Marc and Eddy Verbessem were not terminally ill. They were not in any physical pain. The two Belgian brothers who were identical twins were born deaf and were beginning to go blind to a congenital form of glaucoma. They chose to end their life under Belgium’s euthanasia law which allows patients to take their life with doctor assistance if “the patient is in a medically futile condition of constant and unbearable physical or mental suffering that cannot be alleviated, resulting from a serious and incurable disorder caused by illness or accident.”
The Verbessem case shows us the problem with the euthanasia law in Belgium (as well as Switzerland and the Netherlands). The law was originally established with an eye towards those in the final stages of incurable cancer who were suffering not only psychically, but also and primarily physically suffering. Jacqeline Herremans, President of Belgium’s Association for the Right to Die with Dignity, wrote in an email to Bioedge that this was not a case of the slippery slope:
“When we opened the debate almost 15 years ago, the first thought was for people suffering from incurable cancers. And it is still the cancer which is at the origin of almost 80% of the cases of euthanasia. But we must admit that suffering may exist in other circumstances. MS, ALS, Parkinson’s are obvious. But what about psychiatric disorders without any possibility of cure? What about ageing persons with several medical affections losing their autonomy and seeing no more sense to their life, knowing that tomorrow is going to be worse than today? What about Alzheimer’s patients? … The decision to ask for euthanasia is not easy. And the decision for the doctor to answer to this request is far from an banal and usual act.”
Besides the obvious concern that this sort of reasoning will open the way for the elderly, the handicapped, and the mentally ill to end their life for fear of “being a burden,” this is also a shameful response to the suffering caused by disability. As a society, we have a responsibility to care for those on the margins, and this includes especially care for those groups Herremans references here. Vicky Kennedy, widow of Sen. Ted Kennedy who spent his life fighting for comprehensive health care reform that would allow the poor to participate, said in response to Massachusetts’ recently proposed Death With Dignity Act (which failed to garner a majority vote in November), “We’re better than that. We should expand palliative care, pain management, nursing care and hospice, not trade the dignity and life of a human being for the bottom line.” A similar response came from the National Federation of the Blind:
This disturbing news from Belgium is a stark example of the common, and in this case tragic, misunderstanding of disability and its consequences. Adjustment to any disability is difficult, and deaf-blind people face their own particular challenges, but from at least the time of Helen Keller it has been known that these challenges can be met, and the technology and services available today have vastly improved prospects for the deaf-blind and others with disabilities. That these men wanted to die is tragic; that the state sanctioned and aided their suicide is frightening.
The Verbessem brothers were not, as argued by supporters of their death, treated with compassion. Compassion is the willingness to enter into another person’s suffering, literally the “suffering with” a person. This requires fortitude not only on the part of the ones suffering but on our part as well. The response to the Verbessem brothers lacked both compassion and fortitude. “It was a relief to see the end of their suffering,” the supervising doctor reported. He might as well said “It is a relief we don’t have to deal with them anymore.”