The Right to Die on Your Own Terms

Each month Kathleen Clohessy, R.N., offers a new perspective on living with a terminal illness. Kathleen comes to SevenPonds with 25 years experience as a registered nurse caring for families and children facing life-threatening illness. She began her career in the Pediatric Intensive Care Unit at Nassau County Medical Center in New York, and, after relocating to California, spent 15 years as an R.N. and Assistant Nurse Manager at the Pediatric Oncology & Bone Marrow Transplant Unit at Lucille Salter Packard Children’s Hospital at Stanford. She uses her extensive personal knowledge and expertise to enlighten our readers regarding the challenges associated with chronic illness and their profound effects on family relationships and human dynamics.  

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“Dying on your own terms, this is the greatest gift anyone can bestow upon a mortal man.” ― Mario Stinger

In the United States, there are currently four states that allow the practice of physician aid in dying — Washington, Oregon, Vermont and Montana. On June 9, 2016, California will become number five, with the enactment of the state’s End of Life Option Act.

Often referred to as “death with dignity,” physician aid in dying is not euthanasia, which is the killing of another being in order to end his suffering. By definition, physician aid in dying is the act of helping “patients who are otherwise going to die, who seek help to control the timing and circumstances of their death in the face of end-of-life suffering they deem intolerable.” Physicians who engage in the practice typically counsel patients about the availability of palliative care and hospice and — if patients are deemed to be terminally ill and mentally competent — provide them with a prescription for a lethal dose of medication that they can take when they choose to end their lives. By law, the physician cannot participate in the death by administering the medication; it must be taken by the patient himself.

John was a strong, vibrant, physically fit man of 58 when he was diagnosed with amyotrophic lateral sclerosis, a degenerative disease of the nervous system that causes progressive muscle weakness, gradually increasing paralysis and, ultimately, death. A hard working family man, John’s lifelong goal had been to retire at 60, move to the tropics, and play golf every day. Instead, he now faced the incomprehensible reality that he was dying of a disease that would slowly rob him of every aspect of his treasured independence. Soon, he would no longer be able to walk, or talk, or sit upright, or eat a meal. Eventually, he would no longer be able to breathe.

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I was living in Oregon when John, a dear and long-time family friend, called me, sobbing and barely coherent. At first, I couldn’t understand what he was saying, but as he slowly regained his composure he was able to tell me about his diagnosis and explain that the disease was already quite advanced. His speech was impaired, and he was unable to walk without assistance or swallow solid food. His doctors estimated that he had, at most, six months to live.

Heartbroken and in shock, I asked my friend if there was anything I could do. Without hesitation, he  said, “Yes, let me come and stay with you, and find a doctor who will help me die.”

A passionate advocate of physician aid in dying, I was nonetheless taken aback by my friend’s request. “Are you sure?” I asked him. “You have children and grandchildren. Don’t you want to spend as much time as possible with them?”

John began crying again at the mention of his children, but said he was certain that ending his life on his own terms was what he wanted to do. I told him that I would look into the process and get back to him within a few days. I did, and when we spoke again he seemed just as sure of his decision, although his voice — fairly strong just a few days before — sounded tremulous and weak.

John never made it to Oregon. His condition deteriorated more quickly than his doctors had predicted, and he was soon too ill to travel or even leave his home. Instead, I went to visit him in Wisconsin, where he was being cared for by his family. Now confined to bed and almost completely paralyzed, he was dreadfully thin and barely able to speak. But, despite large doses of morphine and sedatives, he was conscious and aware, and — I could see in his eyes — terribly afraid.

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Feeling completely helpless, I held John’s hand and told him that I was sorry that I had not been able to grant his request — to spare him the kind of death that was now inevitable. I would have done anything to end his suffering if it was in my power to do so, I explained.

But to my amazement, John answered me by shaking his head, weakly but emphatically, “No.”

“No?” I asked. “Does that you mean you changed your mind about wanting me to find a doctor to help you die?”

Again, he shook his head, “No,” but this time he lifted his chin slightly, pointing it towards the living room, where his wife and children sat.

“You’re glad you had this time with them?” I asked.

This time, with a barely perceptible nod of his head, he answered, “Yes.” “I’m sure they’ve treasured their time with you, too” I said.

Then I asked him a question I wasn’t certain I should ask. “Would you have taken the drugs if you had them, John?” I said softly. He looked at me for a long time, seeming to summon up the little bit of strength he had left, and said, “I don’t know.”

That’s when I realized that physician aid in dying is not just about helping people die on their own terms. It is also — perhaps it is most importantly — about giving a person who believes he has lost everything a choice. Not everyone who seeks aid in dying will avail themselves of the option — not everyone who gets a prescription for a lethal does of medication will take the drugs. But, unlike my friend John, they will know that if their suffering becomes intolerable they can end it on their own terms. For many, just that knowledge is enough.