When we’re young we have no real concept of life expectancy, death or what it means to be ill and infirmed. We think of the future as forever and we believe that we will live to see it. A child will blindly walk into the street and even after being taught to look both ways the only real fear associated with being hit by a car is that it will hurt and he might not get to go to baseball practice. At some point there is a breakthrough in understanding and we realize that we will not live forever. It is at this point that life becomes much more difficult to manage in that many of our decisions are influenced by the possible outcomes of the situation.
Even in light of the knowledge that one gains early in life regarding death young adults still have a sense of invincibility. They can be thrill seekers; jumping off of buildings secured only with a stretchy cord or climbing the side of a sheer cliff anchored by a piece of nylon and a prayer. The prayer may even be absent from the equation. In mid-life, however there is another change and these adults often begin to think about the end of life and how they would like to face it. It is at this point that the concepts of advanced directives and advanced care planning come to a place near the forefront of though.
The goal of advance care planning , as stated by Pearlman et al (2001), is to allow a patient’s wishes to guide treatments and extend the ability of the patient to direct medical procedures. The advance care planning process is based on the individual’s values and beliefs. It consists of four steps:
1. Thinking about the values held.
2. Openly communicating those values with friends, family and medical professionals.
3. Documenting the values clearly.
4. Ensuring that the document is available for medical professionals and family members in the event they are needed.
Robert Pearlman and a group of doctors and ethicists conducted a study between 1991 and 1995 in Seattle, Washington. In this study they interviewed 198 individuals from different groups based on health and age. There are a couple of points that I found to be profoundly interesting and telling of the mindset of these adults. The respondents were asked to rate different situations based on preference. Fifty-two per cent rated being in a persistent coma as “worse than death” and twenty-seven per cent felt the same way about severe dementia. More interesting than the dementia data is that over half of the participants would rather die than “live” in a persistent coma.
In Robert Veatch’s essay “Hospital Ethics Committees: Is There a Role?” he postulates that “…biological life per se should not be preserved unless other capacities and qualities are also present”. This can be tough medicine to swallow for the family of the infirmed but it seems that the majority of participants in Pearlman’s study reflect the opinion.
But, what if we didn’t have to face these decisions? What if there was a way to reduce the likelihood of becoming morbidly ill?
In his lecture “The Ethics of Living Forever” Dr. Glenn McGee addresses many of the options that are available to extend life. The capacity for America’s public health system has been improving over the last several years as the “baby boomers” are reaching old age. Dr. McGee states that by 2030 there will be over 68 million Americans over age 65.
During the lecture the topic of genetic research comes up and brings with it myriad ethical dilemmas. Francis Collins said that we are all carrying around some lethal genes. The search for and elimination of these genes could definitely extend the lifespan of the average human. This genetic research has found that there are 290 genes associated with heart attack and some of those genes are near definite indicators. Additionally, there are thousands of genes related to different types of cancer and still hundreds related to heart disease. According to McGee’s lecture, when asked parents said that they would not utilize genetic engineering in order to have healthier children but those same parents said that they would use genetics to weed out sperm and eggs that carry the genes that would serve as markers for genetic defects.
Other ethical dilemmas that genetic testing can and do present are whether to abort a fetus if it is found that there would be a high chance for Down’s syndrome. Ethicists polled, as referred in Dr. McGee’s lecture, said that they would be in favor of abortions for families who wanted to avoid having a child because their family is already too big and they would be unable to care for all of their children if there were an addition to the family. Approximately 75% of these ethicists said that they would also be in favor of abortion if the fetus were found to display characteristics of developmental disorders when the family already has a child with a disorder.
Other issues discussed in the lecture are the chances of longer life through organ transplant and the study of cryogenics. If someone has the right amount of money and a belief that medical science will advance enough then they can choose to be frozen in the hopes that someday there will be a cure for their particular ailment. Another point discussed is the study of the Spherical Volvox. This organism found in pond scum essentially lives forever. The parent cells produce offspring but then they continue to live indefinitely; not a clone of the original cell but the actual original cell. The implications of this biological wonder are amazing. Could the fountain of youth be a dirty pond?
Where should the line be drawn when it comes to genetic testing and engineering? Is this sort of science very far removed from Adolf Hitler’s dream of a pure race?