When it’s time to die

A recent study of critical-care physicians at one Southern California hospital system found that more than 1 in 10 patients receiving treatment in their hospitals’ intensive care units were receiving treatments that would not benefit the patient in a meaningful way.  These treatments usually would keep a patient alive, albeit briefly for most, but not in a fashion befitting a human. Many of these patients were comatose with no chance of improving, others could never survive outside of an intensive care unit, but medical technology with tubes and drips and endless effort could keep them precariously balanced between life and death in a room full of machines.  The physicians surveyed in this study, many deeply wounded by the experience, indicated that they should not be providing these critical-care treatments. But they were compelled to do so by families who could not let go, families who were willing to preserve life for an extra day or several despite the state of their loved one, the suffering and the cost.

In the recent parsha V’zot ha-Brakhah, we read about the farewell blessing of Moses to the Israelites. At 120 years of age, Moses views the land that God promised to Abraham and his descendents. The Israelites will proceed to inhabit this land of milk and honey, but Moses will not. Moses must die in the land of Moab just short of leading his people into the promised land. Moses died “al pi Adonai,” meaning that Moses died “at the command of the Lord.”

The rabbis examined why Moses required the Lord’s command to die.  In the words of Elie Wiesel, retelling the rabbis’ analysis, “When Moses learned that his hour had come, he refused to accept it.  He wanted to go on living — though he was old and tired of wandering and fighting and being constantly tormented by this unhappy and flighty people he was leading across the desert.” According to the rabbis, Moses then haggled with God to continue to live, composing prayers, putting on sack cloth, calling on others for support and arguing “Don’t you trust me? … Have I not proven my worth?”  God would not back down.  Wiesel notes that after being advised by an angel to accept God’s decree, Moses should have graciously heeded the sage advice. But Moses would not and he began to bargain according to Wiesel:

“He went on refusing to die, pleading, crying for another day, another hour, as would any common mortal. … So great was his despair that he declared himself ready to renounce his human condition in exchange for a few more days of life: ‘Master of the Universe,’ he implored, ‘let me live like an animal who feeds on grass, who drinks spring water and is content to watch the days come and go.’  God refused.  Man is not an animal; he must live as a human or not at all.”  

The rabbis understood humans’ unwillingness to give up life. But they also understood that all humans must die. The struggle to survive is innate in each of us, yet we need to learn that this strong impulse must accede to a greater force. The rabbis recognized that humans would be willing to trade one’s most precious attribute, humanity, to prolong life, if even for a brief time. They projected that even Moses, the powerful and great leader of the Israelites, would be willing to give up cognizance of the nature of the world, recognizing others and being part of the human race just to eke out another day.

The rabbis never could have imagined this battle playing itself out daily in intensive care units around the globe, as the study shows. Man, imbued with the divine spirit, has developed medical advancements that rescue those with failing hearts, lungs, bowels and livers. People who have experienced “sudden death” are hurriedly hooked up to blood-pumping, oxygenating, continuously detoxifying, remarkable machines by amazing clinicians. Some of these people miraculously walk out of the hospital to continue a renewed life.  But for many, these ventilators, artificial hearts and kidney machines cannot restore humanity. Instead, these machines and feeding tubes and medications yield broken bodies that cannot interact, cannot swallow or taste, cannot recognize loved ones. Many suffer while being maintained alive.

The rabbis, nearly two millennia ago, when herbs and leeches constituted the best medical care had to offer, recognized that man was not served by succumbing to the basic instinct to preserve life at any cost. We can learn today that it is humanity we must strive to preserve at all times. And that there is sometimes a need to say, “No, it is time to die.”

Dr. Neil S. Wenger is professor of medicine in the Division of General Internal Medicine at UCLA and a consulting researcher at RAND. He is director of the UCLA Healthcare Ethics Center and is chair of the Ethics Committee at the UCLA Medical Center.

Religion rarely part of ICU conversation

In less than 20 percent of family meetings in the intensive care unit do doctors and other health care providers discuss religion or spirituality a new study finds.

For many patients and families, religion and spirituality are important near the end of life, and understanding these beliefs may be “important to delivering care that is respectful of the patient as an individual,” said senior author Dr. Douglas B. White of the University of Pittsburgh School of Medicine, in email to Reuters Health.

Researchers used audio recordings to analyze 249 meetings between health care professionals and an ICU patient’s surrogate decision maker at six medical centers between 2009 and 2012.

Three-quarters of the decision makers rated religion or spirituality as fairly or very important in their lives.

Religion or spirituality came up in 40 of the 249 conversations. More than half of the time, the surrogate decision maker, rather than the doctor, brought up the subject, the authors reported in JAMA Internal Medicine.

Surrogates most often mentioned their religious beliefs, practices or community, or that the doctor is a healing instrument of god, or that the end of life will be a new beginning for the patient.

Doctors frequently redirected these conversations to medical considerations, referred surrogates to other hospital providers or expressed empathy, but very rarely asked further questions about the patient’s religion or opened up about their own religious beliefs.

“Regardless of whether the patient has decision making capacity, clinicians should try to determine whether patients’ religious and spiritual beliefs may affect the kind of medical care that is respectful of what is important to the patient as a person,” White said. “Separately, many family members of critically ill patients find solace in their religious or spiritual beliefs and it may be helpful for clinicians to understand this to better support them.”

Doctors seem not to address these concerns even when surrogate decision makers raise them, he said.

“In my view, it is less important that doctors ask in a standardized way, and more important that they have a basic comfort talking with patients and families about these issues and are able to adapt to the needs of the individual patient and family,” he said.

When a patient brings up a spiritual concern, their doctors should start by simply asking questions and listening carefully, White said.

Whether or not the doctor’s religious views are discussed will depend on the situation, and there is no right or wrong answer, he said.

“If doctors start to attend more carefully to religious and spiritual concerns of patients and surrogates, I suspect they may get into very human conversations in which at times it will be appropriate to frankly discuss their own views,” White said. “As a starting point, clinicians should focus on developing skills to understand the families’ religious or spiritual concerns.”

It is unclear if health care providers will develop these skills, as Dr. Tracy A. Balboni of the Dana-Farber Cancer Institute, Boston, and coauthors write in an accompanying editorial.

“Our patients and families who face serious illness typically find themselves in spiritual isolation in the medical setting; their medical caregivers do not hear the spiritual reverberations of illness on their well-being and medical decisions,” they write. “The question remains whether we who care for dying persons and their families will learn how to be present and listen.”

My Mother’s Mostly Beautiful Heart

“Overall, she has a mostly beautiful heart” is what the cardiologist, my brother’s friend, says as we quietly stare at the beating organ on the computer screen. We’re waiting for other images, the not-so-beautiful parts, from the lab after her emergency angioplasty.

“Her beautiful heart,” my father repeats, as though the doctor had answered the enigma he was pondering.

He leans against the wall, massaging his head: “That’s why I married her. That’s what I saw from the first.”

My mother always tells their love story as a fairy-tale: He was gorgeous but into her petite, black-haired, green-eyed friend. Eventually though, my mother sparked his interest. They talked all night. And he kissed her. And her toes lit up and the bells went off. That was it. They were married in six weeks, 56 years ago. I wonder if that’s what my father is remembering. How one night, one kiss, became life.

A few minutes later the slides upload. In one, the artery’s a thread in two places, in the other, it looks normal. He says it all fast and I only hear parts.

“Ninety percent blockage … the stent worked … no clots for now.”

“Tick. Tick. Tick,” my brother says slowly, pointing to the breeches.

He’s in civilian clothes, a green Nike jacket, not his usual white one when he walks these halls.

“Bad situation, blessed timing,” I say quickly.

My father blinks behind his giant glasses. The lenses magnify the glimpses of primal fear I see, but most would miss. At 80, he’s still handsome, one of those stoic, solid-as-a-rock guys.

He’s half of AlandFlorence: one word.

He being here and she being there makes him feel out of control, isolates him. I walk over and stand close. He’s not used to being his own name in public. He’s witnessed this plenty though: Their gang of friends is dwindling quickly, especially this year. They’re the lone holdouts where one or the other isn’t dead or incapacitated — but they’ve closed ranks, conspiring not to let us all know how hard it is, or what’s going on.

“After the last funeral,” my mother mentioned matter-of-factly just the other day, “the book club had to merge with the film club and we alternate months.”

We just came from the waiting room. I brought hand-carved turkey sandwiches, chicken soup and pineapple. It’s a family trait, I think, this quixotic, quasi-mystical belief that the marriage of will and wholesome food can in some way beat back the forces of time, illness, and human loss.

My father says he isn’t hungry.

“You have to eat,” I say, handing him half like an order. He eats slowly, not like him. He is shaky.

Now it’s almost midnight. She’s getting unhooked and we’ll make a pilgrimage with her gurney across the low-lit buildings to the ICU.

My mother is groggy, but OK. I stay and my brother takes my father home.

In the morning, I bring my mother a bagel and egg white omelet and she’s ravenous. A good sign.

I tell her something about a rabbi I study with, and all that I’ve learned.

She asks if I have talked to him about her: “I was wondering because, you know, we’ve had some very difficult periods.”

She wants to hear that the rabbi said she’s right and I’m wrong. It doesn’t quite matter about what, just in principle. But there’s something below that. I think she wants me to say what’s on my mind even if she doesn’t like it, in case something bad happens.

I keep my response general and light. I say that she’s done great with her life. As far as those things that went south between us, none of that matters, I tell her. I will do my best to understand her wants, and to protect her if she can’t protect herself.

Although edited for complexity, this is the truth.

I get home and my boyfriend, Stuart, checks in. I tell him I just came from the hospital, say that this is the thing about love — mortality, the sense that love is filled with 1,000 risks of loss.

But he’s on his way to work. There’s road noise and wild winds on the 101, and it’s hard to hear. He doesn’t do well with deep conversations on the fly.

He responds with his marathon runner’s optimism: “She’s strong, looks 65 — of course she’ll pull through.” Then he tells me: “Just so you know, I bought two bottles of the Coppola your brother likes for Friday night.”

When we hang up, I think about Stuart. The one I get to love. And I know even though he’s smart and handsome and other things I’m drawn to, it’s his beautiful heart — that’s why I’ve chosen him.

By noon, my father calls, sounds like himself again: The enzymes are great, there’s no actual damage to the heart muscles, they’ve unhooked her.

“Mommy took a walk,” he says, the relief palpable.

Later that night in the ICU, the monitors are blinking everywhere. She’s trying to nap but can’t.

I swore to myself that I wouldn’t reveal a recent conversation with Stuart, but I have a deep-down fear I might not get a chance to — that she’ll die without knowing that Stuart loves me, enough to tell his brother that I’m “The One.”

I’ve almost become superstitious that she’s been waiting all this time for me to find someone to love again, and now that I have, she’s going to vanish suddenly.

So I say it fast: “Stuart talked about engagement rings. Don’t say anything to anyone, we’re not engaged yet. Period.”

“Please God” she says, waving her hand to scatter the air and ward off the evil eye.

My father is snoring in the chair, exhausted from everything.

“He is such a good husband,” she says, “the things he has done for me this year.” From the wince in her face, I know they’re not pretty things.

I’m remembering a conversation I had with my parents at a restaurant some time back.

We were talking about soul mates. It was before Stuart. I was dating and it was weird and hard and dispiriting. I couldn’t seem to figure out how love or even dating worked.

“Maybe it’s not so good to be with your soul mate,” I said. “Maybe it’s better to have more of an earthy, functional connection. Like you and daddy. Maybe it’s the secret.”

My mother looked up: “I always thought of your father as my soul mate.”

The words surprised me. I did not think of my mother as soulful or deep. I didn’t think my parents suited to each other on that level.

“I always thought you two were more pragmatic than that — a function of pure will mixed with passion.”

“Yes, I know,” she said, going back to her hamburger, “that’s what you thought.”