Death with Dignity and Self-Determination

Too often we don't end up extending life; rather, we extend dying. For those who define meaning in a manner that imbues them with the desire to go out on their own terms, this law gives them that choice.
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I recently learned that my first Chief of Medicine, Arnold "Bud" Relman, M.D., Emeritus Professor at Harvard Medical School, former editor of the New England Journal of Medicine, and fierce defender of Medicare for All, was denied any help from his colleagues in Massachusetts as he lay dying. This happened because Massachusetts failed to pass a "Death with Dignity" referendum in 2012. His widow, and former co-editor, Marcia Angell, M.D., a proponent of that referendum effort, wrote an eloquent op-ed for The Washington Post last fall.

I submitted testimony for the Maryland version, HB 1021, the Richard E. Israel and Roger "Pip" Moyer Death with Dignity Act, and will testify again in the Senate tomorrow, for the cause I believe will be the final contribution of the post-war generation to American civil rights. As a long-time civil and human rights advocate, most recently on behalf of the transgender community in Maryland, D.C. and nationally, I continue to be motivated by my wish to see every American live lives of their own choosing. Those lives are founded on the principal Rights expounded in our Declaration of Independence -- life, liberty and the pursuit of happiness.

Self-determination is intimately bound up with all three rights. An individual should be free to live her life as she sees fit, and not submit to her family, friends, physicians or religious community, and certainly not to the state. While there are profound ethical issues that touch upon this time of life, they do not trump the person's right to live fully to the very end, and alleviate her own personal suffering - her final pursuit of happiness. Indeed, it is somewhat ironic that we've created a huge corpus of law dealing with wills, testaments, trusts and probate, to ensure that the deceased's wishes are respected, yet in 45 states today a person's closest friends, family and physician are not shielded from prosecution for empowering the dying person.

Also please note that I don't use the word "patient." Being a patient is a situational classification; we don't lose our humanity when we become patients, and our dependence should in no way limit our autonomy in our last moments. Doctors, clergy, family and the state should not have the right to override that independence.

Language is very important in other aspects of the debate as well. Opponents, all of whom are well-meaning, unlike my experience in fighting for LGBT civil rights where the opposition is usually motivated by fear or bigotry, have labeled these laws "euthanasia" or "physician-assisted suicide." They are neither. The person is dying of a diagnosed terminal illness, and is being killed by the disease. This is in no way an act of suicide. And the physician who is prescribing the medication is simply a vehicle to provide that medication, and is not choosing to kill the patient. There are adequate safeguards. Unfortunately some opponents seem much more concerned with potential abuses from this bill than they are with the current situations of elder abuse, inadequate health care directives and lack of adequate hospice care.

Most people will never need to use this law; much less than one percent in Oregon at last report, for instance. Many will choose to extend their lives kicking and screaming, as the drive towards self-preservation is the most powerful of all human drives. And many won't have the opportunity to act, as they will pass quickly, without pain, and without existential angst. This legislation's purpose is to help the Brittany Maynards and Bud Relmans of our world, and to give people a final choice as agents of their lives.

Too often we don't end up extending life; rather, we extend dying. For those who define meaning in a manner that imbues them with the desire to go out on their own terms, this law gives them that choice. I vividly recall a patient from my training who had been a strapping professional football player, succumbing to a tumor that had invaded his lungs. He was repeatedly readmitted to the hospital to have the fluid drained from around his lungs, but as the pulmonary infiltration progressed he needed to be intubated and put on a ventilator. This quickly wore him down, and by the time he came to my service he had to be restrained to be kept from removing the breathing tube on his own. Both he and his wife communicated to me that he wanted to die, that he was ready to die. The utter futility of going on was evident in their words, their eyes and demeanor. Unfortunately not only were his hands tied, so were mine, as are the hands of all of Maryland's physicians today.

I generally write on LGBT issues, and I will add that this is an LGBT issue as well. After all, the gay agenda is just the human agenda, and many of us will be confronted with similar situations. But particularly for those who've lived much of their lives in a closet, who have ceded control of their being to outside forces, the opportunity to die on one's own terms is critical. The pain for those of us in the community to have our independence extinguished at the end might in and of itself be too much to bear.

Writing my testimony, searching my soul on this issue has been very difficult and painful -- but necessary. Supporting this legislation is my final offer of thanks to my mentor, Dr. Relman, for helping me become the best physician I could be.

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