Interview with Mike Bernhagen, co-producer of the documentary film Consider the Conversation.

DeathWise: How did your own mother’s death play a role in inspiring this film?

Mike Bernhagen: I was the youngest of seven children. Mom was 43 and Dad was 47 when I was born, and my grandparents were in their 70’s. All of my cousins were already adults. So I grew up in this environment where old meant wise and practical and normal. It was instrumental in preparing me for the journey that would come later in life.

When Mom passed on in 2003, her dying trajectory, if you will, was very typical for most Americans these days. She died slowly and incrementally from two chronic diseases – congestive heart failure and vascular dementia. My father was 85 at that time, and cared for her at home as best he could, with a little help from my brother who lived in town. Finally, in the last month of her life, it became too much for him to handle all alone.

She went to the hospital with congestive heart failure, and then was discharged to a nursing home for cardiac rehab. But the rehab wasn’t working, and that’s when I got the call that none of us hope to get: “Mom is in the hospital again and the doctors say there’s nothing more that can be done for her, so you may want to come up as soon as possible and say your final goodbye.”

I knew she was ill and getting old and had all these needs, but you’re never quite prepared for that call. As Americans we feel we can beat the odds, that death is somehow optional with all this medicine and technology that we have, and that it can solve every physical problem. Yet now it was clear that wasn’t going to happen.

My older brother and I went to see her first thing the next morning, and what transpired in that hospital between my mom and me was profound. She hadn’t called me by name for about three years. Like other advanced dementia or Alzheimer’s patients, she usually only had a few words to say.

I had never been in the presence of a dying person before, and I didn’t know what to do. So I simply sat on the hospital bed next to her and held her hands in mine. We looked deeply into each other’s eyes for several minutes, saying nothing.

In my mind I was thinking, “This woman doesn’t have a clue who I am. She hasn’t called me by my name in such a long time.” Yet there was a look in her eyes that told my heart otherwise. She was kissing my hands, and I was stroking her face. Then she made this hand movement towards me as if she wanted to speak. I leaned over and she said four simple words: “I’ve always loved you.”

I was stunned. Tears came to my eyes, and I said, “Mom, I love you, too.”

And that was profound for a couple of reasons. Number one her clinical state, her advanced vascular dementia. I saw in that brief moment the awakening which sometimes does happen with those kinds of patients. She was oriented to person, place and time. This was the business she needed to complete with her youngest son.

The other profound thing is that my family is from conservative, Wisconsin German, Roman Catholic roots. We rarely, if ever, said those words. The love was understood, but unspoken. So for my mother to say those words on her deathbed was profound.

My brother also had his opportunity to say goodbye. Then we went out to lunch with Dad, and I went home. Two days later I got the call that she had passed away in the nursing home.

Dad asked me to do something else I had never done before, and that was to deliver Mom’s eulogy. So I did that. I eulogized my mother, and we buried her on a beautiful October day, when it was sunny and dry in Wisconsin. And I buried something else on that day -my grief.

DW: That’s an incredible story, Mike. You really got the direct experience of the issues related to death and dying. Did that influence your decision to become a hospice educator?

Mike: Six months after my mother died, I told the story of her passing to a nurse I used to work with. She got this bewildered look on her face, and asked me a simple question that haunts me to this day - “Didn’t anybody mention hospice as an option to your family?” And I said, “What’s that? Is that a place you go to when you only have a day or two left to live?”

She replied, “It can be, but for the most part, it’s a type of care provided wherever the patient lives. It can be at home, in the assisted living facility, in the nursing home or in the hospital.” She went on. Here’s how it could have helped your mother stay comfortable. Here’s how it could have allowed her to stay at home with your father and provided additional help. Here’s how it would have been paid for. Here’s how it could have helped you with the grief you’re so obviously struggling with.

DW: How did that make you feel?

Mike: My initial reaction was one of anger and embarrassment. I was angry that none of the highly trained medical professionals in my hometown mentioned hospice as an option. Not her family practitioner, not her cardiologist, none of the nurses or social workers in the hospital or nursing home.

And I was embarrassed because I had worked for ten years in the medical field, doing development work on the business side, and I didn’t know a thing about hospice. Before my mother died, I had quit my job because I was tired of the egos and politics and the hierarchy that is so vertical in medicine.

These two emotions stewed within me for quite some time, and I began to do research. I talked to people I trusted who knew about these things, and finally got the courage to return to medicine but this time as a hospice worker.

This time I told myself it wouldn’t be about how much money I made, market share, a fancy title, or how large my office was. This time it would be about the message contained in my mother’s final goodbye. I got a job as a hospice marketer and educator in Milwaukee, Wisconsin. That began my hospice journey.

DW: How did Terry get involved in making the film?

Mike: In 2005, I went to our annual father-child camping trip with my good friend, Terry Kaldhusdal. He’s an amazing 4th grade teacher who also makes documentaries. Around the campfire when we had a minute to ourselves, he asked me how the hospice job was going. I told him about some of the things I was seeing. Being with families at that time when they are faced with a terminal prognosis. Are they going in the direction of hospice, or continuing to fight this thing? I shared my experiences speaking at senior centers, assisted living centers, and churches.

I told him, “Terry, the end of life situation in this country is broken.” I was seeing it from an outsider’s perspective that I didn’t have before. I’d been a business development guy, and now I saw the human element. With physicians in particular, I encountered a general attitude of polite indifference to the subject of hospice. The politeness I could understand. But I couldn’t wrap my mind around the indifference.

Then I told him the story about my mother. Terry was surprised that I hadn’t known about hospice. He said he’d like to make a film about this someday, and asked if I would help him.

DW: When did you actually start the project?

Mike: It was about two years later when our conversations intensified. Terry was at the White House in April of 2007, being recognized as Teacher of the Year from Wisconsin. It was a lovely ceremony, and afterwards, walking back to the hotel with his wife, he wanted to share his happiness and decided to call his mother. Then he called his older brother Pete, who he idolized. Pete was a computer scientist in Silicon Valley.

When he reached Pete and told him the story of his day at the White House, there was silence on the other end of the line. Terry said, “Is everything okay, Pete?” His brother said, “Well, I knew this was a big day for you, Terry, and I didn’t want to say anything. But a few weeks ago I was diagnosed with pancreatic cancer.”

Terry simultaneously had the best and worst day of his life. Suddenly he had a strong personal calling to do the film. When the time came that Pete’s doctors told him he was ready for hospice, Pete called Terry and said, “What does this mean?” And Terry said, “Don’t you know? This means you’re dying. Didn’t your doctor have this conversation with you?” That’s when Terry and I began to work together more in earnest.

DW: So now you both had very personal reasons to create and promote your film. How did you go about it?

Mike: Regarding the making of the film, there was no business plan. The project just seemed to take on a life of its own. It initially started as a local thing here in southeastern Wisconsin, and then gradually morphed into a regional thing with help from medical professionals in other states. Then I thought, why not talk to some top names in the country? So we started interviewing nationally known people like Drs. Ira Byock and Elliott Fisher of Dartmouth, both of whom had just been on 60 Minutes, and then journalist Stephen Kiernan.

Later on, someone told us we didn’t have enough diversity in our film. So in April of 2010, we took our cameras onto the streets of New York City to interview people of all different backgrounds. We asked them, “When it’s your time to die, where would you like to be and with whom?” All but two wanted to die at home surrounded by the love of family and not in a hospital or nursing home. But the reality is that most of them won’t. That was our most powerful lesson.

DW: What message would you like people to take away after watching your film?

Mike: I’d like people to understand that in the United States today, we no longer see dying as normal. Not like the old days when family and friends would keep vigil for those who were in their final days and hours of life. Even 40 years ago, death was more sudden. Today, 90 percent of us can expect to die slowly from a chronic disease.

I know from personal experience that medical people are trained in a linear way. That’s why they tend to view someone at the end of life as a set of medical problems that can or cannot be fixed rather than as a human being with hopes and fears who happens to be sick.

In our film, through the sharing of beautiful stories gathered from around the country, we hope to change the current American attitude from one that primarily views death as a failed medical event to one that sees it as a normal process rich in opportunity for human development.

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Click here to learn more about the documentary film, Consider the Conversation.