A new organization is taking a different approach to the end-of-life journey by emphasizing honest communication between patient and physician and serving as a resource for those navigating complex medical and emotional decisions.
Trillium Institute is intended 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.
Trillium officially launched in October at 2100 Raybrook SE, Suite 300, Grand Rapids, in the Holland Home corporate office. It is affiliated with Holland Home, a provider of senior services and a registered continuing care retirement community, and currently operates under its nonprofit 501(c)(3) status.
The organization is led by Dr. John Mulder, medical director, and Ken Hekman, executive director, who became acquainted more than 20 years ago when Hekman provided consultant work for Mulder’s medical practice.
“When the opportunity presented itself to take formation, (Mulder) asked me to get involved and help create a plan and, as I did the research, I felt a tug,” said Hekman. “There are deep reasons to do this work. This is the most important work of my career.”
Governed by an independent board of directors, Trillium Institute operates with a three-year grant donated by a local philanthropic family, and leverages the technical, financial and administrative infrastructure Holland Home is able to provide.
The initial development of the organization began back in January with little more than an idea and some seed funding, according to Hekman.
“We have been using this whole year to figure out what is the best way to leverage that seed resource and the best way to make a difference in the community — make a difference in the lives both in the medical community as physicians but also in the lives of patients and their families,” said Hekman.
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.
As a palliative care physician and medical director of Holland Home’s Faith Hospice, Mulder said the 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.
“We have a medical care system that 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,” said Mulder. “The reality is, 90 percent of us are going to be told at some point in our lives we have something that is not fixable. The question is, how do we want to prepare to deal with that reality?”
The conversation about improving quality of care and balancing the quantity and quality of life is one of the reasons Hekman became involved with Trillium.
“It comes at a time when the health care environment, the health care world, is going through a great transformation, and we have to find ways to provide better quality care at lower cost,” said Hekman. “I was also drawn to it because I have experienced profound grief in my own life and I have let grief be my teacher. It has given me a better understanding about how life and death fit together. They make each brighter than they would be without that tension.”
Part of the focus of the organization is emphasizing honesty between physicians and patients so individuals and their families can plan accordingly, according to Mulder.
“We are not giving our patients the opportunity to live their lives differently knowing their lives are limited, that this disease process is going to limit their life expectancy,” said Mulder. “Doctors tend to overestimate life expectancy; part of that is their own denial and own unwillingness to admit their patients are going to die.”
Trillium Institute offers a two-day intensive training experience for physicians in primary palliative care, provides guest lectures in health care related programs, and supports fellowship training.
It also provides services for the general public, such as public forums to raise awareness related to serious illness, lifelong learning to engage senior audiences through partnerships with universities and colleges, speaking engagements, patient navigators who guide patients and their families through the process, and advance-care planning assistance.
Organizations Trillium Institute already has partnered with to provide outreach events and programs include Making Choices Michigan, Grand Valley State University, Calvin College and Aquinas College.
“We have aligned ourselves with Making Choices Michigan. They are really the experts in advance care planning, and we recognize the value of that,” said Hekman. “Rather than replicate services, we are just teaming up with them to refer individuals to them.”
Trillium recently held a community forum in partnership with Making Choices Michigan, GVSU and Spectrum Health for physicians, local and state legislators, business leaders and members of the health care and public community on improving end-of-life care in America.
“The purpose is to raise the level of awareness about this report in particular and the topic in general. It is also to help people — help physicians and families — gain some comfort in talking about important life-shaping decisions in the face of serious illness,” said Hekman.
“We are hopeful that we are in the right place at the right time to raise the level of conversation in West Michigan. We are joining a larger conversation that is already in place and raising its decibels up a few notches.”
The emphasis on physician and health care representative participation is based on the need for the medical community to hear the conversation, as well, according to Mulder.
“They need to know that it is OK. It does not mean you failed your patient if they have a terminal process. It does not mean you give up or abandon them simply because you don’t have anything to fix the underlying illness,” said Mulder. “There are paradigms of care and approaches to treatment that are extraordinarily valuable, compassionate and meaningful — and exactly what the patients need.”