ames is a seventy-two-year-old man with end-stage dementia who was transferred from another hospital where he had been treated for two weeks for multiple medical problems. He had been living in a skilled nursing facility for over four years. His son, Paul, requested the transfer when the outside hospital recommended comfort-focused care; two other hospitals had refused transfer when learning about James’s condition. At the time of transfer James had sepsis from two multidrug-resistant organisms, respiratory failure requiring ventilatory support, renal insufficiency, pancytopenia, and hypotension requiring vasopressors. He has severe contractures and foot drop, has a feeding tube, and has been nonverbal for several
months. Paul is requesting full code and treatment focused on recovery despite James’s extremely poor prognosis. Paul is James’s only child, and James’s wife is deceased. Paul says he has the “gift of prophecy” and knows for certain when God is speaking to him. “God,” he says, “doesn’t lie.” He says that he and his father spent years preaching together and have witnessed many healings. He believes that they are being “rebuked” because at a time when his father was too tired to travel much, they held fewer revivals and did not save enough souls. Paul’s medical literacy is extremely limited. He has been fasting (reporting a fifty-pound weight loss) and praying. Paul states that God has told him that
He will heal his father, that with enough prayer, James will rise from the bed, walk out of the hospital, and continue his ministry with Paul. Paul cannot or will not supply a patient-centered narrative of values. Their pastor says that James told him many times over the years that he would not want to be kept alive in a condition like this, that he was ready to “go home” to the Lord whenever the Lord was ready for him. The pastor has talked with Paul on many occasions but to no avail. James’s condition has worsened slowly. He has been minimally responsive at best since admission. He has almost no urine output and does not breathe over the ventilator. He is extremely volume overloaded; his toenails have bloodied and popped off. By hospital-day twenty-one, he had only corneal reflexes, indicating severe and irreversible loss of brain function. The medical team is troubled; if James is to stay on the ventilator, he will need a tracheostomy, but this would only further prolong what has already been an agonizingly prolonged dying process. Paul continues to pray for his father to get up.
commentary
pital policy, moral sensibility, and common sense, carries the risk that they will lose in a court of law or public opinion. And whenever the institution is at risk, the community is at risk for loss of trust in their source of heath care. Part of the ethical response, then, is to weigh the relative vulnerabilities: how likely is the risk, how bad the consequences, and who and how many will be affected? In this case, one possible course of action would be to invoke the institution’s futility policy (or “medically nonbeneficial treatment” policy). Of course, treatment in this situation may be worse than nonbeneficial; if James can experience pain and discomfort, it is causing grave harm. In contrast, if he has lost the neurological ability to experience
pain, then he may be “beyond harm,” and continued treatment may be “merely” nonbeneficial. Most states have some statutory law that would support the unilateral withholding or withdrawing of nonbeneficial care, provided that other methods of solving the conflict have been exhausted, and proper procedure observed. However, without case law to support this policy, and especially in a climate of distrust fostered by cases in public and social media, hospitals may rightly be wary of invoking it. Institutional risk should be assessed, and steps taken to reduce it. Such risk can be mitigated, in part, by proceeding carefully and compassionately. While others on the medical team have contributing roles, the physician
case study
Faith and Futility in the ICU
J
by Annette Mendola
T
here are many people made vulnerable in this situation, and each deserves respect. James is vulnerable to invasive, unwanted treatments and a disrupted end of life. Paul is vulnerable to despair because he is about to lose his father, his hopes for continuing the work he loved, and potentially his faith in God. The hospital staff members are vulnerable to burnout and moral distress due to providing care that seems fruitless at best and, sometimes, even cruel. The institution is vulnerable because setting limits on care, even when in compliance with statutory law, hosJanuary-February 2015
H AS TI N GS C E N TE R RE P O RT
9
bears responsibility for knowing the patient’s goals and whether they are medically attainable under the circumstances. The physician also bears responsibility for knowing whether a requested treatment is likely to achieve the stated goals. In this case, the goal that Paul has articulated (that his father will get up, whole and well, and go back to preaching with him) is not medically attainable. Since health care professionals have responsibilities to families as well as patients, to pursue it anyhow might be justifiable if, for example, it would help Paul through the denial phase of the grieving process. James might be beyond harm, but Paul is not. Could treating James’s respiratory failure help to heal Paul’s grief? Since Paul’s expectation is far from medically reasonable, and since he cannot apprehend the possibility that his
petition to God might not be granted, Paul appears to be in profound denial rather than simply an unusual theological position. Offering a tracheostomy in order to continue using the ventilator indefinitely, then, is not a gesture of respect for his religious belief so much as a failure to acknowledge the “elephant in the room.” To ask if he wants to continue with the ventilator (or even if he thinks his father would want to continue on it) reinforces his belief that the ventilator provides a reasonable chance for his father to recover. Coupling the offer with stern warnings and dire prognostication does not help Paul understand the situation. It fosters only a sense of distrust and introduces feelings of mutual dislike. In this case, offering treatment that cannot achieve the goal Paul has in
mind is not only an abnegation of responsibility to offer only effective forms of care but also an abnegation of the responsibility to address the complicated grief with which he presents. If a requested treatment will not benefit the patient, the physician should investigate whether providing some such treatment is likely to ease the grieving process or, alternatively, to exacerbate it. Other members of the hospital’s staff—from nursing, social work, ethics, and pastoral care, for instance—can be called on to help. Treatments that cannot benefit the patient and are likely to further complicate grief in families should not be offered. Situations like this call for carefully crafted interdisciplinary care to address the multidimensional needs of both the patient and family members.
commentary
standard of care, providers should look for an opportunity to accommodate the request or propose a compromise. Consider the refusal of blood transfusions by Jehovah’s Witnesses. Western medicine has done much to accommodate this request, such as developing alternatives to whole blood products and respecting a competent adult’s refusal even if it will lead to death. But when Jehovah’s Witnesses refuse a transfusion for a child, this decision is denied. From an ethical perspective, there are limits to accommodation, and a child’s well-being is one of those limits. The case at hand provides another opportunity to define the limits of religiously based decision-making. Paul is making a decision based on his own beliefs. If his decision were based on what James would have wanted, or if Paul’s request were clearly in James’s best interests, this case would not have raised any flags, but Paul’s decision seems to conflict with both James’s wishes and best interests. As a rule, a surrogate’s request should not be honored if there is strong evidence that it conflicts with the patient’s own beliefs and wishes. If the surrogate’s request seems to be in line with the patient’s wishes but does not seem to be in the patient’s best interests, then caregivers should determine whether the request is in keeping with
the teachings of the patient’s religious community. For example, if a Jehovah’s Witness is a surrogate for another adult Jehovah’s Witness and refuses a blood transfusion for the patient (and say it is unclear how committed the patient is to the faith and to this particular teaching), then the surrogate’s request should be honored because it conforms to a well-known teaching of the community. However, if the surrogate’s request contradicts the religious community’s beliefs (say the Jehovah’s Witness surrogate refuses a blood transfusion and all partial-blood products) and it is unclear whether the patient would side with the surrogate over the community, then the surrogate’s request should be denied. This is a way of inferring what the patient would want if he or she were able to choose; in other words, the teachings of the community become a substitute for an advance directive. Other limits may need to be considered as well, such as whether the request harms other patients, family members, or health care providers. In this case, however, Paul’s request is in conflict with James’s wishes, his best interests, and the teachings of their religious community. For these reasons, the request should not be honored.
by Gregory L. Bock
T
his is a case in which the faith-based requests of a surrogate decisionmaker conflict with the standard of care. From the medical perspective, James’s condition is futile. From the perspective of faith, at least according to what Paul believes, changing the code status and pursuing comfort care would be tantamount to disobeying God. Religious beliefs deserve to be taken seriously because they can define who we are on an existential level and give us purpose, meaning, and hope. In the clinic, religious beliefs should be treated with extra care because patients and families are vulnerable and religion may be the only source of comfort. This means that caregivers should patiently listen to patients and family members articulate their beliefs and try to understand these from their point of view, asking, for example, how the patient and family understand the illness, how they explain its cause, and what they think is the best course of treatment. If nothing else, these conversations will help foster trust between patients, families, and physicians. When a faith-based request for treatment (or nontreatment) violates the 10 HASTI N G S C E N T E R R E P ORT
DOI: 10.1002/hast.409
January-February 2015
Copyright of Hastings Center Report is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
months. Paul is requesting full code and treatment focused on recovery despite James’s extremely poor prognosis. Paul is James’s only child, and James’s wife is deceased. Paul says he has the “gift of prophecy” and knows for certain when God is speaking to him. “God,” he says, “doesn’t lie.” He says that he and his father spent years preaching together and have witnessed many healings. He believes that they are being “rebuked” because at a time when his father was too tired to travel much, they held fewer revivals and did not save enough souls. Paul’s medical literacy is extremely limited. He has been fasting (reporting a fifty-pound weight loss) and praying. Paul states that God has told him that
He will heal his father, that with enough prayer, James will rise from the bed, walk out of the hospital, and continue his ministry with Paul. Paul cannot or will not supply a patient-centered narrative of values. Their pastor says that James told him many times over the years that he would not want to be kept alive in a condition like this, that he was ready to “go home” to the Lord whenever the Lord was ready for him. The pastor has talked with Paul on many occasions but to no avail. James’s condition has worsened slowly. He has been minimally responsive at best since admission. He has almost no urine output and does not breathe over the ventilator. He is extremely volume overloaded; his toenails have bloodied and popped off. By hospital-day twenty-one, he had only corneal reflexes, indicating severe and irreversible loss of brain function. The medical team is troubled; if James is to stay on the ventilator, he will need a tracheostomy, but this would only further prolong what has already been an agonizingly prolonged dying process. Paul continues to pray for his father to get up.
commentary
pital policy, moral sensibility, and common sense, carries the risk that they will lose in a court of law or public opinion. And whenever the institution is at risk, the community is at risk for loss of trust in their source of heath care. Part of the ethical response, then, is to weigh the relative vulnerabilities: how likely is the risk, how bad the consequences, and who and how many will be affected? In this case, one possible course of action would be to invoke the institution’s futility policy (or “medically nonbeneficial treatment” policy). Of course, treatment in this situation may be worse than nonbeneficial; if James can experience pain and discomfort, it is causing grave harm. In contrast, if he has lost the neurological ability to experience
pain, then he may be “beyond harm,” and continued treatment may be “merely” nonbeneficial. Most states have some statutory law that would support the unilateral withholding or withdrawing of nonbeneficial care, provided that other methods of solving the conflict have been exhausted, and proper procedure observed. However, without case law to support this policy, and especially in a climate of distrust fostered by cases in public and social media, hospitals may rightly be wary of invoking it. Institutional risk should be assessed, and steps taken to reduce it. Such risk can be mitigated, in part, by proceeding carefully and compassionately. While others on the medical team have contributing roles, the physician
case study
Faith and Futility in the ICU
J
by Annette Mendola
T
here are many people made vulnerable in this situation, and each deserves respect. James is vulnerable to invasive, unwanted treatments and a disrupted end of life. Paul is vulnerable to despair because he is about to lose his father, his hopes for continuing the work he loved, and potentially his faith in God. The hospital staff members are vulnerable to burnout and moral distress due to providing care that seems fruitless at best and, sometimes, even cruel. The institution is vulnerable because setting limits on care, even when in compliance with statutory law, hosJanuary-February 2015
H AS TI N GS C E N TE R RE P O RT
9
bears responsibility for knowing the patient’s goals and whether they are medically attainable under the circumstances. The physician also bears responsibility for knowing whether a requested treatment is likely to achieve the stated goals. In this case, the goal that Paul has articulated (that his father will get up, whole and well, and go back to preaching with him) is not medically attainable. Since health care professionals have responsibilities to families as well as patients, to pursue it anyhow might be justifiable if, for example, it would help Paul through the denial phase of the grieving process. James might be beyond harm, but Paul is not. Could treating James’s respiratory failure help to heal Paul’s grief? Since Paul’s expectation is far from medically reasonable, and since he cannot apprehend the possibility that his
petition to God might not be granted, Paul appears to be in profound denial rather than simply an unusual theological position. Offering a tracheostomy in order to continue using the ventilator indefinitely, then, is not a gesture of respect for his religious belief so much as a failure to acknowledge the “elephant in the room.” To ask if he wants to continue with the ventilator (or even if he thinks his father would want to continue on it) reinforces his belief that the ventilator provides a reasonable chance for his father to recover. Coupling the offer with stern warnings and dire prognostication does not help Paul understand the situation. It fosters only a sense of distrust and introduces feelings of mutual dislike. In this case, offering treatment that cannot achieve the goal Paul has in
mind is not only an abnegation of responsibility to offer only effective forms of care but also an abnegation of the responsibility to address the complicated grief with which he presents. If a requested treatment will not benefit the patient, the physician should investigate whether providing some such treatment is likely to ease the grieving process or, alternatively, to exacerbate it. Other members of the hospital’s staff—from nursing, social work, ethics, and pastoral care, for instance—can be called on to help. Treatments that cannot benefit the patient and are likely to further complicate grief in families should not be offered. Situations like this call for carefully crafted interdisciplinary care to address the multidimensional needs of both the patient and family members.
commentary
standard of care, providers should look for an opportunity to accommodate the request or propose a compromise. Consider the refusal of blood transfusions by Jehovah’s Witnesses. Western medicine has done much to accommodate this request, such as developing alternatives to whole blood products and respecting a competent adult’s refusal even if it will lead to death. But when Jehovah’s Witnesses refuse a transfusion for a child, this decision is denied. From an ethical perspective, there are limits to accommodation, and a child’s well-being is one of those limits. The case at hand provides another opportunity to define the limits of religiously based decision-making. Paul is making a decision based on his own beliefs. If his decision were based on what James would have wanted, or if Paul’s request were clearly in James’s best interests, this case would not have raised any flags, but Paul’s decision seems to conflict with both James’s wishes and best interests. As a rule, a surrogate’s request should not be honored if there is strong evidence that it conflicts with the patient’s own beliefs and wishes. If the surrogate’s request seems to be in line with the patient’s wishes but does not seem to be in the patient’s best interests, then caregivers should determine whether the request is in keeping with
the teachings of the patient’s religious community. For example, if a Jehovah’s Witness is a surrogate for another adult Jehovah’s Witness and refuses a blood transfusion for the patient (and say it is unclear how committed the patient is to the faith and to this particular teaching), then the surrogate’s request should be honored because it conforms to a well-known teaching of the community. However, if the surrogate’s request contradicts the religious community’s beliefs (say the Jehovah’s Witness surrogate refuses a blood transfusion and all partial-blood products) and it is unclear whether the patient would side with the surrogate over the community, then the surrogate’s request should be denied. This is a way of inferring what the patient would want if he or she were able to choose; in other words, the teachings of the community become a substitute for an advance directive. Other limits may need to be considered as well, such as whether the request harms other patients, family members, or health care providers. In this case, however, Paul’s request is in conflict with James’s wishes, his best interests, and the teachings of their religious community. For these reasons, the request should not be honored.
by Gregory L. Bock
T
his is a case in which the faith-based requests of a surrogate decisionmaker conflict with the standard of care. From the medical perspective, James’s condition is futile. From the perspective of faith, at least according to what Paul believes, changing the code status and pursuing comfort care would be tantamount to disobeying God. Religious beliefs deserve to be taken seriously because they can define who we are on an existential level and give us purpose, meaning, and hope. In the clinic, religious beliefs should be treated with extra care because patients and families are vulnerable and religion may be the only source of comfort. This means that caregivers should patiently listen to patients and family members articulate their beliefs and try to understand these from their point of view, asking, for example, how the patient and family understand the illness, how they explain its cause, and what they think is the best course of treatment. If nothing else, these conversations will help foster trust between patients, families, and physicians. When a faith-based request for treatment (or nontreatment) violates the 10 HASTI N G S C E N T E R R E P ORT
DOI: 10.1002/hast.409
January-February 2015
Copyright of Hastings Center Report is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
