Finding Meaning and Purpose in Palliative Care

Transcription

1 Finding Meaning and Purpose in PALLIATIVE CARE WHAT IS IT? Jeffrey Rubins, MD Director, Palliative Medicine Hennepin Health Services deriv. from pallium, to cloak How do you pronounce palliative? medical specialty focused on improving overall quality of life for patients and families facing serious illness medical specialty focused on improving overall quality of life for patients and families facing serious illness medical specialty focused on improving overall quality of life for patients and families facing serious illness 1

2 medical specialty focused on improving overall quality of life for patients and families facing serious illness medical specialty focused on improving overall quality of life for patients and families facing serious illness Services Experienced communication to ensure treatment matches patient preferences Coordination of care and help in navigating the often-complex health care system Relief of suffering physical, psychological, social, spiritual Enhanced quality of life Support for patients and families - What is it? Provided by interdisciplinary team - What is it? Dietician Recreation Therapist Nurse Palliative Care Physician Social worker - What is it? Provided by interdisciplinary team Provided wherever the patient is Inpatient Home Skilled nursing facility Volunteers Chaplain Mental Health 2

3 PALLIATIVE CARE = HOSPICE % of focus Curative Care % of focus Curative Care Hospice and Bereavement Place Philosophy of care Payment benefit PALLIATIVE CARE WHY NOW? Why now? Changes in Lifespan over Two Millennia 80 Lifespan (yrs) Cause of death: Infection, trauma, childbirth Year (C.E.) 3

4 Why now? Why now? Changes in Lifespan over Two Millennia Lifespan (yrs) Cause of death: Infection, trauma, childbirth Cause of death: Chronic illness The promise of Modern Medicine Health maintained through most of life Morbidity compressed Peaceful death Year (C.E.) Why now? Trajectory of life (ideal) Birth () Why now? The reality of Modern Medicine US adults healthy slightly longer, but Spend more time in progressive debility 85% die in hospitals or NH At time of death 75% non-ambulatory 30% incontinent 40% cognitively impaired Why now? Trajectory of incurable illness - Cancer Why now? Trajectory of incurable illness - Dementia Hospice 4

5 Why now? Trajectory of incurable illness COPD, CHF, etc Why now? Trajectory of incurable illness COPD, CHF, etc Why now? PALLIATIVE CARE IS ONLY AVAILABLE AT A FEW HOSPITALS 1988: First U.S. hospitalbased palliative care program 2008: Palliative care recognized as a medical subspecialty by ABMS 2011: 88% of hospitals with 300+ beds have Palliative Care teams 2014: 84% of hospitals with 50+ beds have teams Why now? CAPC, May

6 PALLIATIVE CARE IS ONLY FOR PEOPLE WITH CANCER PALLIATIVE CARE IS ONLY FOR THE ELDERLY PALLIATIVE CARE WHEN? Common diagnoses appropriate for referral Severe COPD Severe CHF Dementia Cancer Kidney failure Liver failure ALS Neurologic disease Hospice Hospice 6

7 PALLIATIVE CARE HASTENS DEATH PALLIATIVE CARE MEANS GIVING UP TREATMENT % of focus Curative Care PALLIATIVE CARE MEANS GIVING UP MY PHYSICIAN(S) Consultation Advance Care Planning Bereavement Palliative Care Relief of physical symptoms Support for caregivers Psychological and spiritual support 7

8 Bereavement Support for caregivers Advance Care Planning Palliative Care Psychological and spiritual support Relief of physical symptoms Dyspnea Pain Anxiety Depression Poor sleep Fatigue Anorexia Constipation Uncontrolled symptoms Progressive functional decline Poor quality of life Increasing dependence on caregivers Increasing use of healthcare system Bereavement Advance Care Planning Palliative Care Relief of physical symptoms Support for caregivers Psychological and spiritual support Lynn et al, J Am Geriatric Soc 2000; 48:S Advance Care Planning Most physicians do not discuss prognosis with patients 1 Most patients want information regarding prognosis 2 Best-case scenario Patient, family and clinician discuss together treatment options and preferences and document patient s wishes 1. Curtis et al. Eur Resp J 2004;24: Heffner et al. AJRCCM 1996; 154:

9 Advance Care Planning Reality 99% of patients desire AD discussions Only 19% had AD discussions Only 15.2% had discussed life support Only 14.3% thought MDs understood their wishes Advance Care Planning Barriers Providers have limited time Providers have limited expertise No one is in charge No one wants to discuss patient s declining health and approaching death Providers prefer to offer comfort, hope, medical technology rather than let people die Patients and families believe that resuscitation will restore health What do patients want? Rated as extremely important not being kept alive on life support with little hope for meaningful recovery symptom relief provision of care after discharge trust and confidence in physicians not being burden on caregivers Rocker et al. Can Resp J 2008;15: Bereavement Support for caregivers Advance Care Planning Palliative Care Psychological and spiritual support Relief of physical symptoms Assume care in sudden and extreme circumstances Little understanding about disease and how to provide care Costly in terms of time, money, energy Increased risk of mental and physical health problems and death Challenges Advance Care Planning Continuity of care Information and communication Emotional, psychological, spiritual support Education / Training for patient management Access to support services End of life care Follow-up bereavement support 9

10 Finding Meaning and Purpose in Jeffrey Rubins, MD Director, Palliative Medicine Hennepin Health Services 10