On February 5, Lisa Krieger, a science and medicine writer for the Mercury News in San Jose, Ca, published a remarkably moving and insightful article about the protracted dying of her 88-year-old father. Suffering from advanced dementia he contracted septicemia, was admitted to the ICU of the Stanford Hospital, and then spent 10 days going miserably downhill. As Krieger put it, “The medical nightmare started, as they so often do, incrementally.”
While her father had made clear prior to his dementia that he wanted to die a “natural death,” what he got what he got was an unnatural “death by medicine,” as someone once put it. The total cost for the hospital stay alone was $323,000. Again and again Krieger had to make a decision about going on, as one crisis after another surfaced. With each new crisis, the doctors offered hope. There was, they said, “a decent chance we could turn it around.” They could not, and he finally died. But as the days moved along from one crisis after another, Krieger kept asking herself, Was it all worth it? “Should we have quit?” she wrote. And when?
I have come to think that the decisions about stopping life-sustaining treatments may have become harder, not easier, since the 1960s, when the reform movement was gaining momentum. Medicine has become increasingly skilled technologically in keeping the dying alive. Her father, Krieger noted, “thanks to modern medicine . . . lived decades longer than his father.” That same medicine gave him a miserable death. That is a dilemma of modern medicine we have yet to resolve.
I put some questions to Krieger, and here are her responses.
As you have reflected in the aftermath of your father’s death, what kind of advice might you now give to someone in a similar situation?
This is what I would have done differently: I would have asked for a road map. A plan. Even if it’s just a back-of-the-envelope flow chart. What are we doing, and why?
I would have asked earlier: “Where are we headed, with all this? What’s the view from 30,000 feet up? Let’s say he survives and makes it out these hospital doors. Then what?”
I wish someone had told me about the range of choices. Not just: “Do You Have a DNR? Treatment or not?” Rather: “We can do everything. Or we can do some things, but not others. Or we can do nothing, but keep him comfortable.” That conversation never happened.
I think it is possible to have a conversation about options in aggressive treatment and palliative care at the same time -- early on, maybe upon entering the ER, or even when there is the initial dementia diagnosis. Not when things go south in the ICU. Because then you keep waiting for the perfect time to stop. There is no perfect time.
If at some point you should have forcefully said to the physicians, “Stop -- no more,” how might we educate family members to learn how and when to say that?
I think people need to be told that stopping isn’t doing nothing. Stopping can be a gift. It’s a time to tell someone: “I love you and will always love you. Your memory – and what you’ve said and taught me – will live forever. I will tell my children, and they will tell their children.” You can’t say that if you’re busy fighting.
The hard part is getting the information you need to make that decision, so you can flick that emotional switch. I know doctors are busy. And their job is to diagnose and treat. They don’t want to offer a guess, or speculate, or peer into the future. But that’s what people desperately need, when the data-driven stuff isn’t helping.
I was so desperate for useful information. I buttonholed one ER doctor in a side hall. I found one ICU doc in the cafeteria. Fortunately, because I was living in dad’s ICU room, I could be part of the conversations when doctors were rounding. But I could tell that made them uneasy. I’ve got a biology degree and worked in hospitals before journalism, which helped a little. I really wanted to know where we were headed, some sort of prognosis.
This is what I needed to know: let’s just assume all this crazy treatment works – what does his future look like? Skilled nursing? What is long-term wound care like? How much pain and suffering will it entail? Will he be able to walk? What might his mental state be?
No one’s got a crystal ball, of course. But families need to know what they’re gunning for. So they can decide whether the end is worth the means.
Practically, how could that happen? In ER, I wish I had demanded some sort of ethics consult. (That’s admittedly a challenge: when someone’s crashing, there isn’t much time.) Maybe the ethicist would have given me the strength to say: “Even though we don’t have a precise diagnosis, this isn’t looking good. Maybe it’s OK to let him go, even without knowing everything.”
In the ICU, I could have used a neutral ombudsman to say something like: “Doctors will recommend a ventilator. This is why, and these are the implications.” Ditto for a feeding tube. Or: “Doctors will recommend surgery, and this is what that means for his future.”
I don’t expect doctors themselves to offer this interpretative stuff. They’re too busy saving lives. But families are clueless. Until we fix that, the default will always be to act.
I also think people might be more willing to quit if they didn’t fear guilt and second-guessing. There might be a cultural shift if more doctors simply said: “You did the right and merciful thing. It was hard, but you stepped up to the plate. For the rest of your life, you can be confident in the decision you made.”
A recent article noted that physicians do not want to die the way many of their patients do. Yet they will inspire hope with their patients even when they know better. How would you like physicians to talk with patients when it is clear families want hope -- -bluntly, delicately, diplomatically?
Again, just information. Repeated as often as necessary. Because when you’re in shock, you’re not really hearing.
Maybe a good conversation-starter is the odds. (“This is a very tough one – in medical experience, only about X % of patients survive. Those that do survive face these challenges.” Something like that.)
Then describe what continued treatment would entail: “We can treat, but we want you to understand what further treatment will entail. Example. Example.”
And what survival, in the remote chance it succeeds, would look like – from a quality of life perspective.
In word choice, there’s a way to shift the blame, and enable people to let go. Maybe saying, “Modern medicine is great, but it just isn’t good enough right now to fix this, no matter how hard we try. We’ve run out of good options. It’s just too tough a problem.” It takes it away from the right/wrong, try/quit, good/bad paradigm. It just means the tools weren’t up to the task. It’s like trying to dig a ditch with a pitchfork, and anyone will understand that.
Then describe what palliative care can provide – that it actually is doing something. That the loved one will not feel distress. That pain can be controlled. (I actually wonder how many people know what “palliative” means. It’s a pretty wonky term.)
And support the heck out of them. My readers said that doctors suddenly “abandoned ship” when they stop the rescue. They said they felt abandoned. And guilty. If we’re going to change the culture, we need to honor saying goodbye.
Your article drew a large number of responses and was given a special section in a later Sunday edition of your paper. What was the range of responses, and did many of them report experiences similar to yours?
The response was stunning. My voicemail filled up instantly. I’ve gotten about 200 emails so far; some are pages long. It was as if people just wanted permission to talk about dying. I opened the door.
No one criticized me for letting go. Some blamed me for not quitting sooner. Almost everyone supported the decision to stop – then wanted to share their own experiences.
What was amazing is that a lot of people could recount the precise details of long-ago deaths – and they’re still second-guessing themselves, decades later. There was a huge amount of guilt -- believing they caused a loved one to suffer because of their choices.
It happens because people don’t have enough information, and support, to trust their decision.
Daniel Callahan is cofounder and president emeritus of The Hastings Center. His most recent book is Taming the Beloved Beast: How Medical Technology Costs are Destroying our Health Care System.