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Living Well, Dying Well

May 8, 2015

When Frank Bennett was a chaplain resident at a Twin Cities hospital, he checkedin on a woman who had end-stage lung cancer. She knew she had only a few days left to live, but wasn't able to acknowledge to her husband and daughters that her time was short, much less that she had specific wishes for how she wanted to live while she was actively dying.

Her family wasn’t blind to her condition. In fact, they’d told Bennett that they could see her “shrinking before their eyes.” They wanted to talk about it, but worried that bringing up the specter of death would frighten her. So they said nothing.

Bennett was early into his career as a chaplain, but he could tell everyone was suffering from not being able to have a difficult but crucial conversation. “I was amazed that the patient, family, and providers felt like they couldn’t talk to each other,” he says. So, with the patient’s encouragement and the permission of everyone involved, he convened a meeting in her hospital room.

The patient was the first to speak. She told her husband and daughters that she knew she was dying and wanted to go home and be with her family. She hoped to work up enough energy to be able to get out of bed and make pies, an activity that had always made her happy.

“There were tears of both sadness and love all around the room,” says Bennett, who is now an associate minister at large for pastoral care at Wayzata Community Church. “Then she went home, made her pies, and died.”

Since that experience, Bennett has facilitated numerous conversations in a variety of settings to help the elderly and terminally ill communicate with their loved ones and healthcare providers about what really matters as life winds down. He stresses, however, that he is not a miracle worker. “I have no magic,” he says. “It’s just that, as a culture, we’ve gotten out of the practice of talking openly about dying. If patients, caregivers, and healthcare providers are empowered to speak openly and are given some tools for how to start these conversations, they could do it without me.”

Providing those tools to a broad range of people—individuals facing serious health challenges, elderly citizens, family members, caregivers, doctors, nurses, hospital aides, hospice workers, and others— is the goal of a new initiative that’s launching this fall at the Center for Spirituality & Healing. Called Living Well/Dying Well, the program will combine university-level coursework, community forums, workshops, and pilot programs in senior living settings to help us regain the language and skills needed to empower, nurture, and care for people at the end of life.

The program is a natural fit for the Center for Spirituality & Healing. “We want to support wellbeing at every stage of life,” says Mary Jo Kreitzer, PhD, RN, FAAN, founder and director of the Center. “Focusing on the whole aspect of living well and dying well is an exciting new program area for us.” The initiative aims to reframe end-of-life reflections from focusing only on death and dying to looking at life values, hopes, and plans in the hope of making a conscious, comfortable, and loving death the norm.

That’s no small task when you consider that at a time when medicine has forestalled death, Americans are so skittish about the D-word they put off talking about it for as long as possible. While an estimated 1.5 to 1.6 million Americans receive hospice care each year, more than 35 percent of those patients are there for less than seven days before they die, according to a 2013 report by the National Hospice and Palliative Care Organization. Experts say that’s evidence these conversations are happening much later than they should, and that waiting so long actually diminishes the quality of a person’s death. What’s more, research shows that the comfort care and symptom management provided by hospice actually prolongs life, sometimes for months.

In fact, honest conversations actually facilitate the emotional work that can happen when a person is close to dying. “There are some deep questions that get asked as a person enters the very last stage of life," according to Louise Delagran, MA, MED, education specialist and instructional designer at the Center, who is developing the program’s first course, “Empowering Patients in Living Well/Dying Well: Providing Humane Care at the End of Life.” What makes life meaningful to me? When are the tradeoffs too great to want to stay alive? At what point can I no longer stand the pain?

Answering those questions can provide important guideposts to make a person’s death as comfortable and meaningful as possible. Take Bennett’s lung cancer patient. Like most people who are dying, she wasn’t thinking about work or unrealized ambitions. She was primarily concerned with being at home with her family and enjoying simple pleasures, in her case, making pies. If she hadn’t discussed what she wanted with her family and caregivers, chances are she would have died in the hospital. “If you talk to enough healthcare providers, most will tell you a story about a person who is at the end of their life and how once they were able to communicate about what they wanted and clean up unfinished business, they were able to have the death they needed,” says Bennett.

The 5000-level course Delagran designed is open to anyone, from individuals who are ill or elderly, to families needing communication tools as their loved ones age. It’s also geared toward healthcare professionals—including students studying medicine, nursing, and social work—who often have little to no training about how to facilitate these conversations.

“Nurses at the bedsides of people who are dying often witness a lot of suffering and want to provide holistic care, but can’t because of the [protocols] of our healthcare system,” says Susan O’Conner-Von, PhD, RN, an associate professor in the School of Nursing, who teaches palliative care and pain management at the end of life. Sometimes that system prioritizes a doctor, who wants to try another treatment, even if the patient is ready to die. Or it can be that families, in their grief and fear about a loved one’s death, want to push death off for just a few more days.

Navigating these dynamics without training and ongoing support can cause burnout for doctors, nurses, and other healthcare providers who can struggle to make the best decision when they are in the face of something as frightening and emotionally fraught as death. O’Conner-Von remembers a hospice nursing student calling her cell phone, worried because a patient who was actively dying didn’t have adequate pain management. “The patient’s family wanted her to be comfortable,” says O’Conner-Von. “But some family members were worried that morphine would hasten her death. The novice nurse felt she needed to advocate for the patient so she could lessen her pain.”

With O’Conner-Von’s coaching, the novice nurse was able to talk with the family, who all agreed that they didn’t want their loved one to suffer from pain. She was given morphine, which made her comfortable enough to relax and realize that she desperately wanted to phone a family member and ask them for forgiveness. She died within 24 hours after the phone call. “The family was so appreciative for this nurse’s guidance,” says O’Conner-Von. “They were too afraid [of what was happening] to call the physician to help with her pain management.”

Living Well/Dying Well will build upon a growing cultural awareness about the value of having a “good death.” Not only are Baby Boomers advocating for more control of their healthcare at all stages of life, but the popularity of surgeon and public health researcher Atul Gawande’s book Being Mortal: Medicine and What Matters in the End—which reached No. 1 on The New York Times Nonfiction Best Seller List — signals that people are hungry for these conversations.

“Dying isn't a medical or even spiritual condition” says Bennett. “It's a human condition.”

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The Bakken Center for Spirituality & Healing blog covers a range of integrative health and wellbeing topics. For more information about our blog, contact us at csh@umn.edu