An expansion of “death literacy” is necessary to improve end-of-life care in the United States, according to Michael Connelly, former CEO of Mercy Health.
This is the subject of Connelly’s recent book, The Journey’s End: An Investigation of Death & Dying in America. Connelly argues that end-of-life care has become “over-medicalized” and that more patients would choose hospice and palliative care if they had a better understanding both of those services and the alternatives.
Hospice News spoke with Connelly about the importance of death literacy and how to pursue it.
What is death literacy?
The concept of death literacy comes from a Lancet Commission report in February 2022. They had a worldwide commission of experts on end-of-life care, and the conclusion of that commission was that the world has medicalized death — death used to be a family experience, and now it’s a medical experience.
They went so far as to say that the medical system has “hijacked” dying.
And so what exactly is death literacy? You can look at it from the individual point of view, and you can look at it from the physician point of view. From the individual point of view, it is really understanding how health care thinks and how it operates. So the first thing to know is that death is considered to be a “failure.”
When you’re talking to a doctor, and you’re saying, “Well, is there anything we can do for X, Y or Z?” Then the doctor is going to find something to do for those things. They aren’t going to talk about the fact that it’s not going to work or that it’s highly unlikely to work. They want to try everything that they were trained to possibly do. But as you age and you become more frail, treatment becomes less effective.
Can you expound on the concept of hijacking death?
A phrase people are using now is the medical conveyor belt. This is just specialists looking at a problem and trying to solve it. But the fact is that the solution is often more painful than the illness, and the cure just doesn’t happen. But because people don’t want to accept that they’re dying.
Practice encourages doctors to do everything. And they have a lot of times where family members come at them if they don’t do everything. Often in families you always have one member that wants to do every possible thing, but they don’t always understand what that means. It’s going into an intensive care unit and getting feeding tubes and ventilators and all this stuff that isn’t going to change anything. It’s just postponing it.
It’s important to understand that the payment system is not paying the doctors to talk to you. You are not going to get an explanation of all this stuff. And everybody’s afraid to die, including patients, families and doctors, so nobody wants to talk about it. There’s a lot of psychological research about the reasons for that fear of death that I cover in my book.
The remedy to this is really education and reflection. The lowest utilizers of health care at the end of life are doctors themselves, because they’re the most educated and they know this stuff won’t work. But when they’re the doctor for you, they have a different mindset and a different approach.
If people don’t know what you want, and you haven’t explained what you want, then you’re going to get everything. That’s the conveyor belt; that’s the death trap.
A dying person should not be in an ICU. Yet, more than half of ICUs are filled with dying people. All because of this problem of people not accepting death. Some people do want to fight to the very end, and that’s their right, but they’re often fighting a battle that they don’t understand. And if they understood the battle, they would make a different choice.
Advance directives are another issue. They often fail because they are too vague or too lawyer-driven. Nobody’s in charge of educating you about them. They really should be part of a doctor visit, part of the medical record. All that should be done by a health care professional, not a lawyer.
What are some of the other challenges around death literacy?
The problem is that most physicians don’t understand hospice, and, frankly, some of them don’t want to understand hospice.
I recently asked one oncologist what he thinks about palliative care, and he said, “I sort of look at my role with the patient is to present the glass half full, meaning treatment. And the role of the palliative care doctor is to present the glass half empty, meaning it won’t work. I prefer to give them hope and say the glass is half full.”
Then I said, “Yeah, but it doesn’t work.” He just sort of rolled his eyes and said that isn’t what he’s trained to do. That is how he thinks about it.
A lot of doctors don’t understand palliative care at all and see it as a conflict, an interference with their treatment. I mean, when anybody has a terminal diagnosis, the very first referral they should get should be to palliative care.
Most people don’t understand this, and that’s how the system works. There is no role clarity with physicians and who calls the consult for palliative care.
Do you think that there’s an element of shame involved in accepting that inevitability and entering hospice? You hear phrases like “giving up,” for example, that have some negative connotations.
People are considered courageous in our society when they want to fight death to the end. But for most people it’s a futile fight, and they don’t understand that. The people that choose not to fight are often the real heroes. And yet we shame them. We make them feel they’re bad in our society, because they aren’t fighting. That’s not the American way. That is a cultural element of death literacy, understanding the absurdity of that position.
I recall from that Lancet report, they used the term “social determinants of death.” How would you define that term?
I think that that really goes to a patient’s level of frailty. People don’t want to identify the social determinants of death, because it requires giving up hope. And that’s why I say it’s like the lottery. You can call it hope, but it isn’t a very good hope. This is the same situation.
We know patients in ICUs are dying and won’t leave. Those patients are socially determined to be dying, but they’re still in ICU, because no one wants to say “no more.”
And so what should we do? What should our doctors do? Where are there possible solutions?
The first step in the process is to change the payment system, the reimbursement system for primary care doctors and for palliative care and hospice. Everybody should have concierge medicine. And, actually, if everybody had concierge medicine, we would save money. Really, overall from an aggregate point of view, primary care saves money, if people had good access to a primary care doctor and could talk to them whenever they need to.
It’s a fairly low-risk proposition, because we have driven primary care down to being only 4.5% of health care spending. As a comparison, we spend 6% of all health care spending on dialysis. We have to change how we pay for primary care.
The second fix is to make end-of-life conversations, advanced directives, a responsibility of primary care. Anybody over 65 should probably have an annual conversation about what their preferences are and a discussion of what their health statuses are, and go through the social determinants of death. There are algorithms that are not totally accurate, but they’re helpful.
The third recommendation would be to make it a requirement that you can’t get Medicare without an advanced directive.
We should also have video education. Videos have been found to be the most effective way to educate people about these issues. It would educate people about what they really want, what it is like to be an ICU, what it is like to be in hospice, and this is all based on research.
Those are some of the main recommendations on how we could do this, and all these things are possible. But you have to do them for all payers. People think of Medicare as an insurance product. It’s actually six different insurance products, all paid differently, all offering different levels of coverage and actually competing with each other.
That’s what makes Medicare Advantage more attractive, because it does kind of collapse them into one place.