After her debilitating stroke, doctors wanted to give 80-year-old Dorothea Rumney a feeding tube. Her three children and husband waited to make their decision until they could all be together at the hospital. They gathered around their mother, who had been left speechless from the stroke.
“Emotions were high. You could just feel it,” daughter-in-law Linda Rumney said about that day four years ago. “The children were agonizing over this decision. It was horrible to watch.”
As a social worker with Larimer County Department of Human Services, Linda Rumney began to relay professional advice to her own family.
Then, Dorothea’s husband remembered the paperwork that he had grabbed from Dorothea’s home — what he believed to be documents that granted him power of attorney, but they found something else among the forms — a living will.
“The whole conversation changed — they had the framework for their discussion and could move forward,” Rumney said.
It was Dorothea’s last gift to her family.
“The will was specific: If she could no longer eat on her own, she didn’t want a feeding tube for life-sustaining purposes,” Rumney said. “She had given us this gift and made her wishes clear.”
But so many times, such a gift is not left for the family, said UCHealth’s Emergency Department Director Dr. Jamie Teumer.
“You must plan ahead,” he said. “Because more times than not, there is not time for those discussions. And if you don’t want to do it for yourself, do it for your loved ones. It’s tormenting for family members to have to make those decisions.”
The UCHealth Aspen Club, in partnership with Sharing the Care Campaign of Northern Colorado, continues to highlight the importance of advance care planning. Advance directives, which actually provide more details than a living will, are legal documents allowing patients’ doctors and loved ones to honor their wishes regarding medical treatment. The documents only take effect when the patients are unable to make their own health care decisions.
Systems of Care Initiative, along with Larimer County Health District and Lutheran Family Services, were each awarded a Colorado Health Foundation grant to further their efforts to get individuals to complete their advance care plans.
So where do you start?
Combined, the community organizations provide an array of free services for individuals, families and providers so everyone can benefit from the peace of mind that follows advance care planning.
UCHealth’s Aspen Club in Fort Collins, Greeley and Loveland has adopted The Conversation Project principles and uses its model to help residents have important discussions about end-of-life care with their loved ones. This is a key part of the process because while more than 90 percent of people think it’s important to talk about end-of-life care, fewer than 30 percent actually do, according to the Institute for Healthcare Improvement.
Workshops utilizing The Conversation Project are available through the Aspen Club, which serves the 50 and older population, and the club also provides one-on-one help with completing advance directives.
In SOCI’s program, certified coaches provide one-on-one assistance and step-by-step instructions in the comfort of a home or the convenience of the workplace, said Dr. Jan Gillespie, board president of SOCI.
Similarly, the Health District of Larimer County provides advance care planning for persons 18 or older in person or via online resources. People can set up an appointment with the advance care planning team, which will assist with paperwork, help put a plan in writing, and provide an understanding of life-sustaining treatment options.
The Health District also provides complimentary training and educational seminars to health care providers so they can grow their team’s knowledge of advance care planning and promote it within their clinics. Providers also can contact the district to schedule one-on-one meetings for their patients with advance care planning experts.
Lutheran Family Services is providing no-cost presentations to local church and community groups interested in learning more about advance care planning, as well as help to individuals. It too is offering training to professionals, who could then use that knowledge to guide others through the planning process.
The paperwork is done, now what?
It is very important that people review their wishes — and the fact that they have advance directives — with their loved ones so there is no confusion in the final days, Rumney said.
“It’s really important that the family has that conversation together and before there is a crisis,” she added. “It would have been nice to know what we had before we were in crisis mode.”
Both Rumney and Teumer recommend that people not only have the conversation with their family, but also with their primary care doctor or other medical professional.
“Make sure the whole family is on the same page, but get some medical input, too, so everyone has an understanding of the medical side of their directives,” Teumer said. “Get your information into your medical records — health care social workers, case managers or your primary care doctor can help you do this. Someone in the medical records department at the hospital also can help. And keep your directive in an obvious place in your home so your family members or emergency responders can find it.”
Both also recommend using a facilitator when creating the advance care directives, and encourage people to reach out to The Aspen Club, the Health District, Lutheran Family Services or SOCI to get assistance with the paperwork and/or to facilitate conversations among families.
“The more organized you are with this, the better off you and your family will be,” Teumer said.
Get started on advance care planning today: The Aspen Club: 970.495.8560; Health District: 970.482.1909; Lutheran Family Services: 303.217.5864 or 970.232.1180; SOCI: 970.449.6840