Ethical, political, and social aspects of high-technology medicine: Eos and Care
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- Zamperetti, N., Bellomo, R., Dan, M. et al. Intensive Care Med (2006) 32: 830. doi:10.1007/s00134-006-0155-0
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We discuss biosocial aspects of high-technology medicine (HTM) to provide a global view of the current model of medicine in the developed world and its consequences.
We analyze changes in the concept of death and in the use and cost of HTM. The consequences of HTM on the delivery of basic medical care within and among countries are discussed. Concepts derived from Greek mythology are used to illustrate the problems associated with HTM.
HTM can be extremely effective in individual cases, but it poses important bioethical and biosocial problems. A major problem is related to the possibility of manipulating the process of dying and the consequent alteration in the social concept of death, which, if not carefully regulated, risks transforming medicine into an expensive way of pursuing pointless dreams of immortality (myth of Eos). Another problem is related to the extraordinary amount of resources necessary for HTM. This model of medicine (which is practiced daily) has limited sustainability, can work only in highly developed countries, may contribute to unequal access to health care, and has negligible positive impact on global health and survival.
HTM poses very important biosocial questions that need to be addressed in a wider and transparent debate, in the best interest of society and HTM as well.
Major clinical and technological developments over the past 50 years have led to increased diagnostic and therapeutic capacity, thanks to a complex system of medical interventions which deliver what are termed here “high-technology medicine” (HTM). Many different branches of HTM pose important bioethical problems, which range from patient triage for life-saving therapies  to critical care research . We argue that HTM also poses important biosocial questions (affecting society at large). We therefore discuss the alteration in the social concept of death brought about by HTM and the effect of HTM and of the model of medicine as practiced daily in highly developed countries on resource consumption. The authors stress that this contribution reflects the authors' opinion and experience, rather than scientific work based on scientific methods. Other persons may take a different view, and a fruitful debate is more than welcome.
Until the first half of the twentieth century medicine was basically a diagnostic and palliative practice. Dying remained an unalterable process. There was no technology to support a failing breath or restart a heart that had stopped. Every illness or dysfunction which could sufficiently limit breathing or swallowing or the beating of the heart caused the death of the patient in a short time. Consequently death was a holistic event. Biology (life/death of the organism) and biography (life/death of the individual) were one and the same. Supporting/maintaining life meant supporting/maintaining the whole person, and medicine could not lead to profound discrepancies between life and its quality.
Through the use of vital-organ support technology HTM has separated biological and biographical death. New conditions have appeared. New concepts (e.g., brain death , vegetative state , dissociated cardiac death ) had to be created to describe and understand these conditions. Even beyond these situations HTM has radically changed the way of dying. In the case of cardiac failure, for instance, possible measures from basic to advanced life support are possible, up to extracorporeal circulation systems and heart transplantation . However, despite many reported successful cases HTM does not always prevent death, nor does it always restore life. Nevertheless it does always allow the manipulation of virtually every aspect of the process of dying, often merely prolonging and fragmenting it. Such a manipulation could insidiously entice the protagonists of HTM and society at large into believing that the task and benefit of medicine is to defeat death. This is not true. New technologies do not “decrease mortality,” as the language of clinical trial reports would have us believe; they often only delay it [7, 8]. Death is, and always will be, inevitable. Health care workers should be aware that all they actually manage is not life or death but clinical data, drugs, and devices for ensuring the best possible quality of their patients' (residual) life.
These observations do not mean that struggling to save a savable life is blameworthy. However, prolonging the process of dying is surely undesirable, especially when it becomes a mere toying with biological parameters. When life-saving support becomes merely agony-prolonging intervention, limiting HTM is mandatory, even in emergency situations . Unraveling all this be extremely difficult. Technological supports (from dialysis to intensive care) tend to be self-justifying for the mere reason of being, at least temporarily, life-saving. They also tend easily to expand from the acute to the chronic phase of illness and from single to multiple organ support. Some could be tempted into thinking that clear and objective clinical criteria can be used to guide the use of HTM in such situations. This is not so. Many studies have demonstrated both the inadequacy of the concept of futility [10, 11, 12] and the wide variability of health care workers' beliefs and behaviors in making end-of-life decisions [13, 14, 15, 16, 17, 18]. The use of advanced directives might be useful in helping clinicians and relatives reach the best possible decision in the patient's interest. However, there are reports of patients satisfied for having received successful treatment in spite of advanced directives proscribing it [19, 20]. The fear of legal consequences is yet another factor which can condition the management of HTM beyond the patient's interests .
The capability of HTM to alter the dying process and prolong a low-quality life leads to what we call the Eos syndrome of modern medicine. In the Homeric “Hymn to Aphrodite” Aphrodite tells Anchises the story of Eos and Tithonos. The goddess Eos asked Zeus to granted immortality to her mortal lover, Tithonos; she forgot, however, to ask for his eternal youth. As the years passed, Tithonos aged, debilitated, and wrinkled. Finally, when he had lost all strength, Eos, with love and pity, put him in a bed inside a golden room and “closed the shining doors over him” (http://www.uh.edu/~cldue/texts/aphrodite.html; accessed 21 August 2005). Tithonos remained, in his gilded cage, mournfully beseeching someone to help him die (see Appendix).
To avoid this syndrome it should be the patient's own interests that guide any manipulation of the process of dying—a manipulation that we carry out every time we use HTM in terminally ill patients. On the other hand, palliation is not a separate and optional form of care to be reserved to fully and clearly terminal patients. Every health care worker in the ICU is always both an intensivist and a palliative care specialist at the same time. The emphasis on intensive care or palliative care should vary according to the patient's conditions. Such an approach may help prevent conflicts between the ethics of care (obligation towards the patient) and the ethics of distributive justice. It may also limit staff discomfort at overtreating hopelessly ill patients .
The arrival of artificial ventilation and dialysis marked not only the beginning of HTM but, above all, established the fact that effective therapies can be limited to only some of the patients who need them. Intensive care, transplantation, and anti-HIV therapies are recent examples of effective treatments that are not available to most persons in the Third World, and even to many in developed countries. In other words, HTM will become increasingly restricted to those who because of wealth, location, social class, or simple luck have access to it. It is therefore possible to speak of “presentism,” in the sense that a huge amount of money is spent to cure a limited number of patients (those who are “present” to receive it), while much less is offered to those who are “absent” (because of lack of money, geographical limitations or other reasons).
An increasing number of persons in the United States employed in low-income jobs that entail no insurance are neither poor enough to enjoy a public insurance system nor wealthy enough to pay for health insurance for themselves and their families . Therefore, apart from a few exceptions and emergency care, many in the United States have inadequate access to HTM (and even to basic health care ). From a world-wide perspective, inequality in access to health care greatly depends on global inequalities in resource distribution. Currently the richest 1% of the world's population earn as much as the poorest 57% (UC Atlas of Global Inequalities: http://ucatlas.ucsc.edu/; accessed 21 August 2005). Therefore the overall (public and private) per capita health expenditure for the 960 million persons living in the world's high-income countries is 130 times that for the 2.5 billion persons living in low-income nations (US$ 2,736 vs. US$ 21) . To mention only one of many possible examples, the United Kingdom and Ireland in 2001 say a total of 2010 aortic valve procedures associated with coronary bypass grafting in patients with an average age over 70 years . This age is already much greater than the mean life expectancy in most sub-Saharan African countries. Moreover, the average cost of each intervention is many times the yearly per capita health expenditure in most developing countries.
This situation also affects on the application of HTM itself. In India, of the 100,000 patients who develop end-stage renal disease each year, 90% never see a nephrologist. Of the 8,500 patients who begin hemodialysis only 4% are still receiving treatment after 1 year. The standards of treatment are often unacceptable compared to those in Western countries: patients are dialyzed only twice per week, on cellulosic membranes, and using acetate dialysate; dialyzers and circuit tubing are reused up to six times; and manual formaldehyde disinfection is used . The situation is substantially similar in China . Regarding end-of-life care 20% of deaths in the United States take place in ICUs . Trying to apply this model to India or China, with all their inhabitants, clearly demonstrates its unsustainability.
The situation is not better for research. Of the billions spent on health research and development only 10% is used for research into 90% of the world's health problems .
HTM might even help divert resources away from basic health care. The net world flow of resources is largely from underdeveloped to developed countries. Many developing nations spend more each year repaying their national debt, which comprises between 100% and 200% of their gross domestic product than on education and health care . Somehow, these persons (who themselves lack adequate access to fundamental services) are helping to finance our overall standard of living and our HTM.
This shift of resources does not necessarily impinge on the survival of those in developed countries. In the year 2000 the United States spent about US$ 4,500 per person on health care, but life expectancy was “only” 77 years (27th in the world). This figure is similar to that of Cuba (76.9 years, 28th in the world), which spent only US$ 186 per person (1/25 of the United States expenditure; UC Atlas of Global Inequalities: http://ucatlas.ucsc.edu/spend.php; accessed 21 August 2005). However, the above shift in resources could easily prevent developing countries from achieving the “millennium development goals” (partly related to primary health care), with dramatic adverse consequences on the lives of millions of the world's poorest people , especially women and children . The recent decision to cancel billions of dollars in debt owed by 18 developing countries (http://www.cnn.com/2005/WORLD/europe/06/11/uk.g8.africa/; accessed 21 August 2005) is an indispensable yet insufficient step toward averting such a disaster .
Presentism has many causes. One is the cost of HTM. Critical care medicine alone consumes more than 1% of gross domestic product in the United States . The cost of devices and interventions is continuously increasing, making the use of HTM more and more difficult to afford and subject to restrictions. Another problem is the still limited curative power of HTM. For many diseases HTM merely provides survival with chronic disease. End-stage renal failure, chronic obstructive pulmonary disease, cardiac failure, HIV infection, and many other conditions have “only” become consistent with prolonged survival (usually but not always with a relatively good quality of life). Therefore, the number of elderly persons chronically affected by multiple pathologies is rapidly increasing, making the recourse to HTM more frequent.
The consumer-based structure of our world is another important factor. In a society in which the value of a person is related to her/his capacity to consume, we systematically destroy much more than we actually need to keep live. HTM risks becoming a part of this consumer society if health care is considered only a commercial commodity, and if it is turned into a race to newer drugs and facilities that yield new needs, albeit only for those who can pay for them. Obviously HTM for those “present” depends also on the direct and indirect social, intellectual, political, and moral failures of those who are “absent.” In some developing countries corrupt government officials, tribalism, religious fundamentalism, discrimination, poverty, and lack of education play the greatest roles. In developed countries unhealthy behavior, self-injurious life-style, and low-quality housing contribute to such failures . Perhaps many poor wretched persons and nations have had their opportunities and have missed them all. However, should we be satisfied with a few bland words of disapproval and/or commiseration?
We are all part of HTM. We also live and work in a global society.
The authors believe that there should be a fair use of medical resources which takes into account the interests of everyone so that all the persons within a nation and among different countries can have adequate access to reasonable health care irrespective of their merits. The authors consequently reject a worthiness morality, which also radically contrasts with the myth of Care (see Appendix) . According to this, “Care first fashioned the human being,” and she would therefore “have and hold it as long as it lives.” The clear meaning is that the right to receive care should depend on being human, not on deserving it or being able to pay for it. And since curing is an essential part of caring, the right to be cured should simply depend on being curably ill.
Perhaps some of the issues have been taken to their extreme consequences. Furthermore, as acknowledged above, many statements are based more on the beliefs of the present authors than on some indisputable scientific facts. In the field of bioethics, scientific observation and moral principles (individual or group-based) are always intertwined and influence each other.
The authors believe that the striking progress of HTM poses bioethical and biosocial questions, which should be explicitly addressed. Possessing more technological power means bearing more moral responsibility towards patients and toward society in the use of such expensive, limited, probably effective and potentially dangerous complex systems. Answers are increasingly difficult to find. Somehow it seems that progress in bioethical reflection cannot keep up with the pace of technological progress. This gap may be widening. Four points, nonetheless, should be stressed, if we want HTM to continue to serve humanity.
1. We live in a death-denying society , which HTM has contributed to creating. Practicing good medicine in such a situation is almost impossible. Our society must reevaluate and accept death as an important part of life, even though it is a sad and sometimes tragic moment for the individual. The presumption of creating a transition from biological life to immortality is a folly. Refuting the finite nature of our personal existence on earth means depriving ourselves of an inalienable aspect of our humanity. Only when death is accepted, supporting and accompanying patients and relatives along the dying process can genuinely become a meaningful and valuable component of care.
2. The management of HTM in terminal patients should be patient oriented. Limiting supports means allowing such patients to die a dignified death and not to delay death at all costs. Many artificial devices can now be employed to support almost all vital functions. For this reason the moment of death (not its cause) depends more on the decision of initiating/increasing/foregoing vital organ support than on indisputable clinical data. It is therefore more a moral than a clinical decision. The real issue is to find the best way to manage the dying process in a way that best integrates individual, medical, and social needs.
3. Ours is an unequal world, where the vast majority of people are locked into living low-quality and unhealthy lives, which helps to sustain a richer minority of elderly and sicker persons who demand more and more resources to maintain their standards of living and care. In this world HTM could establish the right of privileged persons to enjoy access to maximum intervention while the majority of persons have minimal or limited access to effective basic health care. Obviously, limiting the use of HTM for those who are present as a means of guaranteeing better care for those who are absent might well be unfair, useless, and naive. However, although abolishing HTM is not a choice, and although the causes of presentism are above all political and societal, it is important that every health care worker be aware of all these moral issues.
4. Finally, perhaps we should (re)define the goal of health care and the model of medicine that we wish to pursue, based on whether health care is a fundamental right of every human being or merely a consumer good, available only to those who can buy it. What should the aim of health care be: adequate care for all or maximum care for some? Should we use our limited resources to prolong life expectancy by the year 2025 to over 105 years for a few or to 50 years for everyone by making effective therapies available to the largest possible number of persons?
If we as critical care physicians and nurses do not start thinking, discussing, and acting globally about HTM and its management, others will do it for us, and we might not like their answers.
The authors want to thank the three anonymous reviewers for their insightful comments which helped improve the overall quality of this paper.