Helping a Dear Friend On Life Support to Die Peacefully

Patti, before she found herself at the bedside of Irene, who was on life support.

This story is of Patti, as told by Irena Kaci. Our “Opening Our Hearts” stories are based on people’s real-life experiences with loss. By sharing these experiences publicly, we hope to help our readers feel less alone in their experience of grief and, ultimately, to aid them in their healing processes. In this article, we tell the story of Patti who collaborated with a stranger to serve as a healthcare agent for a dear friend on life support. 

My name is Patti, and I have always been very comfortable with end-of-life issues. Years ago I was trained as a hospital chaplain out in Oakland, California. If you’re a stranger to Oakland, it bears mentioning that it’s a rough-around-the-edges city with lots of stuff always going on. Needless to say, I saw plenty things that were hard to stomach. But one of the hardest and most rewarding experiences for me wasn’t directly connected to my work.

I had an old friend named Irene, whom I hadn’t seen in ages. Irene and I met when we both went to school at JFK University. We started off in a regular Bachelor of Arts program and then continued together to graduate school in a clinical psychology program. I was in my 40s then, so it was a really important friendship because it’s hard to make friends after a certain age. She liked to say that I was “the first friend she made in graduate school.” We saw each other a few times after we graduated, but Irene always had medical challenges that made it difficult for us to stay in touch with any consistency.

Patti in San Francisco at Cafe Trieste

I hadn’t heard from Irene in a while, when one day I got a call from a doctor at a skilled nursing facility out in Marin County asking me to go there to see Irene. She said, “I wanted to inform you that Irene is dying and she’s on life support. You are the second person on her list of healthcare proxy options. The other woman is someone named Dee. We’d like you both to come out here and help with the healthcare directive. Are you available to do that?”

I did not know Dee at all. I’d never even met her.

I was not surprised that Irene had designated me as a healthcare proxy. She and I were still close during the time that I transitioned from hospital chaplain to art therapist in my work. She also knew me well enough to know that I was very sensitive to following people’s wishes when it came to end-of-life directives. However, I did not know Dee at all. I’d never even met her.

I made the call just the same because I knew that is what Irene would’ve wanted me to do. When we got on the phone with each other, Dee and I were very tentative. We were about to embark on this difficult journey of saying goodbye to our friend and of enforcing her wishes with both the medical team and possibly with each other. She agreed to pick me up at a BART station and drive up north together.

We met in her car and immediately started chatting in hopes of figuring each other out. She and Irene had met while working in insurance together a few years back, so her friendship felt like a kind of continuation of my friendship with Irene.

Inspired by her experiences, Patti makes her art in all forms and has her work featured in many gallery shows.

We drove out to this nursing facility together and had this great conversation on the way. It’s not negligible to be able to connect with someone so quickly and under such challenging circumstances. We could’ve easily crumbled under the pressure and ended up at each other’s throats. But, no, Dee was really fantastic.

I knew that this was not what Irene wanted.

I remember saying to her “You know I get why Irene put us both as her healthcare proxies. I think she knew us both really well, and knew that we could do this for her.” We both really got that Irene would rather pass peacefully than be forced to live on life support. We discussed it and decided that if that’s what it came down to, if she was simply being kept alive by machinery, that we would get her off life support. That was our number one directive.

When we finally got to the facility where Irene was, we were told that she had suffered terrible scarring in her lungs and could not breathe on her own. They were driving forced air into her lungs to help her stay alive. Her mouth was propped open with an endotracheal tube and it looked terribly uncomfortable and unnatural. I knew that this was not what Irene wanted.

We met with the doctor and the respiratory specialist to determine next steps. Irene’s care team told us that she was very close to dying, but that a cousin was supposed to come visit to help make final arrangements.

Patti has had much time to reflect on her experience.

We waited for a long time. I can’t even tell anymore how long it was. I just remember waiting and waiting. There was a chaplain in this facility too, and she was so kind. She sang to us and kept us company through much of the wait. We would sing together, and that was a great comfort for both of us, and also, in my opinion, to Irene. The cousin ended up having to cancel at the end.

At this point, I felt I needed to be much more proactive. I turned to Dee and said: ”I think we need to get to the doctor. I think we really need to do this. Poor Irene! She’s on a ventilator and she very clearly told us that it wouldn’t be what she’d want.” Dee agreed. After a lot of back and forth with the medical staff we got the doctor and the respiratory specialist back to meet with us.

Understandably, medical professionals get nervous about taking people off life support. In theory, being a medical proxy means that you really just say the word and medical staff is supposed to comply. However, the truth of it is that it’s hard for medical staff to feel completely comfortable with that arrangement. I could tell the doctors wanted to get some encouragement from Irene’s family. Since the cousin ended up cancelling, the doctor called her sister.

When Irene’s sister got on the phone with us, she confirmed that she supported the medical directive that we were enacting.

Irene’s sister had visited many times but she lived far away and it was not easy for her to make the trip. When Irene’s sister got on the phone with us, she confirmed that she supported the medical directive that we were enacting. It was only then that the wheels were really set in motion for the last steps.

It took a while to get the final paperwork signed. We also had a listing for where her body was going to go after she died. Dee was so helpful toward the end with filling out all the paperwork; it really was a two-woman job! Finally the time came and the respiratory therapist put some morphine in Irene’s IV to ease her dying.

We gathered around her, in prayer and in song. The chaplain led the singing and within five minutes Irene died. That moment of her death really felt like such a confirmation of Irene’s will. It was like she wanted out for so long and finally we came and opened the gate. She was out. She was free.

I loved Irene, and that room was filled with love.

Dee and I talked about it a long time after too. We felt strongly that we had honored Irene’s wishes. But even with that, there was still some guilt, some worry. I remember wanting to call Irene up and make absolutely sure. It was an incredible comfort having made the decision with someone else as loving as Dee was. Between her and the chaplain, I really felt so supported and buoyed into this experience. I loved Irene, and that room was filled with love.

On Patti’s Facebook, poetically, an examination of still life

We stayed a little bit of time. Irene was signed up with Neptune Society and we made sure that they were called and the records were transferred. We lovingly packed up Irene’s belongings. She didn’t have very much personal stuff there but we wanted to make sure that we gathered up what was left. After that we didn’t stay for them to come remove the body. We said our goodbyes.

On the drive back, we were mostly quiet. I think we were each of us processing the events privately because the experience had been so intense. When we recapped a little, the conversation revolved around how lovely and comforting the chaplain had been. Her singing really moved us through the process, and also simply moved us.

It is so important to me to do that kind of work for strangers, even, let alone someone I loved.

It has been nearly three years now since Irene died. Dee and I are still connected on social media but never spoke again after that experience. I am so glad that I was able to give my friend this final peace. It is so important to me to do that kind of work for strangers, even, let alone someone I loved. But maybe because I was doing it for someone I loved, it was a new kind of upsetting. Even knowing that she was already dead in all the important ways, it was a jarring role to play. When I reflect on it, I am left feeling a bit unsettled. Sometimes in my head, I joke and tell her that I traded her some of my own peace of mind for her final peace.