Responding to Patient Needs: the Health Responding to Patient Needs: the Health Care Professional PerspectiveCare Professional Perspective

Sue MacRae, RNDeputy DirectorJoint Centre for Bioethics(416) 978-1395sue.macrae@utoronto.ca

Osler 1902Osler 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.”

A Senior Physician 2001A 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.”

My MessageMy Message

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

QuestionsQuestions

• 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?

What Do Patients Say They Need?What Do Patients Say They Need?

• “Through the Patient’s Eyes”: The former Picker Institute, Boston

Summary of What Patients Say They Summary of What Patients Say They Need Need

Based on the work of The Picker Institute and Harvard University

Access to careRespect for patients’ values and preferencesCoordination of careInformation and educationPhysical comfortEmotional supportInvolvement of family and friendsContinuity and transition

Are we meeting patient needs … Are we meeting patient needs … in hospitals in Ontario?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.

Why do HCPs continue to Why do HCPs continue to be challenged in meeting be challenged in meeting

patient needs?patient needs?

Why?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

HCPs and patients disagree about underlying HCPs and patients disagree about underlying assumptions of quality of life ...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

Doctors inaccurately predict what their Doctors inaccurately predict what their patients would wantpatients 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)

Barriers to Effective Communication: Barriers to Effective Communication: Patient and FamilyPatient 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)

Barriers to Effective Communication: Barriers to Effective Communication: Health Care ProfessionalsHealth 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)

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.

View of a patient from the HCP perspective

Built Environment

Family & Friends

Feelings

Symptoms

Future

Self Image

Providers

Treatment Process

View of a patient from the patient’s perspective

How can HCPs better address How can HCPs better address patient needs?patient needs?

Patient-centred care is ...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?

Patient-centred care is not ...Patient-centred care is not ...

• patients “run the show”

• “them against us”

• endless list of unmet needs

Patient-centred care: Back to BasicsPatient-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.

Patient-centred “good practices”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.

Patient-centred “good practices” (2)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

What do patient centred What do patient centred models look like?models look like?

Patient-centred care applied 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

Advance Care PlanningAdvance Care Planning

HCP• prepare for incapacity• autonomy• written form• patient-doctor relationship

PATIENTS• prepare for death• personal relationships• social process• person-loved one

relationship

Singer et al, Arch Intern Med, 1998

Advance Care Planning: New ModelAdvance Care Planning: New Model

• Confronting death

• Achieving a sense of control

• Relieving burdens on and strengthening relationships with loved ones

FutilityFutility

PATIENT• Human experience

– patient (rotting body)– family (facing death)– doctor (conflict)

• Decision making: communication of uncertainty

• Contextual factors: palliative care, resources allocation

S Workman, MSc thesis, U of T

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.”

Communication & Clarification: New Communication & Clarification: New ModelModel

• Human experience of dying (patient, family and staff)

• Communicating uncertainty

• Palliative care

• Priority setting

Quality EOL CareQuality EOL Care

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

Singer et al JAMA, 1999

Quality EOL Care: New ModelQuality 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

Osler 1902Osler 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.”