On June 9th, 2016, California governor Jerry Brown signed into law the End Of Life Options Act, making California the fifth state to enact aid-in-dying legislation. The date is burned into my mind because it directly and significantly changed my work as a hospice nurse.
I have now had three patients who qualified for the law and went as far as getting the medications into their home. Two of these ingested them, and I have been present at a third patient’s death who was not my patient, but whose death I attended because the nurse case manager was unable to.
The law is complex and contains many safeguards to prevent abuse or coercion. A patient must know about the law and mention it to me for me to be able to discuss it with them. No matter how often someone tells me they are done with living and wish they could just die, I cannot bring it up with them. Unless they ask me about “that law,” my hands are tied. This has created numerous painful situations for me, as you can imagine.
They must also meet three criteria: they must have a 6-month prognosis (this is also a hospice prognosis); they must be of sound enough mind to convince two separate doctors two weeks apart that they understand that the medications will end their life and that they want to ingest them; and they must be able to swallow the medications. A family member can hold the cup, but the patient must be able to drink or suck through a straw. A patient who has a neurodegenerative disease and has lost the use of her hands is still eligible. However, this raises the difficult issue of which family member or friend will hold the cup from which she drinks.
When you come down to the fine details like that, you realize the full force of what this law implies. Anyone who is considered within six months of death due to a terminal illness can now take their death into their own hands and legally ingest a lethal dose of medication that ends their life within minutes to hours. Nobody needs to know. The coroner is not notified after the death and the police are not called, as they are for a suicide. This is legal death by lethal ingestion and for a patient on hospice, their death certificate lists their hospice diagnosis as the cause of death, not the lethal ingestion of medication. The email that the nurse attending the death sends out states just that the patient died, not how. That they availed of the EOLOA is documented in their chart, but you would have to be on the patient’s team to know it.
I cannot tell in any detail the stories of my patients who took the aid-in-dying meds due to the HIPAA privacy law. In some ways, this is a shame, because they are by far the most memorable deaths I have attended in all my time at hospice. However, HIPAA is law for a reason: privacy is paramount.
But I can talk about how the law has affected me as a hospice nurse.
All death is profound. I confess I overuse that word because I just can’t find another in the language that covers it. But the aid-in-dying deaths are profound in a whole different way. When you watch someone die of natural causes, or their disease process, you watch their life ebb away often over long hours or days. The person may be surrounded by their loved ones when they die, or they may be alone. It’s kind of hard to orchestrate either way. And no matter how many times family members ask me the million dollar question, the exact hour and minute of their death is impossible to predict.
When you watch someone die after the intentional ingestion of a lethal dose of seconal, you witness an act that is the culmination of a mindful, well thought out process. When I have attended these deaths, I have watched human beings who chose the time, place, and manner of their death with full awareness and with a dignity that you would have to behold to fully appreciate. Humbling. Inspiring. Indelibly memorable.
I still carry with me the memory of making eye contact with a patient who ingested, right after she took the meds. I was outside her room. As hospice nurse, I have to step outside while the patient is actually ingesting. This is for my protection, to avoid any accusation later by family of coercion. In this case, my patient took the meds and immediately after, wanted to see me. A family member opened the door and she and I maintained steady eye contact as the meds began to work and she lived out the last minutes of her life. Eventually her eyes closed, she slipped into a coma, and I went back in her room and stayed with her and her family until she died.
Over the months I had been her nurse, we had developed a close bond. She was not very symptomatic with her disease, so my visits were often more like long chats at her kitchen table. She shared her life story with me, as so many patients do. And she was curious about me. I was young enough to be her daughter. I had recently lost my mother and left my long marriage. These are the cases that can blur the boundaries of the nurse/patient relationship, but in this case, I never felt that our chats were anything but deeply beneficial to us both. She liked to give me advice, and my primary goal was to keep her comfortable and in her home until she died. When it came time for her to consider the EOLOA, I offered to be present with her when she ingested and she immediately accepted.
I knew it would be difficult to watch her take the meds, no matter how much I honored her for her unwavering resolve. As hospice nurse, I am not supposed to voice any opinion about someone’s decision to take the meds. I can educate and inform, but it would be intrusive of me to insert my own opinions in the matter: not my place to encourage or dissuade in any way. Nevertheless, she knew intuitively that I supported her fully in her decision and even though she would have done it regardless, I like to think that was a comfort to her.
After she died and I had stayed with her family for a while as they came to terms with what they had just witnessed, I went back to my office. I had been in touch with my team leader and the physician on call during the entire event. These days, we always send two people to ingestions, but back then, since I was the only team member my patient wanted involved in her case, I went alone. I felt strong and emotionally present throughout her ingestion, though I was anxious inside and had that feeling you have when you have prepared for something big for a long time and it’s happening right now. I felt able to support her family in their grief after she died. Then I drove back to my office and I fell apart.
Happily, I work with folks who, like me, know death intimately. But this was different, and the moment I saw my support team, it hit me with full force. A group of women sat with me in our conference room - my team leader, the doc, the head of social work - and I told them the story of the death, and I cried, and mourned my patient, and went over and over the difficult details of the event, and they listened with tons of compassion and they tried to get me to hydrate and to eat something. If I had had to go home alone, I think my grief would have been a lot more complex and would have lasted a lot longer.
As it was, I thought about my patient a lot more than I think about most patients after their death. When the anniversary of her death rolled around, I marked it - something I could not possibly do for every patient. I felt proud of her for taking ownership of her death, just as she had done for her life, and I celebrated that she had had the courage to follow her own wishes through to the end. There is a reason that the EOLOA is known in Oregon as the Death With Dignity Act.
As of today, there are six states that have legalized death with dignity acts. In January 2019, Hawaii will enact its 2018 law to become the seventh.
