Death with Dignity - Not Quite!
2010 April 19 - 28
Created by Tom on 08/05/2010
There was a break in the updates at this most important juncture, since events got very intense very quickly. I will try to do one from memory:
Assisted by advice, equipment and drugs from hospice nurses, Les and I cared for her at home around the clock. Tuesday morning Karen was up at 2 am bustling around her small apartment and at about 4 am I asked if she was ok. Not only was she ok, but she had lots of energy and great plans to connect with her nieces, two of whom had communicated to her how much they cared (which Karen had not known) -- perhaps doing some intergenerational activity with them.
On Weds night and Thurs morning she was feeling nauseous in a way that was not relieved by emptying her stomach and she said that she wanted to do the death-with-dignity drugs Thursday. We met with the volunteers who work with that program (they, the hospice people and the hospital staff were all very great, compassionate, down-to-earth folks, a real blessing to work with) and made arrangements to do it Thursday night (which we later realized was Earth Day). Karen took some anti-nausea meds at 7pm and I played songs for her on my guitar and sang (something I hadn't done in over a year). The two volunteers from Compassion and Choices were sitting off to the side breaking up the 100 Seconal capsules, producing a white powder which they mixed with water. Les loaded the half-cup of creamy liquid into two big plastic non-needle syringes (with a little left over in a third syringe).
When the time came around 8:30 pm, I sat next to Karen, arm around her, on her at-home hospital bed which was set so that she could easily sit up in it. She took the syringes and pushed the liquid into her stomach tube, followed by some water to get it all into her stomach. She sat back, still relaxed and smiling, as all of us waited around her in what felt like a sacred space. About 30 seconds later her eyes suddenly opened wide, bugged out and, with a startled and somewhat frightened expression, she whispered "Dizzy…dizzy…" and suddenly threw up white liquid all over the front of her shirt. She then promptly collapsed back, unconscious.
Suddenly we were all in motion. Les and the Compassion and Choices volunteers were looking for something to catch her vomit while I yelled at them to grab the pink basin hospice had provided, while I tried to catch her vomit in my hands. We sort of got about half of it while she was throwing up and then did what we could to clean her up. Shaken but hopeful, we all sat back and waited, talking quietly. The woman from Compassion and Choices was pretty sure she would die, although it might take a while.
After two hours the volunteers left, saying that they'd seen one case where it took someone 24 hours to die, although the usual time was 20-60 minutes. None of us knew what would happen since no one in the decade of Oregon's program had ever thrown up most of the medicine. Les and I contacted hospice and sat vigil.
For the next three days Les and I cared for Karen in a coma in her hospital bed in her one-room apartment, taking turns sleeping on a mat on the floor, advised by hospice on how to help keep a person in a coma comfortable. No one had any idea how long this would last, if she would come out of it, and if she would live or die. She was totally unresponsive, limp and unconscious. We learned to turn her every few hours to avoid bed sores (although one night she inexplicably got a very large blister on her left heel). We moistened her lips with water and gave her liquid meds orally. Halfway through we discovered her tongue was dry and cracked like a dry lakebed. I was very upset and we tried to swab her tongue with water and salve and give her ice chips, but often her mouth was closed to tightly. She had trouble breathing when her throat got clogged with secretions and were afraid she'd choke to death, but the hospice nurse gave us a medicine to reduce secretions, which handled it. Hospice even came and gave her a bed bath and installed a catheter. But the days dragged with around the clock attention and both Les and I were getting very worn down. The situation was unprecedented; no one could tell us what to expect. On three occasions during this time Karen opened her eyes, turned her head, and seemed to look directly at us -- albeit with a far-off stare -- twice at me, once at Les. We rejoiced and tried to talk with her, telling her how much we loved her and how happy we were to see she was there, but after perhaps 30 seconds her eyes closed and her head fell back into stupor.
Friends and neighbors came and went; we were surprised at the neighbors who came who obviously loved her a lot. They talked with and about her; we had heard of both stories and studies that suggest many comatose people hear what's going on around them. One fellow who lived next door wrote her a poem and sat in the room silently for several hours.
On Monday morning I got a phone call from Karen's good friend Meg Parker. I decided to put on the speaker phone and place it by Karen's head. As Meg talked, Karen's eyes began to flutter and her mouth move. She was clearly trying to say something, but couldn't. Again, we rejoiced and told Meg what was happening, and she was also excited.
From that point Karen began to be present and try to talk. It was not easy. Her tongue was swollen and she had poor control of her mouth; her words started out so slurry we had no idea what she was saying. This changed slowly during the day. She could clearly understand us, but we couldn't understand her. There was much back-and-forth, "Are you trying to say X?" Sometimes she would say something that was a perfect blend of "Yes" and "No" -- and say it with intense vehemence. Often these scenes were a mix of high comedy and Hell itself, with frustration running really high on both sides. As the afternoon wore on, we were slowly able to more meaningfully converse
At one point she said to Les and me, "People were orange!" She remembered little from her coma experience except that it was very unpleasant and people were orange. Later she said they we were orange, and it seemed that those few times she looked at us, she was staring at us because we were orange. We wondered (only half jokingly) if she'd been to hell. [Weeks later, she said that the whole scene was orange, that people were silhouetted against it, but some had orange faces. She took this to be connected to the fires on the Deepwater Horizon oil rig, which happened right before her suicide attempt, that she'd somehow connected to the consciousness of people who had died or escaped from those fires. She felt connected to that environmental tragedy at a deep spirit level.]
She found could move her arms a bit but not hold anything. She was able to drink a bit, carefully. But by evening she complained that her hands were going numb and she felt her body was closing down, and she slept little or not at all that night.
I cannot recall all the problems that Monday night, but they were not fun for any of us. One particularly frustrating incident involved Karen upset that her mouth kept opening as she fell asleep and then drying out. She wanted us to make her mouth stay closed. First I tried pillows, but they smothered her. Then I tried arranging her eye mask under her chin and the tie-string on her head, but I had to keep adding padding on her head and cheeks to get it tight enough… and then it broke. We all felt like laughing and crying at once. I can't even recall now what we finally did with that. But at one point that night Karen was issuing me orders and I cracked, telling her "If you want to handle it yourself, you can, and I'll get out of here." She immediately changed her tune.
Monday night and Tuesday morning she said she wanted to do her death with dignity pills again. Tuesday, April 27, Les and I launched into a mad rush to get a prescription, buy the $500 pills, and arrange with the Compassion and Choice people to come to Karen's apartment that night at 7 pm. Only a few doctors and pharmacies are willing and able to participate in this program (those who work for the Catholic hospital which dominates health care here must sign a contract saying they will not participate), and the news got around about Karen's exceptional case. It was being watched with interest and compassion.
She felt somewhat better in the afternoon and was in a positively saintly place, saying remarkable "teachings" to a few people who visited her, much to Les' and my amazement. Two of our other close local friends said they wanted to come but couldn't until around 6:45 after work.
Late afternoon we all slept for several hours, exhausted, Les on the floor mat, me in the hospital bed with Karen, expecting it was our last nap together. Evening crept up on us.
At 6:20 pm Karen asked to be lifted from her hospital bed onto a small bedside commode, where she sat for 20 minutes with her head in her hands, trying to shit, as several local friends stopped by, some to say goodbye and one, Meg Parker, to be with us through Karen's next attempt at consciously dying.
At 7:40 Karen, who had had a walnut-sized poop (the first in a week), looked up and said she didn't want to do the suicide pills. She wanted to go to the Emergency Room for an X-ray to see if her bowel blockage was gone. I, who had just spent $500 on the suicide pills, was strung out, totally burned out and stretched to my last edge, lost it again, seriously; I really blew a gasket. I told her that the fact that she'd had that tiny poop was no reason to believe her bowel blockage was gone, and that a trip to the Emergency Room for an X-ray, would -- since it would be covered by neither hospice nor Medicaid -- cost me about $2000 that I could ill afford. I said the whole thing was a crazy money-down-the-drain situation and I wouldn't participate in it.
But Karen dug in her heals. She said "Miracles happen." I withdrew to a corner of the room. The Compassion and Choices volunteer came and we sent her away. Les and Meg continued the conversation with Karen.
I knew and know that Karen had the full right, per the law and all ethical considerations, to not take the suicide medicine, right up to the last minute, and she had decided to take the opportunity to say No. But I was exhausted, running on fumes, and the finish line had just been moved. I had pushed myself beyond endurance to try to help her have a peaceful exit and now she was (as far as I could see) throwing all that away. Her prospects were not good, and I just had to have a break. I stayed long enough to help us all figure a way to get an X-ray for her the next day without going to the ER, using Urgent Care and/or a radiology lab at a cost of only several hundred dollars.
Our two friends came and shortly after 7 pm I went home to my co-op with them, my heart hardened and closed to Karen, leaving her to Les and Meg. Since Les, too, was burned out, Meg stayed up with Karen that night (to give Les some unbroken sleep), which burned her out. Les stayed with Karen Wednesday, during which she became even more articulate, but felt her mind was clouded by the remaining seconal and dehydration. Her doctor took pity on her and that night Les and Meg took Karen to the hospital to help her get hydrated with IV, and she left hospice care.
I spent most of Wednesday in my own room, sleeping and staring at the ceiling. I wrote to Karen's sister Michelle, "Karen's scene has flipped several times since I last communicated with you. Right now I'm in a very difficult place with it all and would like to talk with you as soon as you can. Karen is still alive, and now awake and communicating. And I'm breaking down."