If you haven't already, go read Atul Gawande's New Yorker article "Letting Go." As a surgeon, Gawande knows how doctors tend to death with terminally ill patients, both because of their training and their ordinary human tendencies. As a writer, he knows how to weave together personal stories and explanations into a seamless portrait of our medical system's dysfunctional approach to death. Here's one of his snapshots:
Recently, while seeing a patient in an intensive-care unit at my hospital, I stopped to talk with the critical-care physician on duty, someone I'd known since college. "I'm running a warehouse for the dying," she said bleakly. Out of the ten patients in her unit, she said, only two were likely to leave the hospital for any length of time. More typical was an almost eighty-year-old woman at the end of her life, with irreversible congestive heart failure, who was in the I.C.U. for the second time in three weeks, drugged to oblivion and tubed in most natural orifices and a few artificial ones. Or the seventy-year-old with a cancer that had metastasized to her lungs and bone, and a fungal pneumonia that arises only in the final phase of the illness. She had chosen to forgo treatment, but her oncologist pushed her to change her mind, and she was put on a ventilator and antibiotics. Another woman, in her eighties, with end-stage respiratory and kidney failure, had been in the unit for two weeks. Her husband had died after a long illness, with a feeding tube and a tracheotomy, and she had mentioned that she didn't want to die that way. But her children couldn't let her go, and asked to proceed with the placement of various devices: a permanent tracheotomy, a feeding tube, and a dialysis catheter. So now she just lay there tethered to her pumps, drifting in and out of consciousness.
Gawande devotes much of the article to the alternative to this kind of drawn-out suffering. He follows hospice nurse Sarah Creed on her rounds, and is initially surprised to find Creed coaching Lee Cox, a patient with congestive heart failure and pulmonary fibrosis, on steps that will prolong her life:
Outside, I confessed that I was confused by what Creed was doing. A lot of it seemed to be about extending Cox's life. Wasn't the goal of hospice to let nature take its course?
"That's not the goal," Creed said. The difference between standard medical care and hospice is not the difference between treating and doing nothing, she explained. The difference was in your priorities. In ordinary medicine, the goal is to extend life. We'll sacrifice the quality of your existence now--by performing surgery, providing chemotherapy, putting you in intensive care--for the chance of gaining time later. Hospice deploys nurses, doctors, and social workers to help people with a fatal illness have the fullest possible lives right now. That means focussing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as possible, or getting out with family once in a while. Hospice and palliative-care specialists aren't much concerned about whether that makes people's lives longer or shorter.
The solution isn't as simple as providing palliative care to all patients with terminal illnesses, though that would probably help. Part of the problem is that it's hard for patients, their families, and doctors to talk about dying. Gawande notes that in a distribution of survival times following diagnosis of an incurable disease, most patients may live less than a year, but there can be "long tail" that includes people who survived for several years. We all want to focus on the possibility that we (or our loved ones, or our patients) will be the fortunate outliers - but if we focus exclusively on that slim chance, it can cause a lot of pain:
There is almost always a long tail of possibility, however thin. What's wrong with looking for it? Nothing, it seems to me, unless it means we have failed to prepare for the outcome that's vastly more probable. The trouble is that we've built our medical system and culture around the long tail. We've created a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets--and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win. Hope is not a plan, but hope is our plan.
There was, actually, a plan to give people an option besides hope alone. When America's Affordable Health Choices Act of 2009 (HR 2300) was introduced in the House last year, it included a provision that would have allowed Medicare recipients to get advance care counseling from healthcare practitioners - if they wanted such a service, it would be covered by Medicare (though not more than once within five years). Opponents of the healthcare legislation distorted this into the infamous "death panel" lie, and the provision didn't survive. Gawande gives this a parenthetical reference, but I think it's worth highlighting.
The article mentions some programs that have managed to reduce ER and ICU use and improve patient satisfaction by promoting palliative care or advance care planning. I'm hopeful that at least some parts of our fractured system will eventually decide to save money by putting more resources into end-of-life care that focuses on quality of life rather than just quantity. But, between this article and Katy Butler's New York Times piece about her father's pacemaker, I'm also realizing that I should have some of these difficult conversations with my family members, so that when the time comes we can tell each other's doctors about what we want from our last days.
People need to think about end of life issues before the issue becomes a problem and make their desires known. Do a health care power of attorney and an advanced directive. Tell the person holding your power of attorney your wishes in a written signed statement as well.
Your conclusion is right, and as the Shaivo case it applies almost at the point one reaches adulthood, as auto accidents and the like can happen at any point.
Thank you for your mention of my New York Times magazine essay, "What Broke My Father's Heart: How a Pacemaker Wrecked Our Family," about how too much medical care made my father suffer in his final years.
A doctor at a major teaching hospital recently told me that family members frequently countermand advanced directives. She suggested you involve all relevant family members ahead of time and make sure that they can accept your plans. Otherwise, you run the risk that your semi-estranged, perhaps guilty-feeling child or sibling will fly in at the last moment and insist everything be done.
I see a crying need for new professions: medical family therapists who facilitate family meetings around advanced directives; "death doulas" who guide us through dying; medical advocates to beat doctors off with sticks when they promote futile, torturous and dangerous shunts, stents, radiation, surgery, chemo, etc. for people with fatal cancers, heart problems, etc. who are days from dying. The field is ripe for all the under-employed psychotherapists, if only the reimbursement and training issues could be worked out.
Thanks so much for commenting, Katy!
I didn't even think about other family members making it hard to enforce an advance directive - but of course the Terry Schiavo case showed that a spouse and a parent can have a very different idea about the right course to take.
The "death doula" is a great way to describe what's needed. Although, I fear that it'll be an uphill struggle, just like it is with midwives, who keep getting pushed to the fringes even midwifery care involving low-risk women has been found to have lower costs and equal or better outcomes.
None of what Gawande says in his story surprised me. Why? I spent three years as a hospice nurse.
I was the admissions nurse (I joked I was the angel of death), the person who explained what hospice was, what we could do for the patient and family and how having us in there could make things better, not hasten death. Those visits took hours - sometimes up to 4 - and required me listening more than talking. They were pretty draining. I did two admissions a day.
In my rough estimate, about 15 percent of the time, patients had no idea why I was there, their doctor hadn't had a conversation with them about terminality or about what to expect. Often patients felt abandoned by those doctors, not because the docs stopped treating them, but because they wouldn't/ couldn't talk about death with them. While Gawande glanced over the death panel fracas last year (I won't go there either to preserve my blood pressure, which I can feel climbing just thinking about it), he did talk more fully about the fact that docs don't feel comfortable with these conversations. I appreciated that piece of honesty - most docs I've talked to aren't as honest about themselves.
I quickly lost count of the number of times a patient would grab my sleeve and thank me for 1) listening to their story, then 2) thank me for telling them what they knew intuitively and then, 3) thank me for making it possible for them to leave life with dignity. The relief was often palpable (once you got past all the other emotions).
But all that talking and listening, all the stuff that Katy Butler suggests... these are things nurses are trained to do! However, we're not paid to do it (nor or docs), nor are nurses given the authority (let me tell you, you'd get chewed out if you told Dr X's patient what was actually going on - so nurses often keep mum). So, they don't (or else they do it informally, looking over their shoulders the whole time).
But because nurses are cheaper hourly, it did fall to hospice nurses in the end.
Why have nurses not been part of the conversation? We'd make a great part of the solution around this. How about giving nurses back some of their role as patient advocates?
Thank you for commenting, Rose! I have so much admiration for the work hospice nurses do, and wish it were better appreciated.
My mom was a hospital nurse in the 70s and often talks about how different it is now - nurses are so overworked, they don't have time to do all of the things she was used to doing, which included talking to patients about things like pain levels. I'd love to see nurses getting back more of the patient advocacy. As always, money is a huge part of the conversation, but as the hospice evidence shows, doing what's best for the patient can often save money in the long run.
Whatever be the treatment adopted in the last stages of life, the bottom line is death is unavoidable and it will happen when it has to. Getting ill and suffering for most are the late symptoms of a person approaching towards death.