1Demystifying Palliative Care: Evidence, Guidelines, & Quality Care Akshai Janak M.D.Palliative Care Medical DirectorHuntsville HospitalCo-author: Lizzie Giles M.D. PGY-3
2Objectives Clarify basic myths around palliative care Understanding the concept of Palliative Care and evidence supporting it.Differentiate between hospice & palliative careConcept of IDTRole in HH health system
410 myths of Palliative Care Palliative Care means…My doctors have given up on me.No more treatment .Only for people with cancer.Only for old people.I’m very close to death.What do you think of when you hear the word Palliative Care4
510 Myths of Palliative Care They dope you up & you sleep until you die.If I get morphine, I will stop breathing.I can only get palliative care if I’m in the hospital.My family can’t help if I’m in palliative care.I will have no control if I agree to palliative care.
7The “elephant” service @ Huntsville Hospital It's hospice.It's who you call when you want to withdraw care.It's who you call when you want to start a morphine drip.It's who you call when you want to call ethics but would like to be less confrontational.
8Once they know, people want a piece of that “elephant”
9What is Palliative Care? Specialized medical care for people with serious illnesses.Care is focused on providing relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis.The goal is to improve quality of life for both the patient and their family.
10So, is Palliative Care the same as End-of-life Care or Hospice Care? NO! Palliative care is appropriate at any age & at any stage in a serious illnessPalliative Care can be provided along with curative treatment.Why do non terminal patients need Palliative Care? Because Serious illnesses come with:Complex, difficult decisions about treatment optionsHigh symptom burdenDesire for CLEAR prognosticationMany patients with serious illness, even when they are not in terminal phases, have complex psychosocial situations that would benefit from a team approach.Serious illnesses affect the patient & their loved ones. Both need support.
11Palliative Care providers have advanced training in: Communication about serious medical conditions & shared decision- making:PALLIATIVE MODEL: “What are your goals and how can we help you achieve them?”Prognostication:PALLIATIVE MODEL: A caring discussion of projected illness timelines and scenarios for future decision-making.Complex Symptom Management:PALLIATIVE MODEL: inpatient/outpatient mgt of recalcitrant physical & psychosocial symptomsPharmacologicNon-pharmacologicTeam ApproachMAINSTREAM MODEL: giving patient options based on specialty training, “Patient, here's what we can do for you” (menu model)MAINSTREAM MODEL: A reluctance to give a timeline due to fear of crushing hope & provider uncertainty. (Let’s see model)MAINSTREAM MODEL: One drug for each symptom. Escalate dosage & add agents as needed. (polypharmacy model)
14Is this a new idea? Lessons from 1995 & End-of-Life Care
15Care Changes after 1995More-frequent discussions of “Code Status” when patients become critical in the hospital. (Too late?)More referrals to Hospice when patient is a “non responder” to curative therapies or the “end-stage” of a chronic disease. (Will these pts get the full, 6m. Benefit?)Research into aggressive pain & symptom management resulting better care for patients who are actively dying in the hospital.E.G. opioid end-of-lifeE.G. “comfort care” order sets
19The New Model for Medical Care: Palliative Care from the Beginning & Even more @ the End
20Where is Palliative Care Being Used? Ideally, throughout the course of a diseaseIn all treatment settings: inpatient, outpatient, specialized clinics, at home, etc...
21So, who provides this “palliative care”? At HH Palliative Care is a Interdisciplinary TEAM:Lead by a physician & includes:Nurse practitionersChaplain serviceMusic therapyPharmacy, SW, & Nutrition supportTeam members work together to ensure that palliative goals are met for each patientDaily & Weekly mtgs to discuss patient care & troubleshoot difficult cases.
22Case #1: Severe Renal Disease Betty is a 56 yo living with CKD Stage 4 2ndary to insulin-dependent DM2Comorbidities: HTN, obesity (BMI: 31%), & CAD.Social: Betty is married, with 3 grown children, & her husband is disabled from chronic back pain from spinal stenosis.Betty's CKD is transitioning to stage 5.Her nephrologist is unsure that any further pharmacological treatment can slow her disease progression.
23How does palliative Care fit into Betty's care? The Renal Physician's Working Group on Shared Decision Making, Nephrologists should...GIVE INFORMATIONDISCUSS PROGNOSISDETERMINE GOALS OF CAREGIVE ANTICIPATORY GUIDANCEPROVIDE SYMPTOM CONTROLThe Renal Physician's Working Group on Shared Decision Making, Nephrologists should...GIVE INFORMATION: Fully inform AKI, stage 4 & 5 CKD, and ESRD patients about their diagnosis, prognosis, & all treatment options.DISCUSS PROGNOSIS: The “surprise” question “Would I be surprised if this patient died in the next year?” can be used together with known risk factors for poor prognosis to determine if dialysis is indicated.DETERMINE GOALS OF CARE: Estimate of prognosis should be discussed with the patient or legal agent, patient’s family, to develop a consensus on the goals of care & whether dialysis or active medical management w/o dialysis should be used to best achieve these goals.GIVE ANTICIPATORY GUIDANCE: Consider a time-limited trial of dialysis for patients requiring dialysis, but who have an uncertain prognosis, or for whom a consensus cannot be reached about providing dialysis.PROVIDE SYMPTOM CONTROL: To improve outcomes, offer palliative care services & interventions to all AKI, CKD, & ESRD patients who suffer from burdens of their disease. Palliative care services are appropriate for people who chose to undergo or remain on dialysis & for those who choose not to start or to discontinue dialysis.: age, comorbidities, severe malnutrition, and poor functional statusIf a time-limited trial of dialysis is conducted, the nephrologist, the patient, the patient’s legal agent, and the patient’s family (with the patient’s permission to participate in decision-making) should agree in advance on the length of the trial and parameters to be assessed during and at the completion of the time-limited trial to determine whether dialysis has benefited the patient and whether dialysis should be continued.
24So, what happened next?Betty, her husband, & her eldest daughter (by phone) discuss with her nephrologist the risks/benefits of dialysis.All agree that Betty wants to start hemodialysis with an understanding of the lifestyle limitations & how long she can expect to live while on dialysis.Yearly check-ins with her nephrologist and a team at the dialysis center are scheduled to discussher dialysis treatmentBetty's symptom controladvance directiveshow well her co-morbidities are controlled
25When to consult a Palliative IDT? 2 years into dialysis, Betty voices concern that her symptoms are not as well controlled as they used to be. Her epogen dose is optimized but her pleuritis continues.Her polyneuropathy from her CKD & DM is not as well controlled with medications from her family doctor.Betty is also seeming more fatigued after each dialysis session & her BMI is now 25%. Her appetite has declined.Her husband and daughter note that she's not as positive about her health as she used to be.Is this a good time to consult Palliative Care?
26YESSS!! Symptom Burden Anticipatory guidance AFTER consultation: Betty has better symptom control: a new regimen is startedBetty revises her Advance DirectiveNo Artificial Nutrition/HydrationNo artificial life support except HDAND/DNRBetty wants to continue dialysis because her symptoms are better controlled.symptom burden:IDT will address Betty's increasing symptom burden with a multimodal approachAnticipatory guidance:IDT will discuss illness trajectories & possible decisions for future care with Betty & her family
27Guidelines: Where does Palliative fit into CKD? Nephrology 16 (2011) 4-12
28& now to crisisBetty does well for another 3m but then suffers 2 back-to- back infections with 1 week hospitalizations each.She is again more fatigued & less willing to go to her dialysis sessions.Her husband's health is also declining & he is advised to no longer drive. Both Betty’s daughters are concerned.Betty’s BMI is now 19%.Betty is hospitalized again for a 3rd infection. The IDT is consulted & the family requests spiritual support & agrees to a visit from the music therapist.
29Inpatient Results/Care After an IDT meeting, Betty decides to continue dialysis for 6 months with monthly visits with an outpatient, Palliative IDT to see if her symptoms can be better controlled.Betty expresses reluctance to come back to the hospital if she contracts another infection: she requests a “do not transfer” order.Betty is open to aggressive outpatient care including abx, should she need it.Betty reaffirms her AND/DNR status & her wish that her eldest daughter be her surrogate should she be incapacitated.
30The final chapter Betty continues dialysis. She also starts attending church more regularly....3 weeks later, Betty becomes delirious at home. Her husband panics & calls 911.Betty is started on broad spectrum abx in the ED & is admitted by the hospitalist service.Records are reviewed and both Nephrology & Palliative Care are reconsulted on Day 1 of admission.Betty becomes more lucid on day 2 of admission but is very fatigued. She requests to be transferred home.
31HospiceAfter a tearful family meeting & prayer with the IDT chaplain, Betty & her husband agree (with daughter via phone) to transition to hospice care.Betty agrees to continue her current course of antibiotics to appease her husband but then wants to discontinue dialysis and pursue hospice care.Social Work provides Betty's daughter with a list of Hospice agencies & discharge is arranged on hospital day 4.
32Case Review Take-Aways this point there are no out-patient Palliative Care Teams in Huntsville.Real-Life: Transition to Hospice was not seamless. Caregivers (e.g. Betty's husband) are not always ready to change goals of care.Primary vs. Specialist Palliative Care: Primary Palliative Care was achieved by a nephrologist-lead team before a Specialist Palliative team was consulted/needed.Nephrology guidelines followed due to sufficient resources for a team approach.Resource Management: Hospital Stay shortened by consultation of the IDT along with readmissions once pt is enrolled in hospice.Patient/Family Satisfaction: Family appreciates the time to decide, the IDT conversations, & are comfortable with the D/C plans.
33Levels of palliative expertise: everyone can be a little palliative
36Now... James a Cardiac Case 60 y/o AAMROS: SOB, early satiety, LEE, wt gain 10lb/wkPFSH: HTN, DM. Father-CVA, Mother-CHF. 30 pack year. Married, Financial Manager, 2 adult children.
37James is hospitalized for... CC: acute respiratory failure, intubated on the way to the hospital.HPI:Chuck E Cheese birthday party for granddaughter yesterday. Wife says he held diuretics for social gathering. Says, “It was a great day”.AM of admission, she reports that he “passed out” walking from the bed to the bathroom but regained consciousness.Wife says, “he was working hard to breathe”. Called 911.Intubated on scene & transferred to ED.
38Initial ICU Care Cardiology (1st day) Started IV Inotropes: Milrinone Renal dose dopamineDiuretic challenge FAILEDRenal consulted (1st day)Medical managementMgt Fails Recommend dialysis day #2
39Palliative Input: after Dialysis proposed Palliative Care (2nd day)Family meeting to discuss treatment optionsFamily Meeting New Goals of Care:Decline DialysisDisable AICDCompassionate ExtubationComfort measuresTransition of Care:Home with hospice of choice
40Take-Aways from Case #2Integration in the hospital of curative/restorative care & palliative careGoals of Care/Treatment shift over timeSHARED Decision-Making: Palliative Care Team meets the patients & families where they are & respect family choicesNote the Distinction between AND/DNR status & patient's desire for treatment:Patients often decide to forgo CPR & intubation while still desiring other forms of curative/restorative careIV diuretics, pacemakers, abx, etc. VS. Intubation & CPR
44Examples of Reasons to Consult Palliative Care Disease-specific Examples of Reasons to Incorporate or Consult Palliative Care.
45Triggers to Consult the Palliative Care IDT in the Hospital Presence of a Serious, Chronic Illness that is becoming burdensome or hard to manage, or newly diagnosed, or with limited treatment optionsDeclining ability to complete activities of daily livingWeight loss / Multiple hospitalizations / DNR order conflictsDifficult to control physical or emotional symptoms related to medical illnessPatient, family or physician uncertainty regarding prognosis or regarding goals of carePatient or family requests for futile careUse of tube feeding or TPN in cognitively impaired or seriously ill patientsLimited social support and a serious illness (e.g., homeless, chronic mental illness)Patient, family or physician request for information regarding hospicePatient or family psychological or spiritual distress
46When Palliative can help in the ICU Admission from a nursing home in the setting of one or more chronic life-limiting conditions (e.g., dementia, chronic CHF, COPD)Two or more ICU admissions within the same hospitalizationProlonged or difficult ventilator withdrawalMulti-organ failureConsideration of ventilator withdrawal with expected deathMetastatic cancer or Anoxic encephalopathyConsideration of patient transfer to a long-term ventilator facilityFamily distress impairing surrogate decision makingSource:
47Current Model Increased cost Increased dissatisfaction Increased cost EMR
48Better Model Primary Care Palliative Integrated Med System Decreased costDecreased dissatisfactionDecreased costDecreased dissatisfactionDecreased costDecreased dissatisfactionBetter Model
49Swinging of the Pendulum Disease Mgt SystemPaternalismTreat until deathHealth Mgt SystemConsumer DirectedPalliative Focus
50Huntsville Hospital Palliative Care Since Sept 2012….800+ strong and growingGoals:Inpatient Palliative Care UnitOutpatient Palliative Care ClinicHome Palliative care with HFCInpatient Hospice with HFCHealthcare system integration
51In Summary…When in doubt & the case is complex with either patient/family or caregiver uncertain about treatments or favorable outcomes, CONSULT Palliative CareWe're here to help deliver patient-centered, cost-conscious care supported by evidence!!
52WHO Definition Health is… a state of complete physical, mental & social well-being & not merely the absence of disease or infirmity.52