I watched this 60 Minutes segment last night on “The Cost of Dying” with extraordinarily mixed emotions. From anger to fear to horror, I have rarely had such an emotional reaction to an issue.
But once past the knee jerk outrage, I began to assess the moral and ethical dimensions of the problem and am extremely unsettled in where these questions lead me.
Some background on the segment:
Last year, Medicare paid $50 billion just for doctor and hospital bills during the last two months of patients’ lives - that’s more than the budget of the Department of Homeland Security or the Department of Education.
And it has been estimated that 20 to 30 percent of these medical expenditures may have had no meaningful impact. Most of the bills are paid for by the federal government with few or no questions asked.
You might think this would be an obvious thing for Congress and the president to address as they try to reform health care. But what used to be a bipartisan issue has become a politically explosive one - a perfect example of the costs that threaten to bankrupt the country and how hard it’s going to be to rein them in. Dr. Byock leads a team that treats and counsels patients with advanced illnesses.
He says modern medicine has become so good at keeping the terminally ill alive by treating the complications of underlying disease that the inevitable process of dying has become much harder and is often prolonged unnecessarily.
“Families cannot imagine there could be anything worse than their loved one dying. But in fact, there are things worse. Most generally, it’s having someone you love die badly,” Byock said.
Asked what he means by “die badly,” Byock told Kroft, “Dying suffering. Dying connected to machines. I mean, denial of death at some point becomes a delusion, and we start acting in ways that make no sense whatsoever. And I think that’s collectively what we’re doing.”
Now for the moral questions raised by the piece; How much do we, as a society, value individual life? At what point does what’s good for the many outweigh what’s good for the one? Should anyone - insurance companies, government, or a “death panel” - have the right to tell a patient and their family when it is time to let go of life and allow the natural progression of their disease to kill them?
All of these questions and more like it are asked with the costs associated with end of life treatment always in the background. And it isn’t just the costs. It is the tremendous amount of health care resources devoted to people who have no hope of recovery but make choices like this patient:
Charlie Haggart is 68 years old and suffering from liver and kidney failure. He wants a double transplant, which would cost about $450,000. But doctors have told him he’s currently too weak to be a candidate for the procedure.
At a meeting with Haggart’s family and his doctors, Dr. Byock raised the awkward question of what should be done if he got worse and his heart or lungs were to give out.
He said that all of the available data showed that CPR very rarely works on someone in Haggart’s condition, and that it could lead to a drawn out death in the ICU.
“Either way you decide, we will honor your choice, and that’s the truth,” Byock reassured Haggart. “Should we do CPR if your heart were to suddenly stop?”
“Yes,” he replied.
“You’d be okay with being in the ICU again?” Byock asked.
“Yes,” Haggart said.
“I know it’s an awkward conversation,” Byock said.
“It beats second place,” Haggart joked, laughing.
Should someone make the decision to resuscitate this gentleman for him? Who?
This is what end of life caregivers are asking these days. And the solution, in an echo of Sarah Palin’s “death panels,” may be hard and fast rules on what kind of care the terminally ill can demand of the system:
By law, Medicare cannot reject any treatment based upon cost. It will pay $55,000 for patients with advanced breast cancer to receive the chemotherapy drug Avastin, even though it extends life only an average of a month and a half; it will pay $40,000 for a 93-year-old man with terminal cancer to get a surgically implanted defibrillator if he happens to have heart problems too.
“I think you cannot make these decisions on a case-by-case basis,” Byock said. “It would be much easier for us to say ‘We simply do not put defibrillators into people in this condition.’ Meaning your age, your functional status, the ability to make full benefit of the defibrillator. Now that’s going to outrage a lot of people.”
“But you think that should happen?” Kroft asked.
“I think at some point it has to happen,” Byock said.
Is Byock a ghoul? Or is he talking sense? This is a compassionate conflicted man if you watch the segment. The chasm he has opened beneath our feet is both a moral and practical one and the tightrope he is asking us to walk is very thin indeed. If we decide to take these circumstances and apply universal guidelines for the treatment of the dying, won’t individuals “slip through the cracks” and be condemned to die who might otherwise outlive a doctor’s expectations with treatment? How many people who are given 2 months, three months, six months to live end up amazing their physician by surviving for years?
And then there’s the question of resources devoted to the dying. Here’s a Dartmouth researcher who did a detailed study on patients in the last two years of their lives:
The institute did a detailed analysis of Medicare records for patients in the last two years of their lives. Fisher says it is more efficient for doctors to manage patients who are seriously ill in a hospital situation, and there are other incentives that affect the cost and the care patients receive. Among them: the fact that most doctors get paid based on the number of patients that they see, and most hospitals get paid for the patients they admit.
“The way we set up the system right now, primary care physicians don’t have time to spend an hour with you, see how you respond, if they wanted to adjust your medication,” Fisher said. “So, the easiest thing for everybody up the stream is to admit you to the hospital. I think 30 percent of hospital stays in the United States are probably unnecessary given what our research looks like.”
“In medicine we have turned the laws of supply and demand upside down,” Elliot Fisher said. “Supply drives its own demand. If you’re running a hospital, you have to keep that hospital full of paying patients. In order to, you know, to meet your payroll. In order to pay off your bonds.”
And, of course, the fact that these costs are rising at a frightening pace is also driving the debate over end of life care:
“The perverse incentives that exist in our system are magnified at end of life,” David Walker, the government’s former top accountant told Kroft.
Walker used to be the head of the Government Accountability Office. He now heads the Peter G. Peterson Foundation, which is a strong advocate for reducing government debt. He says that 85 percent of the health care bills are paid by the government or private insurers, not by patients themselves. In fact most patients don’t even look at the bills.
“Does that make any sense to have, I mean, most things you buy, the customer has some impact,” Kroft remarked.
“We have a system where everybody wants as much as they can get, and they don’t understand the true cost of what they’re getting. The one thing that could bankrupt America is out of control health care costs. And if we don’t get them under control, that’s where we’re headed,” Walker said.
What all of this adds up to is that America is headed for the most difficult ethical and moral dilemmas in its history - questions that go to the very heart of what our country stands for, how we see ourselves; questions that deal with our deeply held religious beliefs, and perhaps most uncomfortable of all, cultural questions about the nature of life and death.
In all of this, the individual, and choices they have been able to make in the past about how they wish to exit this world, may very well be taken from them for the “good of the many.”
(Note: I hasten to add that there is nothing in either the Senate or House bill that directly deals with these questions, although the Medicare Cost Control panel certainly has that potential.)
When a society is faced with a crisis that may lead to its dissolution, is it a higher moral choice to abandon individual ethics and morality to save it? Are we really facing this kind of moral conundrum or am I setting up a “false choice” where another solution is available but I am refusing to acknowledge it?
I would like to think I have fairly presented the questions asked in the 60 Minutes segment. My personal belief is that the issues raised are impossible to discuss at this point because of the debate over reform and the political ramifications of discussing end of life treatment that would necessarily play into the fear mongering that arises whenever “unplugging grandma” is mixed in.
Here’s Doctor Byock on that subject:
“Well, this is a version then of pulling Grandma off the machine?” Kroft asked.
“You know, I have to say, I think that’s offensive. I spend my life in the service of affirming life. I really do. To say we’re gonna pull Grandma off the machine by not offering her liver transplant or her fourth cardiac bypass surgery or something is really just scurrilous. And it’s certainly scurrilous when we have 46 million Americans who are uninsured,” Byock said.
One thing that can be done was removed from the House bill because of Palin’s fearmongering; family doctors being paid to sit down with their Medicare patients to discuss living wills, end of life options, and educating their patients on the death process. The number of people who are unaware of these simple, common sense options are staggering. The idea that this is somehow cruel or would lead to doctors recommending that patients simply allow themselves to die was idiotic when the argument was made and, if you watch this segment closely, even more idiotic now.
A word about “rationing” which is the 800 lb gorilla in the room that I have avoided because of the idea that many opponents of health care reform can’t face the fact that we are already rationing resources. What’s interesting - and gives a depth of understanding to the moral dilemma we face - is that according to the Dartmouth study, rationing would be unnecessary if we dealt with end of life issues:
After analyzing Medicare records for end-of-life treatment, Fisher is convinced that there is so much waste in the present system that if it were eliminated there would be no need to ration beneficial care to anyone.
Multiple studies have concluded that most patients and their families are not even familiar with end-of-life options and things like living wills, home hospice and pain management.
“The real problem is that many of the patients that are being treated aggressively, if you ask them, they would prefer less aggressive care. They would prefer to be cared for at home. They’d prefer to go to hospice. If they were given a choice. But we don’t adequately give them a choice,” Fisher said.
“At some point, most doctors know that a patient’s not likely to get better,” Kroft remarked.
“Absolutely,” Fisher agreed. “Sometimes there’s a good conversation. Often there’s not. You know, patients are left alone to sort of figure it out themselves.”
I can’t stand people who approach these issues as if there is no real moral or ethical dilemma; that people should either be forced to die or that they should get any care they wish in order to hang on to life even after hope for recovery has expired. We are fast approaching a time when we will forced to make this choice and there is nothing easy or pat about it.
Those so certain of the moral ground beneath their feet are oblivious to the fact that they are really standing in quicksand. And their arrogant certainty about right and wrong is exposed as the sophistry it truly is.