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Pondering the Aid in Dying Act

There have been a number of thoughtful commentaries written recently to the Adirondack Daily Enterprise having to do with medical aid in dying and the Medical Aid in Dying Act that is being proposed in our state Assembly.

The underlying issue being addressed in these commentaries is human suffering at the end of life, which will always generate strong opinions, whether one is directly or indirectly affected. How suffering is viewed is as important as striving to eliminate it.

Wise men over the ages have tried to bring clarity and perspective to the mystery of suffering. Philosophy, however, does not eliminate the physical or emotional pains of suffering, thus leaving the person afflicted with the question, “What can I do?” As some writers advocate, the competent person with six months or less to live ought be able to choose the legal option to aid in their death. Those against this argue that life itself is paramount and should be protected, and the suffering ought be treated through palliative means.

Groups such as the National Hospice and Palliative Care Organization advocate for quality end-of-life care using as little medication as needed to achieve “the minimum level of consciousness reduction necessary” to make symptoms tolerable. Sometimes that means a light unconsciousness, in which the patient may still be somewhat aware of the presence of others. On other occasions it might mean a deep unconsciousness, not unlike a coma. In some cases, the palliative sedation is limited; in others it continues until death.

Two things come to minds as I read support for the aid-in-dying legislation. One is fear (both fear that is justifiable and fear that is created out of misinformation) and two, the loss of control. It is normal to fear uncontrolled pain and the loss of control it brings. So how do we respond? Under the NHPCO guidelines, the proper use of palliative care medications are the humane way to address the intractable pain that frequents end-of-life illnesses and conditions. And what of the loss of control? How is this addressed? Here lie important questions to the mystery of human suffering.

The legislation that is being proposed in our state, and already passed in several others, says that that control should lie with the individual. It sounds good — very American, in fact. But there are consequences. One that comes to mind is impeding the work that has been accomplished by the hospice and palliative care movement in perfecting the advances that have been made in controlling human suffering of the terminally ill. There is more that is needed in the way of education to refine the knowledge of palliative care so that physical pain is not feared. Likewise, there are more resources that are needed to support the mental and spiritual suffering involved around end-of-life. Often cited as even worse than the physical suffering is the existential suffering. Legislation that is being proposed for “assisted aid in dying” is likely to shortcut these efforts by offering the alternative to life. The legislation, while it portrays the notion of giving the dying a sense of control, can unintentionally convey a subtle message that we are not strong enough as a society to stand with the suffering. Among terminally ill patients who took their own lives under Oregon’s aid-in-dying law, these individuals were far less likely to cite physical pain than psychosocial reasons such as loss of autonomy, loss of dignity or being a burden on loved ones for reasons to end their life.

Thinking of this does give pause on how legislation such as Aid in Dying would impact future legislation dealing with other forms of human suffering at other stages of life.

Daniel J. Santerre lives in Tupper Lake.

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