Demystifying Palliative Care: Evidence, Guidelines, & Quality Care

1. Demystifying Palliative Care: Evidence, Guidelines, & Quality Care Akshai Janak M.D. Palliative Care Medical Director Huntsville Hospital Co-author: Lizzie Giles M.D. PGY-3

2. Objectives • Clarify basic myths around palliative care • Understanding the concept of Palliative Care and evidence supporting it. • Differentiate between hospice & palliative care • Concept of IDT • Role in HH health system

4. 10 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.

5. 10 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.

6. You're not alone in being unaware...

7. The “elephant” service @ Huntsville Hospital

8. Once they know, people want a piece of that “elephant”

9. What 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.

10. So, 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 illness • Palliative Care can be providedalong with curative treatment. • Why do non terminal patients need Palliative Care? Because Serious illnesses come with: • Complex, difficult decisions about treatment options • High symptom burden • Desire for CLEAR prognostication • Many 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.

11. Palliative 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 symptoms • Pharmacologic • Non-pharmacologic • Team Approach

13. It's Part of the Same Spectrum of Care...

14. Is this a new idea? Lessons from 1995 & End-of-Life Care

15. Care Changes after 1995 • More-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 is @ 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 drips @ end-of-life • E.G. “comfort care” order sets

16. So... Wasn't that enough?

17. …Well, in 2010 research found

19. The New Model for Medical Care: Palliative Care from the Beginning & Even more @ the End

20. Where is Palliative Care Being Used? • Ideally, throughout the course of a disease • In all treatment settings: inpatient, outpatient, specialized clinics, at home, etc...

21. So, who provides this “palliative care”? • At HH Palliative Care is a Interdisciplinary TEAM: • Lead by a physician & includes: • Nurse practitioners • Chaplain service • Music therapy • Pharmacy, SW, & Nutrition support • Team members work together to ensure that palliative goals are met for each patient • Daily & Weekly mtgs to discuss patient care & troubleshoot difficult cases.

22. Case #1: Severe Renal Disease • Betty is a 56 yo living with CKD Stage 4 2ndary to insulin-dependent DM2 • Comorbidities: 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.

23. How does palliative Care fit into Betty's care? The Renal Physician's Working Group on Shared Decision Making, Nephrologists should... • GIVE INFORMATION • DISCUSS PROGNOSIS • DETERMINE GOALS OF CARE • GIVE ANTICIPATORY GUIDANCE • PROVIDE SYMPTOM CONTROL

24. So, 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 discuss • her dialysis treatment • Betty's symptom control • advance directives • how well her co-morbidities are controlled

25. When 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?

26. YESSS!! • Symptom Burden • Anticipatory guidance • AFTER consultation: • Betty has better symptom control: a new regimen is started • Betty revises her Advance Directive No Artificial Nutrition/Hydration No artificial life support except HD • AND/DNR • Betty wants to continue dialysis because her symptoms are better controlled.

27. Guidelines: Where does Palliative fit into CKD? Nephrology 16 (2011) 4-12

28. & now to crisis • Betty 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.

29. Inpatient 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.

30. The 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.

31. Hospice • After 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.

32. Case Review Take-Aways • Idealization: @ 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.

33. Levels of palliative expertise: everyone can be a little palliative

34. In-patient Palliative Consults save Costs, Resources, & Re-admits Arch Inten Med/vol 168 (No.16), Sep 8, 2008

35. Palliative Care can fill the “Stage 4” Care GAP

36. Now... James a Cardiac Case • 60 y/o AAM • ROS: SOB, early satiety, LEE, wt gain 10lb/wk • PFSH: HTN, DM. Father-CVA, Mother-CHF. 30 pack year. Married, Financial Manager, 2 adult children.

37. James 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.

38. Initial ICU Care • Cardiology (1st day) • Started IV Inotropes: Milrinone • Renal dose dopamine • Diuretic challenge  FAILED • Renal consulted (1st day) • Medical management • Mgt Fails  Recommend dialysis day #2

39. Palliative Input: after Dialysis proposed • Palliative Care (2nd day) • Family meeting to discuss treatment options • Family Meeting New Goals of Care: • Decline Dialysis • Disable AICD • Compassionate Extubation • Comfort measures • Transition of Care: • Home with hospice of choice

40. Take-Aways from Case #2 • Integration in the hospital of curative/restorative care & palliative care • Goals of Care/Treatment shift over time • SHARED Decision-Making: Palliative Care Team meets the patients & families where they are & respect family choices • Note 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 care • IV diuretics, pacemakers, abx, etc. VS. Intubation & CPR

41. Palliative Resource-Savings in ICU Care:

43. To Review

44. Examples of Reasons to Consult Palliative Care

45. Triggers 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 options • Declining ability to complete activities of daily living • Weight loss / Multiple hospitalizations / DNR order conflicts • Difficult to control physical or emotional symptoms related to medical illness • Patient, family or physician uncertainty regarding prognosis or regarding goals of care • Patient or family requests for futile care • Use of tube feeding or TPN in cognitively impaired or seriously ill patients • Limited social support and a serious illness (e.g., homeless, chronic mental illness) • Patient, family or physician request for information regarding hospice • Patient or family psychological or spiritual distress

46. When Palliative can help in the ICU • Admission from a nursing home in the setting of one or more chroniclife-limiting conditions (e.g., dementia, chronic CHF, COPD) • Two or more ICU admissions within the same hospitalization • Prolonged or difficult ventilator withdrawal • Multi-organ failure • Consideration of ventilator withdrawal with expected death • Metastatic cancer or Anoxic encephalopathy • Consideration of patient transfer to a long-term ventilator facility • Family distress impairing surrogate decision making Source: http://getpalliativecare.org/resources/clinicians/

47. Current Model EMR Increasedcost Increasedcost Increasedcost Increaseddissatisfaction Increaseddissatisfaction Increaseddissatisfaction

48. Integrated Palliative Primary Care Decreasedcost Decreasedcost Decreasedcost Decreaseddissatisfaction Decreaseddissatisfaction Decreaseddissatisfaction Care MedSystem Better Model

49. Swinging of the Pendulum • Health Mgt System • Consumer Directed • Palliative Focus • Disease Mgt System • Paternalism • Treat until death

50. Huntsville Hospital Palliative Care • Since Sept 2012…. • 800+ strong and growing • Goals: • Inpatient Palliative Care Unit • Outpatient Palliative Care Clinic • Home Palliative care with HFC • Inpatient Hospice with HFC • Healthcare system integration