Hospice and Palliative care Annette Bracken, RN, CHPN Coordinator of the Palliative Care Consultation Service Valley Baptist Medical Center Harlingen, Texas

Objectives Review historical data and recognize changes in population demographics, health care economics, and service delivery that necessitate the need for improved Palliative care. Describe definitions and principles of Hospice and Palliative care that can be integrated across settings to effect quality care for patients with serious or life limiting illness. Discuss how Hospital based Palliative care and Community based Palliative care can meet the growing demand for quality care and cost effective management of our sickest patient population. Describe the role of the nurse in collaborating with interdisciplinary team members to meet the Physical, Psychosocial and Spiritual needs for patients and families facing and living with serious and life threatening illness.

The Need for Improved Palliative Care Late 1800’s Early to mid 1900’s Field & Cassel, 1997; Saunders 2004

Cause of Death Demographic and Social Trends Early 1900s Current Medicine's Focus Comfort Cure Cause of Death Infectious Diseases Communicable Diseases Chronic Illnesses Death rate 1,720 per 100,000 (1900) 800.8 per 100, 000 (2004) Average Life Expectancy 50 77.8 Site of Death Home Institutions Caregiver Family Strangers/ Health Care Providers Disease/Dying Trajectory Relatively Short Prolonged Administration on Aging, 2000; Field & Cassel, 1997; Minino, et al, 2007

VARATIONS in Cause of Death Age Race Ethnic origin Economic Status Field & Cassel, 1997; Yabroff et al., 2004

Illness/Dying Trajectories Sudden Death, Unexpected Cause < 10% (MI, accident, etc.) Health Status Death Time Field & Cassel, 1997

Illness/Dying Trajectories Steady Decline, Short Terminal Phase Health Status Death Time Field & Cassel, 1997

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

Illness/Dying Trajectories Lingering, Expected Death Frailty Health Status Death Time Lunney et al., 2003

Barriers to Quality Care towards Serious/ Life Limiting Illness Failure to acknowledge the limits of medicine Lack of training for healthcare providers Hospice/palliative care services are poorly understood Rules and regulations Denial of death **Glare et al., 2003; NHPCO, 2009

What is Hospice? Definition History

What is Palliative Care? Definition History

What is Palliative Care? Research confirms palliative care is a relative unknown among consumers. There is a clear need to inform consumers about palliative care and provide them with a definition of palliative care. Data from a Public Opinion Strategies national survey of 800 adults age 18+ conducted in June 2011

Hospice includes 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 http://www.nhpco.org

Payment for Hospice and Palliative Care Services Medicare Medicaid Most private health insurers Palliative Care: Philanthropy Fee-for-service Direct hospital support

Hospice Medicare Benefit Eligibility Criteria 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. http://www.nhpco.org

General Principles of Palliative Care Patient and family as unit of care Attention to physical, psychological, social and spiritual needs Interdisciplinary team approach www.nationalconsensusproject.org

General Principles (cont.) Education and support of patient and family Extends across illnesses and settings Bereavement/grief support for families and staff Panke & Ferrell, 2010; Corless, 2010

Hospice and Palliative Care Current Model: Hospice and Palliative Care Curative Treatment Palliative Care Hospice

Recommended Model: Continuum of Care Death Disease-Modifying Treatment Hospice Care Palliative Care Bereavement Support Terminal Phase of Illness NQF, 2006

Quality-of-Life Model Physical Well-Being Psychological Well-Being Social Well-Being Spiritual Well-Being Ferrell et al., 1991

Adapted from Ferrell et al., 1991 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 Spiritual Hope Suffering Meaning of Pain Religiosity Transcendence Social Financial Burden Caregiver Burden Roles and Relationships Affection/Sexual Function Appearance Adapted from Ferrell et al., 1991

Hospital Based Palliative Care 2009 – consultation service started at VBMC-Harlingen 2011 - consultation services at VBMC- Brownsville

Hospital Based Palliative Care Patients must be referred by their physician A screening tool is available for physicians and staff Staff often asks the attending physician to refer appropriate patients

Hospital based palliative care Ultimate goal is to provide the highest quality care for patient and family. Palliative care consultation service works with the existing care team to provide patient focused family centered care. Educates patient and family to facilitate understanding of the underlying disease process, to promote decision making based on informed choices. Assist patient and family to establish goals of care with focus on immediate and long term patient care needs, to an appropriate level of care in a timely manner.

Encourage advance care planning and completion of advance directives. Hospital based palliative care (CONT.) Optimize pain and symptom management with attention to the psychosocial, emotional and spiritual support to patient and family. Encourage advance care planning and completion of advance directives. Assist dying patients and their families to prepare for and manage care during the last hours or days of life. Serve as educators and mentors to all within the hospital and community.

Number of consultations for 2011-2012

Data: July 2012- December 2012

Data July 2012- December 2012

Data: July 2012- December 2012

Data: July 2012- December 2012

Future for Palliative Care Long Term Acute Care Facility Home Health Community Skilled Nursing Facility Outpatient Clinic ICU/ER Palliative Care needs to be extended to all healthcare settings Hospital Based Palliative Care

Role of the Nurse in Improving Palliative Care Some things cannot be “fixed.” Use of therapeutic presence “being with.” Maintaining a realistic perspective and realistic hope.

Role of the nurse in extending Palliative Care Across Settings Nurses as the constant in a variety of healthcare settings Expanding the concept of healing from wellness and recovery to an understanding of ‘healing’ Becoming educated - see resources

Palliative Care Organizations American Academy of Hospice and Palliative Medicine www.aahpm.org Center to Advance Palliative Care www.capc.org Hospice and Palliative Nurses Association www.hpna.org National Hospice and Palliative Care Organization www.nhpco.org National Consensus Project For Quality Palliative Care www.nationalconsensusproject.org

Clinical Practice Guidelines for Quality Palliative Care National Palliative Care Research Center www.npcrc.org National Board for Certification of Hospice and Palliative Nurses www.nbchpn.org National Quality Forum www.qualityforum.org The Joint Commission www.jointcommission.org