A recently published study in The Lancet indicates that people primarily desire euthanasia and assisted suicide not because of intolerable pain and symptom management but rather because they fear a “loss of self.”
The study, carried out by the University of Toronto Joint Centre for Bioethics, interviewed 32 people with HIV-1 or AIDS, questioning them on their thoughts concerning euthanasia, assisted suicide, and end-of-life medical care issues. The study found that the desire for euthanasia and assisted suicide was not primarily driven by the participants’ concerns over pain and symptom management ,but rather by their concerns about loss of function and loss of community, which the researchers have referred to as “loss of self.”
The 32 participants consisted of 31 men and one woman who agreed to discuss end-of-life issues and were HIV positive. Twenty of 32 participants entered the study with a position of wanting an assisted death, while nine participants were opposed to “mercy killing.” The other three participants were unsure of their positions.
Even though the research group has weaknesses due to it being almost all men, and all HIV positive, researchers consider this group to be an important one for research. Studies show that people with HIV-1 or AIDS are 10 times more likely to request an assisted death. This research is important, but further research should be done on the wider community.
The desire for euthanasia or assisted suicide primarily results from fear and experience of two main factors: disintegration and loss of community. These factors combine to give participants a perception of loss of self.
Participants expressed their concerns over bodily disintegration. They recognized that as their disease progresses, they become more dependent on others for their basic needs. They resented being unable to do things for themselves.
One participant stated that, “I’m still inconveniencing other people who look after me and stuff like that. I don’t want to be like that. I wouldn’t enjoy it … No, I’d rather die.” This point of view seems to represent the current Western culture’s obsession with independence and individuality. Losing autonomy is perceived as an intolerable condition.
Participants also emphasized their concerns over “loss of community.” The participants recognized that as the disease progressed, their social life and personal relationships diminished. Their concerns included being excluded and alienated and they referred to self-isolating actions.
One of the participants told of an experience of being in a waiting room in the doctor’s office, when a pregnant women noticed him in his condition, next to her, and began to scream and yell. Everyone in the room seemed extremely uncomfortable with his presence and he felt extremely devalued by this incident.
This study seems to confirm that the strategy of the Euthanasia Prevention Coalition is correct. We recognize the importance of good pain and symptom management, and yet we realize that the social, emotional and spiritual needs of a dying person must be our primary concern.
The ability to control pain is possible within the realm of science and good medicine. The ability to care for the internal needs of the person is existential and therefore more difficult to solve.
The EPC considers this study to be a wake-up call for everyone to recognize their responsibility to freely give of themselves to others. The EPC acknowledges that the disintegration of the family unit in our modern culture exacerbates the personal difficulties associated with the dying process.
When one is dying they are in their time of greatest need for others. Often the human touch or giving time and listening provide more relief of anxiety than medications or therapies.
The human person is primarily a social being. It is the job of all those who share our opposition to “mercy killing” to also recognize the importance of sharing one’s self with others, especially the elderly, the chronically ill and the dying.
It is through service to others that we will build a culture of life that recognizes the dignity of all human life – and to effectively oppose euthanasia and assisted suicide we must recognize the need to build a culture of life.