Palliative Care is Quality Care

1. Palliative Care is Quality Care Christian Davis Furman, MD, MSPH, AGSF Medical Director, Institute for Sustainable Health & Optimal Aging Professor, Palliative and Geriatric Medicine Margaret Dorward Smock Endowed Chair in Geriatric Medicine

2. Learning Objectives • Identify how Palliative Care can improve the quality of patient care • Understand the importance of language in patient discussions • Understand that curative care and palliative care can co-exist

3. Outline • Case Presentation • Overview of Palliative Care • Palliative Care Improves Quality of Care • Cases from audience • Question and Answer • Evaluation

4. Case History • 29 year old male, diagnosed HIV positive 1995, on HAART treatment since 2000. • CD4+ count never above 13. • Essentially asymptomatic until early April 2004 when he begins to have severe N/V/D.

5. Case History • Workup shows Cryptosporidium, and treatment with Marinol and Azithromycin begun. Multiple other medications given for symptomatic treatment. • Readmission 12 days later, ID and GI follow, symptoms continue. Stays 16 days. • Readmission 12 days later, by now with significant weight loss, continued electrolyte abnormalities, dehydration, confusion.

6. Case History • Initial palliative care evaluation in early May, but patient is unwilling to consider hospice. • In early July, after frank discussion about prognosis by primary team, is referred again for palliative care consult. • Patient’s hope is to get better. Failing that, his wish is to return home one more time. Patient declines immediate return to his home, because of his severe weakness and wants to get better in the hospital before returning home. No caregiver at home.

7. Case History • Patient agrees to transfer to inpatient hospice for symptom management for D/N/V but wishes for continued aggressive AIDS treatment with mega-HAART. • Considers his ID physicians his primary care physicians whom he trusts. They will co-manage care with hospice team. • Expresses wish for PEG to assist with nutrition and medications. At this point BMI is 14, and patient is severely malnourished.

8. Case History • PEG with J extension placed in mid-July after extensive discussions of risk/benefits. • Patient starts with Peptinex as well as glutamine feedings in attempt to improve absorption and nutrition. • Patient started on IV AZT and SC Emfuvirtide as Mega-HAART ineffective. • Hospice team uncomfortable with this aggressive treatment at first because many thought patient was dying and this was futile care. Chaplain recommended stay in Hospice Unit for “humanitarian reasons.”

9. Case History • Patient becomes increasingly edematous, weak and lethargic. • Dilaudid gtt started to treat pain from PEG/J site. • Estranged family members are contacted and they visit. • Agreement by NOK to stop AIDS treatment, and to use only comfort measures. • Patient dies 12 days after PEG/J placed.

10. Teaching Points from Case • Patient received curative care and palliative care. • When patient declined hospice, there was no palliative care clinic to refer to – no follow-up, so multiple admits. • Patient did not get to go home one more time. • Patient’s symptoms were controlled.

11. History… • A century ago most people died suddenly and all medicine was palliative • Both modern hospice movement and life-prolonging intensive care modalities developed in 1960’s and 70’s

12. …History • Over 90% of Americans now die following a prolonged chronic illness • Cure rates for most advanced cancers remain very low • Only 15% of inpatients receiving CPR survive to hospital discharge

14. Potential Goals of Care • Relief of suffering • Quality of life • Staying in control • A good death • Support for families and loved ones • Cure of Disease • Avoidance of premature death • Maintenance or improvement in function • Prolongation of life Adapted from EPEC Module 7

15. EPEC: Ideal Timing of Palliative Care Cure or disease control Palliative care Presentation Death

16. IOM Report on Cancer Care (2001) “….patients should not have to choose between treatment with curative intent or comfort care. There is a need for both, in varying degrees….whether the eventual outcome is long-term survival or death.”

17. Barriers to Integration of Comfort and Life-Supporting Care… • Prognostic uncertainty • Decisional incapacity • Death-denying society • Lack of education about palliative care among providers and consumers

18. Barriers to Integration of Comfort and Life-Supporting Care… • Pain, dehumanization associated with invasive treatments may conflict with palliative care goals • Sedation, side effects of comfort medications may conflict with life-saving and restorative care goals

19. Barriers to Integration of Comfort and Life-Supporting Care… • Communication, biases, attitudes • Reimbursement • Hospices receive per diem payments that are inadequate to cover expense of many life-supporting treatments • No insurance benefits to cover costs of an interdisciplinary palliative care team

20. Palliative Medicine • Refers to a medical specialty that focuses on patients whose diseases are not responsive to curative treatment. • Includes very aggressive measures to control pain and other distressing symptoms

21. Palliative Care • Refers to whole-person care for patients whose diseases are not responsive to curative treatment • May be provided by an interdisciplinary team of physicians, nurses, social workers, chaplains, and other healthcare professionals • Symptom control is paramount and includes the alleviation of physical, psychological, social or spiritual

22. Palliative Care • Goal is to achieve the best quality of life for patients and their families • Many aspects of palliative care are applicable earlier in the course of an illness

23. Hospice • Refers to a program that provides coordinated comprehensive palliative care for terminally ill (usually less than 6 months) patients and their families, whether in home or facility settings, through an interdisciplinary team of healthcare professionals.

24. Hospice • Most common payer is Medicare • Life expectancy less than 6 months • Emphasizes patient-centered approach • Emphasizes living life in the time the patient has left

25. Palliative Care • No well-identified payer source • No defined limit on life-expectancy • No baggage from the word “Hospice” • Same principles of care as Hospice • Emphasizes living life in the time the patient has left

26. Educate Others About Palliative Care • Understand it more clearly yourself

27. Second Case • 59 y/o WF with end-stage lung disease from idiopathic pulmonary fibrosis with secondary pulmonary hypertension. Dx’d Sept. 2011 • Referred to me by her pulmonologist for Palliative Care Consult • On maximal treatment for her lung disease, including Sildenafil

28. Quality of Care in Case • Treated shortness of breath with an opioid – started with Hydrocodone and moved to Morphine • Discussed Goals of Care – patient very clear she wants comfort and to not go back to the hospital • Addressed family concerns – husband recently diagnosed with pancoast tumor of lung

29. Quality of Care in Casecont’d. • Addressed Environment • Stopped meds she did not need for comfort – BP too low • Continue Sildenafil • Consulted Hospice/Hosparus

30. Palliative Care Can Improve Quality of Care • New England Journal of Medicine article in 2010 – “Early Palliative Care for Patients with Metastatic Non-Small- Cell Lung Cancer” • By Temel, et.al. • Randomly assigned patients with newly diagnosed lung cancer to palliative care integrated with standard oncology vs. standard oncology alone

31. Improved Quality of Care • Found that palliative care consult group had: • Better Quality of Life • Decreased depressive symptoms • Less aggressive care at EOL, but prolonged life by 3 months

32. Article in The New Yorker • “Letting Go – What should medicine do when it can’t save your life?” Aug. 2, 2010. by Dr. Atul Gawande • Dr. Gawande is Harvard Med School general surgeon • He felt like he failed his patients because he was not honest with them.

33. Article, cont. • Pregnant woman at 39 weeks diagnosed with lung cancer. Delivered baby, so could treat mother’s lung cancer • Received fourth line chemo and cancer spread. No one was discussing advance care planning • Primary physician was one who discussed DNR and palliative care consult

34. Article, cont. • Need to pay for Goals of Care discussions • Need to embrace curative care, along with palliative care – some insurance companies will pay for both

35. Quality • Defined by experience of patient and family • Goals of care must be discussed • Palliative Care must be involved at diagnosis

36. Language to Describe Palliative Care Goals • Hope for the best, plan for the worst • No missed opportunities • Meet your needs and goals; understanding what is possible and what we wish could happen, but cannot • I want to give the best care possible until the day you die, enjoy the time remaining, however long that is

37. Language Issues • Do you want us to do “everything” • Will you agree to discontinue care • It’s time we talk about pulling back • I think we should stop aggressive/heroic therapy • There is nothing more we can do • Despite trying these treatments for several days and around the clock, expert care, he is unfortunately too sick to respond • We will change goals of care to respect her wishes • We will intensify care; his comfort and dignity are our highest priorities • Let’s discontinue treatments that are not providing benefit

38. Listen through the Patient/Family Ears • He’s “stable” (patient is on pressors, vent, dialysis, no changes) • She gained weight (septic, third spacing) • Do you want us to do CPR? • Do you want us to “trach him” • He is getting better • She gained weight from good nutrition • She has a chance of surviving if we do CPR • He has a chance of coming off the vent and going home

39. Curative Care and Palliative Care Can Co-Exist Suggested Model of Palliative Care Services – from World Health Organization BereavementServices Treatment directed primarily toward cure Treatment directed primarily toward comfort Diagnosis Death

40. Characteristics of Curative and Palliative Care Models Curative Model • The primary goal is cure • The object of analysis in the disease process • Symptoms are treated primarily as clues to diagnosis • Primary value is placed on measurable data, e.g. lab tests Palliative Model • The primary model is relief of suffering • The object of analysis is the patient and the family • Distressing symptoms are treated as entities in themselves • Both measurable and subjective data are valued

41. Characteristics…Cont. Curative • Tends to devalue information that is subjective, immeasurable or unverifiable • Therapy is medically indicated if it eradicates or slows the progression of disease • The patient’s body is differentiated from the mind Palliative • Values the patient’s experience of an illness • Therapy is medically indicated if it controls symptoms and relieves suffering • The patient is viewed as a complex being consisting of physical, emotional, social, and spiritual dimensions

42. Characteristics…Cont. Palliative • Treatment is congruent with the values, beliefs, and concerns of the patient and family • Enabling a patient to live fully and comfortably until he or she dies is a success Curative • Patients are viewed as collections of parts, so there is little need to get to know the whole person • Death is the ultimate failure

43. Wanzer S, et al., N Engl J Med, 1989 • “As sickness progresses towards death, measures to minimize suffering should be intensified. Dying patients require palliative care of an intensity that rivals even that of curative efforts . . . Even though aggressive curative techniques are no longer indicated, professionals and families are still called on to use intensive measures – extreme responsibility, extraordinary sensitivity, and heroic compassion.”

44. Acknowledgements • David E. Weissman, MD – National Residency End-of-Life Curriculum Project, funded by The Robert Wood Johnson Foundation • EPEC – Education for Physicians on End-of-life Care, supported by grant from The Robert Wood Johnson Foundation

45. References • Storey, P. & Knight, C.; Unipac One: The Hospice/Palliative Medicine Approach to End of Life Care, 2003 • EPEC Curriculum – Educating Physicians on End-of-Life Care; AMA & Northwestern University, 1999 • Levetown, Marcia; Difficult Communication and Ethical Issues in the Care of Children with Life-threatening Conditions; Pediatric Palliative Care Conference, 2004

46. References 4) Buckman R. How to break bad news: A guide for health care professionals. Johns Hopkins University Press, 1992. 5) Creagan ET. How to break bad news – and not devastate the patient. Mayo Clin Proc 1994:69; 1015-7. 6) Fallowfield L. Giving sad and bad news. Lancet, 341:476, 1993. 7) Iverson VK. Pocket protocols – Notifying survivors about sudden, unexpected deaths. Galen Press, Inc., Tuscon, Arizona, 1999

47. Your Cases • Questions and Answers • Evaluation

48. My Contact Info Christian Davis Furman, MD, MSPH, AGSF Institute for Sustainable Health & Optimal Aging 300 E. Market St., Suite 200 Louisville, KY 40202 502-852-5629 christian.furman@louisville.edu louisville.edu/aging