In the September issue of H&HN, writer Mark Taylor offers a provocative view at how better advanced illness management, palliative care and end-of-life care can boost quality and reduce health care costs. This Web Extra highlights how one health system has embedded advanced illness management throughout the organization.
Heather and Greg Heath knew from birth that their son James would face lifelong health care challenges. He was diagnosed with static ischemic hypoxic encephalopathy, a condition in which the brain is deprived of oxygen, causing developmental disabilities. Jamie Heath has cerebral palsy, recurrent pneumonia and requires a tracheal tube.
Doctors didn't believe Jamie would survive his first day. "Then it was his first weekend, six months and year," his father says. "He's 9 now. He could go tomorrow or in five years."
The Heaths, both 31, live in Holmen, Wis., a suburb of LaCrosse, with their three children. In April, they had what leaders at Gundersen Lutheran Medical Center call "The Conversation." The Conversation is a nonthreatening discussion in which a facilitator sits down to talk with a patient, family members and health care providers about advance care planning and directives, so they are assured that their wishes will be followed and that they will receive the care they choose. In this case, nurse ethicist Linda Briggs, associate director of Gundersen's Respecting Choices advance care planning program, talked with the Heaths for more than two and a half hours about Jamie's future and the care decisions they want to make.
She guides similar discussions several times each day. "It happens at different levels. People have different needs," she says. "Some conversations are more complex than others."
Advance care planning discussions happen daily in Gunderson's clinics and hospitals. "They are built into our routines of care and offered as services for our patients," Briggs says. "It's best to have these conversations when there's not a crisis, when emotions and stress don't complicate things."
Briggs says the program works well because of its comprehensive approach. "It was conceptualized as a staged-process approach, not a one-size-fits-all, one-time document signing. There is different advance care planning for different stages of illness," she explains.
First Steps is for healthy adults who've never planned their health care before. Next Steps is aimed at individuals with chronic illnesses who are beginning to suffer complications. Patients transition into Last Steps when their doctors expect death could come within a year.
"Throughout the process, we help them to understand their options, so they can make informed decisions outside of a medical crisis," Briggs says. "Their decisions are converted into a series of medical orders that can be followed. Then we develop more specific strategies to address the planning needs of more complex conditions."
The Respecting Choice conversations are led by trained team members. Doctors, nurses, case managers and local religious leaders often refer patients and their families to the program. "We're not only completing documents, but also having discussions and answering questions. Patients are invited to participate, but it's not required," Briggs says.
Jeffrey Thompson, M.D., president and CEO of Gundersen Health System, says its advance care planning model has trained health care professionals in many U.S. hospitals and in 90 countries. Australia and Singapore have adopted it as a national plan. "CMS would save billions of dollars if Medicare would spend a little more money on having these conversations with seniors to help them figure out how they want to live the rest of their lives," Thompson says. "It's not about dying, but living."
The Heaths, who operate an auto detailing business, say they left the conversation with a sense of relief. "This is not a topic you want to approach," Greg Heath says. "Linda asked very general questions about our faith, beliefs and background and clarified Jamie's diagnosis."
Heather Heath says Briggs "made us feel comfortable to discuss these hard topics on a more personal level without complicated medical language." For the first time in Jamie's life, the couple made a long-term care plan for their son.
The conversation "prepares you so you don't have to think about it when an emergency arises," Greg Heath says. "You know there is a plan in place and you made these decisions while you were clear-headed."
The Heaths say they appreciate that the Respecting Choices program is a process that can be revisited as Jamie's condition changes. "This isn't going to be the only meeting we have to discuss this," Greg Heath says. "Nothing is cast in concrete. It's part of a journey."
Adds his wife, "If we hadn't had this conversation, not only would it be tougher on Greg and me, but we might not have been able to teach our children and other family members our wishes for Jamie and our reasons why."