Buy In, Opt Out

Why are some doctors so reluctant to stop aggressive treatments? An article last year in Critical Care Medicine helped explain why surgeons, at any rate, so often press on over the objections of patients and families. In talking with their surgical colleagues, Dr. Margaret Schwarze and her research team unearthed the idea of an implied contract between surgeons and patients. From the surgery perspective, it went like this: I'll take you to the operating room and will accept the risk that things might go wrong. You as the patient agree to stick it out, to work with me even if the post-operative ride is rough. Dr. Schwarze called it "surgical buy-in," and it was particularly threatened if patients chose too early (in their surgeons' opinion) to switch to comfort measures exclusively. Surgeons experienced feelings of "betrayal, unhappiness, disappointment, and even culpability" when patients or families, faced with post-op problems, said "enough." Saying "enough" and withdrawing life-sustaining treatments "were contradictory to the goals and values of surgery and surgical culture," according to the study.

Schwarze's key point, I think, is that the buy-in is implied and not necessarily said out loud. So when surgeons' goals of care clash with patients' goals of care, the potential for conflict is real.

I recently saw this dynamic play out in the case of Charles, an 80 year old man, a husband and father, who had lymphoma (a form of cancer) and who'd just completed a long hospitalization complicated by aspiration pneumonia. He'd been on a ventilator and was in the hospital for a month. A day after he left for a nursing home, he was back with another episode of aspiration. This time, though, one of his legs was very weak. An emergency evaluation showed that a vertebra in his mid-back had been almost completely destroyed -- possibly by the lymphoma, perhaps by an infection. Either way, his spinal cord was in peril and his ability to walk threatened. The neurosurgeons came in and worked through the night to stabilize Charles's spine. As is typical, Charles went from the OR to ICU on a ventilator. A few hours later, the family requested that the ventilator be removed and that Charles be permitted a natural death. This was not a decision that the neurosurgeons were happy with. It's just too early, they said. He might get off the ventilator in a day or two. They reluctantly allowed me to meet with Charles's family -- his wife, daughter, and son. 

We spent over an hour reviewing the events of the last couple of months. From the family's point of view, the patient has been severely ill for several weeks, starting with his recent hospitalization for aspiration pneumonia and respiratory failure. During that hospitalization he had a swallow study. The recommendation was for pureed and thickened liquids only. Post-hospitalization he went to a nursing home but returned rapidly to the hospital with another round of respiratory symptoms and the new problem with his spine. They agreed to surgery because, in the son's words, "they had to give him a chance." The post-op outlook was worse than they expected. Their understanding, based on what the surgeon told them afterwards, was that the spinal cord problem had probably been present for days at least, worsening the chance of independence. Also, they knew that their loved one was critically ill with pneumonia and septic shock.

His son Jacob recounted numerous discussions with his father about his father's fierce need for independence. He was walking a week ago. "He would never want to be paralyzed, unable to control his feces and urine, eating nothing but baby food." Jacob wept as he said that his father would never forgive him if he was, at the end of medical treatment, dependent. His daughter spoke at length about the need to relieve suffering and assure a natural dying. His wife voiced agreement with these views. I suggested that the treating physicians felt that he should receive conventional care for another day or so before reaching a determination about further steps, but the family felt this would only prolong his suffering. I called the neurosurgeon to talk things over. He was unhappy -- among other things, a death only hours from the end of surgery would reflect badly on him -- but resigned to letting the family have its way.

This is what I wrote in my consultation note: "In my judgment, this is not a hasty or ill-considered conclusion. While it is true that the patient is only hours post-op and that the final neurological outcome cannot yet be predicted, it is more likely than not that he would not be able to regain full ambulation. The family appears to be taking into account the overall clinical context -- an elderly man with cancer who has been gravely ill for most of the last few weeks and who repeatedly voiced his unwillingness to be dependent, wheelchair-bound, 'hooked up to machines,' etc. Given that judgment, I can support withdrawal of mechanical ventilation and pressors [medicines to sustain blood pressure] now rather than later." Charles was taken off the ventilator and the pressors, moved to the Palliative Care Unit, and died peacefully just 24 hours after the surgery had ended.

They say that hindsight is always 20/20. I can only try to imagine the frantic discussion in the middle of the night, the surgeons anxious to use all their skill to preserve the patient's ability to walk, the family not in a position to digest the news and certainly not able to offer up an option. Had there been a more detailed attempt to tease out the family's goals for Charles, their concerns might have come out more forcefully and the outcome might have been different. No one can know for sure. What we do know is that this family elected to opt out of a buy-in they hadn't fully realized they'd bought. How many examples of conflict between the health care system and the people it serves can be traced to a miscommunication about both goals and process? Facing advanced illness and the high probability of significant disability, how many patients and families would opt out instead of buying in?

Dying Alone

I introduced Larry in my last post, "A Day in the Life." He'd come to the hospital saying that he couldn't breathe. He'd lost his appetite and a lot of weight. After a week of tests, the bad news came back: stage 4 lung cancer, already spread outside the lung to the liver and the bones. He agreed to chemotherapy and then stopped after one treatment, saying it hadn't helped. His record has several notes from oncologists along the lines of "I explained that it's wrong to say the treatment is not working after just one dose," but Larry was determined. All he wanted was to be comfortable, he said. That's when my team and I made Larry's acquaintance. He moved to our inpatient unit and passed away a few days later, pain-free and breathing easily.

Larry had no real medical record. On admission he proudly told everyone that he hadn't seen a doctor in 50 years or more. He lived alone. No family members were listed in his chart. There was rumored to be a distant relative in another state, but calls to that number didn't connect to a person or to voicemail. Larry did have a friend of sorts, someone who lived in his building and took care of his cat. But there was no one to call when Larry entered hospice, and no one to notify that he'd died.

Our instinct is that it's sad for anyone to die alone. Deep in our collective consciousness, I think, is the Hollywood death-bed scene -- the dying person surrounded by loved ones, perhaps dispensing final words of wisdom before taking one last breath and slipping away. I've had dozens of conversations that begin something like, "Doctor, how long? His daughter/grandson/best friend wants to be here at the end, and that person needs to know when to come." I've had family members literally refuse to step out of a patient's room for fear of missing the moment of death. Not long ago, a rabbi told me that he was organizing a prayer group to be present at a patient's dying moment, so he needed as much precision as I could supply. I used to work for a hospice that took pride in its "vigil program," a group of volunteers who'd sit by the bedside so that no one had to be alone during the final hours and minutes.

I've had many private conversations over the years with dying people in which they've shared their fears. Often they're afraid of suffering. They fear for their families' well-being, and sometimes they worry that they've left some piece of interpersonal work undone. But they never tell me they fear dying alone. On the contrary, some have said they were afraid of dying in front of their families. They wanted to spare them the pain of witnessing that final breath.

All hospice veterans have seen this: a family sits in vigil with a loved one who seems endlessly suspended between life and death. The family leaves en masse, perhaps to get a bite to eat. And moments after the loved ones exit, the dying person completes the work and the soul detaches from the body. When families express amazement, we tend to offer an interpretation. "She was waiting for you all to leave," we say, "probably because she wanted to protect you from seeing the very end." And this explanation, in my experience, is comforting to families.

So we say that no one should die alone, yet we seem to accept with equanimity when someone we love -- and I hesitate to use this word -- chooses to die alone. It's an odd paradox. Perhaps the dying don't fear dying alone. Perhaps on some level they embrace it. And so perhaps what we ought to say is not that no one should die alone, but that no one should have to because of circumstance or fate.

Lows and Highs

A day in the life...

Things didn't start out so well today. A patient's family was reportedly furious because I'd raised the possibility that their loved one might be ready to step down from inpatient to home hospice care. They claimed they'd been promised that he could stay forever on our hospice unit. I don't know how they'd reached that conclusion; it didn't come from me, and it's my job to make those calls. Those of us in the hospice world understand that anger aimed at us often isn't about us. Instead, it reflects the raw emotions set loose by grief and loss. I chose to have intermediaries deal with the family. Maybe by tomorrow emotions will cool down enough to talk the problem through.

In the next room an older woman seems moments away from death. Her cancer is far advanced; it involves her internal organs, her bones, and even her skin. She has the faraway look of the dying. Her husband of sixty years strokes her forehead and talks about their time together. When he calls her by her nickname, I feel a tightness in my chest. His wife and mine have the same name -- and, as it happens, the same nickname.

Across the hall is Larry, a loner in his early seventies who hadn't seen a doctor in more than fifty years. "That's why he's lived so long," I quipped to the resident who called me about him the other day. Larry came to the emergency room because he couldn't breathe. His cancer involved both lungs, his liver, and his bones. He says he's fine, but we know he has just a few days to live. I tell him not to worry, that we'll take good care of him, and he coughs his way through a thank-you.

Then there's Natasha, 93 years old, a Ukrainian Jew and Holocaust survivor who came to America three decades ago, learned the language, and built a new life. Only now that life is coming to an end. I spent an hour with her son and his family, helping them decide what made sense for her now. In a post about a year ago, I quoted the author Francine Russo, who wrote, "The real challenge in making decisions about life-extending treatment is how much we can focus on what our dying parent needs rather than our own anguish. This is the ultimate test of emotional separation." Natasha's family was still wrestling with their anguish when I left to see my next patient.

Halfway down the hall is Shirley, 103 years young. She had dwindled a bit in recent years but still put on make-up every day and held court at home, surrounded by her large and doting family. She'd been admitted to the hospital because she was becoming withdrawn. They found a large mass in her abdomen, probably cancerous. Her family chose not to to proceed further and instead enrolled her in hospice. As she declines day by day, her daughter weeps at the bedside, telling me, "It's too soon, it's too soon." Experience has taught me that, in one way or another, it's always too soon.

Today also contained a bit of stealth. We've had Ginny on our unit for a couple of weeks, a young woman with terrible cancer and horrible pain who came to us after having seizures at home. We've had to negotiate over and over again with her hyper-attentive husband Richard, who keeps telling us she's not in so much pain (this despite her moaning and grimacing) because -- and he freely admits this -- it's important to him that she remain as awake as possible. (One of these days I'm going to post an entry entitled "Terminally Ill Patients as Family Pets," I swear to God.) Today he was away from the bedside for a few hours, and Ginny's sister stood vigil in his place. I shared with her my concern about Ginny's pain, and the sister told me right off that she agreed with me. We upped the dose and the moaning and grimacing became much less. Returning from his time away, Richard seemed none the wiser.

Then there was a trip to the ICU, where Barbara, an older woman, was dying despite the application of most of the known critical care modalities. She had a living will that made her preferences clear. She'd wanted none of this. The ICU usually calls me when they've exhausted all their options, not before they start down the road that everyone knows leads to the edge of a cliff. I wish they read those living wills and talked about them with patients and their families before they started. Still, this time I parachuted right into the landing zone. Barbara moved out of ICU to our palliative unit. She looked more comfortable immediately, and her daughter seems reconciled to losing her mother in a day or two.

There were other patients, and a hundred or so e-mails to read and deal with. (I'm supposed to grow and develop our program, too, and on days like today the administrative side can drive me to distraction.) At the end of an all too typically long day, I looked in on Bob, a grade-school teacher who'd come in because the pain from his stomach cancer was out of control. I swung open the door to his room and saw him playing the guitar, singing with a couple of friends. Bob, I've learned, is a deeply religious man. The chorus to the song went, "Lord, I have reverence for you." I smiled, bowed my head, and waited for him to finish. His pain is so much better.

It's good to end a hospice day with reverence, I think.

A Tale of Two Couples

My colleagues tell me all the time that they couldn't do what I do, and my friends ask me all the time if my work is depressing. Helping patients and families navigate the terrain of life-limiting illness is not for those who are comfortable being detached emotionally. The work is hard, but among its rewards is the privilege of having a front-row seat on so many aspects of the human condition. We see pain, but also joy. We see old wounds ripped open, but also love.

In the last few weeks I've been involved with two couples whose love for each other played out in different ways.

Hal was a hospice patient in his late sixties who'd come in from home because the pain from his stomach cancer was getting out of control. What we first thought would be a quick hospitalization turned into a stay of over a month. I'd met Hal before he'd gotten really sick. Predictably, he was the nicest guy you'd ever meet -- I say "predictably" because sometimes, it seems to me, the really nasty people never get sick. We got Hal's pain stabilized, but then he became delirious, and it took most of our tricks to keep him settled and to prevent him from hurting himself. There was no way he could go home or to another setting like a nursing home. His wife Jackie never left his side. And I mean that literally. Her universe, for more than a month, was Hal's hospital room. Friends and family brought clean clothes and food. She worked on her laptop when Hal was asleep and held his hand when he was awake. The staff learned to stay out of Hal's room when Jackie climbed into the bed to "spoon" with her husband.

From time to time I suggested that Jackie take a walk or go shopping or do something for a change of scene. She always smiled and always turned me down. She told me how important it was to her to be there for her husband and especially to be there when he died. And bit by bit, he became less and less awake, his pain and delirium controlled, and she was there for him right up to the end. Their love required her constant presence, and it never occurred to her to handle it any other way.

At about the same time, we admitted another hospice patient from home. Victor had led a rugged life. He was an alcoholic with cirrhosis and hepatitis. His liver and kidneys were failing rapidly. His partner Steve was twenty years his junior, and he was so beside himself with the though of losing Victor that he could barely come to visit. But we did talk about their relationship and about their love. They'd been together for fifteen years, and Steve was so young that this was clearly his first serious relationship. They had no real friends and no support system except each other. "It was always us against the world," Steve said.

Victor declined rapidly over a few days, his jaundice deepening and his kidneys finally quitting altogether. On the last day Steve came by in the morning. I watched as he held Victor's hand, kissed his forehead, and called him "sweetie" and "honey." Victor died later that day, but Steve was not there. It's our observation that sometimes patients seem to wait to be alone before they pass. Perhaps on some level Victor understood how hard his dying would be on Steve, and perhaps he chose to wait.

Being a hospice doctor gives me no claim to expertise on any aspect of the human condition, let alone love. But each day teaches me once again that love is gay and love is straight, that love is long and love is short, that love is hard and love is easy. Love may not make the world go 'round, but it is present in its infinite varieties among the dying and those who care for them.

We Need More

I've stayed away from writing about health care policy -- there are plenty of people out there far better as policy wonks than I could ever be -- but a recent editorial in the Journal of Palliative Medicine calls out for comment. The writer was Dr. Sean Morrison, a leader in the effort to bring hospice and palliative care into the mainstream of American medicine. Dr. Morrison notes that many American medical schools now teach palliative care principles. But the so-called hidden curriculum often works at cross-purposes and devalues the practice of palliative medicine.

You know what the hidden curriculum means. If you've ever heard something like, "Now that you've finished your training, we'll teach you what it's really like to do this job," well, that's the voice of the hidden curriculum. Physicians in training are highly influenced by the words and deeds of their senior instructors and mentors. If those doctors give no more than lip service to the core mission of palliative care -- relieving suffering, helping articulate goals, guiding patients and families through transitions -- then the younger generation will do the same. Monkey see, monkey do.

The palliative care workforce is still too small for the workload. Here are some remarkable numbers that Dr. Morrison cites:

• There is one cardiologist for every 71 persons experiencing a heart attack
• And there is one oncologist for every 141 patients diagnosed with cancer
• But there is only one palliative medicine physician for every 31,000 persons living with a serious, life-threatening illness

Palliative care works. Whether delivered through hospice or not, palliative care programs "reduce symptoms, improve doctor-patient-family communication and satisfaction with care, [and] enhance the efficiency and effectiveness of hospital services," Dr. Morrison writes. To this hospice and palliative medicine specialist, that sounds like an important part of the effort to improve the American health care system's affordability, accessibility, and quality.

To counteract the hidden curriculum, we're going to need a lot more help.

"Does He Have a Cure?"

Dana was too young to be as sick as she was. Diagnosed in her early 40s with a rare form of uterine cancer, her tumor had filled her pelvis and literally was erupting through the skin below her belly button. When I first met her, she was weak, bleeding, and frightened. All of us involved with her care -- the oncologist, the ICU staff, and my palliative care team -- believed that she would only live a couple of weeks at most.

But we hadn't counted on Tom, Dana's hard-charging husband. Tom seemed to believe that he could bend the universe to his will if only he pushed hard enough. In family meetings he did the talking while Dana stayed quiet. Tom advocated continued aggressive care -- more chemo, transfusions to help with anemia and bleeding, radiation treatments -- when it seemed to us that Dana just wanted to stop. It was Tom who recited the list of milestones that Dana had achieved -- getting to attend her daughter's wedding, celebrating a birthday, moving into a new home. She had lived for several months longer than we'd believed possible. None of us were sure that Dana thought achieving the milestones had been worth it. But it was hard to find time to talk with her alone. Tom was a constant presence at the bedside.

Dana lived for much of her last six months in hospitals, spending three months in an inpatient bed at one point without a break. Many days were spent negotiating with Tom, who wanted to blame Dana's weakness on anything -- the drugs, inadequate nursing, the food -- anything but the terrible cancer that was taking his wife's life.

"Am I dying?" is a question a hospice doctor hears a lot. There's no border crossing, no checkpoint, no security screening that demarcates the beginning of the Land of the Dying. One often can only know the answer to the question in retrospect. Certainly from Tom's perspective, his wife was not dying until the very end.

But the end came eventually when Dana was admitted to our palliative care floor for the last time. Tom was still talking about radiation and more chemo, but this time Dana stopped him. She'd had enough, she said, and there would be no more. We focused on comfort -- although Tom still requested, and got, more lab tests and a transfusion just a day before Dana died. And we had endless discussions with Tom about exactly how much pain medicine we could give, because he believed the drugs, and not the cancer, bore responsibility for his wife's decline.

Late one Friday afternoon, I quietly entered Dana's room. She was unresponsive and ashen. I knew from her breathing that her life expectancy could be measured in minutes. Tom was sitting by the bed, stroking Dana's face and holding her hand, his back toward me. Another family member acknowledged my presence with a nod. The atmosphere was so charged, the room so still, that I was afraid to breathe loudly, let alone speak. After perhaps five or ten minutes, the family member said, "The doctor's here, Tom. Do you want to ask him anything?"

A long minute passed, and Tom asked, "Does he have a cure?"

My heart burst open. I had to work to prevent my knees from buckling. And then I looked at Dana. She was gone. I put my stethoscope on her lifeless chest, and Tom -- the man who'd shown no pain, who'd demonstrated nothing but a fierce determination to surmount his wife's cancer -- Tom began to weep.

And I found my inner self rejoicing just a little bit. Not over the death of a brave woman, and not over a husband's pain. But the fact that pain could be expressed, that anguish could be seen -- that seemed cause for quiet celebration. Tom was unlikely to ever be able to heal without taking the first, tentative step of acknowledging his loss and his suffering. I hope he can remain open to the feelings he finally let us see.

And as for me, I know I have to let my heart break over and over again, as I encounter the Toms and the Danas of this world and try to guide them through the Land of the Dying.

Facing Death

If you haven't seen it, you owe it to yourself to watch "Facing Death," a documentary recently shown by the Public Broadcasting Service. Here's the link:

http://www.pbs.org/wgbh/pages/frontline/facing-death/

This documentary highlights some of the trade-offs inherent in high-tech, modern medicine. I thought it was extraordinary that several patients and their families permitted such a personal look at their journeys through serious illness.

As a hospice and palliative medicine physician, I was surprised that symptom relief, comfort care, and hospice weren't dealt with at all. Hospice was mentioned once -- unskillfully, I thought -- by one doctor talking with one family. And I cringed when she said that "doing nothing" was an option. For the record, hospice care isn't doing nothing. It's substituting one goal of care for another. I frequently have hospice patients receiving multiple medications to relieve their pain and other symptoms while our entire team works to assure emotional and spiritual needs are attended to. That's not nothing. That's a whole lot of something -- something that all of us need when we are facing death.