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.
Saturday, May 11, 2013
Sunday, March 17, 2013
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.
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.
Sunday, February 24, 2013
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.
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.
Friday, January 25, 2013
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.
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.
Sunday, December 30, 2012
'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.
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.
Tuesday, December 11, 2012
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.
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.
Tuesday, October 16, 2012
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.
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.
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