The Ultimate Beginners Guide to Coping and Talking About Death

Bobby Griffith (Creator of She's Not Doing So Well) & Death Positive Community member Tracie Santos

So you are saying there is a guide to dealing with death? No. However, Bobby Griffith, the creator and host of She's Not Doing So Well podcast has a major fear of dying. During the recording it was physically and emotionally uncomfortable for him to talk about it. What became apparent after the interview though is that actually talking about the death process and how it effects everyone helped Bobby sort of catch his breath and relax a little bit about the thought of death and dying. We asked some listeners of She's Not Doing So Well podcast to ask additional questions for Tracie.

What does "Death Positive" Mean? 

I think Caitlin Doughty of the Order of the Good Death describes this movement beautifully. Being death positive is about understanding and accepting death as a natural part of life, including all of the intense and complex feelings that encountering death and mortality can bring. It also means believing that open and honest discussion about death, including our own, can lead to healthy and positive changes in society.

What is a Death Cafe?

Death Cafes are group-directed informal discussions about death in a welcoming, nonjudgmental, nondenominational setting. In short, folks get together to discuss issues related to death and mortality over refreshments. The cafes were first started in the United Kingdom by Jon Underwood based on the work of Bernard Crettaz. All Death Cafes are nonprofit and never aim to lead people to any specific conclusion, so they are great spaces for people to explore their feelings on mortality with no “right” or “wrong” answers. Columbus is unique because Lizzy Miles, who first brought Death Cafes to the United States, organizes events here in town. 

How are you able to be so comfortable with death? 

It’s been a long process. Believe it or not, I was terrified of death as a child and young adult. I encountered death a lot in my 20s and early 30s, including the death of friends, a spouse’s cancer diagnosis, and surviving a violent crime. I kept bumping up against it in my life and finally thought “Okay, I need to figure out how this works into the big picture because it’s not going to go away.” That’s when I started learning more about the death-positive movement and untangling some of my own fears. I made an active choice to stop hiding from it. Once I began doing that, it got much easier to exist around it without so much fear.

Why is hospice care important?  

One of the most common fears that people express regarding death and dying is being alone. Dying can be a very isolating experience. Hospice care can remove some of that isolation. You can be there as support and love in a confusing and potentially frightening time. Also, when a person is seriously ill, it’s frequently not just that individual that is affected. The entire group of loved ones around them feels that stress and fear. It can be so hard when you’re inside that bubble to maneuver through that experience on top of general life responsibilities. Hospice care sometimes takes the form of running an errand or talking about something that isn’t death or illness, which isn’t always something that people think of when they think of helping someone in that situation. 

In your opinion, what does a peaceful death look like? 

For me, personally, it would be one without overwhelming physical pain and with enough mental clarity to be able to communicate my goodbyes. I think it would be very peaceful to be around nature in some way, too. I’ve become less afraid of dying alone than I have been in the past. That’s very important for some people, though, being surrounded by loved ones. Everyone's definition of a peaceful death is a bit different. I don't like crowds as a living person, so if people are putting together some huge gathering at my deathbed, someone's getting haunted.

Recall a time a patient started panicking. What did you do?

My biggest focus in that moment was to not invalidate their experience. I mean, how frustrating is it when you are upset and someone tells you to “just calm down”? I didn’t want to do that to them. I made sure my hand was there if they needed to hold or squeeze it. I talked softly, told them that I was there with them. I think people sometimes just need to express those fears and anxieties to get them out; they’re not asking for answers, and being there to make that space for them is something I can do.

What are some things people have regretted nearing the time of their death? 

I’m drawing from personal experiences here as I’d hate to disclose confidential information from patients, but certainly, people have mentioned regret over not taking opportunities in favor of “safe” options. Not traveling more, not spending more time with family; those things have come up a lot with people close to me.

Do patients tell you stories about their life? 

Oh, all the time. It’s such an incredible gift when someone trusts you in that way. Sometimes people will tell you stories that they haven’t shared with anyone in decades. They might share these wild adventures from their youth or very intense moments from their history. You just sit there and relive these important parts of someone’s life along with them.

Have you ever gotten really attached to a patient? 

Constantly. Every patient I’ve ever worked with, no matter how briefly, has a little piece of my heart. Sometimes you might be helping with a patient for an extended period of time and then go on to provide bereavement assistance to their loved ones. When that happens, you’re connecting with the same people for long periods of time. You just try to keep in mind that you don’t have forever, so you make whatever time you do have really count. 

What kind of obstacles are there for end of life issues with LGBTQIA+ Community?

It’s heartbreaking, but many people in LGBTQIA+ communities are still subjected to harassment and prejudice in some healthcare settings, even when it comes to end-of-life care. There can be tension within families over a spouse or significant other’s role in making end-of-life care decisions, and those sometimes require legal interventions. There is a long history of LGBTQIA+ people having their experiences and relationships erased in eulogies and obituaries written by other people. There is still a lot to be done to afford people basic levels of protection and ethical care.

If you could have dinner with anyone dead who would it be?  

I was very close to a family member who helped raise me, and she died suddenly before I got to tell her goodbye. I’d love to spend time with her again. 

Any advice for those who are scared of dying?

Be kind to yourself. A lot of us were raised to be scared in this way; you’re not failing if it doesn’t go away overnight or even at all. It’s totally understandable to be wary of the unknown. Sit with those fears a little if you can; sometimes just putting a name on the scary parts is enough to make them easier to handle.

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