Hospice nurse, death doula and educator Suzanne O’Brien seeks to change the conversation about death and end-of-life care, both nationally and among individual families.

To that end, she will soon publish a new book, “The Good Death: A Guide for Supporting Your Loved One Through the End of Life,” to help foster greater education for families facing a loved one’s terminal diagnosis.

O’Brien is the founder of the Doulagivers Institute, which provides education to families facing the end of life and trains professional death doulas.

Hospice News sat down with O’Brien to discuss the new book, as well as strategies hospices can use to connect with families earlier.

Could you introduce our readers to the Doulagivers Institute?

This is an institute that teaches about the end of life and all resources to do with it. So we have a lot of free resources for families. We also train professional death doulas, but it really was supposed to be designed for getting education back into the hands of families and communities.

There’s many things that are for free, because we all know that death is the number one fear right now in the world. In my experience and opinion, that fear has prevented us from understanding what support is out there, the natural course that end of life is and how we can make that end-of-life phase the best it could possibly be.

It does seem like families need a lot of education and how to face death. You’d think that it’s the most natural thing in the world, but it has gotten complicated, especially from a practical or logistical standpoint, not to mention the emotional toll, of course.

Could you say more about families’ educational needs when it comes to the loss of a loved one?

Life expectancy has almost doubled in the last 100 years. We have learned great things in the medical profession. In one sense, that’s a great thing, but at the same time, we removed end-of-life education, conversation and even seeing it for families.

So 100 years ago, people died at home and they were cared for at home, and they actually had home wakes, and this skill of caring for someone who was dying was handed down from a grandmother to a grandchild. Today, that’s all but lost, but it’s still a skill that families need. With hospice, which is a wonderful model of care, we manage that care but it’s really the families that are in the home doing the care.

The first and foremost thing that I really want people to know is that I think we just forgot that death is not a medical experience. It’s a human one. It can go really, really well with the right education, kindness and support.

Why did you write the book? What was the need you were trying to fill?

The need I’m trying to fill is that people die all over the world, and it’s not going well for most, or as well as it could go. Western medicine has kind of become infiltrated all over, and the aging population is all over.

I was a hospice nurse working in home hospice care, and for most people, it wasn’t going as well. People were coming on services very late, because we don’t talk about end of life. We don’t plan on it, and we’re not educating doctors on how to have these conversations. And so by the time we were receiving people in hospice, sometimes they had just days, and it’s very hard to get things in order then.

So for me, thinking as a hospice nurse, if I’m supposed to teach those loved ones how to do the care, I can’t do that with such a short amount of time. When the fear of death is in front of us, people are blocked from learning. So with my experience, I developed a doulagivers model of care, which is three distinct phases that I identified, of end of life and the interventions families could use in each one of those stages.

And I went to the [hospice] CEO and I said that I have an idea for this. I think that we can train family caregivers with this complete training on how to care for their loved ones. And he said, “This is great, but we can’t do it because it’s not going to fit into the reimbursement model right now.”

So I just went to the library and I held a seminar, and all of a sudden people came out. The room was packed to learn about how to care for somebody at the end of life. Then I put it live online, and heard from people all over the world. The book was another way that we could get that out and hopefully reach more people again in something that touches us all in this life.

The book, of course, is titled “The Good Death.” What is a good death?

It’s really up to the person what a good death is. But you know, if I want to share that we have so many choices to make for ourselves at the end of life, and when we get there without knowing that or preparation, people don’t know what we want or not want.

I’ve seen, literally seen people at the end of life or have a terminal diagnosis transform when you start to share with them the choices that they have. Where do you want to be cared for? Who do you want to care for you? How do you want it to look? Do you want your dog there? Then kind of all of a sudden it starts to turn different. How comfortable do you want to be? We can explain that and make sure the families are supported.

How do you think hospices can better support caregivers through the process of losing a loved one?

The earlier we can invite people into this conversation, the better it will be. So I think hospices, in my opinion, need to support the community in this conversational way before they have somebody that gets on hospice, because it’s usually a crisis. Then it’s usually full of fear, and it’s usually putting some band aids on things, which is not how we want this to go.

Hospices could have a way — and it could be as easy as having a once a month seminar or once a month gathering — that people can come, get information, have their plans, know what to ask their loved ones, so that there is a road map and a blueprint. When that day inevitably comes, it is so much better. They get to know the hospice and now we just step into that space.

So I really want to implore that hospices try and engage with their communities with education earlier — now, rather than later. That makes a huge difference.