“What I tell people is you can make a difference, one person, one conversation at a time.

And if enough people do this, give each other permission, it begins to ripple.” Michael Bernhagen

Michael Bernhagen was tired of the politics, egos and hierarchy after 10 years in business development for the largest integrated healthcare delivery systems and multi-specialty group practices in Wisconsin. His focus: patient acquisition and revenue growth.

In 2003, he quit. And that summer, his mother Rita began to fail from congestive heart failure and vascular dementia.  

It would be the first time he had watched someone he loved slip away.

Six months after his mother's death, he had lunch with a nurse he had worked with. He found he wanted to talk about his mother and how the experience affected him.

His friend asked if anyone had told him about hospice (in home care or in-patient hospital hospice care and grief counseling).

“No one, not even my sister who was a director of nursing, had said anything about hospice, Bernhagen said. “I thought I was a big shot, but I knew nothing about end of life care or issues. It was the beginning of my education on end of life care.”

In November of 2004 Bernhagen received training and became a hospice care worker and advocate. Today he is the Director of Community Engagement and Care Partner Relations at Rainbow Hospice in Wisconsin.

Bernhagen has made it his mission to promote patient-centered care; to promote having conversations between family members, between doctors and patients about how those patients want to live at the end of their lives.

“My mother did not have an advance directive or living will and we did not ask her, the doctors did not ask her,” Bernhagen said. “Doctors are not properly trained and do not have the time, tools or resources.

“It is important to know what a patient wants to avoid prolonged suffering – physical, emotional, spiritual and financial suffering,” he said.

Having been a healthcare insider, Bernhagen knew hospice was not mainstream medicine. Bernhagen called doctors' offices, nursing homes, senior citizen programs, everywhere he could think of to visit and talk about end of life care.

In doing this he met patients and families faced with decisions and patients with questions: would they still be seeing their doctor, would they suffer? What is going to happen to me after I die?

“The lesson I learned from the patients was that they were not afraid of dying, they were afraid of the dying process,” Bernhagen said. “This is what Terry and I view as an unintended consequence.”

Terry Kaldhusdal and Bernhagen are the co-producers of the award-winning documentary, “Consider the Conversation” which encourages people to talk about how they want to spend their last months, weeks and days and to make those wishes known to family and doctors.

The two men spent two years making the film, donating their time and financing all $43,000 through donations.

“The point is that end of life wishes should not be left to chance,” Bernhagen said. “That's why Terry and I decided to make our first film, 'Consider the Conversation,' not to answer questions, but to ask questions the viewers need to think about and answer for themselves.

“Why is having hope OK, but not the same as having a plan.”

In the patient-centered care that Bernhagen and others are promoting, attention is given to the patient's wishes; what they want and do not want.

Do they want hospice care? Do they want to be at home? Do they want to be in the hospital and continue efforts to prolong their lives? Or would they prefer a combination of the choices.

Many patients, not being asked what they want, are given costly treatments and go through procedures aimed at lengthening their lives – even when there is no indication such measures will alter the outcome.

Bernhagen said American medicine is in a painful part of learning; consciously aware that the healthcare system they helped to create is causing suffering. Now they are asking, how can we prevent it?

Given the passage in 1990 of the Patient Self-Determination Act giving patients the right to make decisions about their care, to refuse or accept treatment, one might wonder why it has taken a documentary 23 years later to bring self-determination to light. To bring self-determination into conversations.

Since it went into law December of 1991, all nursing homes, hospitals, hospice providers, HMOs, home health agencies, and all other healthcare institutions are required to talk to patients about and provide information about Advance Healthcare Directives.

However, Medicare does not cover visits for advanced care planning conversations between patient and doctor. Nor does any commercial insurance company at this time, Bernhagen said.

They were to be covered under Pres. Obama's healthcare reform bill, but once those opposed to the bill referred to such conversations as “death panels” in 2009, Medicare coverage was removed.

Bernhagen noted a doctor in the small town of LaCrosse, Wis., who told Bernhagen he had these conversations with his patients without charge.

“Now all doctors in Wisconsin, led by the Wisconsin Medical Society, have these conversations with their patients, despite lack of coverage or reimbursement,” Bernhagen said.

While making the film, they learned that where we die has fundamentally changed. Today, 75 percent of us can expect to die in the hospital. Thanks to modern medicine we can expect to die incrementally, slowly – quantity of life over quality of life. Given that statistic, how does the hospitalist movement affect the care of a terminal patient in the hospital who has not been given permission to have the conversation about their care?

Said Bernhagen: “Their function was really developed for efficiency purposes. There are quite a few primary cares who see their patients in the in-care setting, and follow them into the hospital setting. But, over time hospitals integrated themselves with physician practices and economic practices focused on treating people quickly. Hospitalists did nothing but in-patient care.

“The economic goals were reached because people were discharged earlier. But an unintended consequence was these doctors had no relationship with the patients. They didn't know them or their wishes. Some tell patients about hospice, some do not. It's an important lesson for us as a culture: it is thought the process of conversation that you find out what matters.”

Community Oxygen sponsored the viewing of “Consider the Conversation” on May 14at the Harbor Theater in Boothbay Harbor followed by a panel discussion. This marked the first public presentation of the documentary in Maine.

Since its release in 2011 “Consider the Conversation” has been broadcast over 400 times on 163 PBS stations in 30 states.  It has won 11 awards including one for Journalistic Excellence and an Indie Award of Merit for the use of film for social change.