DEATH WILL COME FOR US ALL ONE DAY. It’s a fact, yet we fear talking about death with our loved ones, as if merely mentioning it will conjure up the Grim Reaper. What if we could reframe death and embrace it as a natural part of life and living?
November is Hospice and Palliative Care Month. There are many events and activities in the Rochester area designed to spark a conversation within the community about death and dying.
Kylie Osterhus works at Mayo Clinic in the Office of Decedent Affairs and is touched by death every day. In an effort to get the conversation started and move death from a taboo topic into the mainstream, Osterhus and several other women working in various aspects of the death and dying field have organized numerous community events designed to normalize death.
Overcoming societal hurdles—like talking about taboo subjects—takes courage and determination. However, these women who see the aftermath of death are passionate about bringing death out of the shadows. There is a death acceptance movement, which is intended to trigger those conversations. As Osterhus says, these are “important conversations we all face.”
Beth Kangas, executive director of Zumbro Valley Medical Society is heavily involved with organizing the Community Reflections on Living and Dying events running throughout the month of November. The goal of these events is to inspire ongoing conversations about death and living. Kangas says, “When we’re confronted with a diagnosis or death—our own or somebody else’s—it can make us reflect on our lives. We want to encourage those conversations…so we can start thinking about how we want to live our lives.”
ELEPHANT IN THE ROOM
The Rochester Public Library has been hosting the Elephant in the Room group for the past couple of years. Librarian Susan Hansen shares, “The elephant in the room is a topic no one ever wants to talk about. These days, the topic is death, whereas in the early 1900s the topic was sex.” Hansen explains, “When you lived on the farm, Grandma lived with you and died at home, the animals died and death was common. Now we don’t see it, and we don’t talk about it.”
Jennie Joa is a community member interested in the topic of death and dying. She has followed the death acceptance movement which includes discussions about taking back our rituals and normalizing death. She adds, “The industry has determined how we think about death.”
“We, in 2018, are not much further along than when we first started embalming,” Joa shares. “Embalming arose out of the Civil War because they wanted to get the soldiers back to their homes, and they were decomposing on the trains.” Embalming bodies gave rise to the funeral industry. “Historically, it’s interesting. Just like birthing, death started with women in the house. Then it transitioned to a profession and became a man’s business.”
PALLIATIVE CARE AND HOSPICE
Rachel Gentes, nurse practitioner in palliative medicine at Mayo Clinic, explains, “Palliative care is all about enhancing or improving somebody’s overall quality of life within the setting of living with a very serious illness.” She continues, by clarifying: “All hospice care is palliative care, but not all palliative care is hospice care.”
Hospice care is for patients who are expected to live six months or less. Oftentimes, patients don’t enter hospice until close to the end of their life. Maureen Bigelow, patient care coordinator with the Mayo Clinic hospice program, says, “It’s better if we can come in sooner than later to get to know the family, understand their values and belief systems and help support that. Then we can become more of an advocate for them at that time in their life.”
“Palliative care is the whole reason I chose to become a nurse,” says Gentes. “Palliative care is more about life and living and helping people live as well as they can for as long as they possibly can. Palliative care afforded me the opportunity to sit at the bedsides of people and ask them how they are doing. We oftentimes don’t have the time to sit with a patient and say, ‘How does all of this medical stuff affect you? What are you worried about? What have you been told is best case/worst case scenario? Has what you hoped for evolved?’ I consider that to be sacred ground.”
Explaining further, Gentes continues: “I have come to appreciate, and find fulfilling, the small opportunities to bear witness to evolving hope. Working at an institution like Mayo Clinic is tremendous. We see the sickest of the sick. And there are many people who come to Rochester hoping and praying for a miracle. And when they get here, they might be told that there is nothing that we can do to treat their disease. And so those patients may begin to hope for a good time at home where symptoms are controlled, or they get to go on that last family vacation. And for some patients, that hope then transitions to simply being able to see a family member before they pass away. For some patients that transitions to a hope that they will live a very comfortable death. The ability for the human spirit to go through this process of evolving hope is a beautiful thing to witness.”
END OF LIFE
Bev Haynes, executive director of Seasons Hospice, says, “Working in hospice, death is never easy, but it is expected. We have the opportunity to work with patients and families to make it a positive experience. When people think about hospice, they think about death. But hospice is really about living and helping patients and families live with the terminal prognosis that they have. They have the opportunity to live to the last moment of their life.”
“As hard as it is to lose someone we love,” Haynes adds, “it is something we all will do one day. In our society it’s taboo to talk about death, and the result is we are unprepared, and people don’t have the opportunity to say what they need to say to their loved ones.”
Working in hospice, Bigelow says, “We help with symptom management. Not only physical, but we work with them on their psychological, spiritual and emotional well-being. We have a multidisciplinary team that works with our patients to ensure that their symptoms are being well managed during this final journey. It can be emotionally difficult to watch people go through this very difficult time; however, it’s also a privilege and honor for us to be allowed into their lives during this very intimate and sacred time.”
Bigelow believes hospice is becoming more accepted as a standard of care. She adds, “There is definitely a calling to work in hospice…this is the most fulfilling job I’ve ever had.”
Emily Bakken helps families navigate post-mortem affairs at Mayo Clinic. She says, “We help them (families) navigate all of the decisions that come following the death of a loved one…it seems to help them having someone there who is so comfortable with a subject that our culture views as so taboo. By far the most satisfying aspect of serving families is being able to physically see their worry and uncertainty melt away after speaking with me. Because death is so privatized in our society, almost no one knows what to do next.”
For these women working in various aspects of end of life, it’s all about honoring patient choices and bringing conversations about death into the mainstream.
Cindy Mennenga, owner of MedCity WordCraft, LLC is a freelance writer and editor based in Rochester.