My 68-year-old father had recently moved to Idaho to be near his son (myself) and his children. Shortly after his move from Western Washington he was batted around by specialists for weakness and atrophy noted in his right hand. Moving on up the medical food chain, his fears were confirmed by a less than compassionate neurologist: ALS. He showed up to my kid's Pinewood Derby that night quite intoxicated. He had gone to his local pizza place and started drinking. As I pulled him away from the crowd and was about to lay into him, he told me what went down earlier that day. I told him I was sorry and hugged him. He responded he got dealt a hand and it wasn't a good one. He had been a runner for much of his life and the following day, he and I went for a trail run in the Boise Foothills. Maybe two miles or so, he mentioned nothing of his diagnosis, plans or future. We went out for a beer a few nights later. He informed me that he had kept his Washington residency and was going to return there to exercise his right to die. I thought he might be a bit premature in his decision. He had life let to live and his only family was located in "this ass backward, conservative state where they want to make it a god damn felony to help someone die..." He did not want his grandkids to see him in a state of debilitation. Remember me in life and not death. He was right. His diagnosis was confirmed by and ALS neurologist in Seattle in May of 2010.
He decided to live in Italy for the summer. He came home and then traveled to Nicaragua with a friend. He and I visited the Oregon coast that winter and talked about his future. "When I can't take care of myself, it is time to die." I didn't speak, I listened. I fully respected his decision as his son, a nurse and a human. It was his right. It was his only means of control in the face of his body running amok. I helped move him into an assisted living facility in May of 2011. His ALS was rapidly progressing. By June he could only use his left thumb to text messages on his Blackberry.
His walk was a shuffle and could hardly get his hand to his mouth. He was drinking ensure and Pinot Noir through a straw. He told me it was time. "when you get home from Montana (with my wife's family) please come out here and we will do it." His neurologist had signed off on my father's right to die a few months earlier. Telling him that it was my father's call, exercise your right when you decide.
The process in Washington was incredibly transparent and facilitated a person's wishes. The second week of July 2011, we went out for dinner at a sidewalk restaurant. He ordered a bottle of Pinot, some pancetta and crème brûlée. He sipped his wine via a straw. I fed him the other. It was time. The following day as he lay on his bed, I opened 100 capsules of secobarbital on a piece of paper on his table. I joked with him that this was the same stuff that Bobby Kennedy gave Marilyn Monroe. It only elicited a slight chuckle. I noted that this seemed very surreal. He corrected me. "No Scott, this is very real." It was. A few hours later a childhood friend and his wife arrived, as well as two friends that he had made through work and running. It was time. We had decided the best way to administer the barbiturate would be by mixing it with Ensure. He said he could easily drink 8 ounces through a straw. He drank with nervous anticipation. Finished it, swallowed and took a deep breath, looked at me and asked, " Now what, Elder?" I held his hand and told him he would get tired, fall asleep and we would see him on the other side. He fell asleep in the chair, we transferred him to his bed, positioned him how he liked to sleep and sat in silence. I then opened a bottle of Oregon Pinot Noir, poured him a glass and set it on his headboard. The friends came together to finish the bottle and share stories about my father. It was death with dignity. A right that all should have.
In all states where aid-in-dying is legal, physicians can opt-out of participating for any reason, so if you are seriously considering hastening your death, you need to seek out doctors who are willing to help. Ask directly, “Even if that doctor will not, he/she should help you find a doctor who will. Do this early on, because it is important to explore this wish over time, and because you might need time to find another doctor. A good doctor will want to figure out why you are wanting to die. Very often, hiding behind this request is under-treated pain or anxiety, or miscommunication among family, or presumptions about the costs of ongoing care or insurance, etc. In other words, what is pushing you to want to die may in fact be correctible.
Often the impulse to end one’s own life passes. This is another reason to leave time for really thinking and feeling and talking your way through the idea, time enough for letting thoughts and feelings come and for letting them go too.
Often it is not a flight from sorrow driving the request, but the pursuit of meaning; or the pursuit of dignity. One final act of the will, or one final way of exercising this self. Loosely, this is the stuff of “existential distress”. Existential distress may indeed be a valid reason but do know that some doctors are comfortable proceeding only when the suffering is intractable and palpable; in other words, death has to be the last resort. The suffering of meaninglessness or indignity – subjective notions where the act of choosing death is more meant to prevent suffering and to make death meaningful – may need more explaining for the doctor to grasp.
It is a big thing to ask someone to help you end your life, whether family, friend, or professional. Even when it is clearly your wish and feels “right” to all participants. It’s also generally true that most people who do participate end up feeling “good” about it. It can be a powerful way to show love.
One of the vagaries of aid-in-dying is that it requires the person to physically ingest the medication without outside help. This is the letter of the law, meant to protect people from coercion or pressure, but it can accidentally mean that some people have to break the law to make it work. In this case, ALS weakens muscles to the point where one may not be able to physically ingest the medication.
Caregivers, be sure to give lots of emotional space around the moment, for everyone involved. This is not something to rush. Consider bringing symbolism and ritual to the moment. That last meal. That beloved pinot by the bedside. The humor. Anyone involved who participates will remember this moment, so take care to bring beauty or meaning into the mix.
-BJ Miller, MD
AID IN DYING
Medical aid in dying allows terminally ill adults to request and receive a prescription for medication from a physician that they may choose to take to bring about a peaceful death. To qualify, one must be mentally capable, able to self-ingest the medication and have a prognosis of six months or less to live. Ten jurisdictions currently authorize medical aid in dying: California, Colorado, Montana, Oregon, Vermont, Washington state, Hawaii, New Jersey, Maine and Washington, D.C.
Learn more about aid in dying, where it is legal and what it is entails: Compassion & Choices
ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.
Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their demise. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, people may lose the ability to speak, eat, move and breathe.