Technology, Decisions, and Care
Surrogate Demands for Life Sustaining Treatment: Can Ethics Consultation Mitigate Patient Suffering and Facilitate Surrogate Bereavement?
Ellen M. Robinson, RN, PhD, Massachusetts General Hospital
M. Cornelia Cremens, MD, Massachusetts General Hospital
Andrew M. Courtwright, MD, PhD, Massachusetts General Hospital
Advances in medical technology have brought life sustaining therapies for sick patients that have improved both length and quality of life. At times, such therapies are administered without a clear window to benefits that can be rendered, and sometimes burdens can be excessive in the absence of benefits. Increasingly, in the age of emphasis on patient autonomy, surrogates may attempt to claim exclusive decision making authority for their desperately ill and slowly dying loved ones, in such a way that their expressed preferences are unchecked even by senior physicians, to the patient’s detriment. At our tertiary care institution, six years of ethics consultation data between 2007—2013 revealed that 41.3% (n=128 of a total N= 310 ethics consults) were cases in which surrogates were requesting more life sustaining treatment than the team believed was beneficial. A majority of these patients may go on to die in days to weeks of their underlying illnesses, regardless of clinicians’ reluctant agreement to surrogate requests, however, there are also patients who may linger without either improvement or imminent death. Over the years, we have identified characteristics of surrogate decision makers who continue to request life sustaining treatment in the face of, and in spite of, their loved ones’ end of life trajectories. Characteristics that we have noted in our consults include several, which will be shared in presentation, however of particular relevance here and contributory to the patient’s limbo on life sustaining treatment include: 1.) Surrogates who decline or resist social services/chaplaincy support; 2.) Surrogates who do not seem to be in touch with their loved ones’ suffering-often resisting administration of analgesics, stating that they want the patient to be awake; 3.) Surrogates who seem deeply grieved in a personally unrecognizable way, and in being out of touch with their own experience of grief, they may exhibit their emotions through anger and blame. Of particular concern to health professionals providing direct care to these patients is surrogates’ inability to emotionally appreciate and respond with compassion to the manifestations of pain, symptoms and psycho-social-spiritual suffering that the patient may be subjectively reporting or objectively demonstrating. While a due process for conflict resolution based on ethical principles is within our armamentarium, and has been effective in protecting such patients from the harms of continued, non-beneficial and burdensome life sustaining treatment, our inter-professional ethics consultation committee also holds as an important value identification and provision of strategies to assist surrogates to find meaning beyond the continued physical existence of their loved one. Assisting surrogates to recognize and find support for their grief and access their spirituality to the degree it may be possible are goals that are translated into tangible written recommendations and persistently followed up by ethics consultants, in collaboration with social service, chaplaincy and the patient-surrogate’s community clergy, when appropriate. Three cases studies will be presented which reflect aims towards these goals.
Miracle Language in the NICU
Meghan Hall, MA(c), Wake Forest Center For Bioethics
There are few places in a hospital that have the rich bed of ethical issues as the neonatal intensive care unit (NICU). Members of the NICU find themselves on the cusp of new life and death every second of the day. Practitioners are engaged in saving lives through technologies, pharmaceuticals, surgeries and methods that are innovative and ever changing. There are evolving and established treatments for diagnosis that at one time or the other were impossible or extraordinarily rare. The field itself is young, not yet 50 and not globally accessible, making many of the medical options and ethical issues unique to the First World. Additionally, the patients are not able to speak or advocate for themselves, assent cannot be obtained, and preferences cannot be discerned. This conglomerate of ethical issues exists in the daily functioning of the unit, making communication paramount both between practitioners and from practitioners to surrogate decision makers/parents. Parents and practitioners strive to meet on the common ground of best outcomes for their babies, but the means for effective communication are not neatly afforded in the NICU. A NICU parent can be anyone, with any variety medical experience, language, socioeconomic situation, religious affinity, educational background and psychological coping abilities. When so much is at stake and with such variant persons involved, objectives, reality, understanding and discussion can become strained. I will argue that there are moments of opportunity for family centered care (FCC) and effective communication in the NICU world when parents discuss treatment in terms of faith or theological perspectives. My paper will focus on miracle language in this setting; what does it mean? What problems can it cause? What solutions does it offer for communication and family centered care?
I will review aspects of the emergence of miracle language in the NICU setting and examine how it can help or hinder the therapeutic alliance. 1) Faith may be all these families have. Parents can have a faith-based ambitious expectation of miracles or an inaccurately cultivated understanding of miracles. Coupled with an unrealistic expectation of the ability of medicine, how does addressing or not addressing miracles affects these families? How should these invocations to miracles be handled? What do practitioners need to understand about the invocation of miracle language? How and when can the medical team and support teams speak to or challenge presented understandings of miracles? Is there a problem with the medical team appearing as conduits or assumed conduits of miracles?
Variants, Verification, and Termination: An LDS Perceptive on the Theological Implications of Non-invasive Prenatal Whole Genome Sequencing
Bradley Thornock, MPH, PhD(c), Children's Mercy Hospital
In the last few years two medical achievements—the ability to extract and isolate a fetus’s whole genome via a maternal blood draw, and the radically falling costs of sequencing genomes—have converged to make the practice of widespread non-invasive prenatal whole genome sequencing a true possibility. Research is already underway to explore the effectiveness and practicality of using prenatal sequencing as a screening tool for all pregnancies, possibly making it as common as heel pricks and newborn screening. However, this ability to sequence a fetus’s genome prenatally is scientifically and ethically thorny. One main difficulty with this technology is that the capacity to sequence a genome is outpacing scientists’ capability to understand what the sequenced genetic variants mean for the child’s future health. In many cases, the fetus is currently asymptomatic and tests that validate the pathogenicity of any given variant are limited because of unknown penetrance and prevalence statistics, thereby making any definitive prognosis for these findings difficult. For many, another troubling aspect of prenatal genomic sequencing is the potential for parents to terminate the pregnancy in light of this information. For some faiths, prenatal genomic screening is of little consequence since abortions for reasons of the child’s health are not permitted; however, for faiths that allow for the termination of a pregnancy based on the future viability of the child’s life or health, understanding the distinction between a devastating disease that will occur and one that may occur are practically and theologically significant. In addition, many scientists, physicians, and genetic counselors encourage members of a faith to seek out spiritual counsel on these decisions. The purpose of this presentation is not to provide the conclusive answer to this future conundrum, but to act as a call for future research into how these decisions might be actuated into the decision making of believers and how situated ecclesiastical leaders are for assisting in these circumstances. Specifically, this presentation will draw on the doctrines and practices of the Mormon Church, a faith that allows for the termination of pregnancies based on the future health of the child, in order to discuss what genomic information may be pertinent to members and clergy when deciding how to act or counsel couples facing theological dilemmas brought on by prenatal whole genome sequencing.
Making and Keeping Human Life Human
Ernest Krug, MDiv, MD, Oakland University William Beaumont School of Medicine
Discussion about ethical decision making at the border of neonatal viability tends to focus on the tension between the obligation many neonatologists feel to resuscitate and support an infant with a 50:50 or better chance of survival, even if associated with a high likelihood of a major disability, and the claim of some parents that they are in the best position and have the moral responsibility to make judgments about the benefits versus burdens of resuscitation and aggressive NICU care for their infant. What is missing from this dialectic is the consideration of what decisions at the border of neonatal viability are right because they reflect and promote our humanity. In other words, what makes and keeps human life human in the delivery room and in the NICU? This is a different question than deciding whose sense of obligation is more compelling. Consider the following:
First, supporting human relationship makes and keeps us human. Aggressive interventions must be accompanied by adequate pain control and should lead to outcomes important to an infant: being held, having freedom of movement, being able to play, and being happy. Promoting relationship between the infant and parents is a critical goal of care. Quality of life judgments by physicians should not dominate the calculus about if or when to withdraw treatment.
Second, the manner in which we care for suffering and dying infants reflects our humanity far more than the technology we provide. Being human means to be in relationships. Technology offers a great deal as a bridge to healthy functioning, but it is dehumanizing when it permanently interferes with an infant or child being held or communicating or interacting with her environment.
Third, decisions about the treatment provided to borderline viable neonates should result from shared decision-making among families and the medical/nursing team. Shared decision-making involves all interested parties and promotes our humanity by being respectful and by sharing the burden of difficult decisions. Contrary to an approach in which the physician uses clinical judgment alone to determine the best interests of the infant, shared decision making recognizes the moral authority of the parents to determine the best interests of the infant and family as a relational whole.
Fourth, it is indisputable that having a disability makes one no less human, and seeing the person with a disability as one of us and not ‘other’ make us all more human. Consequently, the potential for disability in and of itself should not be a limiting factor for treatment. Persons with severe disabilities do not typically feel they would have been better off dead, or if they do feel that way, it is for the same reasons as those without a severe disability, e.g. uncontrolled pain or a life without meaning.
It is possible that considerations about what makes and keeps human life human may help some families and medical professionals making very difficult decisions at the border of neonatal viability. These are spiritual considerations outside the framework of utility.
The Loving Care of a Machine: Artificial Intelligence, Illness, and Suffering
Amy DeBaets, PhD, Kansas City University of Medicine and Biosciences
In times of illness and suffering, patients often feel isolated and alone, that no one fully understands what they are experiencing. A crucial aspect of spiritual care during such times functions to provide other persons to be present with the patient. Physicians, nurses, chaplains, family, and friends each seek to alleviate, not only the physical pain of illness, but also the personal and spiritual pain of suffering. Within this suffering, isolation and existential questioning collide: Why is this happening to me? Is there anyone who truly understands what I’m going through?
Advanced healthcare technology has been very helpful in relieving the physical pain of many forms of illness and has offered healing for previously-deadly diseases. Many researchers have documented the psychological distance that technology can create between caregivers and their patients. Both the physical barriers of technology that interfere with personal touch and attention as well as the social and emotional barriers that are created through the use of some forms of technology can interfere with the holistic care of patients.
This paper will not re-tread this ground, but will instead look at a variety of emerging technologies in artificial intelligence and robotics that can be used to decrease the physical and psychological distance between patients and caregivers to reopen a space for the humanistic side of medical and spiritual care during times of illness and suffering. This presentation will encourage participants to think creatively and constructively about the possibilities for a medical future in which high-quality spiritual and emotional care co-exist with lifesaving technology.
Some forms of AI and robotics are already being developed to reduce the physical strain of caregiving to assist nurses and health aides, including robots that can lift and turn non-mobile patients and robots that can provide bed baths and cleaning services. These technologies do not serve to replace the nurse or other caregiver, but instead frees them for other kinds of tasks, including less physically-intensive tasks, but also for the challenging work of interpersonal care.
Other forms of artificial intelligence are being designed to replace many of the technical judgments of physicians, especially in cancer care, but also in other areas. Machines can incorporate vast amounts of research data through aggregated bioinformatics and determine which drugs are likeliest to be effective for patients with certain genetic or other medical profiles. Intelligent systems for monitoring prescriptions and procedures are used to reduce medical errors, and patient monitoring systems can enable greater independence for elderly patients. While many aspects of healthcare provider competence can be augmented or replaced by the use of machines, they can also be deployed in such a way as to make time and space for the healing aspects of care, so that providers can address the suffering of patients.
Ellen M. Robinson, RN, PhD, Massachusetts General Hospital
M. Cornelia Cremens, MD, Massachusetts General Hospital
Andrew M. Courtwright, MD, PhD, Massachusetts General Hospital
Advances in medical technology have brought life sustaining therapies for sick patients that have improved both length and quality of life. At times, such therapies are administered without a clear window to benefits that can be rendered, and sometimes burdens can be excessive in the absence of benefits. Increasingly, in the age of emphasis on patient autonomy, surrogates may attempt to claim exclusive decision making authority for their desperately ill and slowly dying loved ones, in such a way that their expressed preferences are unchecked even by senior physicians, to the patient’s detriment. At our tertiary care institution, six years of ethics consultation data between 2007—2013 revealed that 41.3% (n=128 of a total N= 310 ethics consults) were cases in which surrogates were requesting more life sustaining treatment than the team believed was beneficial. A majority of these patients may go on to die in days to weeks of their underlying illnesses, regardless of clinicians’ reluctant agreement to surrogate requests, however, there are also patients who may linger without either improvement or imminent death. Over the years, we have identified characteristics of surrogate decision makers who continue to request life sustaining treatment in the face of, and in spite of, their loved ones’ end of life trajectories. Characteristics that we have noted in our consults include several, which will be shared in presentation, however of particular relevance here and contributory to the patient’s limbo on life sustaining treatment include: 1.) Surrogates who decline or resist social services/chaplaincy support; 2.) Surrogates who do not seem to be in touch with their loved ones’ suffering-often resisting administration of analgesics, stating that they want the patient to be awake; 3.) Surrogates who seem deeply grieved in a personally unrecognizable way, and in being out of touch with their own experience of grief, they may exhibit their emotions through anger and blame. Of particular concern to health professionals providing direct care to these patients is surrogates’ inability to emotionally appreciate and respond with compassion to the manifestations of pain, symptoms and psycho-social-spiritual suffering that the patient may be subjectively reporting or objectively demonstrating. While a due process for conflict resolution based on ethical principles is within our armamentarium, and has been effective in protecting such patients from the harms of continued, non-beneficial and burdensome life sustaining treatment, our inter-professional ethics consultation committee also holds as an important value identification and provision of strategies to assist surrogates to find meaning beyond the continued physical existence of their loved one. Assisting surrogates to recognize and find support for their grief and access their spirituality to the degree it may be possible are goals that are translated into tangible written recommendations and persistently followed up by ethics consultants, in collaboration with social service, chaplaincy and the patient-surrogate’s community clergy, when appropriate. Three cases studies will be presented which reflect aims towards these goals.
Miracle Language in the NICU
Meghan Hall, MA(c), Wake Forest Center For Bioethics
There are few places in a hospital that have the rich bed of ethical issues as the neonatal intensive care unit (NICU). Members of the NICU find themselves on the cusp of new life and death every second of the day. Practitioners are engaged in saving lives through technologies, pharmaceuticals, surgeries and methods that are innovative and ever changing. There are evolving and established treatments for diagnosis that at one time or the other were impossible or extraordinarily rare. The field itself is young, not yet 50 and not globally accessible, making many of the medical options and ethical issues unique to the First World. Additionally, the patients are not able to speak or advocate for themselves, assent cannot be obtained, and preferences cannot be discerned. This conglomerate of ethical issues exists in the daily functioning of the unit, making communication paramount both between practitioners and from practitioners to surrogate decision makers/parents. Parents and practitioners strive to meet on the common ground of best outcomes for their babies, but the means for effective communication are not neatly afforded in the NICU. A NICU parent can be anyone, with any variety medical experience, language, socioeconomic situation, religious affinity, educational background and psychological coping abilities. When so much is at stake and with such variant persons involved, objectives, reality, understanding and discussion can become strained. I will argue that there are moments of opportunity for family centered care (FCC) and effective communication in the NICU world when parents discuss treatment in terms of faith or theological perspectives. My paper will focus on miracle language in this setting; what does it mean? What problems can it cause? What solutions does it offer for communication and family centered care?
I will review aspects of the emergence of miracle language in the NICU setting and examine how it can help or hinder the therapeutic alliance. 1) Faith may be all these families have. Parents can have a faith-based ambitious expectation of miracles or an inaccurately cultivated understanding of miracles. Coupled with an unrealistic expectation of the ability of medicine, how does addressing or not addressing miracles affects these families? How should these invocations to miracles be handled? What do practitioners need to understand about the invocation of miracle language? How and when can the medical team and support teams speak to or challenge presented understandings of miracles? Is there a problem with the medical team appearing as conduits or assumed conduits of miracles?
Variants, Verification, and Termination: An LDS Perceptive on the Theological Implications of Non-invasive Prenatal Whole Genome Sequencing
Bradley Thornock, MPH, PhD(c), Children's Mercy Hospital
In the last few years two medical achievements—the ability to extract and isolate a fetus’s whole genome via a maternal blood draw, and the radically falling costs of sequencing genomes—have converged to make the practice of widespread non-invasive prenatal whole genome sequencing a true possibility. Research is already underway to explore the effectiveness and practicality of using prenatal sequencing as a screening tool for all pregnancies, possibly making it as common as heel pricks and newborn screening. However, this ability to sequence a fetus’s genome prenatally is scientifically and ethically thorny. One main difficulty with this technology is that the capacity to sequence a genome is outpacing scientists’ capability to understand what the sequenced genetic variants mean for the child’s future health. In many cases, the fetus is currently asymptomatic and tests that validate the pathogenicity of any given variant are limited because of unknown penetrance and prevalence statistics, thereby making any definitive prognosis for these findings difficult. For many, another troubling aspect of prenatal genomic sequencing is the potential for parents to terminate the pregnancy in light of this information. For some faiths, prenatal genomic screening is of little consequence since abortions for reasons of the child’s health are not permitted; however, for faiths that allow for the termination of a pregnancy based on the future viability of the child’s life or health, understanding the distinction between a devastating disease that will occur and one that may occur are practically and theologically significant. In addition, many scientists, physicians, and genetic counselors encourage members of a faith to seek out spiritual counsel on these decisions. The purpose of this presentation is not to provide the conclusive answer to this future conundrum, but to act as a call for future research into how these decisions might be actuated into the decision making of believers and how situated ecclesiastical leaders are for assisting in these circumstances. Specifically, this presentation will draw on the doctrines and practices of the Mormon Church, a faith that allows for the termination of pregnancies based on the future health of the child, in order to discuss what genomic information may be pertinent to members and clergy when deciding how to act or counsel couples facing theological dilemmas brought on by prenatal whole genome sequencing.
Making and Keeping Human Life Human
Ernest Krug, MDiv, MD, Oakland University William Beaumont School of Medicine
Discussion about ethical decision making at the border of neonatal viability tends to focus on the tension between the obligation many neonatologists feel to resuscitate and support an infant with a 50:50 or better chance of survival, even if associated with a high likelihood of a major disability, and the claim of some parents that they are in the best position and have the moral responsibility to make judgments about the benefits versus burdens of resuscitation and aggressive NICU care for their infant. What is missing from this dialectic is the consideration of what decisions at the border of neonatal viability are right because they reflect and promote our humanity. In other words, what makes and keeps human life human in the delivery room and in the NICU? This is a different question than deciding whose sense of obligation is more compelling. Consider the following:
First, supporting human relationship makes and keeps us human. Aggressive interventions must be accompanied by adequate pain control and should lead to outcomes important to an infant: being held, having freedom of movement, being able to play, and being happy. Promoting relationship between the infant and parents is a critical goal of care. Quality of life judgments by physicians should not dominate the calculus about if or when to withdraw treatment.
Second, the manner in which we care for suffering and dying infants reflects our humanity far more than the technology we provide. Being human means to be in relationships. Technology offers a great deal as a bridge to healthy functioning, but it is dehumanizing when it permanently interferes with an infant or child being held or communicating or interacting with her environment.
Third, decisions about the treatment provided to borderline viable neonates should result from shared decision-making among families and the medical/nursing team. Shared decision-making involves all interested parties and promotes our humanity by being respectful and by sharing the burden of difficult decisions. Contrary to an approach in which the physician uses clinical judgment alone to determine the best interests of the infant, shared decision making recognizes the moral authority of the parents to determine the best interests of the infant and family as a relational whole.
Fourth, it is indisputable that having a disability makes one no less human, and seeing the person with a disability as one of us and not ‘other’ make us all more human. Consequently, the potential for disability in and of itself should not be a limiting factor for treatment. Persons with severe disabilities do not typically feel they would have been better off dead, or if they do feel that way, it is for the same reasons as those without a severe disability, e.g. uncontrolled pain or a life without meaning.
It is possible that considerations about what makes and keeps human life human may help some families and medical professionals making very difficult decisions at the border of neonatal viability. These are spiritual considerations outside the framework of utility.
The Loving Care of a Machine: Artificial Intelligence, Illness, and Suffering
Amy DeBaets, PhD, Kansas City University of Medicine and Biosciences
In times of illness and suffering, patients often feel isolated and alone, that no one fully understands what they are experiencing. A crucial aspect of spiritual care during such times functions to provide other persons to be present with the patient. Physicians, nurses, chaplains, family, and friends each seek to alleviate, not only the physical pain of illness, but also the personal and spiritual pain of suffering. Within this suffering, isolation and existential questioning collide: Why is this happening to me? Is there anyone who truly understands what I’m going through?
Advanced healthcare technology has been very helpful in relieving the physical pain of many forms of illness and has offered healing for previously-deadly diseases. Many researchers have documented the psychological distance that technology can create between caregivers and their patients. Both the physical barriers of technology that interfere with personal touch and attention as well as the social and emotional barriers that are created through the use of some forms of technology can interfere with the holistic care of patients.
This paper will not re-tread this ground, but will instead look at a variety of emerging technologies in artificial intelligence and robotics that can be used to decrease the physical and psychological distance between patients and caregivers to reopen a space for the humanistic side of medical and spiritual care during times of illness and suffering. This presentation will encourage participants to think creatively and constructively about the possibilities for a medical future in which high-quality spiritual and emotional care co-exist with lifesaving technology.
Some forms of AI and robotics are already being developed to reduce the physical strain of caregiving to assist nurses and health aides, including robots that can lift and turn non-mobile patients and robots that can provide bed baths and cleaning services. These technologies do not serve to replace the nurse or other caregiver, but instead frees them for other kinds of tasks, including less physically-intensive tasks, but also for the challenging work of interpersonal care.
Other forms of artificial intelligence are being designed to replace many of the technical judgments of physicians, especially in cancer care, but also in other areas. Machines can incorporate vast amounts of research data through aggregated bioinformatics and determine which drugs are likeliest to be effective for patients with certain genetic or other medical profiles. Intelligent systems for monitoring prescriptions and procedures are used to reduce medical errors, and patient monitoring systems can enable greater independence for elderly patients. While many aspects of healthcare provider competence can be augmented or replaced by the use of machines, they can also be deployed in such a way as to make time and space for the healing aspects of care, so that providers can address the suffering of patients.