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.
Tuesday, October 1, 2013
Thursday, June 6, 2013
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.
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.
Saturday, May 11, 2013
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.
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.
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.
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