Turnbull – family engagement research 5-31-18

A Right Thing Measured Poorly: An Epidemiologist’s View of Patient-Family Engagement in the ICU

Alison E. Turnbull, DVM, MPH, PhD

*Summary written by Avnee Kumar, MD

Clinical Pearls

Patient and Family Engagement in the ICU – how do know if it works?

• Imperfect Indicators [1]
  • ICU use in the last month of life
  • Death in acute care hospitals
  • Hospice use at time of death
  • Health care transitions in the last 90d of life for decedent
  • Health care transitions in the last 3 days of life
• If an intervention successfully fosters patient-family engagement in the ICU then we’ll observe increased incidence of goal-concordant care [2]
• Goal-concordant care can be hard to measure reliably [3]
• Three potential “implementation ready measures” of goal concordant care [4]
  • The timing and setting of serious illness communication
  • Patient experience of communication and care
  • Caregiver bereavement surveys that include assessment of perceived goal concordance of care
• Three major studies attempted to evaluate an intervention where the primary outcome was mental health symptoms in family members 3-6 month after the intervention [5-7]
  • With a small exception, there was no change
  • This is unsurprising as the family member is probably not thinking about an intervention 3-6 months ago, they are thinking about what they are dealing with right then and there
• In order to measure goal-concordant care, it needs to be defined. What is goal-concordant care?
  • Discussing preference-sensitive interventions [8]
  • Clarifying the patient’s goals and limits
  • If the patient’s goal is achievable AND the intervention/treatment help them achieve it, this is goal concordant care
• 
  In order to obtain goal-concordant care, need to know what treatments to review, if families can identify goals/limitations, and if clinicians agree a goal is achievable
  • Treatments should be reviewed if:  
    • Potentially incompatible with patient treatment goals
    • Potential to cause physical, emotional, or financial harm
    • Can usually be anticipated on a non-emergent basis [9]
  • Can families identify goals and limitations?
    • Patients were given a guide on being a proxy (www.piperscience.org/proxy-activation) **please do not leave around, can cause distress to families and patients**
    • ~75% can with guidance [10]
  • Can clinicians agree?
    • Three fellows were asked to review patient charts
    • Fellows best case scenario agreed 85% of the time
    • Although clinicians didn’t agree in this study, it is limited especially by simulated scenarios and no discussion among fellows [11]
• Things to do right now
  • Start conversations early
  • Help patients and proxies formulate achievable goals
  • Ask about limits
  • When a preference sensitive treatment is raised, ask yourself: do we need to recheck the patient’s goals and limits first

References

1. Teno JM, Gozalo PL, Bynum JPW, et al. Change in End-of-Life Care for Medicare Beneficiaries: Site of Death, Place of Care, and Health Care Transitions in 2000, 2005, and 2009. JAMA. 2013;309(5):470–477. 
2. Turbull AE, Hartog CS. Goal-concordant care in the ICU: a conceptual framework for future research. Intensive Care Med. 2017; 43(12):1847–1849.
3. Sudore RL, Heyland DK, Lum HD, et al . Outcomes that define successful advance care planning: a delphi panel consensus. J Pain Symptom Manage. 2018;55:245–55.
4. Sanders JJ, Curtis JR, Tulsky JA. Achieving Goal-Concordant Care: A Conceptual Model and Approach to Measuring Serious Illness Communication and Its Impact. J Palliat Med. 2018;21(S2):S17-S27.
5. Curtis JR, Treece PD, Nielsen EL, et al. Randomized Trial of Communication Facilitators to Reduce Family Distress and Intensity of End-of-Life Care. Am J Respir Crit Care Med. 2016;193(2):154-62.
6. Carson SS, Cox CE, Wallenstein S, et al. Effect of Palliative Care-Led Meetings for Families of Patients With Chronic Critical Illness: A Randomized Clinical Trial. JAMA. 2016;316(1):51-62.
7. Martin S, Angus DC, Darby JM, et al. A Randomized Trial of a Family-Support Intervention in Intensive Care Units. New England Journal of Medicine. 2018;378(25):2365–2375. 
8. Kon AA, Davidson JE, Morrison W, et al. Shared Decision Making in ICUs: An American College of Critical Care Medicine and American Thoracic Society Policy Statement. Crit Care Med. 2016;44(1):188-201.
9. Turnbull AE, Sahetya SK, Needham DM. Aligning critical care interventions with patient goals: A modified Delphi study. Heart and Lung. Heart Lung J Crit Care. 2016;45:517–524.
10. Turnbull AE, Chessare CM, Coffin RK, et al. A brief intervention for preparing ICU families to be proxies: A phase I study. PLOS ONE. 2017;12(10):e0185483.
11. Turnbull AE, Sahetya SK, Colantuoni E, et al. Inter‐rater agreement of intensivists evaluating the goal‐concordance of preference‐sensitive ICU interventions. J Pain Symptom Manage. 2018;56(3):406-413.e3.