The Ethics of Refusing Treatment (Part 2)
Ok, if you haven't read my first post, "Ethics and the Value of Life (Part 1)" please read that first. Here I'm going to pick up on the question of, "Ok, we don't get to determine the value of life; but how then do we make the difficult end-of-life decisions such as when to refuse medical treatment? And how do we do so without devaluing life?" As I was struggling with these questions, in light of the Terri Schiavo fight, I read a short chapter from a book titled, "Bioethics: A Primer for Christians" by Gilbert Meilander. He directly addressed these issues in a very helpful way in Ch. 7 "Refusing Treatment." I'm going to basically summarize and comment on his advice for Christians who want to face these issues with a proper Christian ethic.
First, to give us a framework for considering this, he names two opposite extremes to avoid in caring for the dying. Meilander says, "On the one hand, we ought not choose death or aim at death. But on the other hand, neither should we act as if continued life is the only, or even the highest, good. It is not a god, but a gift of God. Thus we should neither aim at death nor continue to struggle against it when its time has come. 'Allowing to die' is permitted; killing is not. Within these limits lies the sphere of our freedom." (p.69) Ok, so that gives us something to start with, that in making end-of-life decisions we shouldn't be deliberately aiming at death; but on the other hand we shouldn't deny death when it comes, as if we must live on at all costs.
Now secondly, there arises the need for some clarification. What is the difference between committing suicide and refusing medical treatment, if they both end in death? Or for that matter, a soldier going into a battle where he faces almost certain death? Here Meilander points out the difference between the intention/aim of an action, and its result. A person refusing medical treatment and a soldier going into a battle could both do so with the explicit aim of ending their life--in which case it would be suicide. But it would not be suicide in all circumstances. A person may under certain circumstances refuse treatment and a soldier can go into battle without 'aiming' at their own death, even if that is the almost certain result of their action. Meilander again, "This distinction between an act's aim and its result is crucial to bear in mind when we consider decisions to refuse or withdraw treatment. The result of such decisions may be that death comes more quickly than it might have. Nevertheless, the fact that we ought not to aim at death for ourselves or another does not mean that we must always do everything possible to oppose it. Life is not our god, but a gift of God; death is a great evil, but not the ultimate evil. There may come a time, then, when it is proper to acknowledge death and cease to oppose it. Our aim in such circumstances is to care for the dying person as best we can--which now, we judge, means withdrawing rather than imposing treatment." (p.71)
Ok, now to the meat of the issue. What are the practical guidelines for ethically determining when to refuse treatment? Meilander starts by pointing out the ambiguity of the traditional categories of ordinary and extraordinary/heroic care. The difficulty of this terminology has apparently increased with the changes and advancements in medical care, and also the fact that these terms are not a 'moral' distinction. So for an example of their ambiguity, is Terri's feeding tube 'ordinary' or 'extraordinary' care? This is certainly a debated point, and you can see that the categories don't provide any moral guidelines. Food and water can hardly be considered anything but ordinary, but is the method by which they introduced extraordinary? Yet many otherwise healthy individuals often depend on feedings tubes. So Meilander discards these categories in favor of a more precise and helpful solution.
The first criteria he gives for determining whether medical treatment should be refused is "if it is useless. Usefulness is, of course, relative to the patient's condition. Many treatments may be helpful, even lifesaving, for some patients but of little use to others. Moreover, a treatment once helpful might cease to be when the patient's disease has progressed to a new stage." (p.72) So for a person who is 'irretrievably dying,' certain medical care will be useless. Some may even impose greater burdens on the patient, which I will discuss later. He also points out the difference between someone who is 'irretrievably dying' and 'terminally ill.' A terminally ill patient has a certain death approaching, but it may be months or even years away, and there may be treatments that are useful to them in their condition. If we apply this first criteria to Terri Schiavo, we can unequivocally say that food and water are useful to her in her condition, as she requires no other medical treatment, and her body can digest the food just like any healthy individual. Furthermore, we also must point out that she is NOT dying. Her 'quality of life' may not be what some desire (see previous post), but she is not in pain or in the stages of dying. Other than obtaining nutrition via a feeding tube, she is a healthy, but disabled woman.
Before moving on from this point, it is necessary to treat the manner in which the first guideline might be abused, according to Meilander. He provides an example of a child born with Down's syndrome, having an obstruction in their esophagus. For the child to survive and be able to be fed, a surgery must be performed, a surgery that would never be denied an otherwise 'normal' infant. "Yet there have been cases in which parents--upheld by courts--have refused treatment for such an infant. Has that child simply been 'allowed to die'? Or have those responsible for its care taken aim at its life?" (p. 73) He says that the most accurate description of the parents action in this scenario is that they have refused surgery so that the child will die, rather than allowing it to die. Obviously the surgery is 'useful' to the child. Perhaps the parents thought that the child's life was 'useless' because of its handicap. This is one example of how the criteria can be abused. Meilander makes an excellent point here: "The language of 'personhood' has encouraged such self-deception. It has encouraged us to think that we do no wrong when we deliberately 'let die' (that is, refuse treatment in order to aim at the death of) those human beings who lack some of the distinctively human cognitive capacities." (p. 73) The question that needs to be asked in evaluating medical options is whether it will benefit the life that the patient has. The question that is characteristic of abusing this criteria is to ask 'Is this patient's life a beneficial one, a life worth living?' The latter takes aim not at treatment, but a person's life. That is not 'allowing to die'.
Ok, finally to the second criteria for refusing treatment. Even if a treatment is "useful and perhaps even lifesaving [it] may sometimes be excessively burdensome. Because life is not our god, we need not accept all burdens--no matter how great--in order to stay alive." (p.74) In other words, this means that "we might rightly refuse even useful treatment that would prolong our life for a significant period of time if that treatment really does carry with it significant burdens. To reject or withdraw treatment because of its burdens is still a refusal of treatment, not of life. From among the various lives still available to a suffering patient--some longer than others; some filled with more burdens than others--we choose one life in particular. Just as the soldier going on a suicidal mission chooses not to die but to live in a certain way, recognizing that to live in this way may mean not to live as long, so also the patient refusing an excessively burdensome treatment still chooses life--one particular life from among the several still available. " (p.74) One could perhaps think (my example, if it fits :) of a terminal cancer patient refusing treatments that might help destroy the cancer growth, but otherwise ravish the body with severe side effects. Perhaps the excessive burden of additional suffering caused by the useful treatments is not worth it to the patient in the long run.
In discussing the possible abuse of this second criteria, Meilander provides the scenario of Karen Quinlan and Nancy Cruzan, both young women who were in a "persistent vegetative state and were fed through a tube to sustain their life. Both had suffered irreversible loss of the higher brain functions that make consciousness and self-awareness possible. We might easily be tempted to think that their lives were useless, that it was a burden even to have such a life. That is an understandable thought, for none of us would choose such a life for ourselves if given alternatives. But if we act on such a thought and withdraw the feeding tube, the burden at which we are taking aim is not treatment but life itself." (p.74) He adds that rejecting treatment because 'the life itself is a burden' constitutes not only rejecting treatment, but also rejecting life. Then we have "ceased to care for that person as best we can in the time and place he has been given." (p.75) At this point it is necessary to point out some similarities and differences between Schiavo's case and Quinlan & Cruzan. All three suffered severe brain damage, and it appears that in Schiavo's case as well, it may be largely irreversible. And of course all three were on feeding tubes. But, a key difference is that Schiavo is conscious, and there is significant evidence to contest her diagnosis of being in a 'persistent vegetative state (PVS)'. And even if her life is considered 'burdensome' by some, Terri Schiavo's parents and siblings are willing to assume that 'burden' of care. Regardless, the question of refusing treatment should not be based on the 'burden' of a person's life, but on the excessive burden of their treatment. Neither can it be shown in Schiavo's case that the simple treatment of a feeding tube is 'excessively burdensome.'
So now we have some working definitions that can help guide us in end-of-life decision making, especially regarding when to refuse medical treatment. We must ask ourselves, "Is the treatment useless or useful to the patient?" If it is useless, it can ethically be refused. But under certain circumstances a useful treatment may be refused, if the treatment, not their life itself is 'excessively burdensome'. If either criteria is satisfied, we may refuse medical treatment without the fear that we are entering the realm of suicide or euthanasia. To evaluate our decision in this regard, we should also ask the question, "Is my choice aiming at ending life?" If the choice is aimed at a life rather than just a treatment, I would posit that we are trying to assume God's role in determining when we die. Also, are we trying to determine the value of their life based on their 'quality of life?' If so, we are again overstepping our bounds. Now certainly I don't pretend to believe that these decisions are easy or even always black and white. But these guidelines can help us use Christian ethics regarding the value of life, to make difficult decisions while avoiding certain obvious unethical avenues. My next post will deal with some potential implications of the outcome of the Terri Schiavo case, and other miscellaneous thoughts.
First, to give us a framework for considering this, he names two opposite extremes to avoid in caring for the dying. Meilander says, "On the one hand, we ought not choose death or aim at death. But on the other hand, neither should we act as if continued life is the only, or even the highest, good. It is not a god, but a gift of God. Thus we should neither aim at death nor continue to struggle against it when its time has come. 'Allowing to die' is permitted; killing is not. Within these limits lies the sphere of our freedom." (p.69) Ok, so that gives us something to start with, that in making end-of-life decisions we shouldn't be deliberately aiming at death; but on the other hand we shouldn't deny death when it comes, as if we must live on at all costs.
Now secondly, there arises the need for some clarification. What is the difference between committing suicide and refusing medical treatment, if they both end in death? Or for that matter, a soldier going into a battle where he faces almost certain death? Here Meilander points out the difference between the intention/aim of an action, and its result. A person refusing medical treatment and a soldier going into a battle could both do so with the explicit aim of ending their life--in which case it would be suicide. But it would not be suicide in all circumstances. A person may under certain circumstances refuse treatment and a soldier can go into battle without 'aiming' at their own death, even if that is the almost certain result of their action. Meilander again, "This distinction between an act's aim and its result is crucial to bear in mind when we consider decisions to refuse or withdraw treatment. The result of such decisions may be that death comes more quickly than it might have. Nevertheless, the fact that we ought not to aim at death for ourselves or another does not mean that we must always do everything possible to oppose it. Life is not our god, but a gift of God; death is a great evil, but not the ultimate evil. There may come a time, then, when it is proper to acknowledge death and cease to oppose it. Our aim in such circumstances is to care for the dying person as best we can--which now, we judge, means withdrawing rather than imposing treatment." (p.71)
Ok, now to the meat of the issue. What are the practical guidelines for ethically determining when to refuse treatment? Meilander starts by pointing out the ambiguity of the traditional categories of ordinary and extraordinary/heroic care. The difficulty of this terminology has apparently increased with the changes and advancements in medical care, and also the fact that these terms are not a 'moral' distinction. So for an example of their ambiguity, is Terri's feeding tube 'ordinary' or 'extraordinary' care? This is certainly a debated point, and you can see that the categories don't provide any moral guidelines. Food and water can hardly be considered anything but ordinary, but is the method by which they introduced extraordinary? Yet many otherwise healthy individuals often depend on feedings tubes. So Meilander discards these categories in favor of a more precise and helpful solution.
The first criteria he gives for determining whether medical treatment should be refused is "if it is useless. Usefulness is, of course, relative to the patient's condition. Many treatments may be helpful, even lifesaving, for some patients but of little use to others. Moreover, a treatment once helpful might cease to be when the patient's disease has progressed to a new stage." (p.72) So for a person who is 'irretrievably dying,' certain medical care will be useless. Some may even impose greater burdens on the patient, which I will discuss later. He also points out the difference between someone who is 'irretrievably dying' and 'terminally ill.' A terminally ill patient has a certain death approaching, but it may be months or even years away, and there may be treatments that are useful to them in their condition. If we apply this first criteria to Terri Schiavo, we can unequivocally say that food and water are useful to her in her condition, as she requires no other medical treatment, and her body can digest the food just like any healthy individual. Furthermore, we also must point out that she is NOT dying. Her 'quality of life' may not be what some desire (see previous post), but she is not in pain or in the stages of dying. Other than obtaining nutrition via a feeding tube, she is a healthy, but disabled woman.
Before moving on from this point, it is necessary to treat the manner in which the first guideline might be abused, according to Meilander. He provides an example of a child born with Down's syndrome, having an obstruction in their esophagus. For the child to survive and be able to be fed, a surgery must be performed, a surgery that would never be denied an otherwise 'normal' infant. "Yet there have been cases in which parents--upheld by courts--have refused treatment for such an infant. Has that child simply been 'allowed to die'? Or have those responsible for its care taken aim at its life?" (p. 73) He says that the most accurate description of the parents action in this scenario is that they have refused surgery so that the child will die, rather than allowing it to die. Obviously the surgery is 'useful' to the child. Perhaps the parents thought that the child's life was 'useless' because of its handicap. This is one example of how the criteria can be abused. Meilander makes an excellent point here: "The language of 'personhood' has encouraged such self-deception. It has encouraged us to think that we do no wrong when we deliberately 'let die' (that is, refuse treatment in order to aim at the death of) those human beings who lack some of the distinctively human cognitive capacities." (p. 73) The question that needs to be asked in evaluating medical options is whether it will benefit the life that the patient has. The question that is characteristic of abusing this criteria is to ask 'Is this patient's life a beneficial one, a life worth living?' The latter takes aim not at treatment, but a person's life. That is not 'allowing to die'.
Ok, finally to the second criteria for refusing treatment. Even if a treatment is "useful and perhaps even lifesaving [it] may sometimes be excessively burdensome. Because life is not our god, we need not accept all burdens--no matter how great--in order to stay alive." (p.74) In other words, this means that "we might rightly refuse even useful treatment that would prolong our life for a significant period of time if that treatment really does carry with it significant burdens. To reject or withdraw treatment because of its burdens is still a refusal of treatment, not of life. From among the various lives still available to a suffering patient--some longer than others; some filled with more burdens than others--we choose one life in particular. Just as the soldier going on a suicidal mission chooses not to die but to live in a certain way, recognizing that to live in this way may mean not to live as long, so also the patient refusing an excessively burdensome treatment still chooses life--one particular life from among the several still available. " (p.74) One could perhaps think (my example, if it fits :) of a terminal cancer patient refusing treatments that might help destroy the cancer growth, but otherwise ravish the body with severe side effects. Perhaps the excessive burden of additional suffering caused by the useful treatments is not worth it to the patient in the long run.
In discussing the possible abuse of this second criteria, Meilander provides the scenario of Karen Quinlan and Nancy Cruzan, both young women who were in a "persistent vegetative state and were fed through a tube to sustain their life. Both had suffered irreversible loss of the higher brain functions that make consciousness and self-awareness possible. We might easily be tempted to think that their lives were useless, that it was a burden even to have such a life. That is an understandable thought, for none of us would choose such a life for ourselves if given alternatives. But if we act on such a thought and withdraw the feeding tube, the burden at which we are taking aim is not treatment but life itself." (p.74) He adds that rejecting treatment because 'the life itself is a burden' constitutes not only rejecting treatment, but also rejecting life. Then we have "ceased to care for that person as best we can in the time and place he has been given." (p.75) At this point it is necessary to point out some similarities and differences between Schiavo's case and Quinlan & Cruzan. All three suffered severe brain damage, and it appears that in Schiavo's case as well, it may be largely irreversible. And of course all three were on feeding tubes. But, a key difference is that Schiavo is conscious, and there is significant evidence to contest her diagnosis of being in a 'persistent vegetative state (PVS)'. And even if her life is considered 'burdensome' by some, Terri Schiavo's parents and siblings are willing to assume that 'burden' of care. Regardless, the question of refusing treatment should not be based on the 'burden' of a person's life, but on the excessive burden of their treatment. Neither can it be shown in Schiavo's case that the simple treatment of a feeding tube is 'excessively burdensome.'
So now we have some working definitions that can help guide us in end-of-life decision making, especially regarding when to refuse medical treatment. We must ask ourselves, "Is the treatment useless or useful to the patient?" If it is useless, it can ethically be refused. But under certain circumstances a useful treatment may be refused, if the treatment, not their life itself is 'excessively burdensome'. If either criteria is satisfied, we may refuse medical treatment without the fear that we are entering the realm of suicide or euthanasia. To evaluate our decision in this regard, we should also ask the question, "Is my choice aiming at ending life?" If the choice is aimed at a life rather than just a treatment, I would posit that we are trying to assume God's role in determining when we die. Also, are we trying to determine the value of their life based on their 'quality of life?' If so, we are again overstepping our bounds. Now certainly I don't pretend to believe that these decisions are easy or even always black and white. But these guidelines can help us use Christian ethics regarding the value of life, to make difficult decisions while avoiding certain obvious unethical avenues. My next post will deal with some potential implications of the outcome of the Terri Schiavo case, and other miscellaneous thoughts.
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