“Of all the forms of inequality, injustice in health care is the most shocking and inhumane”……………..Martin Luther King, Jr.
A thirty year old man, fearing he has pneumonia but more afraid of an emergency visit he can not pay for, visits a feed store seeking veterinary grade antibiotics. A 45 year old man, dropped from Medicaid and eating one meal a day to be able to afford his medications, tearfully rejects a suggestion that he go to the food bank. Customers at a convenience store drop spare change in a jar to help a child get cancer treatment. Meanwhile, every day across this country, patients at the end of their lives receive millions of dollars of publicly funded intensive care and other “rescue medicine” in futile attempts to extend those lives.
Our health care system is a disgrace. The U.S. ranks 37th among nations in health systems comparison. Our rank in life expectancy is 29th and falling. The Commonwealth Fund survey now suggests that the number of uninsured in the U.S. has risen to 48 million, continuing a 20 year upward trend. Lack of insurance causes 18,000 deaths annually with immeasurable suffering and loss of productivity. Medical illness and debt account for 50% of personal bankruptcies. Among 11 developed countries the U.S ranks last in outcomes related to 14 health indicators and in patient satisfaction, but first in expenditure and prescriptions per person. We spend 50% more than any other country to achieve poorer health outcomes while denying even basic health care to one out of six of our fellow citizens. Every hour another Oregonian loses health insurance and every day another dies simply due to the lack of coverage. American medicine is without goals, priorities, accountability, acceptable quality or safety. As the above cases suggest, it fails to recognize basic human dignity and allocates resources in a fundamentally unjust and morally indefensible way.
Two recent attempts to improve coverage point out the absurdity and injustice of continuing to try to change this system in an incremental way. Health Savings Accounts ( HSAs ) allow individuals, most of whom are already insured, to move from conventional health insurance to more heavily tax favored plans. This will financially benefit the wealthy ( those who can afford to actually fund their HSAs) and the healthy ( those who will be able to allow their accounts to grow and rollover each year). The effect will be to remove the healthier and wealthier from conventional insurance, raising the premiums for the sicker and poorer who are forced to remain. Fewer companies and individuals will be able to afford health insurance and the number of uninsured will rise further. One estimate suggests that HSAs will add 600,000 to the ranks of the uninsured. If that were not bad enough, there is evidence that individuals in these “ consumer directed” plans more often forego important acute and preventive care. This is progress?
Medicare Part D is a more blatant travesty. Forgetting for now that it is wildly more expensive and complicated than it had to be, it serves as a prime example of the fundamental injustice that characterizes our health care system. In essence, 43 million citizens already receiving publicly funded healthcare ( Medicare ) and as a group among the wealthiest Americans, were given an additional drug coverage benefit ( at a $800 billion cost over the next ten years, to be paid mostly by future generations ) while 48 million uninsured and poorer citizens, most of whom live in working families and pay taxes that pay for health care for others, received nothing. This is fair?
How did we get such a broken and unjust system? The United States, alone among developed countries, fails to extend a right to health care to all its citizens. Alone among those nations, it fails to understand that basic health care is as fundamental to the infrastructure of society as an education system. We cling to 40-60 year old insurance mechanisms ( Medicaid, Medicare and employer based plans) that do not make sense in today’s world. Our idolatry of market systems has caused us to abandon traditional American pragmatism and notions of community. Despite ample evidence, we refuse to see that buying an appendectomy will never be like buying a hammer and there is no “market” for health insurance for poor people. We decry “rationing” of health care but our system rations by income and chronic disease ( Medicaid), age and disability ( Medicare), race ( Indian Health), military service (VA), employment status, etc. We are fearful of “socialized medicine”, forgetting that education, defense, police and fire protection are “socialized” because, like basic health care, they are essential to the foundation of any society and serve the population most efficiently when paid for by and delivered to all citizens. Confusing health care with health, we continue an illness care model and technological emphasis while systematically undermining support for primary care, public health and prevention where the greatest improvements in the health of societies occur.
Why are we incapable of change? Certainly, trying to fit the square peg of health care into the round hole of a market economy is part of the problem. In addition, our politicians continue the assault on publicly funded health care for the poor even though it does not save money and perpetuates the cycle of rising costs and more uninsured. Well entrenched and profitable pharmaceutical and health insurance industries scoop up premium dollars and buy more lobbyists and another cycle continues, resulting in fiascos such as the Medicare drug benefit. Medical professional organizations and large health care delivery systems have also failed us. Late to even acknowledge the failings of our system, they remain largely self- interested, scrambling for their share of a $1.9 trillion industry. Organized medicine, it seems, is not organized around justice.
Sadly, our churches have failed us as well. They remain locked largely in a charity model of addressing the injustices of society, willing to engage the political process on issues of personal morality, but largely silent when it comes to the staggering and shameful degrees of hunger, homelessness and medical indigence in our society. These problems will not be solved by another food bank, shelter or free clinic but by changes in the priorities of the whole society expressed as public policy. The kind of moral force and public witness of Dr. King and the black churches, so crucial to the success of the civil rights movement of the 1960’s, is seldom in evidence today. As Jim Wallis author of God’s Politics has pointed out, budgets and bills are moral documents and our religious communities could do more to bring moral values to the discussion of public policy.
Ultimately the moral failing belongs to us as individuals. Whether or not we belong to a particular religious tradition, we must see as shameful a system that forces individuals to seek health care from a feed store; that makes patients choose between food and medicine; that has no resources for a child’s cancer treatment, but unlimited resources to spend in an apparent belief that death is a preventable disease.
The United States is a long way from a just, sustainable and morally defensible health care system but the process may have begun. Learn more about the Archimedes Movement and how you can be part of this grass roots effort at http://www.joinam.org/. For those interested in pursuing the topic of health care reform as a justice issue, join the discussion at
Michael Grady, M.D.
Silverton
Showing posts with label Health Care. Show all posts
Showing posts with label Health Care. Show all posts
Jun 25, 2006
Apr 12, 2005
End of Life Reflections - Michael Grady, M.D.
March 31, 2005
This morning Terri Schiavo, a 41 year old brain damaged woman died in a Florida hospice ending what has been a tragic story on many levels. Since presenting very briefly some of the issues in this case at The Death and Dying conference at St. Paul’s some six weeks ago, the spotlight has come to focus intensely on Mrs. Schiavo’s case and the equally tragic division in her family. As a family physician for some 29 years, a geriatrician and student of medical ethics for the last 16 years and as a practicing Catholic who has studied Catholic thought on end of life issues, I offer these reflections.
From a medical ethics standpoint I believe this case is as straightforward as ethical cases get. It is well established since the Karen Ann Quinlan case some 30 years ago that adult patients, even those unable at the time to express or confirm their wishes, have the right to refuse any and all medical care. If it can be reasonably known what the patient would have wanted in any situation those wishes must be followed. In this case the patient’s legally recognized ranking surrogate decision maker (her husband) had to the satisfaction of several court reviews made the case that his wife would not want continued life support in something like her current condition. The legitimacy of his claim and his suitability to be her surrogate were extensively litigated and upheld. A guardian appointed by the court to represent Mrs. Schiavo’s best interests concurred with the decision to remove her feeding tube. End of case from a medical ethics perspective.
The problem is that a family/medical/ ethical/judicial matter has become a Right to Life issue with the polarity and zealotry that characterize these discussions in American society. I believe that characterizing this case in those terms is wrong and those claiming an unequivocal Catholic position that would demand life support in situations like this are mistaken. Asserting that Terri Schiavo has a right to a feeding tube leads to the logical inference that there exists a moral obligation to accept such care and a duty to provide it in all cases. If patients in persistent vegetative state are truly alive and deserve this protection, then analogous to the argument used in asserting a right to life for a fetus, there is no “choice”. The right is inviolable. I think this is untenable and offer the following questions as ways to frame thinking about this case.
Are patients in a persistent vegetative state alive?
Patients with PVS are severely brain damaged, most commonly the result of prolonged lack of oxygen to the brain, as was the case with Mrs. Schiavo. Though many “vegetative” activities – respiration, temperature control, digestion, sleep/wake cycles persist, higher brain “cortical” function is irreversibly lost. These persons show no evidence of awareness of self or environment, behavioral responses to stimuli, language comprehension or expression. They are incontinent of bladder and bowels, require total care, cannot swallow and thus need artificially supplied nutrition and hydration. They frequently get pneumonia, urinary tract infections and skin ulcers even with excellent care. They don’t get better and therapy to improve their function is not helpful. Many neurologists have examined Terri Schiavo over the years and found her to meet the criteria for PVS. The CT scans shown in the media revealed a startling degree of brain loss and the diagnosis really was never in doubt.
It is clear from polls that the vast majority of people would not choose this level of existence for themselves or a loved one. In my own professional career I have helped patients complete or otherwise reviewed hundreds of advance directives. Never have I had a patient indicate that they would want a feeding tube in this setting of severe brain damage. Even if one concedes that her wishes were never known, what are the chances that a vibrant 25-year-old woman having suffered this devastating injury would have chosen to have a feeding tube for the next 15 years?
I have heard Fr. John Touhey, an ethicist with the Providence Health System speak of life as “possibility.” As Catholics we have embraced this in our formulations around the traditional life issues. We recognize the tremendous possibility in the fetus so oppose abortion. We understand the possibility for growth in patients facing death and oppose assisted suicide. There is intrinsic dignity and the possibility for personal and spiritual growth in even those who have committed heinous crimes, so we stand against capital punishment. We support the right of all persons to adequate food, housing and medical care because these things make the rest of life possible. But the absence of cortical functioning: the awareness and self-awareness, reasoning and interaction that distinguish human life are absent in PVS. It seems in these cases that life is no longer possible.
Is the provision of food and water so basic that it must be supplied in all cases?
I would make a distinction between “food and water” and artificial nutrition and hydration. If you can consume it yourself, mom gives it to you, you can buy it in a store or find it on a menu then it is food and water. If the material is a balanced chemical mixture of elemental compounds and nutrients that must be ordered by a physician from a pharmacy and can only be administered by a licensed medical professional through a surgically implanted tube in the abdominal wall then it can rightly be said to be a medical intervention. As such it is no different than other medical interventions like a ventilator, IV fluids or antibiotics.
Do patients with PVS suffer if a feeding tube is withheld or withdrawn?
Of course no one can know for sure. Suffering is a subjective experience. However, the medical literature and the experience of hospice workers suggest that patients don’t suffer. There is no evidence that patients in these circumstances experience hunger or thirst or that this withholding is painful. In fact, the gradual shutdown of organ systems induces a lack of appetite and dying in this manner is among the more peaceful ways.
What is Catholic teaching in this area?
It is not clear anymore. Traditionally, Catholics have not been obligated to accept medical treatments that they consider burdensome or “extraordinary”. Since 1992, U.S. Catholic Bishops have encouraged the continued “feeding “of PVS patients, but have deferred to families and physicians the final decision in these cases. In March 2004 the Pope declared that “ the administration of food and water, even when supplied by artificial means, always represents a natural means of preserving life, not a medical act and is, as such, morally obligatory”. His remarks were based, in part at least, on the assumption that there is diagnostic and prognostic uncertainty in PVS. However, when the criteria for PVS are met there is no recovery and the prognosis is not in doubt. Since then, as near as I can tell, there has not been any significant change in the care these patients get in Catholic hospitals. It is still left to families and their physicians to make these decisions and advance directives are being honored. These decisions are made every day in hospitals, clinics, nursing homes and hospices. At least once a month I sign an order foregoing feeding tube placement in a patient should they become like Terri Schiavo. I do this humbly, recognizing patient autonomy and the primacy of family in these decisions. I believe like many other Catholics that part of respecting life is recognizing when it has ended, when it has stopped being possible.
Michael Grady, M.D.
This morning Terri Schiavo, a 41 year old brain damaged woman died in a Florida hospice ending what has been a tragic story on many levels. Since presenting very briefly some of the issues in this case at The Death and Dying conference at St. Paul’s some six weeks ago, the spotlight has come to focus intensely on Mrs. Schiavo’s case and the equally tragic division in her family. As a family physician for some 29 years, a geriatrician and student of medical ethics for the last 16 years and as a practicing Catholic who has studied Catholic thought on end of life issues, I offer these reflections.
From a medical ethics standpoint I believe this case is as straightforward as ethical cases get. It is well established since the Karen Ann Quinlan case some 30 years ago that adult patients, even those unable at the time to express or confirm their wishes, have the right to refuse any and all medical care. If it can be reasonably known what the patient would have wanted in any situation those wishes must be followed. In this case the patient’s legally recognized ranking surrogate decision maker (her husband) had to the satisfaction of several court reviews made the case that his wife would not want continued life support in something like her current condition. The legitimacy of his claim and his suitability to be her surrogate were extensively litigated and upheld. A guardian appointed by the court to represent Mrs. Schiavo’s best interests concurred with the decision to remove her feeding tube. End of case from a medical ethics perspective.
The problem is that a family/medical/ ethical/judicial matter has become a Right to Life issue with the polarity and zealotry that characterize these discussions in American society. I believe that characterizing this case in those terms is wrong and those claiming an unequivocal Catholic position that would demand life support in situations like this are mistaken. Asserting that Terri Schiavo has a right to a feeding tube leads to the logical inference that there exists a moral obligation to accept such care and a duty to provide it in all cases. If patients in persistent vegetative state are truly alive and deserve this protection, then analogous to the argument used in asserting a right to life for a fetus, there is no “choice”. The right is inviolable. I think this is untenable and offer the following questions as ways to frame thinking about this case.
Are patients in a persistent vegetative state alive?
Patients with PVS are severely brain damaged, most commonly the result of prolonged lack of oxygen to the brain, as was the case with Mrs. Schiavo. Though many “vegetative” activities – respiration, temperature control, digestion, sleep/wake cycles persist, higher brain “cortical” function is irreversibly lost. These persons show no evidence of awareness of self or environment, behavioral responses to stimuli, language comprehension or expression. They are incontinent of bladder and bowels, require total care, cannot swallow and thus need artificially supplied nutrition and hydration. They frequently get pneumonia, urinary tract infections and skin ulcers even with excellent care. They don’t get better and therapy to improve their function is not helpful. Many neurologists have examined Terri Schiavo over the years and found her to meet the criteria for PVS. The CT scans shown in the media revealed a startling degree of brain loss and the diagnosis really was never in doubt.
It is clear from polls that the vast majority of people would not choose this level of existence for themselves or a loved one. In my own professional career I have helped patients complete or otherwise reviewed hundreds of advance directives. Never have I had a patient indicate that they would want a feeding tube in this setting of severe brain damage. Even if one concedes that her wishes were never known, what are the chances that a vibrant 25-year-old woman having suffered this devastating injury would have chosen to have a feeding tube for the next 15 years?
I have heard Fr. John Touhey, an ethicist with the Providence Health System speak of life as “possibility.” As Catholics we have embraced this in our formulations around the traditional life issues. We recognize the tremendous possibility in the fetus so oppose abortion. We understand the possibility for growth in patients facing death and oppose assisted suicide. There is intrinsic dignity and the possibility for personal and spiritual growth in even those who have committed heinous crimes, so we stand against capital punishment. We support the right of all persons to adequate food, housing and medical care because these things make the rest of life possible. But the absence of cortical functioning: the awareness and self-awareness, reasoning and interaction that distinguish human life are absent in PVS. It seems in these cases that life is no longer possible.
Is the provision of food and water so basic that it must be supplied in all cases?
I would make a distinction between “food and water” and artificial nutrition and hydration. If you can consume it yourself, mom gives it to you, you can buy it in a store or find it on a menu then it is food and water. If the material is a balanced chemical mixture of elemental compounds and nutrients that must be ordered by a physician from a pharmacy and can only be administered by a licensed medical professional through a surgically implanted tube in the abdominal wall then it can rightly be said to be a medical intervention. As such it is no different than other medical interventions like a ventilator, IV fluids or antibiotics.
Do patients with PVS suffer if a feeding tube is withheld or withdrawn?
Of course no one can know for sure. Suffering is a subjective experience. However, the medical literature and the experience of hospice workers suggest that patients don’t suffer. There is no evidence that patients in these circumstances experience hunger or thirst or that this withholding is painful. In fact, the gradual shutdown of organ systems induces a lack of appetite and dying in this manner is among the more peaceful ways.
What is Catholic teaching in this area?
It is not clear anymore. Traditionally, Catholics have not been obligated to accept medical treatments that they consider burdensome or “extraordinary”. Since 1992, U.S. Catholic Bishops have encouraged the continued “feeding “of PVS patients, but have deferred to families and physicians the final decision in these cases. In March 2004 the Pope declared that “ the administration of food and water, even when supplied by artificial means, always represents a natural means of preserving life, not a medical act and is, as such, morally obligatory”. His remarks were based, in part at least, on the assumption that there is diagnostic and prognostic uncertainty in PVS. However, when the criteria for PVS are met there is no recovery and the prognosis is not in doubt. Since then, as near as I can tell, there has not been any significant change in the care these patients get in Catholic hospitals. It is still left to families and their physicians to make these decisions and advance directives are being honored. These decisions are made every day in hospitals, clinics, nursing homes and hospices. At least once a month I sign an order foregoing feeding tube placement in a patient should they become like Terri Schiavo. I do this humbly, recognizing patient autonomy and the primacy of family in these decisions. I believe like many other Catholics that part of respecting life is recognizing when it has ended, when it has stopped being possible.
Michael Grady, M.D.
Apr 11, 2005
Preparing for Death - By Loris Buccola
Over the past several years following my diagnosis with an incurable and degenerative disease, realizing that I will not live forever and probably die sooner than I would have imagined, I offer the following thoughts and experiences.
Death Is for the Living.
Although in one sense death is the "great divide", in another sense it is also part of being alive. To avoid thinking about our death is to avoid experiencing life to the fullest. What most of us fear, I think is not so much death itself but the pain and suffering, physical, emotional and spiritual which comes before it. All of us, I suppose, in one way hope that we will die suddenly and painlessly. On the other hand we also worry that if death comes this way we would have no chance to say our goodbyes, make amends, or otherwise get our affairs in order so we can continue to control things from the grave.
I imagine that my death, by the time I am actually there, will be a welcome and peaceful release. Although at this moment I am very much alive and glad of it, thoughts of my death are both comforting and daunting. I especially don't like the thought of leaving everyone and everything I love "behind". But, if my idea of time and eternity turns out to be correct, I will not be losing anything. From the perspective of the other side of the divide, we will all "arrive" in eternity and the full experience of God's presence simultaneously.
Keeping death "daily before our eyes".
St. Benedict recommended for his monks to make meditation on their death a daily occurrence. I must have retained this beautiful thought from the time of my religious conversion in early adulthood and few years of monastic life. I have always thought about how and when my death would come and how I would handle it if I had any sign that it was imminent. Having done this, on and off, throughout my life, i.e. mentally preparing myself for the "big one", has enabled me to cope with my own present physical decline. It was a surprise, but not for long, as I reminded myself that difficult things do not happen only to me. They are universal experiences to which I and everyone else are subjected.
I am not recommending a morbid obsession with all the bad things that could happen. I am suggesting a realistic appraisal of how life goes, while at the same time appreciating the gifts available in every moment. Part of the process of preparing for one's own death is a mental task. Another part is the willingness to experience whatever comes along without dreading it ahead of time. This is a spiritual skill which comes with time, desire, intention and prayer. Be careful what you pray for. It won't always be fun but it will always carry with it an opportunity to keep growing up, i.e. to be realistic and idealistic at the same time.
One way to follow this wisdom is to think of dying as many deaths, beginning with birth. Birth is a kind of death, to the perfect security of our mother's womb. It begins a whole life of "dying" to the illusions about the security and predictability of life. It continues every time we are faced with the opportunity to let go of the old and welcome the new. When we resist this process we preserve the illusion that our life here and now is permanent. When we welcome these changes, painful as they often are, we take another step in the direction of the final death, the entrance into the ultimate reality of eternity. A close friend of mine with a debilitating and incurable cancer wrote to me about this recently, "Still, I would go in a heartbeat w/out fear, not hating earth, but loving heaven more."
No matter how much we try to keep this fact in mind, we seem to be surprised every time another event challenges it. The Buddha was supposed to have recommended to a woman in an inconsolable grief that she go around the village collecting three mustard seeds from every house in which there had been no deaths. She came back empty-handed and grateful for the experience. She had discovered that she was not alone, that loss and death are universal experiences.
Death, Alone and Together
In one sense we must all face our own death alone. No one can do it for us. This may be one of the most frightening aspects of thinking about and experiencing our death. On the other hand, we also know that no one ever really does anything alone or isolated from the human community. Living and dying are corporate experiences. The way each of us face our own death with courage, calm and acceptance profoundly affects how the rest of us will be able to do it also.
The best "preparation" for death is a life lived with and for the body of Christ, within the oneness of all creation. This is not something that we can begin only when we think we are getting closer to death, when we are aging or seriously ill, or otherwise exposed to danger. If we wait until then, chances are it will be too late although in another sense it is never too late to get with the program.
Welcoming Life and Death
In light of the death of Pope John Paul II this week and recent discussions about moral and ethical decisions regarding life support, I offer the following comments based on my personal experience with a degenerative and untreatable disease.
The situation for most people with ALS is unique in that we retain full cognitive and sensory abilities, but lose the ability to communicate what we are thinking, feeling and needing as well as the ability to swallow and breathe on our own. There rarely is any "persistent vegetative state" unless something else occurs (heart attack, stroke, etc.). We know this ahead of time and are free to decide whether and how we wish to be kept alive. This includes decisions about whether to make use of other means of breathing (mechanical ventilation) and getting adequate nutrition and hydration (abdominal feeding tube).
Several months ago I chose to have a feeding tube surgically inserted, anticipating the time when I will not be able to swallow. I also use a breathing assist machine (BiPAP) at night to avoid respiratory failure during sleep and facilitate a good nights sleep. Both of these feel like friendly devices which make life more comfortable and livable.
Many people with ALS decide to do neither and simply allow themselves to die in the normal course of the disease when further treatment would be useless. This does not seem to be any different than someone with a terminal cancer, diabetes or chronic heart disease. I respect the right and moral choice of a person with a terminal disease to refuse further unnecessary treatment and to die as pain-free as possible.
We have always made a moral and ethical distinction between taking a life (as in assisted suicide) and allowing someone to die in the normal process of living. I believe that this position is quite clearly "pro-life". To affirm life is to welcome death as the entrance to new life.
Loris Buccola
February 2005
Revised April 2005
Death Is for the Living.
Although in one sense death is the "great divide", in another sense it is also part of being alive. To avoid thinking about our death is to avoid experiencing life to the fullest. What most of us fear, I think is not so much death itself but the pain and suffering, physical, emotional and spiritual which comes before it. All of us, I suppose, in one way hope that we will die suddenly and painlessly. On the other hand we also worry that if death comes this way we would have no chance to say our goodbyes, make amends, or otherwise get our affairs in order so we can continue to control things from the grave.
I imagine that my death, by the time I am actually there, will be a welcome and peaceful release. Although at this moment I am very much alive and glad of it, thoughts of my death are both comforting and daunting. I especially don't like the thought of leaving everyone and everything I love "behind". But, if my idea of time and eternity turns out to be correct, I will not be losing anything. From the perspective of the other side of the divide, we will all "arrive" in eternity and the full experience of God's presence simultaneously.
Keeping death "daily before our eyes".
St. Benedict recommended for his monks to make meditation on their death a daily occurrence. I must have retained this beautiful thought from the time of my religious conversion in early adulthood and few years of monastic life. I have always thought about how and when my death would come and how I would handle it if I had any sign that it was imminent. Having done this, on and off, throughout my life, i.e. mentally preparing myself for the "big one", has enabled me to cope with my own present physical decline. It was a surprise, but not for long, as I reminded myself that difficult things do not happen only to me. They are universal experiences to which I and everyone else are subjected.
I am not recommending a morbid obsession with all the bad things that could happen. I am suggesting a realistic appraisal of how life goes, while at the same time appreciating the gifts available in every moment. Part of the process of preparing for one's own death is a mental task. Another part is the willingness to experience whatever comes along without dreading it ahead of time. This is a spiritual skill which comes with time, desire, intention and prayer. Be careful what you pray for. It won't always be fun but it will always carry with it an opportunity to keep growing up, i.e. to be realistic and idealistic at the same time.
One way to follow this wisdom is to think of dying as many deaths, beginning with birth. Birth is a kind of death, to the perfect security of our mother's womb. It begins a whole life of "dying" to the illusions about the security and predictability of life. It continues every time we are faced with the opportunity to let go of the old and welcome the new. When we resist this process we preserve the illusion that our life here and now is permanent. When we welcome these changes, painful as they often are, we take another step in the direction of the final death, the entrance into the ultimate reality of eternity. A close friend of mine with a debilitating and incurable cancer wrote to me about this recently, "Still, I would go in a heartbeat w/out fear, not hating earth, but loving heaven more."
No matter how much we try to keep this fact in mind, we seem to be surprised every time another event challenges it. The Buddha was supposed to have recommended to a woman in an inconsolable grief that she go around the village collecting three mustard seeds from every house in which there had been no deaths. She came back empty-handed and grateful for the experience. She had discovered that she was not alone, that loss and death are universal experiences.
Death, Alone and Together
In one sense we must all face our own death alone. No one can do it for us. This may be one of the most frightening aspects of thinking about and experiencing our death. On the other hand, we also know that no one ever really does anything alone or isolated from the human community. Living and dying are corporate experiences. The way each of us face our own death with courage, calm and acceptance profoundly affects how the rest of us will be able to do it also.
The best "preparation" for death is a life lived with and for the body of Christ, within the oneness of all creation. This is not something that we can begin only when we think we are getting closer to death, when we are aging or seriously ill, or otherwise exposed to danger. If we wait until then, chances are it will be too late although in another sense it is never too late to get with the program.
Welcoming Life and Death
In light of the death of Pope John Paul II this week and recent discussions about moral and ethical decisions regarding life support, I offer the following comments based on my personal experience with a degenerative and untreatable disease.
The situation for most people with ALS is unique in that we retain full cognitive and sensory abilities, but lose the ability to communicate what we are thinking, feeling and needing as well as the ability to swallow and breathe on our own. There rarely is any "persistent vegetative state" unless something else occurs (heart attack, stroke, etc.). We know this ahead of time and are free to decide whether and how we wish to be kept alive. This includes decisions about whether to make use of other means of breathing (mechanical ventilation) and getting adequate nutrition and hydration (abdominal feeding tube).
Several months ago I chose to have a feeding tube surgically inserted, anticipating the time when I will not be able to swallow. I also use a breathing assist machine (BiPAP) at night to avoid respiratory failure during sleep and facilitate a good nights sleep. Both of these feel like friendly devices which make life more comfortable and livable.
Many people with ALS decide to do neither and simply allow themselves to die in the normal course of the disease when further treatment would be useless. This does not seem to be any different than someone with a terminal cancer, diabetes or chronic heart disease. I respect the right and moral choice of a person with a terminal disease to refuse further unnecessary treatment and to die as pain-free as possible.
We have always made a moral and ethical distinction between taking a life (as in assisted suicide) and allowing someone to die in the normal process of living. I believe that this position is quite clearly "pro-life". To affirm life is to welcome death as the entrance to new life.
Loris Buccola
February 2005
Revised April 2005
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