Less Is More

So far I've stuck with stories about patients, but I wanted to write about a fascinating recent study that is all about the work of caring for those at the end of life.

Publishing last month in the Archives of Internal Medicine, researchers in Boston posed this question: would it make a difference -- financially or in terms of quality of life -- if cancer patients had a frank discussion with their doctors about their preferences for care at the end of life? Well, it makes a big difference. Patients who'd had the talk were less likely to be admitted to or die in an ICU in the final week of life. They were more likely to enroll in hospice early and more likely to receive hospice care in their homes -- which is what hospice is designed to do. They had less physical suffering and higher quality of life in the last week of life than cancer patients who hadn't had the conversation with their physicians.

And they were less expensive, too. Costs of medical care in the last week were around $1000 less for those who had spoken with their doctors about their preferences for comfort care instead of life extension regardless of the cost in suffering.

By the way, the two groups of patients -- those who talked, and those who didn't -- lived for the same amount of time.

So spending more money in the final week of a cancer patient's life doesn't lengthen it but does worsen its quality. Counter-intuitive? Not really, I think.

For everyone concerned about the high cost of health care, the study contains a remarkable projection. Of the cancer patients interviewed for the study, about 30% had talked about their end-of-life preferences with their physicians. Here's the researchers' amazing conclusion:

If the national proportion of individuals reporting EOL discussions was increased to 50%, our results suggest that we would expect a cost difference of $76, 466, 891 between individuals who had EOL discussions vs theose who had not based on the total number of US cancer deaths per year.

In other words, we could save over $76 million a year -- not to mention untold amounts of agony -- by the simple act of getting cancer patients and their doctors to talk with each other about the end of life. Just talk, and the result is better quality of life and reduced cost in the last week of life. Not every innovation in health care is complicated. Sometimes less is more.

Interesting Quote

I ran across an inspiring quote in a book called Narrative Medicine: Honoring the Stories of Illness by Rita Charon:

Our current health care system assumes that everyone lives forever, turning away from the realization that lives begin and end, on their own trajectories, but within the biological limits for the species. It is we health care professionals, as curators of the body, who should model the bravery to face the shadow of the end, the honesty to desist from false promises, and the humility to remind of of our limited portion on earth.

As I work each day with patients and families facing life-limiting illnesses, I hope I model bravery, honesty, and -- most of all -- humility. This is awe-inspiring, humbling work, and it is an honor and a privilege to accompany people on this phase of their life journey.

A Reminder About Confidentiality

A "tweet" from Dr. Christian Sinclair (ctsinclair on Twitter) reminds me to remind my readers of something: None of the patient names mentioned in this blog are real. In some cases I've also changed a biographical detail or two to further conceal someone's identity.  If you read a post and think you recognize yourself or your loved one, please understand that you are probably the only person in the world who'd be able to do so. And send me a comment so that I can respond to any concerns you might have about privacy.

I thank you and continue to hope that these stories bring wisdom and comfort to those who read them.

Up

There's an old line -- from Al Franken, I think -- that "denial ain't just a river in Egypt." Our death-denying culture makes it hard for any family to accept that a loved one is dying. Sometimes it's the dying person who has to show the family the way.

Rebecca was well into her nineties with terrible lungs. To survive, she required the use of a BiPAP (pronounced with a long "i") machine. "Bi-level positive airway pressure" is a way to move air in and out of the lungs without the patient having to exert much effort. It's a breathing machine without a tube in the patient's throat. But it's not so pleasant for anyone, much less an old woman who'd been sick for a long time. There's a tight-fighting mask over much of the face that can induce terrible claustrophobia.

Rebecca's children told me that she'd been wanting to die for a long time. "She wants to join our dad," they told me. The three adult kids had been resisting their mother's entreaties, but now they were convinced. I went to the bedside. Rebecca was lucid when I asked her what she wanted. She pointed a wizened figure at the ceiling and mouthed, "Up. With him."

I spent a couple of hours with the children that day and the next, going over their understanding of their mom's illness and answering questions about how we might manage the withdrawal of the BiPAP. They told me over and over again, "Mom's wanted this for a long time, and she finally persuaded us." By the time we were ready, Rebecca was barely arousable. We gave some simple medications -- for shortness of breath, for anxiety, for congestion -- and took the mask off. She barely stirred. The children and the nurse working with me felt she was completely comfortable. Forty-five minutes later, her shallow breathing stopped. Then there were tears, and hugs, and prayers.

Everyone deserves a gentle passing from this world. To get there sometimes requires everyone in the family to look up and see what's coming. With quiet determination and her index finger, Rebecca got her family to see past their sorrow. I'm pretty sure she went up.

Illegal

She was old, in the country illegally, and dying of AIDS.

When I met Anne-Marie, she'd already been in the hospital for several weeks. Her relatives back home in Latin America had rejected her because of her illness. Her children in the United States danced around the question of whether they'd take her in. Because she was undocumented, she had no access to Medicaid or any other public programs to fund her care. There have been published reports of hospitals loading sick illegal aliens into airplanes and flying them off to their home countries -- a form of medical deportation, if you will. We weren't going to do that; it's contrary to everything we in the hospice world believe in. So we enrolled her in hospice, ate the cost, and Anne-Marie stayed in her hospital bed.

She was barely arousable and was so thin that a concentration camp survivor would have looked positively obese by comparison. I don't think I've ever had an adult patient whose width from shoulder to shoulder was so small. She never seemed to have a visitor. One morning I discovered her silently grimacing. Pain medication had been ordered as needed, but how does an obtunded patient signal her need? We quickly placed her on a morphine drip at a low dose. Her face relaxed, there was no more grimacing, and she died in apparent comfort a few days later.

One shouldn't have to die alone or in pain. Did her legal status affect the way Anne-Marie was assessed and cared for? I hope the answer is no. Life's end is hard enough already.

The Perils of Arrogance

Not long ago our team received a referral from a local nursing home. Charles was in his late 70s and suffered from a variety of ailments, most prominently chronic kidney failure. He'd more or less stopped making urine a week before we were called. When we met Charles, he was semi-conscious and moaning. He appeared to have only a day or two to live. Every so often he would suddenly twitch, like a tic involving both arms and both legs.

This twitching is called myoclonus, and while it can be a normal event in actively dying people, it often means that the patient is getting too much morphine while having too little kidney function. One of morphine's breakdown products produces myoclonus, and the only way for that product to leave the body is via the urine. No urine? Worsening myoclonus. And in an odd twist of fate, high levels of morphine breakdown products can actually produce pain. This paradoxical event -- "opioid-induced hyperalgesia" is its mouthful of a name -- is often misinterpreted. Well-meaning staff see the patient thrashing around and looking uncomfortable, they give a morphine dose, the patient doesn't look any better, and they keep on dosing -- oblivious to the pain and suffering they are causing by giving morphine to a patient whose kidneys are shot.

We recognized Charles's problem immediately and asked the nursing home staff to stop giving him morphine around the clock. We proposed some other ways to manage pain. The staff politely -- well, not too politely -- blew us off. They kept giving Charles morphine, his myoclonus worsened, and they continued the drug. An hour before he died, Charles was actually arching his back off the bed while twitching all four extremities wildly. 

This is not what hospice people mean by a good death.

In a follow-up debriefing session attended by our entire team, we brought some articles from the medical literature that describe the causes and treatment of myoclonus induced by morphine. The nursing director looked at me and said, "While we understand your point of view, we see ourselves as advocates for the patient."

Hospice folks want to see their patients have their suffering relieved. It's difficult for us when a patient dies in pain despite our best efforts. It's even harder when our best efforts are thwarted by well-meaning people who simply don't know what to do. But it's worse when others stubbornly believe that they and they alone are right, no matter what the facts might say.

The only solution, it seems to me, is for end-of-life experts to continue their quest to educate the public and their health care colleagues about how to relieve the suffering of the dying. Yes, it's true that "ya can't win 'em all," but over time maybe we'll win some more. Charles died of kidney failure, but he died with unnecessary suffering -- caused, in turn, by an overdose of arrogance.

I'm Back

It's been a long time since I've posted anything on this blog. I suppose that many bloggers quickly tire of the habit. Somewhere I read that 98% or more of blogs and blog postings never attract a single comment, suggesting that the writers are largely writing to themselves. That's not necessarily bad, by the way. Catharsis can be therapeutic.

In the meanwhile, I've decided to return to telling stories of the patients and families with whom I've been privileged to share their final days, weeks, and months. Maybe I need the catharsis.