ADVANCED CARE PLANNING IN CYSTIC FIBROSIS Todd, Sarah
1 H,
Sonntag, Elizabeth
2 A,
Howe, Katie
3 L,
Buchanan, Marianne
3 L,
Jones, Brooke
3 W,
Goralski, Jennifer
2 L
Department of Internal Medicine1, Division of Pulmonary and Critical Care Medicine2, UNC Adult Cystic Fibrosis Center3, University of North Carolina
BACKGROUND
METHODS
RESULTS
RESULTS
Advanced care planning (ACP) is recommended for all patients with cystic fibrosis (CF). No clear guidelines exist and practice varies widely among institutions. Retrospective studies demonstrate that many patients with CF have not engaged in ACP discussions at all, while others wait until the final weeks of their life, when decisions are made during times of high stress.
• Meeting scheduled: one-hour long, billable ACP meeting with CF provider, LCSW, Dietician, Nurse Coordinator, and designated support people. • Note documenting wishes and outcomes of ACP meeting placed in the EMR. • Survey given after the meeting to assess patient attitude toward end of life care and ACP.
Twenty-two patients have enrolled in this study. Of those patients, twenty-one scheduled an ACP meeting. Thirteen of the enrolled patients are female and 9 are male. Fifteen had an FEV1 ≤40% at the time of their meeting, 3 were ≥40 years of age. Seventeen pre-surveys and thirteen postsurveys have been completed so far.
Only 29% of patients reported having an advanced directive prior to their ACP meeting. After the meeting 77% of patients stated they had completed or were in the process of completing advanced directives. In addition, the EMR note of this ACP meeting serves as important documentation of patient wishes. As a next step it is important that these advanced directives and ACP notes are easily accessible to any health care providers involved in the patients’ care.
100%
PURPOSE
CONCLUSIONS
80%
This study was designed to elicit the CF patients’ perceptions of end-of-life care and advanced care planning and to investigate how that perception changes in response to formalized ACP meetings.
60%
40%
20%
METHODS A multidisciplinary group at the University of North Carolina Adult CF Center completed a quality improvement project focusing on the implementation of outpatient ACP meetings as routine care for patients with CF. Patients’ responses were elicited via pre and post ACP meeting surveys. • Target demographic was patients with FEV1 < 40% but any CF Center patient was eligible. • Patients informed via quarterly newsletter or directly by the center’s Licensed Clinical Social Workers (LCSW). • Educational handbook was provided prior to the scheduled meeting. • Survey given via RedCap to assess attitudes toward end of life (EOL) care and ACP.
120%
Patient Survey Responses
0%
I believe that patients with I feel it is important to I feel comfortable talking I have discussed with my I have documented or am in I have a good understanding CF have unique needs when discuss my wishes about end about things like end of life loved ones my wishes at end the process of documenting of whether or not I would be it comes to advanced care of life while I am healthy. care, code status, hospice, of life. my wishes using an a candidate for lung planning. advanced directive or other etc. transplantation. form. Pre-Meeting
Post-Meeting
Figure 3. Patient responses pre (blue) and post (red) ACP meeting. Figure 1. Survey Questions.
RESULTS Number of participants
22
Age < 40
18
Age > 40
4
FEV1 < 40%
15
FEV1 > 40%
7
Range of exacerbations in the past 1 year
1-18
Mean/Median/Mode of exacerbations Figure 2. Patient Demographics.
6.6/5.5/4
On initial assessment over 90% of patients felt that patients with cystic fibrosis have unique needs when it comes to ACP. Prior to their meeting 88% of patients wanted the opportunity to talk more about their wishes at end of life with their loved ones, but only 18% had engaged in these discussions. Additionally, 65% of patients wanted their doctor to talk with them about end of life care. Only 56% of patients felt comfortable discussing end of life care prior to the meeting with an increase to 69% in post-meeting surveys.
In a multidisciplinary care model at a large academic CF Center, we successfully implemented sustainable ACP for CF patients and continue to evaluate the effect of the program. Qualitative feedback from patients has been positive. Quantitative analysis shows an increase in patient comfort with and documentation of end-of-life goals after ACP meetings. It is important for healthcare providers to meet the needs of this special patient population by ensuring that ACP is in place for patients prior to crisis situations.
REFERENCES • Dellon EP, et al. Advanced care planning in cystic fibrosis: Current practices, challenges, and opportunities. J Cyst Fibros, 2016;15:96-101. • Chen E., et al. End-of-life practice patterns at U.S. adult cystic fibrosis care centers: A national retrospective chart review. J Cyst Fibros, 2017. • Smyth AR, et al. European Cystic Fibrosis Society Standards of Care: Best Practice guidelines. 2014;13 Suppl 1:S23-42. • 2016 Patient Registry Annual Data Report. Cystic Fibrosis Foundation. • United States Cystic Fibrosis Patient Registry – PortCF
CONTACTS Sarah Todd: Sarah.Todd@unchealth.unc.edu Elizabeth Sonntag: Elizabeth.Sonntag@unchealth.unc.edu