By Lori Kaufmann and Danielle Rathke
The first time the chaplain met with Maggie, she thought the patient was much too young to be in dialysis. After beginning a conversation, she asked if Maggie was new to dialysis. She said yes and no. She was new to this center and had been dealing with kidney issues for a long time. She had been on and off dialysis many times and had kidney transplants that eventually failed. But she was seriously considering stopping dialysis and being done with all of the disappointments, pokes, prods, and pain. She talked about her husband and family, her insights into herself, and her ambivalence about life on dialysis.
Listening to Maggie and feeling her struggle, the chaplain invited her to consider palliative care, a plan to manage her symptoms while listening to her heart. This plan would be informed by the knowledge of her disease and the possibilities and limitations of treatment. It would match her goals, values, beliefs, hopes, and desires — for this is what it means to do advance care planning.
At Gundersen Health System in La Crosse, WI, advance care planning is more than just checking boxes on a form. These conversations are documented for future reference and stored in the patient’s medical record. The literature is filled with information that says the most important part of creating an advance directive is the conversation. Unfortunately, in our busy and pragmatic world, we often end up being document-focused rather than conversation-focused. But Gundersen’s staged approach for advance care planning facilitates person-centered discussions that assist people in identifying and communicating their choices about their health at key times in their life. Advance care planning is an integral part of palliative care and other clinics that manage chronic disease.
Gundersen’s advance care planning program began in the early ’90s as a community collaboration. The seed was planted when Dr. Bud Hammes, now the director of the Respecting Choices program at Gundersen, was working with three families whose loved ones experienced devastating strokes. The families were left with the uncertainty of how to make healthcare decisions. The end result is the remarkable Respecting Choices model being replicated across the nation and around the world. A 2007-2008 study of 400 patients who died in La Crosse County found that 90% had created an advance directive, 99.4% of the time the AD was located in their medical record, and 99.5% of the time the treatment decisions were consistent with the instructions in the AD.
Often, patients who come to palliative care have done First Steps advance care planning. For some patients, however, this is where we start. This is basic planning for healthy adults or for adults with chronic disease who have not planned. Facilitators guide patients through their goals, values, beliefs, and preferences for future healthcare. The goals include motivating individuals to plan and choosing a qualified healthcare agent, who, ideally, participates in this conversation. The healthcare agent is the person legally appointed to make healthcare decisions. An important part of our facilitation service is helping patients choose healthcare agents who will be good at the role.
Patients with a chronic illness may find that their symptoms are becoming more complex and difficult to manage. As they work with palliative care, patients are invited to engage in Next Steps advance care planning, intended for individuals with chronic illness that is progressing. A patient, along with their agent and, if desired, other family members, meets with a specially trained facilitator to revisit their understanding of their illness and its potential complications, and to reflect upon treatment options to create a plan of care, including goals in “bad outcome” situations specific to their chronic illness. The Next Steps conversation promotes open communication between the individual and the healthcare agent and allows for exploring layers of hope. The individual’s preferences for these situations are captured on a tool called a Statement of Treatment Preferences. This is an important step in the palliative care process because it helps the patient, agent, and other family members to deepen their understanding of the patient’s goals, hopes, fears, and values as the disease progresses.
The Last Steps advance care planning conversation is regularly offered in palliative care and hospice. This is for individuals with serious, life-limiting illness, terminal illness, or advanced frailty. The conversation is done by a physician, nurse practitioner, or a specially trained facilitator who guides the patient and/or healthcare agent through a discussion focused on goals, values, and beliefs specific to their current medical condition. Patients’ understanding of their illness and its potential complications are explored. Individuals are assisted in making informed treatment decisions based on their goals and values that can be converted into medical orders. These orders allow for preferences to be followed not only in the hospital setting, but also in the community setting.
As one can imagine, there is an infrastructure supporting this process — not only in palliative care, but systemwide. A storage and retrieval system allows access to documentation of advance care planning conversations, as well as any formal documents. A cadre of physicians, facilitators, and healthcare staff has been trained in these important conversations. And from administration and beyond, a supportive healthcare environment that values the necessary deep listening has been fostered. At each step in the process, it is our desire to develop a helping relationship with the patient that facilitates learning, reflection, discussion, and decision making.
After visiting with Maggie, the chaplain charted and routed the note to her care provider. Maggie’s nephrologist referred her to palliative care. Maggie met with the nurse practitioner in palliative care, who listened to her story. They created a plan to manage Maggie’s symptoms so she could feel well enough to thoughtfully engage the important decisions about her life and her death. Maggie is moving through the stages of advance care planning — a process of communication centered on knowing and honoring her healthcare preferences.
Lori Kaufmann, BCC, is a chaplain at Gundersen Health System in La Crosse, WI. Danielle Rathke DNP, RN, is advance care planning coordinator for Gundersen Health System.