Responding to Patient Needs: the Health Care Professional Perspective

1. Responding to Patient Needs: the Health Care Professional Perspective Sue MacRae, RNDeputy DirectorJoint Centre for Bioethics(416) 978-1395sue.macrae@utoronto.ca

2. Osler 1902 • “In what may be called the natural method of teaching, the student begins with the patient, continues with the patient, and ends his study with the patient, using books and lectures as tools, as means to an end…..For the junior student in medicine and surgery it is a safe rule to have no teaching without a patient for a text, and the best teaching is that taught by the patient himself.”

3. A Senior Physician 2001 • “At no time in my job does anyone reward me for being a “good” doctor, you know really being there for people…….In fact most of what is expected of me, pulls me far away from patients-- and then I am left in the middle of the night with my own conscience to decide what to do with that. In the end everyone loses.”

4. My Message • Approaches that look at how patients themselves define quality may offer an important contribution to our efforts at improving care.

5. Questions • What do patients say they need? • Are health care professionals (HCPs) meeting patient needs? • Why do HCPs continue to be challenged by meeting patient needs? • How can HCPs better address patient needs? • What do patient-centred models look like?

6. What Do Patients Say They Need? • “Through the Patient’s Eyes”: The former Picker Institute, Boston

7. Summary of What Patients Say They Need • Access to care • Respect for patients’ values and preferences • Coordination of care • Information and education • Physical comfort • Emotional support • Involvement of family and friends • Continuity and transition Based on the work of The Picker Institute and Harvard University

8. Are we meeting patient needs … in hospitals in Ontario? • 20% of patients identified a concern with the physician’s explanation of diagnosis and treatment. • 29% of patients identified a concern with being adequately involved in decisions affecting their care. • 63% of patients said they experienced more than a little pain during their hospital stay.

9. Why do HCPs continue to be challenged in meeting patient needs?

10. Why? • HCPs and patients may disagree about what aspects of care are most important • HCPs and patients judge quality of life differently • HCPs and patients encounter barriers to communication • HCPs and patients view healthcare through different lenses

11. HCPs and patients disagree about underlying assumptions of quality of life ... • “Glad to be alive” • Emergency medical providers 18% • Person with chronic quadriplegia 92% • “QOL average to above average • Emergency medical providers 17% • Persons with chronic quadriplegia 86% Gerhart, KA, et al. Annals of Emergency Medicine 23:4 April 1994

12. Doctors inaccurately predict what their patients would want • Primary care physicians tend to underestimate the global QOL of their elderly patients with chronic conditions. (Ulhmann and Pearlman, 1991) • Physicians tend to overestimate the willingness of laryngectomy patients to die rather than lose their voice. (Otto, et al 1997)

13. Barriers to Effective Communication: Patient and Family • Misunderstanding of illness, treatment and prognosis • Biases over the role of the medical profession • Lack support, lack of coping mechanisms crisis • Physical and emotional depletion • Differences in values, beliefs and culture Adapted from the Ian Anderson Program on End of Life Care (www.cme.utoronto.ca/endoflife)

14. Barriers to Effective Communication: Health Care Professionals • Depth of physician-patient relationship • Personal experiences with illness • Physical, emotional and psychological depletion • Lack of training and poor role models • Unrealistic expectations of the success of certain treatments • Inconsistent approach to issues Adapted from the Ian Anderson Program on End of Life Care (www.cme.utoronto.ca/endoflife)

15. View of a patient from the HCP perspective Decision to Seek Care Information Collection Diagnosis Treatment Rehabilitation Follow-up • 2 slides adapted from work by Dave Gustafson, Ph.D. • University of Wisconsin-Madison.

16. View of a patient from the patient’s perspective Future Self Image Symptoms Providers Feelings Treatment Process Family & Friends Built Environment

17. How can HCPs better address patient needs?

18. Patient-centred care is ... • How do patients define quality? • What helps and hinders their ability to manage an ongoing problem? • What aspects of care are most important to them and what do they need?

19. Patient-centred care is not ... • patients “run the show” • “them against us” • endless list of unmet needs

20. Patient-centred care: Back to Basics • Build systems around human values, needs and preferences. Remember individuals. • Care for the caregiver. • Leadership must make it easy to do the “right” thing. • Look in the mirror and remember personal experiences. • Eliminate waste. Coordinate. Ask why 5x • Benchmark good practices.

21. Patient-centred “good practices” • Develop clinical interview protocols that elicit patients’ perceptions about their illness and expectations of treatment. • Have the clinical team identify one person to serve as the primary conduit of information to patient and family. • Supplement patient visits with telephone advice, group appointments, or electronic follow-up. • Provide patients with credible internet sites.

22. Patient-centred “good practices” (2) • Share clinical pathways with patients. Coordinate across departments. • Supplement patient visits with telephone advice, group appointments, or electronic follow-up • Provide patients with credible internet sites • Family comment cards at bedside

23. What do patient centred models look like?

24. Patient-centred care applied • In past 30 years, models of Bioethics have focused on ethical dilemmas from the perspective of health care professionals • How we frame issues may contribute to conflict and problems • Directly identifying and addressing patient needs may reduce ethical conflict and moral distress

25. HCP prepare for incapacity autonomy written form patient-doctor relationship PATIENTS prepare for death personal relationships social process person-loved one relationship Advance Care Planning Singer et al, Arch Intern Med, 1998

26. Advance Care Planning: New Model • Confronting death • Achieving a sense of control • Relieving burdens on and strengthening relationships with loved ones

27. PATIENT Human experience patient (rotting body) family (facing death) doctor (conflict) Decision making: communication of uncertainty Contextual factors: palliative care, resources allocation HCP Quantitative: “when physicians conclude… that in the last 100 cases a medical treatment has been useless.” Qualitative: “merely preserves permanent unconsciousness or fails to end total dependence on intensive medical care.” Futility S Workman, MSc thesis, U of T

28. Communication & Clarification: New Model • Human experience of dying (patient, family and staff) • Communicating uncertainty • Palliative care • Priority setting

29. HCP overall quality of life physical well-being and function psychosocial well-being and function spiritual well-being patient perception of care family well-being and perception of care PATIENTS receiving adequate pain and symptom mx avoiding inappropriate prolongation of dying achieving sense of control relieving burden strengthening relationships with loved ones Quality EOL Care Singer et al JAMA, 1999

30. Quality EOL Care: New Model • Adequate pain & symptom management • Avoid inappropriate prolongation of dying • Achieving a sense of control • Relieving burden • Strengthening relationship with loved ones

31. Osler 1902 • “In what may be called the natural method of teaching, the student begins with the patient, continues with the patient, and ends his study with the patient, using books and lectures as tools, as means to an end…..For the junior student in medicine and surgery it is a safe rule to have no teaching without a patient for a text, and the best teaching is that taught by the patient himself.”