Societal scenario:
Modern medicine and technology now allow many people to survive; many who in the recent past died as children from such diseases as sickle-cell anemia, cystic fibrosis, and Tay-Sachs. Similarly, many children born prematurely now have the opportunity to survive. In all of these cases, the degree of suffering and quality of life of the "survivors" vary depending on many factors. Natural selection once "determined" that these people died; now, they do not. Is this good? right? what are the implications, cultural, religious, ethical?
(1) Is Medical Technology to Prolong Life Always a "Good?"
Kathy Kinlaw, Center for Ethics, Emory
The development of technology in the area of neonatal medicine continues to be a double-edged sword. Certainly for children born a few weeks too early, for whom ventilator care, and perhaps the use of surfactant, have allowed us to tide them over and help their lung development, technology has largely been a wonderful thing. These children have an excellent chance of survival with little additional risk of illness. Enduring a "less than benign" NICU environment of bright, 24 hour lights and little comforting touch, is usual viewed as justified.
At the same time, however, we have pressed the boundaries of viability by resuscitating increasingly younger gestational age (25, 24, 23 weeks gestational age) and smaller (extremely low birthweight ? less than 1000 grams) premature infants. These infants do not always have the hoped for outcome, either in terms of survival or in terms of lingering illness and impairment. For children that survive, the impact on the child and the family of months in the NICU and dealing with significant, long-term impairment, is significant.
How do we think about our "new-found" power to impact these vulnerable children? Our ability to intervene and keep patients organically, biologically alive does not necessarily constitute a reason for doing so. Whether at the beginning of life or later in life, prolongation of life may not always be a "good." When a dying process is prolonged and suffering is endured, justifying our technological ability to intervene is not so simple.
There are several ambiguities in this very human process of intervention that make decisions around the use of technology very difficult and humbling. (1) Despite all that we have learned, we realize that there is a lot of art and faith in science and that we cannot always predict with certainty what the outcome for a particular patient will be. Our experience and research do help us know some reasonable boundaries (e.g., we donít attempt to resuscitate premature infants at 19 weeks gestation), but we cannot always predict the severity of outcome for a particular child. (2) Who best speaks for the infant and therefore, makes decisions about how we intervene? Are parents fully informed all along the way; indeed, can they be fully informed at this unexpected, crisis-oriented time of premature birth? Is there really an opportunity for health care professional/parent partnership in decision-making? (3) What role does faith play in the decision-making process? Should our interpretations of what our faith "instructs" have "clout" in these decisions, either as parents or health care professionals? What happens when these interpretations are in conflict? What does God intend in the midst of illness and how do we respond as people of faith?
(2) Christi Deaton, Ph.D., RN, School of Nursing, Emory
Science and technology progress and change rapidly, while human behavior, beliefs and culture change slowly. The result is that we learn "how to" do something (i.e. save or prolong life in certain situations) long before we determine when it may be appropriate to do so, and have thought through the implications. Once the technology or science is developed and the option exists, it is difficult to then curtail its use. Our health care system remains focused on acute intervention for the individual using all available resources, rather than on the needs of society as a whole or constraints in resources. Thus in individual cases it is easier to make the often emotional decision to save or prolong a life when the capacity exists to do so, regardless of expected quality of life. The opposite issue is that scientific and technological progress has resulted in improvements in quality of life for infants who previously may have had severe disabilities, so decision-making must incorporate the evolving state of the science. Furthermore, outcomes such as disability, learning capacity, and functional and health status measures are affected by multiple factors, many of which occur outside of the initial acute intervention. Unfortunately our health care system with its emphasis on acute care is not well prepared to provide integrated, comprehensive care and support to children and families with complex, chronic health care problems.
On a more personal note, I have never considered death always to be an enemy that should be thwarted whenever possible. It is a transition that all of us will experience at some point in time. Death can be a release from suffering or from a life that by most standards is unacceptable. Life is precious, but extraordinary measures that delay or prolong death (rather than providing a realistic chance for life) invariably prolong suffering for both the infant and family. And yet, to let someone die or withdraw technology that prevents death is a difficult and emotional decision. The capability of science and technology to prolong life creates a tension with our ambivalence about death and our ability to grapple with the consequences of saving lives at any cost.
An important issue for me is to provide a supportive framework in which health care providers and families can make informed decisions about saving and prolonging life, and address the important issues inherent in these decisions. Such a framework cannot exist without interdisciplinary and public discussion regarding these issues, and education for providers and others. The framework should include information about the state of the science and outcomes in similar situations, while acknowledging the difficulty, uncertainty and uniqueness of each individual case. Providers and families need to know that others have faced similar difficult decisions, but that the uniqueness of their own situation is appreciated. The transparency model described by King (1992) proposed that not only information, but also the meaning or interpretation of the information by the health care provider, be given to parents. People and supports are also needed to facilitate communication and respect for differing religious and cultural perspectives between providers and families. Neither the provider nor the family should feel isolated in making these decisions, and the values and perspectives of the individual and society as a whole must be considered. Discussion of these issues in communities and at a national level is vital in order to provide a framework for decision-making, and resolve some of the tension that exists between our scientific capabilities and our beliefs and values.
(3) "Suicide, Modernity, & Self-Transformation: Ritual and Religion in Cultural and Historical Perspective"
Howard I. Kushner, PhD, Program in Science & Society, Emory
Modern technology is generally credited with saving and prolonging life, while modern society and its pressures are often portrayed as a killer, responsible for increases in deaths from diseases ranging from arteriosclerosis, diabetes, and lung cancer, and to depressions and suicide. My presentation will explore the connections between increase in suicide rates and the decline in social and cultural rituals that traditionally provided therapeutic strategies for depression and self-destructive behaviors. A window on this dynamic is provided by an investigation of the high rates of migrant and immigrant suicide reported in North America since the early 19th century.
Hendin suggested that variations in suicide rates could be understood in relation to the "different fantasies and attitudes toward death" found in different societies. The way that a culture deals with death serves as an indicator of how its members cope with other loss. All loss is "mourned." The way death is mourned is only an extreme illustration of the mechanisms available to any group, at any time, to deal with loss.
Migrants are both deserting and deserted. Migration itself may be a strategy of risk-taking pursued by some who feel particularly self-destructive. Those who migrate inevitably face major loss. This loss results not only from the material fact that others have been left behind, but also because the ritual structures that enable them to deal with loss frequently have been abandoned and cannot be reestablished. The more incompletely an early loss is mourned, the greater the chance that later losses will result in self-destructive strategies. When a subsequent loss (for instance, unemployment) occurs, earlier unresolved losses are recalled and their memories exacerbate the current crisis.
Migrants tended and tend to be people in search of self-transformation. The centrality of the ideology of self-transformation in modernizing societies helps us understand why a general decline in mortality does not necessarily lead to a reduction of that suicidal behavior. In middle class culture an individual is no longer measured by status alone but by material possessions. Status and self-esteem become a function of these objects. In such a world, social relations become object relations. Spouses, children, parents, and friendships become objectified and symbolic of self-worth in a capitalist society. Objects owned (and the value of them) also become equated with one's self; material objects merge with identity. Loss (of any of these) means more in the modern world than ever before. For many individuals the measure of success toward the goal of self-transformation remains lodged in these symbols. However, to achieve that goal, modernization also demands a denial of one's past (one's parents, traditional values, etc.). Because the goal of self-transformation is tied to the repudiation of past values, social failure cannot be diffused by falling back on those traditional values which have been rejected both individually and culturally. Thus, any loss comes to mean more to those who fail at the goal of self-transformation (that is, who suffer real and imagined material losses). To the extent that transformation is either restricted or impossible, the guilt for having rejected past values and rituals intensifies as the dream of self-transformation fades. In any case, fantasies of self-transformation always carry with them a burden of self-rejection and, to a certain extent, a level of self-hate. Immigration and migration exacerbate all of these issues.
One exception, which may prove this rule, seems to be evident in migration to Utah and Idaho. These two Mormon-dominated states, which consciously recreated community structures and rituals, have had and continue to report the lowest suicide rates among jurisdictions with high levels of in-migration. Not only does Mormonism encourage community participation in mourning, but also Mormons view death as a form of personal progress toward an afterlife in which the believing departed are immediately and literally resurrected. Although all migration creates object loss, those migrants who reconnect with meaningful ritual and social support face a lower risk of suicide than those who cannot.
Completed suicide is only one possible outcome of the strategies that individuals pursue as they mourn loss. Some cultures provide more effective mechanisms than others for dealing with loss. Nevertheless, the values and rituals that any group may provide as a restraining element against self-destructive behaviors always are limited by the extent of a member's sense of connection to and identification with those values. Assimilation, modernization, and migration all serve to lessen those ties. And, as a general proposition, the more any culture or ethnic group truncates mourning or demands privatization of loss, the greater the possibility that any of its members will pursue strategies that involve risk-taking which may result in the death of the actor.
(4) A Physicianís Perspective
Michael S. Okun, M.D.
Department of Neurology, Emory
The decision to administer or not to administer a medical therapy is complex. It is often oversimplified as a decision for life or death. The decision in modern medical practice involves an understanding of the needs of the patient, his or her cultural, ethnic, and religious values, knowledge of the potential risks and benefits of a therapy, and an understanding of the practicality of the therapy based on the existing medical literature. Issues of cost-effectiveness, ethics, and long-term outcome are often not considered until too late. Experience with new therapies has shown that when suppression of the immune system is required for a therapy to be effective new devastating diseases may emerge, such as graft versus host in the patient receiving a bone marrow transplant.
At the center of this complex equation is the physician whose words and demeanor can easily influence a desperate patient and family. He or she must steer the patient and family through a medical crisis by recommending reasonable and practical treatment measures.
The physician is swayed by what he or she has heard and most importantly by his or her experience. In my own experience I have seen the miraculous survival of a young woman with a locked in stroke, the boy who beat leukemia with a bone marrow transplant, and the 40 year-old patient with Parkinsonís disease who gave away his wheelchair after turning on his new deep brain stimulator. I have also seen the boy who had a cardiac arrest during the big football game who remained in a vegetative coma on a respirator, and the woman who checked in for elective stomach stapling and never checked out. There was also the boy with sickle cell anemia who I continued to shock back to life because his mother would not allow a blood transfusion. Whether patients have a good or bad outcome, it burns an indelible image into their doctorís brain. This image tends to cloud thoughts when making important decisions in-patient care.
When considering therapies that may disrupt natural selection and potentially keep patients alive for extended periods of time, a physician must have an algorithm to sort out the complexity of the situation. I would argue that there exist three possible paths (see algorithm below) a physician and patient may travel when deciding on a medical therapy. Each patient and each case must be treated individually weighing carefully issues of cost, ethics, religion, short and long-term follow-up, risk-to-benefit ratio, community resources, as well as a consideration of the complications of therapy, particularly those that may lead to a new disease. Each patient has an individual set of needs and it is up to the physician to educate and help navigate the patient through an equation that is much more complex than the question of life or death.
(5) Should the prolonging of life be far away from basic scientistsí thinking?
Arri Eisen, PhD, Biology, Emory
Modern scientific knowledge has made it possible to prolong all of our lives; many of us would not be reading this otherwise. Regardless of how humans attempt to change or alter ourselves, whether it be through gene therapy, human cloning, counseling, or prayer, natural selection will continue to act on the human population. We will never change the process of natural selection, whatever our "cure" or "solution" for particular individuals.
As a biochemist and geneticist I am struck by an irony: geneticists, scientists who strive to understand how processes work normally by observing or creating the abnormal, make a living out of developing the very organism described in this scenario, a homozygous mutant, that is an organism with the mutant version of the gene at both alleles, the one from mom and the one from dad. The best way to truly begin to understand a geneís function is to have a homozygous mutation at that gene locus, ideally an organism entirely missing that geneís product. Of course, we use mice, flies, yeast, and worms for our experiments, only studying the unfortunate human that "winds up that way."
I am not as uncomfortable with spending the effort and research to improve the quality of life of homozygous individuals, such as those described in this scenario, as I am about directly altering the genome of the individual via gene therapy to help him or her survive. It must be kept in mind that these diseases can only be clumped together in the abstract sense. Homozygote quality of life exists on a broad spectrum of survivability and expense and ease of care; many homozygotes, depending on the disease and other factors, still die early or in utero, many of those that live we cannot yet provide a good life. However, homozygous mutant individuals like those for sickle cell are, crudely put, the price we, the human population, pay for evolutionís cleverness; we couldnít have the protective heterozygotes without the chance of an occasional homozygote occurring. My hope would be that genetic testing and counseling could become an effective way of significantly decreasing the chance of homozygous individuals occurring. This said, the percentage of the human population that has access to or could even afford such care, and, therefore, the places on earth where such homozygotes are no longer dying, is tiny and unlikely to grow significantly. Many basic scientists think of "studying mutants in the laboratory" or "populations in the field," but human beings are individuals. Perhaps we should instead be spending more time and effort thinking about our work in the larger context, working to increase access and affordability to such care and knowledge and to educate the public about these matters. Thus, we must be better educated ourselves in these areas; as basic scientists we are the source of many of the potential "cures" and "solutions" of future generations. Basic research is of, by, and for the society.
(6) Abdu An-Na`im, Emory Law School:
As usual, the answer may be in yet more questions?
In my view, this scenario cannot be judged as good/bad, or right/wrong, and its implications cannot be discussed in the abstract, without reference to which people have access to this technology at all, and what happen to those to whom the questions raised here are utterly irrelevant. Indeed, it is hard for me to see how can so-called ìnatural selectionî operate at this level, with or without access to this technology, except in terms of ìunnatural selectionî of social and economic stratification and differentials in power relations. Given the reality of limited human and material resources, how are determinations about the ìavailabilityî of this technology made and by whom? I find these considerations critical in discussing this societal scenario, whether in the local context of Atlanta, or in national and global perspectives.
Moreover, the determination of the good/bad or right/wrong of this scenario, and its cultural, religious and ethical implications is necessarily relative to oneís frame of reference. In other words, whether it is good/bad, or right/wrong, to slightly ìprolongî life in this way, and at what costs, depends on who is making the decision
about deploying the relevant technology in a given context. In an immediate sense, whose ìsuffering and quality of lifeî is taken into account, and how is that to be assessed in practice. Is the patient the best judge of this and under which circumstances, or should a parent/spouse/guardian decide on behalf of the patient? It is always a matter of what is in the ìbest interestî of the patient, or should other considerations be taken into account? Who decides on those considerations and what relative weight should be given to them separately and collectively? When are the assumptions underlying societal choice of the decision-maker satisfied, and in whose opinion, whether a patient or a spouse/parent/guardian to the exclusion of other possible candidates. What information and ìchoiceî is truly available to the decision-maker, whoever it may be?
Responses to any of these questions are not only relative to who is making the decision and his/her frame of reference, but are also socially and politically conditioned. Moreover, any response one can think of is neither absolute nor permanent. That is, since the rationale of each response would permit of ìexceptionsî and qualifications that are too varied and complex to be comprehensively provided for by any general principle, an alternative response may easily emerge in the future. Ultimately, since the meaning of death in this realm of human experience is relevant only to those who continue to live, the societal scenario proposed here is more about the lives of those who are left behind than about the ìfutureî of those who die.
(7) Tibetan Buddhist Attitudes Toward Death and Prolonging Life
Geshe Lobsang Tenzin Negi, Ph.D.
Institute of the Liberal Arts, Emory
Tibetan Buddhist literature is rich in contemplations and practices relating to death. It similarly offers a plethora of meditative and yogic methods for health, life enhancement and life extension.
The subject of death is approached from three perspectives. Firstly, living with an enhanced awareness of the reality of death and impermanence has a beneficial and uplifting impact on the quality of oneís life. It inspires the person to live meaningfully and in appreciation of the value of each moment of life, rather than putting off authentic experience indefinitely. It puts life in a reality-based perspective, and brings a calmness, strength and freedom to the emotion processes. Secondly, it encourages a greater tolerance and expanse in oneís dealing with others, recognizing our mutual fragility and mortality. Thirdly, from the tantric perspective, the death process holds great promise for identifying oneís authentic and primordial nature. A tantric meditator simulates the death process in his or her daily meditations, and in a best-case scenario is able to actually experience the death state while in yogic absorption. These three aspects of death meditation are discussed in hundredsóperhaps even thousandsóof Tibetan texts.
Again, attitudes toward health, life and life-extension are discussed in numerous ways. Perhaps the most detailed and scientific of these is the tantric approach, in which meditative and yogic methods are presented. Many Tibetans practice these on a daily basis. The rationale for prolonging life is that is not merely to live longer as an end in itself, but rather that one wants to utilize the opportunities afford by human life in order to progress spiritually and thus become of greater benefit to other living beings.
