The Next Phase: We spoke with a death doula about dying alone

Jocelyn Arruda, licensed marriage and family therapist and certified end of life doula

As hospitals ban visitors to slow the spread of COVID-19, the stories of people dying in hospitals without the comfort of family nearby are heartbreaking — both for the patient and the patient’s family. I recently reached out to Jocelyn Arruda, a death doula in our community, to talk about what these patients and their families are facing.

Emily Olson (Motif): What is a death doula?

Jocelyn Arruda: A death doula provides support and care at the end of life. If a person is aware that the end of life is approaching and they want to set up a support system, they might call a death doula. A death doula would work with the dying person, going through a three-part process of helping them to find meaning in their life. What was their meaning, what did they experience, what was a value to them? These could be positive or difficult experiences.

We work with the person on a life review. Then there is a planning part of the process. How does the person envision their dying experience and the weeks and days and months leading up to it? What environment do they want to be in? Who do they want to be surrounded by? Do they want to be at home?

But whether someone is going to be in a hospital, hospice or home, we want to respect what they want that to look like. Do they want their cat on the bed? Do they want music playing? Are there fragrances they find soothing? Is a blanket comforting? We help them figure that out because it’s not something the majority of people want to talk about. The death doula’s role is to help facilitate that conversation with the patient and their family, honor those wishes and ease the person into the next phase.

 EO: What would you recommend to a family with someone in the hospital now who is facing the end of their life alone?

JA: We’ve all seen the news stories and try to rally some sense of support for families, and watching people experience the loss of a loved one through technology is a double-edged sword. I think it’s harsh to say goodbye over the phone. It’s very painful and is the reality of what we have right now. And it’s not just COVID-19. It’s people who have been dying in general and now visitors are severely restricted. But I think that if people have been fortunate enough to have these conversations before their own terminal state, then maybe they’ve been able to plan with their families the pieces that I described. I think it gets more complicated for the family left to grieve after the fact.  

EO: Governor Raimondo recently reminded the state in a press conference that funerals are the types of gatherings currently banned. How do you celebrate the life of someone without a funeral?

JA: Part of the death doula work is legacy work. In an ideal situation, when someone knows that they’re dying and you can work with the family, legacy work is important. That can be collecting memories from family and friends, inquiring about life events that might have been important or maybe putting together a book, a journal or a photo album.

Even if a death is unexpected and there wasn’t time to build a legacy project with the person who died, the family can do legacy work. It has to be creative right now because extended family can’t get together to do a toast or eulogy or share stories. People can use Zoom, but it’s different than being in the same space together.

EO: What are the emotional ramifications of not being able to hold a funeral for a loved one?

JA: What happens to people is there’s a sense of disbelief or unreality, especially if you can’t witness the death. A lot of the bodies are just being cremated. A common thing that can happen, and sometimes you see that with children, if they’re not allowed to interact with the body, touch the face, kiss the forehead, hold the hand — if there’s no interaction, it’s very surreal for people. If someone is ill, if someone has time to prepare and start saying goodbye, it’s still very painful. But if people die suddenly and we can’t have the rituals, it can leave people in a state of complicated grief because it doesn’t feel real.  

If you can’t gather and bear witness to someone’s grief or have someone bear witness to our grief, it skips the reality of what happened and impedes the healing process. At a funeral, people cry and the reality is kind of brought home. People are losing a lot of that by not being able to be together for a funeral. It’s not a good situation.

We’re very isolated as it is, but now imagine on top of that you lose someone. Imagine losing a spouse. You don’t have the interaction with the body. You can’t celebrate the life. We’re asking people to hold off, but it complicates the grief.

EO: Do you have any words of comfort?

JA: One thing that keeps crossing my mind is that death is something that we do ultimately by ourselves whether someone is sitting by our bed and holding our hand or not. That last step is something that happens completely independently, and maybe that’s comforting for some people.

EO: Is there a silver lining to all of this?

JA: Our society doesn’t talk about death. But now, so many people are starting to think about death, and they want to talk about it. People are opening up to it a little bit more.   

Jocelyn Arruda is a licensed marriage and family therapist and certified end of life doula. For information, go to jocelynarrudalmft.com/