It’s no secret that fear of death in America is increasing. The American approach to death, dying, and grieving has changed in the past 200 years—and dramatically so in just the past 50 years. The topic is rarely discussed at home. Most of us live longer but may not be present when a loved one dies. We have no idea what to expect or how to grieve.
As a rule, the dying are left to the specialists to handle in hospitals, nursing homes, and adult homes. These people often die alone, hooked up to tubes that they may or may not have wanted, without friends or loved ones there for comfort.
A new, local organization, Trillium Institute, backed by a major local donor and organized by a leading senior living community, is taking a different approach to the end-of-life journey by emphasizing honest communication between patient and physician.
A new, local organization, Trillium Institute
, backed by a major local donor and organized by a leading senior living community, is taking a different approach to the end-of-life journey by emphasizing honest communication between patient and physician. The folks at Trillium Institute believe that American culture “needs a new social contract to deal with advancing illness, weakness, and even death.”
The nonprofit organization addresses a growing need to not only help patients and their families navigate the complex end-of-life medical and emotional decisions when faced with a terminal illness, but also assist medical professionals who facilitate the process.
The mission is thoughtfully crafted, and even the name has meaning: “The trillium is an exquisite, three-leaved wildflower that is native to Michigan. It blooms for a brief season in the spring, reflecting both the beauty and the fragility of life. The three leaves also reflect our mission to help people live well, die well, and grieve well,” says Dr. John Mulder, medical director of Holland Home’s Faith Hospice
, and leader and medical director of Trillium Institute.
Issues in how end-of-life care is approached include a lack of willingness on the part of the patients who are anxious, confused, and frightened, and a medical profession that is not equipped to help them through the process.
“As a country, we spend enormous resources to extend life, but with little regard for the quality of life,” says Mulder.
Mulder is a nationally recognized authority on end-of-life issues and pain management and has become a sought-after speaker on the topics. A board-certified palliative medicine specialist, he has been involved in the field of hospice and palliative medicine since 1984.
Trillium Institute’s executive director, Ken Hekman, has over 40 years of healthcare leadership experience in health planning, nursing home administration, and medical group management. He is also is the author of six books on healthcare management and a regular speaker on leadership development training.
“The institute was challenged to find fresh ways to help those with life-defining illnesses as they navigate the complex medical options and equally complex emotional burdens that await them,” says Hekman. “We’re living longer, but are we living well? Chronic diseases and frailty pose challenges, but they don’t need to diminish the quality of life.”
The American medical care system is focused very heavily on fixing things. “When you go to the doctor, it is to fix something, and your physician is trained to fix things,” says Mulder. “The reality is that 90 percent of us are going to be told at some point in our lives that we have something that is not fixable.”
The question then becomes: “How do we want to prepare to deal with that reality?”
“Facing death is one of life’s most poignant and painful seasons, yet there is no escape,” says Mulder. “Human mortality is unavoidable, but it is possible to die well—to manage pain, conclude relationships, and transition with courage.”
This approach isn’t anything new: It was widespread in America in the 1800s but has long been forgotten, thrust aside by humankind's search for the fountain of youth as well as the rapid technology of medicine that focuses on prolonging life without consideration to its quality.
In his 1886 novella, The Death of Ivan Ilyich
, Leo Tolstoy wrote, “When children were born and parents died in the actual marriage bed, where first and last cries were heard in the very same room, where the first things looked at were often the last things seen, where the corpse is where the lover’s body moved, when the entire intimacy of life from start to finish was confined to the family house and not to the maternity wings, terminal wards and funeral parlors, death itself possessed dimensions and connotations that are now either forgotten or stifled. Everyone until recently knew the actual smell of death. In a big family during the nineteenth century, it was not unusual for it to be an annual smell and to take its position in the odorous year along with springtime beeswaxings, summer jams, and winter fires. When death came, it was the family who dealt with it, not the specialists. Death’s mysteries and its chores became inseparable.”
The public need for funeral homes is relatively new. Until the Civil War, death was largely a home matter and home funerals were the norm. Back in the 1800s, the parlor was the main room in the house. It was commonly used for displaying the dead body of a family member, whose body was prepared by family members. It was common at the time for unembalmed bodies to be put in simple caskets and buried in cemeteries that weren’t treated with pesticides. Historians say that our culture’s approach to death in the pre-Civil War years had much to be praised. Source
In 1910, Edward Bok, the editor of the Ladies’ Home Journal
, declared death to be unimportant for 20th-century America. Because of the swift advancement of science, death would soon be conquered, he believed. He therefore declared the word “parlor” was to fall into disuse and should be replaced by the word, “living room.” Source
. He couldn’t have been further from the truth.
“As a country, we spend enormous resources to extend life, but with little thought for the quality of life,” Mulder says. “Can we do a better job of aligning medical resources with personal values, preferences, and desires to achieve a balance between the quantity and quality of life? We think so.”
Trillium Institute is here to help the general public and medical community prepare for serious illness, navigate the health care delivery system, and improve communication between physician and patient. It is developing innovative approaches to palliative care and providing educational opportunities for both medical and patient communities. It partially focuses on emphasizing honesty between physicians and patients so individuals and their families can plan accordingly, says Mulder.
The nonprofit organization launched publicly in October and is currently seeking 501(c)(3) status. Trillium Institute is affiliated with Holland Home
and will be led by an executive director and medical director, and governed by an independent board of directors. Trillium Institute has been in development since January 2014 and is operating with funds from a three-year grant given by a local philanthropist personally touched by an experience with palliative and hospice care.
Trillium Institute has already partnered with Making Choices Michigan
, Grand Valley State University
, Calvin College
, and Aquinas College
to provide outreach events and programs.
In addition to educational events and outreach, Trillium Institute is also developing a clinical resource to deliver navigation services directly to patients and families. This service will provide “patient navigators” to guide patients and their families through the complex medical decisions and emotional challenges associated with life-defining illnesses. Navigators are professional nurses or social workers with specialized training in managing complex diseases.
A Patient Navigator Director is on the horizon.
Attend upcoming discussions:
OLLI at Aquinas College
January 22, 2015 @ 9:30 AM
for contact info.
Ferrysburg Christian Reformed Church
April 19, 2015
Dying Well Discussion
April 26, 2015
Grieving Well Discussion
to Trillium Institute.
For more resources, click here
Images by Adam Bird.