A fellow family physician who cares for people at a clinic in Central America wrote about the death of one of her long-time patients in an e-mail last week. The woman came to the clinic barely able to breathe and with her heart failing. As they tried to stabilize her to take her to a hospital for further care, she knew that she was dying and requested not to be taken there. She said “I want to die here, with the people who loved and respected me, my clinic.”
She expressed the understanding that there are some things that are more important than having the ability to treat diseases effectively and extend people’s lives. We should strive to provide high quality, effective medical treatment, but caring for people is more than that. It includes loving them and showing them respect as sisters and brothers in the human family.
All of our patients eventually die. When they do will they know that they were loved and respected by us as we cared for them?
The interim results of the HPTN 052 study released last week indicate that treating HIV-infected individuals dramatically reduces the likelihood that they will transmit the virus to their sexual partners. This study of HIV-positive patients whose heterosexual partners were HIV-negative and whose disease was at a stage at which treatment would be considered optional showed a dramatic decrease in transmission to their sexual partners for those treated immediately and was stopped early due to the results.
This study raises some interesting ethical questions.
Are HIV-positive persons who have an unaffected partner now obligated to undergo treatment even if there is not evidence that the benefit of the treatment outweighs the adverse effects for the individual?
If treatment of infected persons is an effective means of preventing the spread of HIV, how aggressive should those responsible for public health be in seeking to identify and treat those with HIV?
What should be done in countries with a high level of HIV that already cannot afford antiretroviral treatment for the more severely affected? If treatment of all infected people would dramatically reduce the incidence of new cases in those countries where do we get the resources to provide that treatment?
One of the current students in the MA in Bioethics program at Trinity has also been observing in my medical office the past few months. When there is a lull in the care of patients our conversations often turn to bioethics (while the paperwork on my desk waits a little longer to be attended to). The other day we were talking about the concept of human dignity and whether it was a morally significant concept. We agreed that it was and that we need to be clear that it has to do with the intrinsic worth of human beings. It also needs to be distinguished from the concept of being dignified which is a very different cultural concept with which it is confused.
That discussion made me think about an essay by David Little in the book Prospects for a Common Morality. In his essay Little points to the impact of the rising concept of universal human rights that is changing the face of our global community. He says that “some advocates and defenders of human rights seem to suggest that there are certain moral beliefs and concomitant claims about the world that are universally true and universally justified.” This universally justified understanding of human rights is closely related to the idea that human beings have intrinsic moral value or dignity. The impact this idea is having in global political processes makes it clear how significant this idea really is.
If you haven’t read the news reports, Joseph Maraachli is a little boy with Leigh syndrome. The degenerative neurologic disorder left him on a ventilator in a hospital in Ontario. His parents requested that he have a tracheotomy to allow him to be cared for at home like his older sister who had died of the same disorder several years before. Joseph’s physicians and the hospital where he was in Canada did not think the tracheotomy was in his best interest and obtained a court order to remove him from the ventilator to allow him to die. In March he was transferred to a hospital in St. Louis against the wishes of those treating him and on March 21 he had the tracheotomy, described by his physician in St. Louis as a common palliative procedure. Within three weeks he was able to be weaned off the ventilator and was able to return home with his parents on April 21. His life expectancy at that point was about 4 to 6 months.
What can we learn from Joseph’s experience?
It seems that those of us who are physicians sometimes feel that our training and experience allow us to know better than others what is best for our patients. We need to remember to listen to those who know our patients best. Sometimes parents really do know what is best for their child.
It also seems that when people disagree on what is best it is better to err on the side of life.
In a recent British court case the mother of a 21-year-old woman who was pregnant with her second child asked that doctors perform a sterilization procedure at the time of her planned C-section. The woman has a mental disability and the court is being asked to determine if she is capable of making her own decision regarding sterilization. If it is determined that she is not, her mother is asking for permission for her doctors to sterilize her. The mother says that this would be in her daughter’s best interest due to her inability to care for further children and the likelihood that she would be separated from those children.
This request raises the concern that sterilization of those who had a mental disability was what the eugenics movement of the early 20th century proposed. That attempt to rid society of those who were not desired by preventing their birth showed disrespect for the intrinsic human worth of those with a disability. However, there is a big difference between sterilizing someone in order to decrease the burden on society and doing so because it is in the best interest of the person with the disability. The mother says she desires her daughter to be sterilized for the daughter’s benefit.
The moral difference between the eugenics movement and this mother’s request is one of intent. To sterilize a person who lacks capability to make her own decisions with the sole intent of limiting the number of potentially mentally disabled offspring in society is wrong. To sterilize a person who lacks capability to make her own decisions with the intent of doing what is in her best interest may be right thing to do. If the mother’s intent is not actually her daughter’s best interest, but her own, then it may not be right.
Even though the acts may be the same and the consequences may be the same, intent is the deciding factor in this moral decision.
I have a friend who is from Africa. She sees a lot of things in this country from a different perspective that makes me think, and sometimes makes me uncomfortable. We were recently in a discussion in a group at church about how we define who has moral status and how that impacts our moral decisions about human embryos and fetuses. After the discussion she said she had noted that many Christians in America were quite passionate about the value of the life of those who were unborn, but didn’t seem to care as much about those who were born. She said we stand up for the value of the lives of the unborn whom we will never know and who do not put any demands on us, but seem to neglect the value of the lives of those around us who are in need because valuing their lives would put demands on us.
I think my friend is right. If we really believe that all human beings have full moral status we need to help people see the moral problems with abortion, destructive research on embryos, and the making and discarding of excess embryos in IVF, but we need to do much more. We need to affirm the moral worth of those who have been born. We need to care for widows, orphans, the poor, and those who are oppressed. We can see God’s heart for them in the prophets and in Jesus. There are many Christians who reach out to those in need and love them in tangible ways that express their understanding of their value as human beings. More of us need to do that. I need to do that more.