can’t speak may enjoy an afternoon by the seaside. Even a bed-bound patient may eat with gusto, or may enjoy simple card games, or even balloon volleyball.
It’s true that we Americans have for the last couple decades seized on the idea of “compressed morbidity.” Put simply, this is the idea that, thanks to modern medicine, we will all live longer, then suffer from a short, serious illness that’s not too miserable and then we die: longer life, then a short period of suffering and done.
I agree with The Atlantic Monthly author that this notion is what pushes doctors, patients and patients’ families to push for more, and ever more, treatments. I agree that, in many cases, these treatments prolong misery rather than adding years of vitality.
But just saying, “I’m giving up at 75” does not solve this problem.
It does start the debate, and we desperately need more discussion of these issues: What we need is an honest discussion of the limitations of medicine. We all need to think seriously about how we want our loved ones and ourselves to be cared for in later years. We need to write these wishes down. (See my recent post on advanced health care directives.) And for those who do experience a lengthy period of frailty and/or dementia, we need to create a system that recognizes the limitations of some of our elderly but that still tries to make their lives as full and as enjoyable as possible. We need to invest more in our care of the elderly, and in our training and payment of caregivers for the elderly. We need a holistic system that recognizes that even those with dementia can enjoy life. We need a payment system—Medicare, Medicaid, and Medi-gap insurance—that emphasize coordinated care, home health services, pain management and the minimum effective doses of drugs.
Let’s not think we can live forever. But, let’s not pull the plug at 75. Let’s make aging, and old age, as fulfilling as it can be. That’s what I, and my staff at ElderConsult, work to do every day.
No, I’m afraid that you can’t. As I stated in my previous post, we as a society cling to the idea that dementia is simply a gradual fading out, a progressive loss of memories and self-awareness. While that’s not exactly comforting, it’s less disturbing than many of the cases that I see every day:
Confused elders whose illness has made them so anxious that they live in a state of constant terror.
Elders whose disease has made them dangerously paranoid, unable to trust anyone, convinced that everyone is trying to hurt them or kill them.
Elders who hit and bite and kick anyone who comes close to them, making it next to impossible to care for them properly.
Elders whose dementia has erased all their inhibitions, making them hypersexual. These elders make inappropriate comments. They may grope passers-by. They may make advances on caregivers, family members, you name it.
Elders who run away, again and again. They slip out through doors. They climb out of windows. They scale fences. They may wander miles and miles, for hours, sometimes even days. Each moment that they are out on their own they are in danger: of being hit by a car, of being abused, of being robbed, of experiencing a health emergency because they aren’t taking their medications.
Elders whose dementia has changed their brains in such a way that they feel an overwhelming need to engage in repetitive behaviors: They may swing their arms. They may walk constantly. They may cry out endlessly, even though there’s nothing wrong. They may ask the same questions over and over and over, or make the same statements, driving everyone around them a bit crazy.
While sometimes these behaviors start gradually, it’s common for them to begin at the snap of a finger. I believe it’s likely that this results from the physiology of many kinds of dementia. Alzheimer’s seems to be related to the build up of “plaques” that interfere with the signals between neurons in the brain. But there’s also vascular dementia—which can result from many mini strokes in the brain. There’s alcoholic dementia, which results from the damage of drinking too much. There’s dementia that results from other conditions like Parkinson’s disease. Sometimes, one of these maladies will just take out an important bit of the brain tissue, and suddenly you’ve got a behavior problem.
It can happen overnight. I’ve had patients who were charming and kind one day, then nasty and mean the next. A patient might be calm, then suddenly become inconsolably terrified or anxious. A patient may have a fairly solid grasp on reality, then suddenly come to believe that a devoted caregiver is trying to steal everything in the house, or that the hospital has been taken over by Nazis, or aliens, or unseen monsters.
Why do I think this is so important to point out? Because I believe that we all need to recognize that dementia is a dynamic, ever changing, malady. As healthcare professionals, family members and caregivers, we need to constantly be alert to changes in a patient’s behavior. We need to be willing to adjust our approach to dementia patients accordingly. We need to think nimbly, changing both behavioral and medical strategies as needed.
Dementia care is not a “set it and forget it” enterprise. It’s a day-by-day challenge. We all need to remember that.
Elizabeth Landsverk, MD
Board Certified in Geriatrics, Internal and Palliative Care Medicines House calls throughout the San Francisco Bay Area