MATCHING TREATMENTS TO PATIENTS’ GOALSAn Update on Palliative Care in Delaware Sheila Grant, BSN, RN, CHPN Community Liaison Heartland Hospice
DISCLOSURESI work as a Community Liaison for Heartland Hospice, Homecare & I.V.
OBJECTIVES1. Participants will understand the difference between palliative care and hospice and the current efforts to re-design hospice to break down barriers to care.2. Participants will be able to list the palliative care programs available to Delaware patients in hospital, home care, and long-term-care settings.3. Participants will be able to explain the successes and the needs for expansion and improvement in palliative care in Delaware.4. Participants will know the benefits of the Delaware Medical Orders for Life-Sustaining Treatment, where to download copies of the form, and know how to use it in practice.
WHEN THE TIME COMES . . .Most people say they want But 75% die in a hospital or nursing home to die at home If you want to stay home, you need a plan. Palliative care helps match treatments to preferences. Source: Means to a Better End, Robert Wood Johnson Foundation, 2002.
TRAJECTORY OF ADVANCED ILLNESSWHAT DO COMMONWAYS OF DYINGLOOK LIKE?
EMPOWERING PATIENT’S TREATMENT CHOICES— INFORMED CONSENT = ACCURATE INFORMATION ABOUTPROGNOSIS AND OPTIONS, INCLUDING PALLIATIVE CARE AND HOSPICE. Health System Efforts Legislative Efforts CA, PA, WV Launched initiatives to improve communication about prognosis and treatments options between doctors and patients. NY Passed legislation requiring physicians to discuss palliative options with terminally ill patients
Joint Commission—New Speak UP Initiative features Palliative Care— jointcommission.org/speakup.aspx
JOINT COMMISSION HAS A NEW CERTIFICATION PROGRAM
WHAT’S THE DIFFERENCE?Palliative Care•Provided by an interdisciplinary team of specialists•Focused on quality of life by relieving: Hospice Palliative care in the •pain last 6 months of life, •symptoms after curative •stress of serious illness treatments stop•Provided at any stage of an illness, along withcurative treatment Palliative Care is provided “further upstream” from hospice.
HOSPICE & PALLIATIVE CARESame Different Patients Timeframe Goals Reimbursement method Knowledge base Setting (maybe) Interdisciplinary team
HOW DO HOSPICE & PALLIATIVE CARE FIT TOGETHER IN THE CONTINUUM OF CARE? Hospice Care About 6 About 13 mos. Period of living with illness mos.Diagnosi Deaths
WHEN THE MEDICARE HOSPICEBENEFIT WAS CREATED, BACK IN 1982, Eligibility requirements were put in place to limit costs, not because they made sense, clinically. 1. 6 mo. Prognosis 2. No Curative Treatments allowed Didn’t foresee the explosion of eol care costs Small studies have found that hospice care does not increase costs at end of life. (Aetna) ACA authorized demo projects for concurrent care (no funding, yet).
6-month prognosis requirement is clinically arbitrary and practically difficult. Limiting hospice to patients who forego curative treatments creates an artificial distinction and impedes enrollment and quality of care. Medicare’s unique Hospice eligibility criteria conflicts with efforts to integrate care and align incentives across providers and settings. Suggestions:--Change the hospice eligibility criteria: Concurrent Care (Demonstration project passed, not funded) Eligibility based on need, not prognosis
RETHINKING HOSPICEELIGIBILITY CRITERIADAVID J. CASARETT, MD, MAJAMA. 2011;305(10):1031-1032. 3 problems with Medicare Eligibility Criteria for Hospice: 1. They encourage late referrals + short LOS 2. They are based on prognosis (uncertain). Should be based on NEEDS, like every other benefit. 3. They reduce access for some groups (e.g. African Americans less likely to use hospice.)
The “H-Word” “HOSPICE” Be afraid. Be very afraid.
IT’S NOT AS BAD AS IT LOOKS-- V.A. and Pediatric Hospitalswere not counted (M’care andIHI data were used.) St. Francis Hospital’spalliative care service misseddeadline for inclusion. Data did not account forhospital size (CCHS countedequal to Beebe)
HOSPICE & PALLIATIVE CARE BOARD-CERTIFIED PHYSICIANS IN DELAWARE
WE ALSO HAVE 2 NEW PALLIATIVECARE FELLOWSHIP-TRAINEDPHYSICIANS IN DE Roshni Guerry, MD at Christiana Care Hospitalist Partners Demetris Platis, MD at St. Francis Hospital, Family Medicine Dept.
TIM COUSOUNIS, PALLIATIVE CARE CONSULTANT Hospitals will likely look to post-acute care networks to assist in managing the care of patients at-risk for re-hospitalization. Palliative care. . . may be provided under many health plan benefits, including, of course, The hospice benefit, The home health benefit, and Medicare Part B, for physician outpatient or home-based visit coverage. Tim Cousounis’ Blog palliativemedicine.blogspot.com
PALLIATIVE CARE PROVIDERS IN DE Dr. Goodill, Dr. Roshni Guerry, Dr. Linsey O’Donnell and NP’s Shirley Christiana Care Health Brogley, MariPat Wellz-Bosna, Jo Melson, Brenda Eastham, Chap. Pat System Malcolm Dr. Theresa Gillis has an outpt. P.C. practice as part of the Helen Graham A.I. DuPont Children’s Center. Hospital Wilmington V.A. Med. Full-time medical director, NP, SW, additional full and part-time physicians, Ctr. volunteer chaplain. Inpatient, outpatient and home settings are covered. St. Francis Hospital Dr. Dihenkar, APRN’s Maria Ash, and Marie Sedlak-Lupone staff the VA Program. Dr. Dan DePietropaolo and Cindy Jones, APRN provide palliative Delaware Hospice consults. Dr. Dimitris Patris just finished a P.C. Fellowship Heartland Home Care Home & Community Based Palliative Care Consult Program (ACP & P.C. in NC and Sussex Counties—Medicare B pays) Beebe Hospital Fragile Patient Program thru Home Care Service-pts. need not be eligible for hospice to receive services. Bayhealth (Kent Gen. Dr. Salvatore (pulmonologist) at Beebe has a small, palliative care and Milford Mem.) practice. Plannning stages of forming a Palliative Care Team. They have offered
What are we missing in DE?Access to Palliative Care• Palliative Care specialists in ALL hospitals• Palliative Care outside the hospital (though home care or hospice programs)Quality Palliative Care• Adequate numbers of board-certified palliative specialists• Better overall outcomes
NOT EVERYONE WITH ADVANCEDILLNESS HAS ACCESS TO NEEDS (OR NEEDS) A PALLIATIVE SPECIALISTPrimary Palliative Specialist Care Palliative CareAll health care providers should Certified and fellowship-trainedhave a basic level of expertise providers will serve patients with greater needs
PALLIATIVE CARE IS NOT NEWSo why are wetalking about itnow?New RESEARCH!New CLINICALGUIDELINES!
EARLY PALLIATIVE CARE FOR PATIENTS WITH NON-SMALL CELL METASTATIC LUNG CANCER RCT [standard oncologic care OR standard oncologic care + palliative care] P.C. group showed significant improvements in: quality of life moodAND Less aggressive care at the end of life Longer survival (11.6 mo. vs. 8.9 mo.) —n engl j med 363;8 nejm.org august 19, 2010
PROVISIONAL CLINICAL OPINION Recent Data: Seven published RCTs form the basis of this PCO. It is the Panel’s expert consensus that combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden.
SPIKES—A SIX-STEP PROTOCOL FOR DELIVERING BAD NEWSSetting—Privacy, include sig. others, sit down, manage time,make a connection)Perception—“What have you been told about your medicalsituation so far?”, ASK-TELL-ASKInvitation—Ask the patient if they would like to know moreabout their illness, their prognosis, their treatment options. ASK-TELL-ASK.
SPIKES, CONTINUEDKnowledge—Share information. Give a warning shot “I’m sorry tosay I have some bad news.” Unfortunately, the treatment is not working.”“I wish things were different, but . . . “ Avoid excessive bluntness. Don’tsay “There’s nothing more we can do”. We can always adjust our plan ofcare to meet new goals when prognosis changes.Empathy—Respond to the patient’s emotion—anger, denial,sadness, relief, etc. (“I can see this is upsetting for you”. “I was alsohoping for better results”, “I can tell you weren’t expecting to hear this.”)If emotions are not expressed, ask more questions.Strategy—Present treatment options, including palliative care, ifappropriate.
DELAWARE NOW HASA NEW EMS REGULATION IN PLACEEMS Providers willhonor a new formcalled MedicalOrders for LifeSustaining Treatment(or MOLST) to takethe place of thePACD
OUR DE MOLSTShould beprinted onpurple cardstockand looks likethis:
ADVANTAGES OF MOLST:• Clear, Standardized Instructions• Translates a patient’s Living Will into an Actionable Medical Order (Ideally patients will have both L.W. and MOLST)• Portable—Follows pts. thru transitions of care• Available On-line—No cost to the State for printing and distribution
ALL ADULTS SHOULD COMPLETE A LIVINGWILL AND HEALTH CARE POA• MOLST is recommended only for people with advanced illness or frail elders who want to give instructions for their MOLST care.
11/11 Study* showed94% overall consistency rate between POLST orders and treatments given. POLST/MOLST Works! *Study included 90 nursing facilities in OR, WI, WV
WHY? BECAUSE FAMILIES SUFFER WHEN PATIENTS HAVE A “DIFFICULT DEATH” Many surrogate decision makers experience symptoms for up to 20 years or more after a death • Avoidance • Intrusion • Hyper-arousal • PTSD!
PLACE OF DEATH: CORRELATION WITH QUALITY OFLIFE OF PATIENTS WITH CANCER AND PREDICTORSOF BEREAVED CAREGIVERS’ MENTAL HEALTH Patients with cancer who die in a hospital or ICU have worse QoL compared with those who die at home, Their bereaved caregivers are at risk for developing psychiatric illness. Interventions aimed at terminal hospitalizations or o hospice utilization may enhance patients QoL at the EOL and minimize bereavement-related distress. JCO October 10, 2010 vol. 28no. 29 4457-4464
ADVANCE CARE PLANNING ANDPOLST/MOLST ARE AN IMPORTANT PARTOF :• Coordinated care Look at the examples: delivery • Geisinger (PA)• Smooth Care • Guthrie (PA)Transitions • Kaiser • Gunderson• Accountable Care • Cleveland Clinic Organizations • Grand Junction, CO
WITHOUT WRITTEN INSTRUCTIONS,IT’S HARD TO KNOW WHAT A PATIENT WANTS
NATIONAL COALITION FORHOSPICE AND PALLIATIVE CARE The NCHPC is designed to focus on common organizational goals.
LEGISLATIVE UPDATE: SUPPORT PCHETA Provides funding for : Palliative Care and Hospice Education Centers Interdisciplinary career incentive awards (APRN’s, SW’s, Pharm., Psych. Pursuing advanced degrees in p.c.) Academic Career Awards (for those who teach p.c.)
LEARN THE LATEST NEWS FROM EXPERTS IN THE FIELDIncreased focus on hospice Is it time for another lawsuit? reform Advocating to change the Medicare Hospice Benefit eligibility requirements
WIN PROBAILITY: The expected chance that a team will win a game at a particularmoment in time, given the situation it faces. --from ESPN Magazine viaPallimed.org
AS YOU THINK ABOUT RESEARCH, POLICY, REGULATIONS, PAYORS, CERTIFICATIONS, Don’t forget: Keep your focus on patients and families.
DO NOT RESUSCITATE BY BRENDA BUTKA, MD VANDERBILT UNIV. SCHOOL OF MEDICINE, PUBLISHED IN JAMA 10/24/12I can say your father is dying . . . I can say do not confuseI can say love does not conquer all . . resuscitation.blind hope is not a recipe for with resurrection, althoughsuccess. . . neither works particularly wellunderdogs usually lose . . .death is not the worst thing, it is just You look like you are drowningthe last thing Pallid and slow inBut for you that is not true. . . . The waiting room’s underwaterI can say we should not do this lightHe will never be the same.I can say So, Tell meIf it were my father. Tell me again. Tell me about your father.
WE NEED TO PROVIDE BETTER CARE FOR PEOPLE WITH ADVANCED ILLNESS Palliative Care is making it happen