It’s funny how people only start thinking about death when either a loved one has passed away, or they’re facing their own imminent mortality. But the time to talk and think about death is not at the end — but throughout your life.
Because unbeknownst to you, there is an entire profession aligned against you having a good death. And that is (nearly) the entire profession of doctors.
I was listening to “Fresh Air” on NPR yesterday with Terry Gross speaking to bioethicist Tia Powell about having a good death with dementia, among other topics. It made me think of my own dad’s recent death, and whether we provided him with a good death or not.
My dad died late last year. We tried our best to provide him with a good death, but it still wasn’t easy. What happens in Parkinson’s, along with dementias such as Alzheimer’s, is that the brain deteriorates. It stops functioning for other things, such as balance, which is so important for so many other activities. It also affects your muscles and we use muscles to swallow, so swallowing becomes extremely difficult.
So a lot of families face the decision about whether to use a feeding tube or not. Because if a person can’t swallow, they can’t take in new food and will eventually die due to that. It’s a decision we had to make for my dad, but for us it was an easy one since a feeding tube isn’t going to really help do anything for my dad’s quality of life — which had already deteriorated to the point where extending his life didn’t make much sense.
But for some families, a feeding tube seems to make sense because professionals — including nursing staff and doctors — recommend it. It makes their jobs easier, and they believe it helps to extend a person’s life. In most cases in dementia, however, and Parkinson’s, it probably isn’t doing much benefit at all:
The interesting thing is, over decades, we have gathered really incontrovertible evidence that a feeding tube in end-stage dementia certainly does not increase your quality of life, but it actually doesn’t even increase the duration of your life. So I think the GI doctors who put in feeding tubes in and the nursing homes that prefer them, frankly, because it takes less staff time to hang the nutrition from the feeding tube […] they’re not really actually looking at this in terms […] of what’s best for the patient.
At the end of life, do we really want to be responsible for simply prolonging a life defined by daily pain, a low quality of life, and health problems?
We Need to Stop Doctors From Being on Goal
Part of the problem is the way doctors are trained today. It is wrong and it needs to change.
One of the common issues an elderly person may face is heart arrhythmia — their heartbeat is abnormal. And what cardiologists do is work up a consult for the patient and come to the same conclusion — the patient needs a pacemaker. It will clear that arrhythmia right up.
But installing a pacemaker is surgery. And surgery on an elderly person can result in as many complications as the problem it’s trying to solve. It’s also incredibly hard to have your doctor turn off the pacemaker at the end of your life, when you’d like to go naturally — they simply don’t want to do it. It’s a big problem — and doctors are the cause and solution of it.
Powell hit the nail on the head with this observation:
GROSS: So why is it so hard to turn off a pacemaker — ethically hard, (laughter), to turn off a pacemaker in a patient who is actively dying of dementia?
POWELL: I think it’s a psychological issue. It is, in fact, technically unbelievably easy to turn off a pacemaker. You just sort of wave a little wand, in effect, a kind of magic wand, and it shuts down the batteries and the thing has stopped. And it doesn’t impair the natural functioning of your heart. […] It’s easy, technically, to do.
But I think doctors have this notion that they are goalies. I’m on goal, and if I’m a cardiologist, nobody gets a shot on cardiology. You know, you’re not going to die a cardiac death. And that makes me a good doctor.
It’s, however, an incredibly foolish notion. A person is not a heart. A person is a complex entity with lots of things going on. And if death is, you know, at the doorstep, I don’t know that the doctors get to take a vote and say, you know, which is the exit door.
It should be up to the person, to the extent possible, and it should include thinking about not what we can’t do, but what’s the benefit of that and what are the burdens of that? What should we do?
And I think this is a conversation that’s going on now in medicine, but it’s not as routine as it should be. Doctors are uncomfortable with it.
Doctors are incredibly uncomfortable with conversations about death. They believe, generally, that we should do all that’s medically possible for a person, even at the end of their life. But that makes little sense, given that they’re about to die within the next few months.
This is where hospice care comes in — and people generally wait too long to get their loved one into hospice care. Hospice care is staffed by nurses and doctors who actually do understand these difficult conversations and decisions, and err on the side of making the person comfortable in their final days or weeks of life. They take a 180 degree opposite approach of most doctors — and they are a lifesaver for both the person suffering and their families.
Let’s Stop Miserable Deaths
Too often in the U.S. and elsewhere, miserable deaths are the norm. We’ve allowed doctors to do all kinds of procedures on our loved one, because they recommended it. But they only recommended it because it’s encoded into their training and doctoring. That’s what doctors were trained to do. They feel a duty to do it — even if it’s not in the best overall interests of the patient’s health. A cardiologist has to protect the heart, no matter what else is going on. And Powell notes this is not a good thing:
I think for a lot of people, we go to great effort to provide them with miserable deaths. And I don’t think it’s the best use of our technology. And I’m not even talking about the money part of this, although it’s very expensive to provide those miserable deaths.
Let’s stop providing miserable deaths to our loved ones. Let’s not look to prolong life just because we can when a person is at the end of their life. Because what kind of life is it to be going in and out of hospitals, spending our final days with beeping machines while lying on a cold hospital bed, our sleep interrupted constantly by nurses and doctors?
For more information
Listen to the entire NPR interview: ‘Dementia Reimagined’ Asks: Can There Be Happiness For Those With Memory Loss?