Anne Cavanagh, MD Background in Internal Medicine and Public Health Board Certified in Hospice and Palliative Care HealthLINC Conference February 22, 2013

 Explore roles for palliative care in various health care settings that serve patients with serious illness/injury  Share strategies for helping patients and families express their health care goals and preferences  Share strategies for helping health care professionals respect patient/family goals and preferences  Discuss value and challenges associated with sharing this info across care settings

A) Nurse B) Physician or midlevel provider C) Administrator D) IT professional

A) 99 year old end stage dementia patient whose family is requesting hospice care B) Healthy 25 year old requesting narcotics in the ED C) 31 year old testicular cancer patient hospitalized with chemo related sepsis D) 50 year old diabetic with CHF, hospitalized with minor stroke Answer on Next Slide

A) 99 year old B) Healthy 25 year old C) 31 year old D) 50 year old

 Practice focus is on symptom management, for the patient, family and caregivers.  Regardless of prognosis, but we usually work with seriously ill/injured patients and their families  Chronic or acute needs  Symptoms include physical, psychological, social, economic and spiritual concerns  Interdisciplinary team practice

Physical Functional Ability Strength/Fatigue Sleep & Rest Nausea Appetite Constipation Pain Psychological Anxiety Depression Enjoyment/Leisure Pain Distress Happiness Fear Cognition/Attention Quality of Life Social Financial Burden Caregiver Burden Roles and Relationships Affection/Sexual Function Appearance Spiritual Hope Suffering Meaning of Pain Religiosity Transcendence Adapted from Ferrell et al., 1991

 Not traditional in medical practice other than peds and ob  Grief and loss are experienced by the family, community, and caregivers  Disability is experienced as a significant loss  Medical staff, patients and families may have very different views of “success.”

 In some ways this IS a return to more traditional care methods, ex. recent articles in WSJ and Health Affairs showing that house calls reduce readmissions – duh!  In “modern” health care teamwork, continuity and “high touch, low tech” medicine are not always valued.  Increasing technical and cultural complexity demand a team approach to difficult cases

 Sit down and listen  Uncontrolled symptoms (not just pain) top priority  Include correct decision maker(s) and supports  Understand the medical situation together  Understand patient/family concerns  JOINT plan for next steps, followup

 Longer survival  Better quality of life for patients and families  Less cost – for hospitals this is the big driver to develop palliative care teams. Savings is at least $1,000 per admission  In one study of inpatient cancer patients in the last five days of life the difference was $7,000 per patient, with equal survival and better symptom control.

Illness/Dying Trajectories Slow Decline, Periodic Crises, Death Health Status Time Crises Death Decline Field & Cassel, 1997

A) Patients must be cared for in a licensed hospice facility. B) The benefit is limited to six months. C) The benefit is designed as an alternative to hospital care. D) On average, patients have a shorter but higher quality life.

 Palliative care = symptom management  Hospice is a systematic service of palliative care for patients who have advanced illness (average prognosis less than six months) and their caregivers  Hospice may be thought of as a subset of palliative care.  It is often helpful to describe hospice in terms of insurance benefits

 The patient’s doctor and the hospice medical director use their best clinical judgment to certify that the patient is terminally ill with life expectancy of six months or less, if the disease runs its normal course  The patient chooses to receive hospice care rather than curative treatments for his/her illness  The patient enrolls in a Medicare-approved hospice program

 Interdisciplinary care  Medical appliances and supplies  Drugs for symptom and pain relief  Short-term inpatient and respite care  Homemaker/home health aide  Counseling  Spiritual care  Volunteer services  Bereavement services

 Psychopathology  Increased suicide risk  Higher risk for physical illness  Increased resource use  Higher risk when bereaved was dependent on the deceased, when the relationship was ambivalent, or when death is perceived as the result of abuse or neglect.

 Better patient and family satisfaction  Better outcomes for bereaved  Longer survival for patients  Lower cost of care for patient and also surviving spouse

 Possible selection bias for patients with better social support (unlikely after multiple studies)  MUCH better continuity of care  More comprehensive benefits  Reduction in institutional complications  “You just relax when you stop worrying about when to call the ambulance.”

 Functional decline  Weight loss, not obviously reversible  Recurrent hospital admissions  Major organ system failure  Decubitus ulcer  Aspiration pneumonia (other than as a result of an acute clearly reversible problem)

Palliative Care World Health Organization, 2002 Curative Focus: Disease-Specific Treatments Palliative Focus: Comfort / Supportive Treatments Bereavement Support

Disease-Modifying Treatment Hospice Care Bereavement Support Continuum of care Palliative Care Terminal Phase of Illness Death

 Poor understanding of medical conditions and prognosis  Lack of respect for patient and family rights and preferences  Cultural preferences favoring technical solutions  Financial incentives for intervention

 Help them understand the medical situation  Assist with completion or revision of advance directive documents, starting early  Try to include the correct support people at key points in care planning  Empower people to explore alternatives and make decisions that work for them

 Make documentation of advance directives, legal surrogate, and prior care plans such as code status easy to access  Make it easy to contact key health care professionals who know the patient  Challenge outdated information about care alternatives  Advocate for outcome based rather than procedure based incentives

 Care outside the hospital – home, office, SNF, hospice facility  Who lives here?  Cultural differences  Ethical concerns?  Team composition options