Every time you feel at the end of your rope. Every time you feel hurt, or out of patience, whisper this to yourself: “It’s not intentional, it’s brain damage.”
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.
Is it 'dementia' or is it medications? Some medications, even over-the-counter medications, can affect elders adversely, and sometimes create agitation, confusion and memory loss. What to watch out for?
As I do geriatric house calls around the San Francisco Bay Area, I am asked this question all the time. Like many areas in geriatrics, the expected life span of a patient is often quite difficult to pinpoint. This is a huge reason why there’s a growing trend for patients to be bounced from hospice care.
I’ve been a hospice medical director, and I’ve worked through the formulas, the algorithms, for admitting a patient to hospice, or not doing so. As medical professionals, we do our best. But I’ve seen it again and again:
• An elder may be seem to be at death’s door. Then, inexplicably, that elder will rally and hang on to life for months more.
• Or, conversely, a patient may be declining, and then suddenly take a turn for the worse and die.
It’s so difficult to assign probabilities to individual cases. For instance, a patient with advanced dementia has a 25 percent higher risk of dying from pneumonia than another elderly patient. But what if the patient in front of me never gets pneumonia?
I understand that hospice facilities need to be reserved for the patients that most need them. That’s why each hospice case needs to be recertified every 60 to 90 days. Sometimes, a patient may be clearly be on a long downslide toward death, and yet not be expected to die within the next six months (the standard required for admission to hospice).
I think the most important thing to remember—whether the timeline is 9 months or 9 days—is that we make sure we are protecting elderly patients from procedures or treatments that will be painful and distressing, but have little chance of prolonging life.
In my practice, this means:
• I do everything I can to keep my declining patients out of the emergency room and the hospital. Patients in what probably will be their last year of life seldom win any extra days by running off to the hospital. Many, many procedures can now be done at home: blood tests, x-rays even dental care. Staying in place is more reassuring for elders, especially those that suffer from dementia.
• I always weigh whether the distress of a procedure is outweighed by the benefit. For instance, if a declining elder falls and may have a fracture, I would generally recommend that an x-ray be done. When a patient is dying, our primary goal should be the patient’s comfort. No one should have to endure the pain of a broken bone, even someone who’s dying.
So these are the questions to ask:
- Will the procedure really prolong life?
- Could the procedure be done without moving the patient from their residence?
- Will the procedure maximize comfort and peace of mind?
Of course, other physicians may have different ways to judge whether hospice, or a particular procedure, is warranted. What do you think? Are there other things we physicians should take into account?
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.