El Momento

In my work as a hospice and palliative medicine physician, I've had occasion to teach some younger colleagues -- medical students and residents -- a few things about how to talk with patients and families. To us insiders, the medical world -- beeping alarms, the whooshing of a ventilator, endless tests -- feels perfectly normal. But to our patients and their loved ones, what we take for granted can be terrifying. Add to that the high income of many doctors and our natural tendency as people to be around others of similar social class. This creates a gap, I've always told my students, between physicians and patients. Not that doctors should pretend to be other than they are, but I've found it's always a good idea to look for a way to reduce the social distance. This breaks the ice and, I've found, makes it easier for patients and families to hear the message. I always comment, for example, when someone in the room is wearing the baseball cap of my favorite team or when their accent is from the part of the country I grew up in. With my Spanish-speaking patients, one way I reduce the social distance is by making fun of my own inability to speak their language. "Mi español es muy mal," I tell them -- my Spanish is very bad. They usually laugh -- because my Spanish is very bad -- and we go on with the help of an interpreter.

Recently our team met Nina, her husband Juan, and many members of her extended family -- most of whom only spoke Spanish. Nina was on dialysis and had terrible heart disease. They'd never discussed her preferences in the event she became very sick. Nina was found down in her home, unconscious and without a pulse. The family called 911, the paramedics got her heart going again, and our team met her in the ICU a couple of days after admission. She was on a ventilator, needing pressors -- drugs that maintain a blood pressure -- and not waking up. Nor would she ever wake up, the neurologist said.

Over the course of several days, my team and I talked with Juan and other members of his family. Because mi español es muy mal, an interpreter helped us. Juan and his father, always in attendance at the bedside, kept changing the baseball teams whose caps they wore. So our conversations usually started in a light-hearted way about the playoffs and the World Series, and then moved on to Nina's condition. We used our time to teach Juan about the trade-offs in using pressors, the unique sensitivity of the brain to oxygen deprivation, and other medical facts. We'd judged that the family would need some time to get used to the idea that Nina was not coming back.

There was one more EEG done at the family's request, which showed the same result. So it was time for the final family meeting. Juan and other family members were there, as were my team, a Spanish interpreter, and the ICU folks who'd been caring for Nina. The ICU doctor summarized the situation and answered questions from the family. But there was reluctance, understandably, to withdraw the ventilator and allow Nina to complete the dying process that had begun when she collapsed at home. I thought I'd reduced the social distance enough with Juan to try a more personal approach:

"Ud. sabe que mi español es muy mal. You know that my Spanish is very bad." Juan smiled. "Pero quiero decir algo. But I want to say something." Gesturing to the medical team and then to Juan and his extended family, I said, "Tenemos mucho dolor en nuestros corazones para ustedes. We all have much pain in our hearts for all of you." And then I held up my left hand so he could see my wedding ring. "Yo soy un esposo. Ud. es un esposo. I am a husband," I said. "You are a husband. Ahora es el momento de decir adiós. Now is the time to say good-bye."

There were tears, as there always are, and a short discussion among the family members in Spanish. Juan looked at me and nodded in agreement. The chaplain was called, and -- using a protocol that ensures the absence of air hunger or sense of suffocation -- we withdrew the ventilator. Nina was pronounced dead within the hour.

As I write this post, there is still news about the conflict between the parents of a brain-dead child and a hospital in California. I don't know any details that haven't been reported, but I wonder if some of the disagreement might have arisen because of the social gap between the health care team and the family. Letting go is hard, but it has to be a little easier if you feel the doctors and nurses and others understand you -- in other words, if the social distance has been reduced. Easier is better, it seems to me, because for every one of us there is a time to say good-bye.

Easy, Medium, Hard

One week, one young hospitalist, three dying patients. Sometimes it's easy, sometimes so-so, and sometimes it's hard. I'm getting to the age where words like Medicare, advanced illness, and, yes, hospice don't seem so far in the future. Our team recently worked with a new young hospitalist to help her patients and help her deal with the reality that no one lives forever.

Dr. G, as I'll call her, got in touch about a 48 year old woman with a longstanding degenerative neurological disease. "I've just walked in the room, and I think she is dying," Dr. G told me. "Her mother seems so calm and accepting. The patient's so young, and I just want to be sure that I'm doing the right thing" by honoring the patient's wish for no aggressive measures.

When we met the patient, it was obvious that Dr. G was right. Jane was unarousable with rapid, shallow breathing. Her arms and legs were ice-cold, and the skin around her kneecaps was already turning purple. This mottling is often a sign of impending death. So we spoke with her mother. "Jane and I have talked about this many, many times over the last three years," she told us. Jane had already experienced multiple episodes of what we call multi-system organ failure, which means just what it sounds like. She'd been pulled back from the brink half a dozen times, and she wasn't going to tolerate it again. Her written declaration was clear and consistent with her mother's description. "I'm at peace with this," she said. "I feel strongly that Jane has suffered greatly, that she has had enough, and that she'll be going to a better place." Our team reassured Dr. G that she was, in fact, doing the right thing by holding off on transfer to the ICU, pressor drugs to raise the blood pressure, and so on. Jane was quickly transferred to the inpatient hospice unit, where she died comfortably the next day.

Easy? Well, sort of. It's never easy to lose a child (see my December 2011 post, "The Natural Order of Things"), but there was no argument about what was going on and no disagreement about what was the compassionate thing to do. So, yes, easy in the spectrum of not-so-easy things.

Later in the week, we heard from Dr. G again about another patient. Martha was 46, and when her breast cancer was diagnosed and treated five years earlier, she'd decided that the fight was over and that she had won. She went on with her life, feeling fine and doing all the things that a wife, mother, and community member would do. Six months before we met her, the cancer came roaring back. It spread throughout her abdomen and left her with pain, weight loss, and a belly full of fluid. Her oncologist admitted her to the hospital for symptom management, and that's what prompted Dr. G's call to us.

Martha was obviously uncomfortable. She was being attended to by a small group of devoted but protective friends. It was clear to our team that the friends were acting as Martha's guardians, and that anything we proposed had to be cleared by them. (This is a not uncommon dynamic when young female patients are beginning the dying process, I have found.) So we got to work on Martha's pain and shortness of breath. We were not surprised when she and the guardians raised the question of hospice. Uncharacteristically, her oncologist raised no objection. The original plan was for Martha to go home with hospice care, but after three days in the hospital it was clear that she couldn't manage at home even with the help of hospice, her husband, and the guardians. All parties wrestled with the decision for a day or so, and then Martha and those who cared about her accepted a transfer to the inpatient hospice unit where she died, also comfortably, a few days later.

But the really hard one for the young hospitalist was a patient roughly three times her age. Pedro was 86. When he fell at home, he hurt his neck and -- as is often the case with fragile elders -- some of his marginally functioning body systems also took a hit. His heart failure got worse, which in turn affected his not-so-healthy kidneys, and within a few days his lungs were giving out, too. He needed ever-increasing concentrations of oxygen and appeared to be tiring out. Some patients like this are placed on a ventilator, but with everything else going wrong with Pedro it was clear that he would never be able to come off a breathing machine. Dr. G called the patient's sister, who was his medical power of attorney. I listened as she described the situation with great compassion and skill. Unlike many doctors, she didn't avoid the word "dying." She told it like it was. The sister agreed to come in that afternoon to meet with our team, Dr. G, and other family members to talk about next steps and probable enrollment in hospice. A few hours later, we were midway through that discussion when Pedro's nurse appeared and waved me over. He had stopped breathing and his heart was slowing rapidly. I returned to the conference room and told Pedro's sister that he had died. Dr. G looked a bit stricken, and we talked that through. She was feeling guilty that she hadn't moved more quickly to get the family up to speed and enroll the patient in hospice. I reminded her of what a great job she'd done on the phone and told her that no one could have moved any faster.

No end-of-life situation is truly easy -- not for the medical team, not for the family, surely not for the dying. Still, in the space of one week, our team accompanied dying patients, their loved ones, and one young physician through easy, medium, and hard situations. That is the unique satisfaction of a life in hospice and palliative care.

A Day's Work

There are days, and then there are days to remember. Palliative care tries to relieve suffering, but we can't know in advance what kind of suffering we'll run into. Here's what yesterday looked like for our team:

Susan is a woman in her early forties who looked older and has had a life marked by misery -- intestinal problems, bladder problems, pain all over from fibromyalgia, money problems, and family problems. She used to work as a manager but now is receiving disability. A few months ago she had a nasty cancer that began inside her ear. She had surgery, but she was left with stabbing pain above and behind the ear that radiated down into the back of her neck. When the pain got worse, she worried about the cancer coming back and consulted an oncologist. Tests showed no evidence of recurrence, the oncologist tried unsuccessfully to get the pain under control, and Susan eventually was admitted to the hospital with pneumonia. We made some medication adjustments, and I found that pushing on her occipital nerve (it comes out in the back of the neck just below the skull) reproduced much of her ear pain. (There's a branch of the nerve that goes right behind the ear.) I did a nerve block by injecting some local anesthetic. She felt significant relief within minutes. Then we had a long talk about fibromyalgia, about how exercise was the only effective treatment, and how she had to overcome her fear and begin to move again. She promised to try.

Claudia, who describes herself as a simple country woman, was admitted a few days ago with abdominal pain. The diagnosis of stage 4 colon cancer was quickly made, and her pain was easily controlled, first with intravenous morphine and then with the equivalent oral dose. She was calm and sanguine about her limited life expectancy, and her family seemed equally at peace. This morning I was called urgently to the bedside. She was hallucinating and seemed to be having a panic attack. And she was panicky indeed, saying, "I'm afraid I'm losing my mind!" Yesterday, it seems, she'd "seen" her teenaged grandson at the foot of her bed. He died three years ago. This morning she didn't see him, but she distinctly heard his voice saying, "It's okay, Grandma." In medical terms these are straightforward hallucinations and ordinarily would prompt the use of strong tranquilizers and maybe the discontinuation of pain medication. But for those of us who care for patients late in life, there's another explanation for Claudia's experience. It's called nearing death awareness, a common event among those who are gravely ill. Patients often report visitations from the dead, and they sometimes speak in travel metaphors -- "the train is leaving soon, and I'm afraid I'll miss it," that sort of thing. We pulled all the visiting family members into Claudia's room and talk about nearing death awareness. She became more calm. Her brother said he'd had similar experiences after their mother had died; she had visited him, he said, and he embraced the experience. Claudia and her family accepted this explanation, she declined my offer of a sedative if she was still feeling shaky, her pain medicine continued, and soon thereafter she and her visitors were laughing about the experience. I accept the possibility that her grandson actually had made a visit. Who can say for sure?

Richard came back in today, his third admission in two weeks. He'd had strokes some months back and was getting artificial nutrition through a stomach tube. On each admission he had heart failure, and he seemed more frail each time. On the last admission, I'd introduced the word "dying" into the conversation with his wife Alice. She'd swallowed hard, made him a DNR, and told the nursing home he shouldn't be admitted again. But at one o'clock in the morning, when the home called to say he was unresponsive, she asked that he be transferred to the hospital. When we arrived his legs were cool and he was having 40-second pauses when he didn't breathe at all. He was gurgling because of saliva pooling in his throat. We met with Alice, who was supported by a close friend, and told her the end was coming soon. She cried and agreed, telling us that it was her denial that had prevented her from seeing the obvious until now. Within an hour he was transferred to the local hospice's inpatient unit.

Everyone dreaded seeing Janet. Morbidly obese, she had severe chronic lung disease, diabetes (made worse by the cortisone she needed for her lungs), a myriad of other medical problems, and among the most dysfunctional families we'd ever heard of. She went on at length about children gone bad, siblings who refused to help her, and the many health care professionals who'd refused to listen to her. It was hard to listen to her because she bounced from thought to thought and needed repeatedly to be brought back to the here and now. We got all this history the day before yesterday when we met her for the first time. It was clear that the spike in her hospital visits in the last few months coincided with her son moving out of her house and disappearing. I finally said, "Look, you have no good choices, just bad ones. You need to weigh them and pick the lightest." I mentioned a nursing home, which she dismissed immediately, but a few minutes later asked how she might get information about them. "Our palliative care social worker will help you," I promised. Yesterday Janet agreed to go to a nursing home for rehabilitation, and I was told I had worked a miracle. It didn't feel like one to me.

Graham is in his sixties but looks a lot older. His heart failure is getting worse, but his breathing was better after starting an opioid medication. He is waiting for the required three days in the hospital to be over so that he can go to a nursing home, where hospice will become involved. He and his wife both know that he won't be hospitalized again.

Martha, a charming lady in her early seventies, has the misfortune of having two cancers -- a chronic form of leukemia, and a newly diagnosed kidney cancer. She's getting chemo for the first and radiation for the second. Her pain is not a problem, but her nausea is. We're trying to persuade the nursing home to pre-medicate her with anti-nausea meds before they send her in for radiation treatments. And we're trying to persuade Martha and her husband to talk about her preferences should she become very sick. Getting a signed power of attorney form was the major advance care planning accomplishment of her last hospitalization. Maybe the accomplishment this time will be a simple conversation between husband and wife.

As the day was winding down, I noticed that Donald had been readmitted. We'd met him last week when he came in for back surgery. He'd had a vertebral fracture that looked a lot like cancer on his MRI. Other tests suggested that this lifelong smoker had lung cancer that had spread to his bones. The orthopedist took a biopsy and then treated the fracture by filling the collapsed vertebra with a special cement. Donald, who was cantankerous and frankly nasty when he was admitted, got good pain relief and left in high spirits. Unfortunately over a period of several days his legs became numb and he was readmitted today when he couldn't walk. When cancer in the bones of the spine compresses the spinal cord, that's a genuine emergency. I helped the hospitalist get him started on intravenous cortisone and made sure that radiation oncology was geared up for emergency treatment. If it's going to work, it has to be started when symptoms first appear. Donald may have waited too long to get help, so he may never walk again. We'll just have to see.

They say that if you only have a hammer, the world just looks like a nail. Yesterday our palliative care team had a hammer, flat-blade and Phillips screwdrivers, a pair of pliers, and a couple of wrenches. We didn't know what kind of suffering we'd run into, but we always respond somehow to what's in front of us. Yesterday was a day to remember.

Coding Again

Despite his years of diabetes and many other health problems, when it came time for Alejandro to have his aortic valve replaced, he sailed through the surgery. His wife, four sons, and other family members were elated. Alejandro left the hospital on time and, at least for a while, did well at home. But three weeks after surgery, he suddenly felt weak and dizzy. He lost his appetite and his energy. His family brought him back to the hospital, where it was obvious he was very sick.

Most patients with artificial heart valves need to take "blood thinners" -- medicines that impair the blood's ability to clot. A clot forming on an artificial heart valve is a major problem. Tests quickly revealed that Alejandro had bled into his retroperitoneal space -- just in front of the spinal column but actually behind most of the abdominal organs. He was bleeding from one of his kidneys. His blood count and blood pressure were dangerously low. So he was admitted to the ICU, and from there on his problems cascaded. The bleeding kidney stopped bleeding after a procedure called embolization -- basically, the doctors threaded a thin tube through his arteries and plugged the leak. But then he developed sepsis, and then kidney failure. He started receiving dialysis, which was going to be permanent. During his stay, he had a cardiac arrest -- he "coded," as we say (because cardiac arrests in most hospitals are referred to as Code Blue or Code 99 or something similar). The ICU staff brought him back to life, but from then on his mental functioning wasn't normal. He more or less quit talking, he had trouble following commands, and his eyes wouldn't focus on the person addressing him or anything else. And his breathing pattern changed. Although the oxygen in his blood was normal, he appeared to be sipping the air. A CT scan showed no structural brain damage, but an EEG showed abnormal brain waves. He was thought to have anoxic encephalopathy -- a mouthful of a phrase that basically means generalized brain damage from lack of oxygen, a complication of his cardiac arrest.

One Monday morning our team found him on our list of to-be-seen consults. Under "reason for consultation," the weekend covering ICU doctor had written, "Family support." We met with the patient's wife Evita and one son. Using a Spanish interpreter, we talked about Alejandro's condition and the possibility that he would not survive, or at least not return to his previous level of functioning. His wife understood that. What she couldn't get her arms around was the surprise -- he had done so well at home, and his sudden deterioration caught the whole family off guard. She was torn between two conflicting emotions. She didn't want to lose her husband, but she knew that he would never want to be, as she put it, a vegetable. It was important to wait until Wednesday, she told us, when all four of her sons could be present. We assured her that all efforts would be made to help Alejandro make it to Wednesday, but that success was not guaranteed. At our suggestion, the family called their priest to administer the Sacrament of the Sick.

That night his breathing worsened, and he was placed on BiPAP. This is a tight-fitting mask that delivers oxygen under pressure to the lungs. It's one step below a ventilator in intensity. When we visited with Evita on Tuesday, she understood that things were worse. She still spoke of the discrepancy between how well he'd done immediately after the surgery and how he was doing now. We began to introduce words like "dying" and "hospice" into the conversation and scheduled the family meeting for the following day.

About 20 minutes before Wednesday's meeting began, Alejandro had another cardiac arrest. The ICU team responded swiftly and skillfully. As is always the case with patients who are coded and survive, he had a tube placed in his windpipe and was put on a ventilator. Present in the meeting room were Alejandro's wife, all four sons, their wives, and a couple of old family friends. I reviewed the case from the beginning. I answered multiple questions about treatment options, prognosis, and the like. "The best case is that he will not return to his previous self," I told the family. I discussed the option of continuing life support and aggressive therapy, or choosing to withdraw the machines and focus on his comfort for whatever time remained. The issue of surprise -- why had this happened when he'd done so well at first? -- came up again and again. I asked Evita what she wanted to do. "Whatever they want," she replied, gesturing toward her sons. One by one, three of the sons said they wanted only for their father to be comfortable. I turned to the fourth son, and before I could hear what he had to said, the ICU nurses rushed into the room and said, "He's coding again." I looked at the family and they all, through their tears, were nodding their heads. They knew. I said, "Let's go say good-bye." We went to the bedside. The ICU room was packed with people; Evita stood at the head of the bed, looking into her dying husband's eyes, telling him she loved him. Alejandro took his last breath a moment later.

I've been in plenty of family meetings where the issue of "code status" was discussed, but this was my first in which the patient had a cardiac arrest while the meeting was underway. Critics often say that palliative care is just about dying, which it sometimes is. But most of the time it's about helping the living accept the reality of dying at a pace they can accept -- even in the middle of a code.

End of an Era

Most of my postings have been about patients and their families who are facing serious, even life-threatening, illness. But there was a death recently in a different kind of family -- the hospice and palliative medicine family -- and I feel I must comment about its impact.

Not long ago, a pioneering institution in our field -- San Diego Hospice & Palliative Care -- closed its doors forever. SDH cared for patients throughout San Diego County -- almost a thousand on any given day -- but it was more than a hospice. Through its Institute for Palliative Medicine, San Diego Hospice trained physicians, nurses, and others in how to care for those near or at the end of life. Many of its graduates now hold leadership positions in hospice and palliative care organizations across the country. And through its international outreach, the IPM helped extend palliative care to people around the world.

Research, too, was part of its mission. We need better ways of caring for the myriad physical, emotional, and spiritual problems that patients and families encounter when they face serious threats to their health.

Much has already been written in my professional circles about the circumstances leading up to SDH's demise. There have been claims that the decision to close was premature, that the agency's financial problems could have been solved, and so on.

I don't know if any of those statements are true. But I do know that the world is less well off without the patient care, research, and education provided by San Diego Hospice & Palliative Care. At a time when there is universal consensus that we need more and better palliative care, the loss of this remarkable institution is, pure and simple, an unmitigated tragedy. I mourn its passing and hope we can recover.

Lighten the Load

For what seemed like the umpteenth time, Judd was back in the hospital. A family friend had found him semi-conscious on the living room floor, surrounded by empty bags of cookies and potato chips. Since he was a diabetic on dialysis, neither of those was a health food for Judd. His blood sugar was over 1000 -- normal is around 100 -- so the medical team got to work with fluids, insulin, and dialysis to get him back to his baseline. Our palliative care team was called by the hospitalist more out of frustration than anything else. Help me figure out what to do, she asked us. Was this a suicide attempt? Is this what the future looks like -- multiple episodes of what doctors call "non-compliance," with one of them ultimately proving fatal? Is there an alternative to the revolving door of home to hospital to home to hospital again?

All good questions that we in palliative care often lump together under the heading of "goals of care." When we got to Judd's room, we found his wife Anne crying outside the door, saying, "I can't keep doing this." We quickly learned that this was a second marriage for them both. And Anne was dealing with another family tragedy -- her son from her first marriage was dying of cancer, and at the moment the friend found Judd on the floor, Anne had been visiting her son in a nearby hospice.

Even though his mental state was not entirely normal, Judd insisted from the beginning that he hadn't been trying to take his own life by overdosing on cookies and chips. "I'm tired of people talking about it," he said, even as Anne said that was just what she thought he was doing. "But I'm not interested in being an invalid," Judd added. "I used to be able to go hunting or camping or fishing, and now I can't." And he mentioned something that a lot of our patients ask about -- whether I could give him a shot or a pill to put him out of his misery, since in his eyes he was obviously worthless to anyone.

All of us in palliative care have figured out a couple of ways to deflect requests that we murder our patients. I said something about him not being a horse needing to be put down and my not being a veterinarian. This got the expected laugh, and we moved on. Over the next couple of days, as Judd's condition stabilized with medical treatment, we learned a few more things about him. He'd been a veteran and a law enforcement officer and had grown up in a part of the country where manliness was defined in a conventional way. You protected your family, you put food on the table, and if things didn't go well or tragedy befell you, well, you just sucked that up and kept on going.

But it turned out that Judd had a philosophical streak as well. He and I had a private conversation a few days into his hospital stay. Referring to his diabetes and kidney failure, he said, "I've figured out that this is my new reality, like it or not. Not only do I have to accept it, but I have to give up being angry about it, because being angry isn't helping anybody." This helped me understand that the cookie and potato chip binge -- the multiple binges, really -- weren't so much about suicide as they were an expression of his frustration with his limitations. By losing the ability to be the man he thought he was supposed to be, he had lost any sense of meaning in his life.

The conversation turned to Anne and her dying son. Tears welled up in his eyes as Judd talked about how hard it was for him not to be there for his wife. He felt she needed him, but he was too sick himself to help. "It's natural for a man to want to lighten the load of the woman he loves," I told him. "Sometimes you do that literally. You take a heavy package from her hands and hoist it onto a shelf she can't reach. But there are other ways to lighten the load. Part of what's burdening Anne is your illness. Did you ever think that a big part of her load is the thought of losing her son and her husband both?"

Judd admitted that he had not. "So lighten her load by taking care of yourself," I suggested. "Lighten her load by staying alive, by living as well as you can. Lighten her load by being able to tell her you love her when she really needs to hear that, and by being alive so you can hold her had at her son's funeral. You're not an invalid even though you have some limitations because of your illness. If you get to the point where you really are an invalid, the two of you can talk about what to do next."

The philosophical side of Judd realized I had a point, and he told me so. He thanked me, we shook hands, and I took my leave. Judd was discharged the following day, and Anne's son died a couple of days later. So far, Judd has stayed out of the hospital.

"One need not turn upside down to see the world differently," the author Ray Bradbury once wrote. "All it takes is a tilt of the head, an inch to this side or that." Finding meaning in the face of life-limiting illness can be difficult, but sometimes all it takes is a tilt of the head.

Manuel

"He's all heart," the radiologist said as she looked at the x-ray. "I honestly don't understand how he's still alive."

Perhaps you've seen a chest x-ray before -- the ribs and vertebrae in white, the air-filled lungs nearly black. That bright-white structure in the middle is your heart, of course. As a rule of thumb, the distance across the heart at its widest point ought to be about half the diameter of your whole chest on the x-ray. Manuel's heart was bigger than that -- a lot bigger. It nearly filled his chest cavity from wall to wall. And the normally black lungs had lots of white streaks, x-ray signs that they were filling with fluid. Manuel's heart was failing. He was born with a defect of his aortic valve. That's the one in between the business end of the heart and the aorta, the big artery that carries blood to all parts of the body. Every time his heart beat, some of the blood that was squeezed out leaked back into the heart, making it work harder and ultimately stretching its size. When heart muscles are stretched and stressed, for a while they get bigger and stronger -- like a body builder in the gym -- but too much stress and the muscle just quits pumping effectively. If you have heart failure, you're tired all the time and even walking from your bed to the closet can make you hungry for air. The test of heart function showed that his pumping efficiency was less than 20% of normal. Death was not far off.

We were asked to talk with Manuel about his goals of care -- what he was hoping for, and how he might achieve that. I did his interview with a Spanish interpreter; I do speak a little Spanish, but not enough for a serious conversation about issues of life and death. Manuel had been in the country for two years, working at a food processing plant and sending money home to his family. Originally he had told the hospital he was from Puerto Rico -- therefore a U.S. citizen, therefore in the country legally, therefore eligible for assistance through Medicaid if he needed it. But as we talked, he came to tell us that, in reality, he was from Guatemala. His Social Security number was a fake. He was in the country illegally -- undocumented.

With the interpreter's help, I walked Manuel through the physiology. I explained how the heart is structured, what was wrong with his valve, and why he had such trouble working at his demanding job. "The medicines will help you feel better, but they will not cure you," I said. "A new heart valve, an artificial heart valve, might work, but it may be that the only thing that will really help is a heart transplant."

An undocumented person in America is not going to get an artificial heart valve, let alone a transplant. All of us in the room -- Manuel, the interpreter, and I -- knew that. Manuel seemed to take the news stoically. He said he wanted to call his family in Guatemala to discuss things. His inclination was to return home to be in familiar surroundings when he died. The next day he said his family had asked him to keep working for a little while longer if he could, and then to come home. He was discharged with the usual heart failure drugs, a clinic appointment that he might or might not keep, and the knowledge that time was terribly short.

The interpreter is from Latin America herself, and in her position she has dealt with countless undocumented people seeking care at our facility. We talked about Manuel with heavy hearts. His family needed the money; that's why they wanted him to keep working. He had crossed two international borders -- from Guatemala into Mexico, then into the United States after a journey across the length of Mexico -- to get here, no doubt with the assistance of coyotes, professional smugglers. Coyotes are known for charging high prices for their "services" and for telling immigrants that failure to pay will bring harm not to them, but to their families back home. What will happen to Manuel's family, the interpreter and I asked ourselves. Is there an outstanding balance on his account? Will innocent people die because a poor man accepted the gigantic risk of traveling thousands of miles in search of a better life? What is the right thing for the richest country in the world to do?

I myself am the grandchild of immigrants, and this post is not intended to advance a particular stance on our current national debate about immigration. But Manuel remind me that, ultimately, we are all deeply interconnected, and that discussions about medicine cannot be separated from our larger view of who we are and what we believe. The 19th century German pathologist Rudolf Virchow is quoted (some say misquoted) as saying that "medicine is a social science, and politics is nothing but medicine writ large." Sometimes, though, it's the other way around. For Manuel, for his family, for our inability to treat him with the best we have to offer, medicine is nothing but politics writ large.

'Twas the Day Before Christmas...

...and all through the hospital there were patients and families struggling with advanced illness despite the season. (Am I the only person who takes offense when hospital units are strung with wreaths and blinking lights, and orderlies wear Santa hats? Holiday cheer at the nurses' station seems a jarring, and potentially painful, contrast to what is happening inside patients' rooms.) We met with three patients and their families on Christmas Eve day, each with its own flavor, rhythm, and backstory.

Pedro was only in his early 40s, dying of advanced liver disease. When the liver goes, often the kidneys quit, too. We call that "hepatorenal syndrome," and dialysis -- what you'd normally think of when kidney fail -- is ineffective in this circumstance. The liver and kidney experts were tinkering around the edges, giving drugs and fluids in various combinations. But the blood tests were getting worse every day.

When I sat down with Pedro, I told him there was at best a 50-50 chance he'd live for another three months. He told me that he wasn't ready to die. His father had died two years ago -- ironically from kidney failure -- and Pedro and his two brothers were worried about their mom, who was clearly beside herself with grief. I explained why dialysis wouldn't help, why the medications weren't working, and that time was very, very short. We talked about his "code status" -- would he want us to attempt to bring him back if his heart stopped? -- and he was clear that the answer was yes. He did follow our advice and signed a form naming his brother Juan as his medical power of attorney.

Next door to Pablo was Bernie, a fellow in his late 60s who'd lost his independence as multiple episodes of pneumonia sapped his strength. Those, in turn, were probably caused by his difficulty with swallowing leading to aspiration. And all of that was set on the background of longstanding lung disease from a lifetime of smoking. Bernie had already made clear to me that he wanted nothing to do with resuscitation attempts. So our family meeting -- which included his sister and his ex-wife, with whom he'd maintained a cordial relationship -- focused on what was achievable and what the road ahead might look like. Bernie desperately wanted to return home, even if he would have to accept some help there. We talked about the possibility of that happening and how it would be hard to avoid at least a short-term nursing home stay with some rehab. His sister asked me to estimate how likely it would be for Bernie to get what he wanted, and I had to tell her he was facing long odds.

From there we moved on to the ICU to meet with Paula and her family. Paula couldn't participate in our discussions. A woman in her early 70s, she'd had metastatic breast cancer diagnosed a year before. Nothing worked, and she was in the ICU on a ventilator and sedation because she'd had overwhelming sepsis and two cardiac arrests in which the doctors and nurses were able to get her heart started again. "That's what's on her advance directive," one of them told me. The form she'd completed had two choices -- essentially, "let me go" and "keep me going even if I have to spend years on machines" -- and there was writing alongside the second choice.  I took a closer look. She'd placed her initials in the margin next to the "do everything" choice and written "NO" in capital letters in the space where her initials were supposed to be. She'd filled the form out backwards, or so it seemed. Her husband, sons, and daughter all confirmed that "this has gone on too long" and "she never wanted this." They were worried about her struggling for air if she came off the ventilator, so I walked them through our process for assuring that patients don't gasp or feel like they are choking. They seemed relieved but asked for more time to think things over.

So how did things turn out for my three Christmas Eve day patients? Christmas was on a Tuesday this year. By Friday Pedro had told everyone that he was at peace with dying. He agreed to permit a natural death and, trying to comfort his mother at the same time, moved to the inpatient hospice unit. Bernie was discharged from the hospital that same Friday to a nursing home, telling us he never wanted to come back to the hospital, that he knew that time was short, and that he realized he might never get home. And all of Paula's out-of-town relatives had arrived by Thursday evening. They said their good-byes, the ventilator was discontinued, and ten minutes later she was gone.

So three families struggled with hard choices on the day before Christmas, and ultimately each made the decision that was right for them. They faced reality. But the day before Christmas had a surreal touch, too, or so it seemed to me. A local funeral home placed this advertisement in the December 24th newspaper. I quote it exactly below with the original capitalizations and punctuations -- and no, I am not making this up:

Now through December 31, 2012, receive a free metal Casket with burial pre-arrangements or a Free Urn with cremation pre-arrangements. Happy Holidays!

I hope my readers' holidays were happy even without those free gifts, and may 2013 be filled with joy and peace for you and for all who suffer, no matter what the cause.

Refusal

You know it's going to be a tough palliative care consultation if they wait until the day the patient is discharged before they call you, or if the patient is already crying when you walk in the door. With Serena, both were true. "She's being discharged to rehab today," the referring doctor told me, "but she seems reluctant to go. Can you talk with her about her goals and what she really wants?"

You might wonder why other doctors feel they need a specialist in palliative care to find out what their patients are hoping for, but such is the nature of modern medicine. Serena's first words, spoken through tears after I introduced myself, were, "Why are they sending me to rehab? I just want to die." That's the signal for many physicians to run for the exits. The experienced palliative care doc pulls a chair up close to the bed, leans forward, and asks something like, "What should I know about you to be sure you get the best care possible?" That's what I did. And so Serena told me her story:

A professional woman in her mid-sixties, she'd contracted a form of hepatitis over 20 years before. The virus had destroyed her liver. We have no good treatments for this problem, only delaying tactics, and Serena had run out of delays. Her liver disease was end-stage; she was jaundiced with a swollen belly and no energy; and she was likely to die in a few months. Her only hope was a liver transplant, but she had studied the procedure and decided that the risks weren't worth the benefits. "My liver doctor tells me to keep on getting treated," she said. "He tells me that I could see Paris. Well, I've already been to Paris four times. I'm miserable, and I don't see the point of going on."

Some patients hope they'll run into Dr. Kevorkian when they hear palliative care is coming to see them. It's my ethical responsibility to disappoint them that, no, I won't give them a shot to make them sleep forever and to tell them that, no, physician-assisted suicide is not legal in our state. I commiserated with Serena about the rehab plan. I agreed that it would probably not help and that she'd be in a nursing home soon. (She'd long passed the point where she could care for herself at home.) "But you do have an option that would get you what you seem to be hoping for," I told her. "You could simply decide to stop eating and drinking."

It turns out that death follows within a week or two after a patient elects to refuse anything to eat or drink. You'd think it's horrible, but it's not. People who've gone without eating for long periods -- hunger strikers, those on religiously motivated fasts -- say that their sense of hunger disappears after a couple of days. And the sense of thirst arises from the mouth, so keeping the mouth moist with an occasional ice chip or one of the commercial products developed for dry mouth means that the patient won't feel thirsty.

"You can make this choice anytime you like," I told her. "I can create a safe space for you in the hospital to die peacefully if you make that decision. All of our usual medications to treat pain and other symptoms will be available. And if you suddenly decide that this is a crazy idea and that what you really want is a burger and a milkshake, we'll call room service immediately." I gave Serena my card and told her that I would help her if she ever decided to call.

About a month later, she did just that. I made arrangements to bring her to my hospital, where she enrolled in hospice under the diagnosis of end-stage liver disease. I told the nurses the plan, and they told me they were in complete agreement. With that, Serena began her voluntary refusal of food and fluids.

Over the first two days, she had panicky episodes and wondered out loud if she was doing the right thing. I reminded her that the choice was completely hers, and that I could get her a glass of water in ten seconds and a tray of food in less than half an hour. She asked for and received medication for anxiety. On the third day, she requested water and a sandwich, which we provided immediately. She took a few sips and a couple of bites. Her two remaining family members arrived from out of town that same day. They all talked privately, and Serena told me that she really was done. Her relatives agreed. She declined any more food or fluids. Within 24 hours she was unarousable. Her face was relaxed, her forehead smooth, and she was breathing easily. She died two or three days later, never regaining consciousness and never showing any signs of distress. Her family thanked my staff and me for the excellent care we had provided.

When I tell this story to other doctors, some of them recoil in horror. But I think we did right by Serena. Whether you call it VSED (voluntarily stopping eating and drinking) or VRFF (voluntary refusal of food and fluids), this is a humane and painless way for a patient to take control and relieve intolerable suffering. All you have to do is say no.

Bleed Out

Charlene was tough -- feisty, independent, and absolutely clear about what she did and didn't want. And she communicated all of that without uttering a word.

Some time before our palliative care team met Charlene, she'd been diagnosed with squamous cell cancer of the throat. This is a particularly nasty form of cancer, usually associated with smoking and drinking, and difficult to treat. Charlene had gone through radiation treatments and was left with a permanent tracheostomy -- a trach ("trake") that allowed her to breathe but took away her speech. Nonetheless, with hand gestures, the use of a notepad, and -- most of all -- a set of withering facial expressions, Charlene could always get her point across.

She'd been admitted once again for mucus secretions that she couldn't clear on her own. She had a pattern of becoming frightened and showing up in the hospital's emergency department. Invariably she would be admitted for a few days. She would get some breathing treatments and would then demand to go home TODAY. Her handwritten notes always capitalized that word, or else she would write I WANT OUT NOW! We would try to talk with her about the pattern and about how accepting some help at home -- a visiting nurse, for instance -- might help keep her out of the hospital. Shaking her head violently, she always declined. She'd been like that her whole life, her family said. Her sister told us that she hadn't been inside Charlene's house for over 20 years. So we would shrug our shoulders, and Charlene and her husband would leave the hospital. You know that someone has become a "frequent flyer" when the staff takes bets about how long they'll remain out of the hospital. Charlene had been admitted at least weekly for many weeks. And to the frustration of the cancer wing staff, she insisted on remaining "full code." If her heart or breathing stopped, she wanted everything possible done to bring her back to life.

On her next to the last admission, I suggested a drug that might dry up her secretions. The hospitalist, who was in charge of her care, and I discussed the pros and cons. To my surprise, Charlene agreed to try it, and to my even bigger surprise, she said it was helping and not producing the dry mouth that patients on the medicine sometimes get. I talked with her again about accepting help. "If I try harder I can stay out," she wrote. I told her that she already was trying pretty hard. Borrowing a line from TV's Dr. Phil, I asked, "How's that working out for you?" She responded with a look that I'd come to understand meant "you are an idiot doctor who doesn't know a thing about me," or something like that. I made one more pitch for a home health nurse, which worked about as well as all previous pitches. So with a bit of mucus rattling in her trach, Charlene and her husband once again set out for home.

No one was surprised when she was readmitted four or five days later. But on her third hospital day, we were surprised to hear a Code Blue -- a cardiac arrest -- called for her room. The cancer eroded through a blood vessel near her trach, and there was nothing the code team could do to save her.

"A blessing," someone on the cancer wing said. "I don't think so," I replied. "She clearly had something in her life that, to her, was worth living for. I think that explains why she never changed her code status."

Charlene had a bad death by the standards that we in hospice and palliative care usually measure deaths by. But to the very end she appeared to have the life that she wanted -- indeed, the life she insisted on. "Do not go gentle into that good night...Rage, rage against the dying of the light," the poet Dylan Thomas wrote. Had she heard those lines, I have no doubt that Charlene would have given me one of her looks, and then nodded in agreement.

A Tale of Two Cancers

Magdalena and Eric were across the hall from each other on the cancer wing. She was 72 and he was 27. What a difference a flipped digit makes.

Magdalena's widespread ovarian cancer had been diagnosed just two months before we met. She'd undergone heroic surgery, but it had not cured her cancer. And she had developed a non-healing abdominal wound that drained constantly Our wound care nurse is pretty experienced with this sort of thing, and she said this was one of the worst she'd ever seen. So Magdalena had spent over a month in the hospital, much of it in ICU, before being transferred to oncology. The surgeons and hospitalists involved in her care told the family they should consider hospice. They would hear nothing of it. "Well, how about palliative care?" they asked. It never works when my specialty is presented like that, as if it were hospice without the H. So naturally they rejected palliative care, too.

It was only when most of the family -- especially her oldest son Miguel, who ran the show -- recognized that she was in terrible pain that they asked if I would come and see her. She couldn't speak above a whisper, her forehead and brow were scrunched up, and she grimaced occasionally as she told me her pain was pretty bad. I looked at what she'd been receiving for pain. She had the right dose but the wrong schedule. I made a minor adjustment, and in an hour her pain was gone. Miguel and the other family members -- children, grandchildren, great-grandchildren -- all thanked me profusely. I took them aside and told them that she was not likely to survive the night.

There's an old saying that God is kind to fools and young doctors. There ought to be one that says God is particularly kind to doctors who are foolish enough to make predictions. The next morning Magdalena was sitting up, speaking in a normal tone, making jokes and thoroughly enjoying her family. "Be grateful for this gift," I told Miguel and some of the grandchildren. Magdalena's family enjoyed a few more days with her before she slipped into unconsciousness and died a peaceful death.

Across the hall, Eric was dealing with the knowledge that his stomach cancer -- very aggressive and very widespread when it had first been discovered three years earlier -- had come roaring back. And so had his pain. The nurses and I struggled for two weeks to get Eric's pain under control. Nothing worked -- not even three separate narcotics, each given in huge doses, along with several other so-called adjunctive medications designed to work in tandem with the pain-killers.

Eric had a young wife, a devoted family, and a deep religious faith that God would cure him. He, too, would hear nothing of hospice. So I offered him what we call palliative sedation. We'd administer medications that were intended to make him unconscious, since that seemed to be the only way to control his terrible pain. Most often, palliative sedation is not discontinued and the patient remains unconscious until death. For Eric I was offering a respite for a day or two; my intention was to stop the drug then and allow him to wake up. It's been reported that some patients awaken from respite sedation with their pain greatly relieved. So we tried it for two days. When the sedative was stopped, Eric had one good day before the cancer pain came roaring back again.

I kept adjusting the doses, tinkering here and there, hoping to get the desired result. Every time I went to see him -- and I was there several times a day -- Eric thanked me and shook my hand. He offered to pray for me, and I told him that many people were praying for him.

Three weeks into the hospitalization, Eric's pain suddenly worsened and then he could not be aroused. His abdomen became distended, his bowel sounds disappeared, and he winced when I pushed on his belly and then let go. He'd clearly had a catastrophic event -- maybe internal bleeding, maybe a hole in his intestine. We had come to the end of the line. Eric's wife wondered aloud about transferring him to a nearby academic center, but she came to understand that the outcome would not change. I strongly recommended restarting the sedative drug, and she and the rest of the family agreed. Eric's last day was spent in the company of many friends and family who prayed and wept at his bedside. I had struggled for three weeks to get him comfortable, and at least for the last twelve hours of his life he was.

Not all suffering is physical, and not all suffering can be relieved. It was easy for me to feel like a success with Magdalena. It was not so easy to avoid feeling like a failure with Eric. Not that Eric, or his wife, or any of his family ever uttered a word of criticism. They seemed to understand that I was doing the best I could. But it was hard for me to look in the mirror each morning and not feel the weight of Eric's unrelieved suffering.

Medicine, like politics, is the art of the possible. In palliative care you never know whether your next patient will be an Eric or a Magdalena. All that you do know is that you have to do what you can.

Way to Go

Bertie was 91, and in an earlier, less politically correct era she would have been called spry. She'd been enjoying her life, which was happily free of major, chronic illness. She was surrounded by children, grand-children, and great-grandchildren, along with a network of friends and neighbors in her rural town. And she'd been married for over 60 years, although lately she'd been visiting her husband at a rehab center where he was recovering from a hip fracture. Bertie had barely been sick a day in her life.

About ten days before she died, Bertie had developed a stomach ache -- nothing serious, and nothing that had gotten in her way. Eight days before she died, though, the pain got much worse -- so much so that her family rushed her to the hospital at two o'clock in the morning. She was pale, weak, and in pain with a dangerously low blood pressure. Yes, the family said, we want everything done.

"Everything" meant a rapid-fire evaluation using the best that modern medicine has to offer. And that evaluation quickly revealed the problem. Bertie had a mass in her liver that was bleeding into her belly. It appeared to be a metastasis from the breast cancer that was visible on her CT scan and which also had spread to lymph glands in both armpits. Happily, the bleeding appeared to stop on its own, and after some fluids and transfusions Bertie appeared stable. Four hours after arriving in the ER, she was sent to intensive care.

At 9:30 that morning I walked into ICU planning to make rounds with the team. The attending asked me to see Bertie instead. Her life-prolonging options were bleak. Surgery was basically out of the question. The ICU team had thought about embolization -- threading a thin catheter into the bleeding area and shooting pellets into the vessels to cut off the blood supply -- but that would leave dead tissue behind to form a focus of infection that also would take her life. When the ICU folks can't think of anything else, they tend to think of me.

Bertie was being attended to by two of her children and several grand-kids. I sat down alongside her bed, introduced myself, and asked, "So what's your understanding of what's going on with you right now?" She looked me in the eye and said, "I'm going to die, and probably soon." "How are you doing with that?" I asked. "Oh, just fine," she replied, "I'm old, I've had a good life, and nobody lives forever."

I looked around and saw her children nodding in agreement, although they were tearful. "Well," I said, "let me explain where we might go from here." It's been my experience that patients and families often feel they have just two choices -- sticking with conventional, cure-oriented medicine (no matter how remote the possibility of cure), or doing nothing. "I'm here to tell you," I said to Bertie and her children, "that there's a third choice -- assuring your comfort for however much time you have left."

Bertie gave me a big smile and told me I was the best doctor she had ever met. Her smile wasn't forced; it was as if her whole body was smiling, and radiant, and at peace. Fourteen hours after arriving in the ER, Bertie was transferred to the inpatient hospice unit. She spent a couple of comfortable days there and then decided that she wanted to go home. The hospice team continued to support her and her family at home, where she died peacefully a week after our meeting in the ICU.

Now, I'm not at all sure if I was the best doctor Bertie had ever met. But I am sure that Bertie had a wonderful life and that she approached its end with the courage and grace that we all hope to achieve. She was clear-eyed and clear-headed every step of the way. Like everyone else she came into this world crying and screaming. But unlike so many, she showed us how to have a comfortable and gentle passing from this life to whatever may lie beyond.

Way to go, Bertie -- way to go.

Short Week

Because Christmas fell on Sunday this year, many people -- myself included -- got the next day off and  worked just four days of the last week of the year. But "Death Takes a Holiday" is a movie title, not a description of what actually happens whether we're working or not. During this short week, I was asked to help with seven patients with life-threatening illness, seven families struggling with mortality during what we lightheartedly call "the holidays":

• An 82 year old man, previously healthy, whose wife found him on the floor and unresponsive. He'd sustained a large stroke. After several days in the hospital, his family asked for a feeding tube to be placed. They wanted him to have a shot at rehab. We talked about this at length. They understood my concern that they were betting on a long shot. The next day, he had pneumonia and sepsis and had pulled out the tube. We had another visit, the goal changed, and this proud husband and father moved to the inpatient hospice unit.
• A woman in her mid-eighties who had been failing in recent months at a nursing home was admitted to the hospital for pneumonia and heart failure. After a couple of days, her respiratory system gave out. There had been confusion about her so-called "code status," so she was transferred to the ICU as a matter of policy. I met her the next day. She was awake but incoherent, struggling to breathe, and terrified. Her daughter told me of recent and remote family losses -- the patient's great-grand-daughter's friend murdered, a son dying in infancy long ago -- that made it hard to make decisions. Still, she was able to get to a decision to emphasize her mother's comfort exclusively, and she accepted my assurances that comfort was within reach.
• An emaciated 60-year-old man transferred to our hospital from a rural nursing home because of wounds on his feet. He had a diagnosis of multiple sclerosis and was full of contractures, his hips and legs bent as far as they would go and stuck that way. The skin on both feet had largely come off, and he was left with non-healing ulcers that bled and were infected, and through which his muscles and tendons could be seen. Because I'm known to have an interest in palliative wound care, I was asked to get involved. I made a few suggestions, but we all knew that his wounds would never heal and that, when he returned home, his obvious neglect would continue.
• A pleasant woman in her late eighties whose metastatic lung cancer had been diagnosed just a month ago. She'd rejected even so-called palliative chemotherapy by saying, "I'm an old woman. What's the point?" But she said it with a smile on her face. Admitted to the hospital because her heart failure made breathing difficult, she and her daughter were delighted to talk with me about returning home with hospice, making it possible for her to be relaxed and surrounded by her loved ones.
• A young man, just 26 and newly married, whose last two years have been consumed by struggling with a gastrointestinal cancer, initially contained but now returning with a vengeance. He'd spent much of the last three or four months in hospitals, and now he was hospitalized again with escalating pain. A hovering, controlling set of relatives complicated his efforts to cope with his illness and relate to his new wife. We worked on pain -- successfully -- and what might be called "relatives management."
• A woman in her mid-fifties who'd spent the last year caring for her mother. Her sense of duty led her to ignore the lump in her breast that broke through the skin, drained and smelled, and caused her much pain. Finally she could ignore it no more. But because of her deep reservations about the health care system, she opted to travel offshore to receive a combination of conventional chemotherapy and various nutritional supplements that were supposed to strengthen her immune system. Meanwhile her pain, shortness of breath, and nausea all escalated. She arrived at our hospital with a significant symptom burden and much ambivalence about what she should do next. Happily, I was able to relieve much of her physical suffering. Within 24 hours she was pain-free, nausea-free, eating bacon and eggs, and experiencing no drainage or odor from her visible breast cancer. This cleared some emotional space, so to speak, and at the end of the day she and her family had decided on hospice.
• Finally, the most remarkable patient of the short week: a 91 year old woman, vigorous and in excellent health, who arrived in the emergency department in the middle of the night with sudden, severe abdominal pain. Thanks to modern imaging technology, it was quickly learned that she had bled from a large tumor in her liver that in turn was a metastasis from a breast cancer -- all of this previously undiagnosed. She moved to ICU where I was asked to see her with children and grand-children in attendance. With a serene and radiant smile she told me that yes, she understood that she was dying and would probably die soon, and no, she didn't want an operation and yes, she'd like to be comfortable and preferably at home. Fourteen hours elapsed between her arrival in the ED and her transfer to the inpatient hospice unit, and two days after that she went home. I told her it had been a privilege to help care for her during this phase of life's journey, and then there were hugs all around.

This is the work that my colleagues around the world and I do every day. Helen Keller once said, "Although the world is full of suffering, it is full also of the overcoming of it." It was a short week but a good week, because I helped overcome more suffering than I caused.

"The richness of palliative care," writes Dr. Geoffrey Dunn, "lies in its recognition of the possible where there is uncertainty." We have to believe that comfort and peace -- for the gravely ill and their families, for the poor and the hungry, for neighbors and peoples wracked by ancient conflict -- are always possible if we take up the responsibility of the overcoming of suffering.

May this new year of 2012 bring you comfort, and peace, and love, and rich, rich possibilities.