The good death
October 28, 2003 | 12:00am
As a young medical student many years ago, in what was then the only Catholic medical school in the country, we were taught to fight death to the end. To surrender was to admit failure. Indeed, physicians of my generation were educated in an almost warrior-like mentality: Defeat disease before it defeats the body.
However, these days, medicine is enduring a highly publicized crisis of conscience. Patients in their final weeks of life seem more concerned about dying with dignity than extending their days. And what’s becoming increasingly clear is that we know very little about death and the dying process.
Thus, many physicians and scientists are now re-examining their precious all-out attitude to avoid death at all cost. Instead, there are now attempts to define the qualities needed to bring about the "good death." True, it’s partly tilting at the windmills. And no death is good. But no death need to be worse than another. Indeed, many feel it is now time for hospitals to begin focusing on making its wards and wings a source of comfort to the dying.
In a multicenter study known as SUPPORT (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments), researchers found that the death that was feared most by patients was "dying in pain, unnoticed and isolated from loved ones." The authors of the study, published in the Annals of Internal Medicine, expressed concern that of the 46 percent of patients who died during the study, more than half spent their last moments in a hospital. Moreover, about 40 percent of those patients were in either severe or moderate pain for most or all of the last three days of life – pain, the authors argue, that could have been alleviated through medication.
The patients included in the study were those over the age of 80, with known terminal illnesses. When asked what they think a good death should be, many replied, "It’s a clean bed, with the family around, closing our eyes and drawing a last breath." But that clearly did not happen. Nearly half of the 4,100-some patients who died received "extraordinary measures" to keep them alive, including intubation, mechanical ventilation, and attempted resuscitation.
"There is a need to improve the dialogue between the dying and their doctors," says Albert W. Wu of the Johns Hopkins School of Public Health, one of the centers involved in the study. "Physicians," says Wu, "should be more sensitive to end-of-life issues, including pain management, and patient preferences about their care." In most cases, observes Wu, patients and their loved ones should have been expecting death soon, but were not. Doctors continued to perform life-saving therapies even as their patients’ prognoses worsened, sending the unrealistic message that survival was possible.
"I think that people did not understand that there were many things that they should have been beginning to attend to," says Wu. Calling key relatives, for example, is something that too often comes too late, although it can make a tremendous positive difference in a person’s final hours or days, he notes.
Sometimes, families debate about whether to summon relatives. Delay is a way of blocking out the reality of the imminent death, says Wu. This sort of denial is unfortunate, Wu says, because it deprives the patient of emotional succor. Even worse, pretending optimistically that death is not at hand may lead to treatment decisions that compound pain. Says Wu of the families in SUPPORT, "People were thinking about doing everything to prolong life to the exclusion of thinking about what impact that might have on the patient’s comfort, both physically and emotionally."
Wu and his co-authors believe that end-stage care is not given the respect it deserves in medical training. "It’s interesting how we use language," he says. "We talk about heroic measures, extraordinary measures, but most of those words don’t have negative connotations. We don’t say that patients were tormented until they died, but if we’re to believe the results of this study, people were in pain until the end."
Fortunately, things are changing. "We are now making pain control a priority," says Stuart Grossman, director of Neurooncology at Johns Hopkins. Grossman laments that sometimes, patients themselves tend to hide the severity of their pain from doctors and nurses, who in turn don’t pry as deeply as they should. Patients often feel that cancer by definition is painful, so there’s no reason to being a big fuss. They are also concerned that more pain equals more severe disease, and they don’t want to distract their caregivers from treating their disease. Still others worry that taking too much medication will render them incoherent.
Grossman also pins some of the blame for pain relief on an institutional mindset that makes it a low priority. He finds a "gross imbalance" between the amount of attention devoted to palliative care in oncology, for example, and the attention given to new therapies. "It sends the wrong message that it is more important to be researching a brand new drug than trying to make people more comfortable," he says.
Too often, the mental pain experienced by dying patients also goes unaddressed, Wu and his co-authors found. Dying patients frequently report feelings of intense sadness, depression and anxiety – in fact, more than 60 percent of the SUPPORT participants had severe emotional symptoms, according to family members. Wu says that those problems are readily treated – as long as they are recognized.
If SUPPORT uncovered some distressing aspects of dying, it also suggested a few ways to ameliorate them. Foremost, says Wu, is to make hospice care an integral part of end-stage care. Where hospital deaths can be lonely, painful, and sterile, dying at home in private comfort and familiar surroundings can help ease the trauma of life’s final passage, according to two physicians in the SUPPORT study.
In hospice care, treatment is purely palliative and is planned and performed by an interdisciplinary team – including nursing, medical social services, spiritual care, social work, and home health aid. There may be a pharmacist on the staff to do pain and symptom management. And a physician to guide in palliative medicine. In hospice care, the patient can get hospital-quality care – except extraordinary measures to keep them alive – without a hospital-like atmosphere. In this country, Makati Medical Center pioneered hospice care, and a private organization, HOME, Inc. (tel. nos.: 750-5143 and 814-0645), offers good hospice services.
SUPPORT has also recommended that patients and their families, look into Advance Directives (a terminal-care plan forged by patients in the event that they can’t communicate their treatment wishes) and DNRs (a request not to be revived if their heart should stop). It is best to consult a lawyer on the legal implications of such a move and to seek assistance in the preparation of such documents.
SUPPORT emphasized that there is a need to include a more metaphysical approach to caregiving – especially for those facing death. The scientific community, after all, has increasingly recognized the links between faith and good health. Several recent studies have shown that strong religious conviction correlates with healthy living and longer life.
Dr. Thomas Corson, professor of the Religion in Medicine course at Johns Hopkins, notes, "It’s very hard to care for people unless you have a good sense of what their religious conviction is."
Historically, after all, the concepts of healing the body and the soul were not dichotomized. "Priests were also healers then. There was an angelic conjunction between divinity and the physician. And ignoring this same relationship today is just poor medicine," says Corson, who has prayed and read Scripture with his dying patients throughout his career.
I am sure that many of us will not mind having a Dr. Corson take care of us when the end comes – praying and reading the Scripture to us during our life’s final passage. As we remember our departed relatives and friends on All Saints’ Day this Saturday, we can only hope and pray that our own death, when it comes, will be a good one.
However, these days, medicine is enduring a highly publicized crisis of conscience. Patients in their final weeks of life seem more concerned about dying with dignity than extending their days. And what’s becoming increasingly clear is that we know very little about death and the dying process.
Thus, many physicians and scientists are now re-examining their precious all-out attitude to avoid death at all cost. Instead, there are now attempts to define the qualities needed to bring about the "good death." True, it’s partly tilting at the windmills. And no death is good. But no death need to be worse than another. Indeed, many feel it is now time for hospitals to begin focusing on making its wards and wings a source of comfort to the dying.
The patients included in the study were those over the age of 80, with known terminal illnesses. When asked what they think a good death should be, many replied, "It’s a clean bed, with the family around, closing our eyes and drawing a last breath." But that clearly did not happen. Nearly half of the 4,100-some patients who died received "extraordinary measures" to keep them alive, including intubation, mechanical ventilation, and attempted resuscitation.
"There is a need to improve the dialogue between the dying and their doctors," says Albert W. Wu of the Johns Hopkins School of Public Health, one of the centers involved in the study. "Physicians," says Wu, "should be more sensitive to end-of-life issues, including pain management, and patient preferences about their care." In most cases, observes Wu, patients and their loved ones should have been expecting death soon, but were not. Doctors continued to perform life-saving therapies even as their patients’ prognoses worsened, sending the unrealistic message that survival was possible.
"I think that people did not understand that there were many things that they should have been beginning to attend to," says Wu. Calling key relatives, for example, is something that too often comes too late, although it can make a tremendous positive difference in a person’s final hours or days, he notes.
Sometimes, families debate about whether to summon relatives. Delay is a way of blocking out the reality of the imminent death, says Wu. This sort of denial is unfortunate, Wu says, because it deprives the patient of emotional succor. Even worse, pretending optimistically that death is not at hand may lead to treatment decisions that compound pain. Says Wu of the families in SUPPORT, "People were thinking about doing everything to prolong life to the exclusion of thinking about what impact that might have on the patient’s comfort, both physically and emotionally."
Wu and his co-authors believe that end-stage care is not given the respect it deserves in medical training. "It’s interesting how we use language," he says. "We talk about heroic measures, extraordinary measures, but most of those words don’t have negative connotations. We don’t say that patients were tormented until they died, but if we’re to believe the results of this study, people were in pain until the end."
Fortunately, things are changing. "We are now making pain control a priority," says Stuart Grossman, director of Neurooncology at Johns Hopkins. Grossman laments that sometimes, patients themselves tend to hide the severity of their pain from doctors and nurses, who in turn don’t pry as deeply as they should. Patients often feel that cancer by definition is painful, so there’s no reason to being a big fuss. They are also concerned that more pain equals more severe disease, and they don’t want to distract their caregivers from treating their disease. Still others worry that taking too much medication will render them incoherent.
Grossman also pins some of the blame for pain relief on an institutional mindset that makes it a low priority. He finds a "gross imbalance" between the amount of attention devoted to palliative care in oncology, for example, and the attention given to new therapies. "It sends the wrong message that it is more important to be researching a brand new drug than trying to make people more comfortable," he says.
Too often, the mental pain experienced by dying patients also goes unaddressed, Wu and his co-authors found. Dying patients frequently report feelings of intense sadness, depression and anxiety – in fact, more than 60 percent of the SUPPORT participants had severe emotional symptoms, according to family members. Wu says that those problems are readily treated – as long as they are recognized.
In hospice care, treatment is purely palliative and is planned and performed by an interdisciplinary team – including nursing, medical social services, spiritual care, social work, and home health aid. There may be a pharmacist on the staff to do pain and symptom management. And a physician to guide in palliative medicine. In hospice care, the patient can get hospital-quality care – except extraordinary measures to keep them alive – without a hospital-like atmosphere. In this country, Makati Medical Center pioneered hospice care, and a private organization, HOME, Inc. (tel. nos.: 750-5143 and 814-0645), offers good hospice services.
SUPPORT has also recommended that patients and their families, look into Advance Directives (a terminal-care plan forged by patients in the event that they can’t communicate their treatment wishes) and DNRs (a request not to be revived if their heart should stop). It is best to consult a lawyer on the legal implications of such a move and to seek assistance in the preparation of such documents.
SUPPORT emphasized that there is a need to include a more metaphysical approach to caregiving – especially for those facing death. The scientific community, after all, has increasingly recognized the links between faith and good health. Several recent studies have shown that strong religious conviction correlates with healthy living and longer life.
Dr. Thomas Corson, professor of the Religion in Medicine course at Johns Hopkins, notes, "It’s very hard to care for people unless you have a good sense of what their religious conviction is."
Historically, after all, the concepts of healing the body and the soul were not dichotomized. "Priests were also healers then. There was an angelic conjunction between divinity and the physician. And ignoring this same relationship today is just poor medicine," says Corson, who has prayed and read Scripture with his dying patients throughout his career.
I am sure that many of us will not mind having a Dr. Corson take care of us when the end comes – praying and reading the Scripture to us during our life’s final passage. As we remember our departed relatives and friends on All Saints’ Day this Saturday, we can only hope and pray that our own death, when it comes, will be a good one.
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