UNMC Team Decreases Need for Crisis Lung Transplant Evaluations

Thirty-two patients at the adult cystic fibrosis center at the University of Nebraska Medical Center (UNMC) were referred for lung transplant evaluations over six years. Of those evaluations, seven were brought on by health crises, such as massive hemoptysis, severe pulmonary exacerbations, and in one case, a drug overdose. Four of those seven died before being listed for transplant. Factors that delayed evaluations included patient indecision and modifiable barriers, such as substance misuse, insurance issues, and lack of social support. The UNMC team decided to adopt advance care planning (ACP) to better prepare patients for transplant evaluation after learning about it from the University of Minnesota during the Cystic Fibrosis Foundation Lung Transplant Transition Learning and Leadership Collaborative (LLC).

Approach

Working with the University of Minnesota, UNMC developed an ACP approach that included:

• All patients with lung function less than 50 percent predicted (consistent with lung transplant referral guidelines) would be invited to an hour-long ACP meeting
• ACP sessions would take place during meetings independent of regular CF care center visits
• Patients would be required to bring family or other support person to ACP meetings

To promote shared decision-making, all patients received an agenda prior to the meeting and were asked to consider what issues were most important for them to discuss.

At each ACP session, patients met with members of the multi-disciplinary care team (physician, nurse, social worker, respiratory therapist, nutritionist, and psychologist) to discuss the major points of transplantation, including:

• Evaluation
• Outcomes
• Finances

The team also outlined what patients could expect in terms of their physical health as their CF progressed (i.e., more shortness of breath, needing supplemental oxygen, possibly going on disability, needing more support from family and friends).

Because lung transplant can be emotionally fraught, the team faced several barriers to implementing ACP, including:

• Patients who were not ready to discuss lung transplant
• Conflicting anxieties, including provider trauma resulting from poor outcomes with past patients
• Patients arriving without a support person and facing an intimidating situation alone

Outcomes

Since implementing ACP, the UNMC team has noticed:

• Decrease in instances of crisis evaluations
• Decrease in time lapse between transplant discussion and referral
• Earlier referrals when lung function is more stable

Equally important, pre- and post-ACP surveys revealed that patients' knowledge of transplant and palliative care has increased while anxiety about the process has decreased.

Lessons Learned and Next Steps

Insights the team gathered when implementing ACP include:

• Talking about transplant doesn't mean a transplant is imminent
• Transplant is a complex process that takes time to learn

John Dickinson, MD, PhD, associate program director at UNMC, shares that it is important to acknowledge emotions at the outset.

“I underestimated the emotional impact and conflicting anxieties of the patients and their support as well as the providers.”

The UNMC team also intends to integrate the communications methods they learned in the Partnership Enhancement Program to “get away from the monologue.”

No matter where their journey leads, Sorenson adds that the UNMC team makes it clear to patients during ACP discussions that, “we're going to support and advocate for them in whatever their needs and wishes might be.”