1. Using Mixed Methods to Evaluate Patient and Family Perceptions of an End of Life Program Sarah Cote, MA, Patricia Housen, PhD, Yanyang Liuqu, MA, Nelson E. Dalla Tor, MD, Virag Shah, MD

2. Definition of Palliative Care Palliative care is specialized medical care for people with serious illnesses. It is focused on providing patients with relief from the symptoms, pain, and stress of a serious Illness whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Source: http://www.getpalliativecare.org/

3. Partners in Care Foundation Partners in Care Foundation is located in San Fernando, California. Partners in Care believes that today's health care and social services need to change and improve in fundamental ways so that they work better for all of us. Partners’ Institute for Change conducts research, evaluation and consultation with community organizations and others.

4. Presbyterian Intercommunity Hospital PIH is a hospital located in Whittier, California. The mission of PIH is to provide high quality healthcare without discrimination, and contribute to the health and well-being of our communities in an ethical, safe, and fiscally prudent manner in recognition of our charitable purpose.

5. PIH’s In-Home Palliative Care Program The program is designed to: – Improve services – Enhance patients’ quality of life – Reduce cost of care Program provides: – Interdisciplinary care team – Home visits – 24/7 access to a nurse via telephone

6. UniHealth Foundation Grant Objectives of the grant – Daily census of 30 patients – Improved pain and symptom management – Assuring patients’ wishes for care are documented – Improving patient and family satisfaction with care – Improving patients’ ability to manage their condition in the home Partners’ was contracted to be the evaluators for this grant.

7. Evaluation Process Approval by Partners’ Institutional Review Board Screening Criteria – Living in the community – Seriously ill, live expectancy of 1-2 years – Chronic conditions – >= 2 hospitalizations in the last year – 70% < on Palliative Performance Scale Recruited by PIH’s Palliative Care Team

8. Evaluation Process Data Sources – Record of services provided during home visits – Consult Service Records – Baseline and one month follow-up telephone interviews – Qualitative interviews with 10% of patients or caregivers

9. Results Active patients >= 30 each month Significant increase in patients with advance directives 50% decline in patients reporting pain and nausea High satisfaction at both baseline and follow-up (phone survey) Satisfaction with care and information (interviews)

10. Interview Participant Demographics QuestionResponses#% 1. GenderMale214% Female1286% 2. AgeMean62 Range42-91 3. Ethnic BackgroundCaucasian/White750% Latino643% Other17% 4. Marital StatusSingle536% Married643% Widowed321% 5. Highest Grade CompletedHigh School750% Technical/Trade School17% Some College321% Bachelor's Degree321%

11. Qualitative Interview Results Themes addressing the following areas – Information gained from working with the PCT – Impact on patient care – Effect on patient/family – Characteristics of PCT

12. Information Participants perceived information about the patient’s illness or trajectory. Patients/family members also acquired information about how to improve caregiving in the home. “…[W]hen they left I felt a little better about his condition, whereas I have always thought he was getting progressively worse and, you know, in a fast way, and it’s not so, apparently.” “My daughters got shown at the hospital how to handle my wound… but when the nurses came [to the home], they showed them a whole, different way plus a, a little bit easier, you know, and extra things to do.”

13. Impact on Patient Care Perceived time spent with the PCT impacted patient care. Increased access to care. Staff “…maintain him and make sure that his prescriptions are taken care of, and they get refills, and the doctor comes out and visits with him every 2-3 months.” “[W]hen I do have questions, all I have to do is call, and if I can’t talk to anybody right then and there they do get back to me immediately.”

14. Effect on Patients/Family A perception of support and a feeling of reassurance Perceived sympathy Improved self-efficacy and positivity “I mean they were there 110% for us.” “I was a lot more comfortable and positive about taking care of my Mom. I was reassured that I am doing the right thing, that’s the main thing they did.” “…He didn’t want to be a doctor that would just tell me, like “Oh well, uh, oh yes this and that” and then walk away and then forget about me until you know… I’m willing to, in other words, put myself in his hands or whatever, then you know he wants to help me get better..” “[Y]ou can’t have someone by your side doing stuff for you. You have to… learn how to get the most out of your time. You need to know exercise, you need to know breathing techniques, you know, instead of using an inhaler.”

15. Thoughts about the PCT Team – “I thought that they had they asked the right questions and spent the right amount of time.” Another felt that the team was effective and “(t)hey were really on top of everything.” – “[T]he visiting nurse doesn’t seem to feel that she needs to contact palliative care regarding anything… she calls the primary… I think there can be a better coordination there.”

16. Evaluation, All About Evidence Collaboratively work with stakeholders – Redesigned evaluation – Mixed method design – Communication with stakeholders Real World Evaluation – Budget – Data constraints

17. Valuing Evaluators’ Values Contact: scote@picf.org