What is Palliative Care?

1. What is Palliative Care? J. Keith Mansel, M.D.

2. Relevant Financial Relationships • None

3. Objectives • Describe the role of palliative care in patients with serious illness • Understand the use of communication tools in physician-patient interactions • Discuss assessment and management of actively dying patients

4. UMMC Palliative and Supportive Care “We are a specialized team that is patient centered and relationship based who care for persons with advanced, serious illness. Our goals are to help them make wise choices, focus on what is most important to them, and provide relief from suffering.” UMMC Care and Communication Team Patient Centered and Relationship Based

6. “Where is the knowledge we have lost in the information, And, where is the wisdom we have lost in the knowledge?” T. S. Eliot

7. Case One You are asked to see a 64 y/o man with recently diagnosed small cell carcinoma of the lung. He is experiencing pain and dyspnea and will begin radiation therapy followed by chemotherapy in the next few days. He has limited disease and his oncologist is optimistic about a positive response. You begin opioids for symptom management and schedule another visit in one month.

8. Pain is inevitable……Suffering is optional Anonymous

9. Palliative Care • Palliare- “to cloak, deceive, or cover” • Palliate- “to lessen or mitigate without curing” • Palliative Care- term first coined in 1974 by Dr. Balfour Mount

10. Palliative Care • Provides relief from pain and other symptoms • Affirms life and regards dying as a normal process • Intends neither to hasten death nor postpone death • Integrates the psychological and spiritual aspects of patient care

11. Palliative Care • Offers a support system to families, including bereavement • Uses a team approach • Enhances quality of life and at times may positively influence the course of a disease • Is applicable early in the course of an illness and in conjunction with other life prolonging therapies • Hospice is one facet of palliative care

12. Integrating Palliative Care into Chronic Life-Limiting Disease Management “best care possible” 100 Bereavement % clinical efforts 0 Terminal phase Death Time

13. Palliative Care & Hospice Palliative Care Hospice Comfort Care

14. Hospice • Support and care for patients and families in the last phase of an incurable illness • Attempt for patients to live as fully and comfortably as possibly • Focus on quality of life and symptom management • Continue to care for the patient, with a shift in focus

15. Hospice • Medicare benefit, enacted 1983 • Hospice is paid a per diem • Pays for nursing care, meds, DME • No routine office visits • Hospice is a conversation and a philosophy • Hospice is a disposition only after the conversation

16. Hospice • Interdisciplinary approach-nurse driven • 24 hour on call RN • Supplies, equipment, most medications are paid for • Hospice takes over medical care • Respite care • Do not have to be DNR

17. Hospice • Most care provided in home • May be provided in NH or residential hospice • Two physicians must certify that survival is anticipated if the disease trajectory continues it’s expected course • Patients may stay in hospice more than six months

18. Hospice GIP • Care in an inpatient setting for pain or other symptom management • Cannot be managed in other settings • Intended to be a short term intervention • Hospice makes determination of eligibility • It is not an “automatic” level of care for imminently dying patients • Examples are pain crisis on IV meds and delirium with behavioral issue • Cap on these for each hospice

19. Early Integration of Palliative Care in Patients with Serious Illness • Palliative Care is not just for patients at the end of life • The goal of palliative care is to improve quality of life throughout the trajectory of a serious illness • Focus is on symptom management, advance care planning, psychosocial support, and relief of suffering

20. Early Integration of Palliative Care…. • A recent study in patients with advanced lung cancer and early palliative care revealed improvement in quality of life and survival • Palliative Care can be provided with concurrent target-directed therapy • American Society of Clinical Oncology recommends palliative care be integrated early in cancer patients

21. Early Integration of Palliative Care • Generally focus on symptom management initially • Patients want to have relief of symptoms and know you care- this helps build trust • Advance Care Planning (ACP) can come later • ACP is a conversation about the right medical treatment for your patient

22. Early Integration of Palliative Care….ACP • Improves patient compliance • Reduces hospitalizations at the end of life • Leads to greater patient satisfaction • Is longitudinal, iterative, incremental, and almost always changes over time • Slow is sometimes best-patients can only assimilate so much information

23. Take Home Message Palliative Care is appropriate for patients with serious illness at any stage of their disease process

24. Case Two A 72 y/o woman is admitted to the CVICU after sudden cardiac arrest. She has severe anoxic brain injury with status myoclonus and minimal brain stem reflexes present. Palliative Care is consulted for goals of care. Family doesn’t “get it” and insists on “doing everything”.

25. Goals of Care • A common reason for Palliative Care consultation • Often elderly patients with multiple medical problems and large symptom burden • Not just at end of life

26. Goals of Care….. • Complex interaction requiring an intricate knowledge of the clinical realities as well as prognosis • Necessitates understanding your patient’s values, preferences, and priorities • Skill at responding to emotion, breaking bad news, and using a shared decision making model

27. Goals of Care-How to Conduct the Discussion • Through compassionate listening, establish a bond by making a non-medical connection • Have your patient share their narrative-this can be both diagnostic and healing • Understand their perception of their medical condition (Ask-Tell-Ask) • Ask about the “Big Picture” • Give small pieces of information and check in

28. Goals of Care Guide • If your health worsens, what are your most important goals? • What are your biggest fears and worries about the future of your health? • What abilities are so critical to your life that you can’t imagine living without them? • If you become more ill, how much are you willing to go through for the possibility of gaining more time?

29. “Between the emotion and the response, Falls the shadow” T. S. Eliot

30. Relationships- PEARLS • Partnership- “We are going to work on this together”, “I will be here for you” • Empathy- “You appear sad”, “I wish things were different”, “I imagine this is very hard”, “Tell me more” ….silence….head nodding….emotive vs. cognitive….never respond to an emotion with a fact…..state the obvious…..

31. Communication…PEARLS • Acknowledge/Apologize- “You have done a wonderful job caring for your mother”, “ I am sorry I am running late and made you wait” • Respect- “We may disagree, but I respect what you are telling me”, “I can’t tell you how great it is to see you doing some exercise, that’s really important”

32. Communication PEARLS… • Legitimize- “Anyone in your situation would be tearful”, “It is normal to have the frustrations you are experiencing now” • Support- “ I am going to call your doctor so she knows we are all working together on this”, “Here is my contact information. I am here to work with you.”

33. Communication…Helpful Phrases • “Before we talk about your medical issues, tell me a little about yourself” • “How do you understand the big picture of your health right now?” • “What are your expectations of the time we have together today?” • “What else?” • “Is there anything we haven’t talked about that I should know to help care for you?”

34. Communication….Helpful Phrases • “I think I am beginning to understand what is bothering you” • “Go on” • “Uh huh” with head nodding • “So what I heard is…” • “Let me be sure I got this right” • “I share your sorrow. I consider your father a good friend.” • “Just so we are on the same page…”

35. Case continued… • 72 y/o woman with anoxic brain injury • What did I do?

36. Take Home Message • Goals of Care conversation requires knowing your patient, listening to their story, and understanding their values and preferences • Showing empathy and responding to emotion are essential features of communication • Using a shared decision making model, making a recommendation when appropriate is beneficial

37. Case Three A 28 y/o man is admitted with pain, dyspnea, nausea, and altered mental status. He was diagnosed 3 years ago with melanoma and now has widely metastatic disease including brain mets. No further disease specific therapy is warranted. He has spent most of the past 6 weeks in bed and for the past 5 days has experienced the aforementioned symptoms. His family can no longer care for him at home. You are consulted for symptom management.

38. Care at the End of Life • Being present at the bedside of a dying patient is one of the most meaningful acts a physician can perform • Sit on the bed, touch your patient, express kindness both verbally and non-verbally • Listen to what is said….and not said • Talk about the end of life, dying, and what they can expect

39. End of Life…What Patients Want • Be as comfortable as possible • Be free of pain, dyspnea, and anxiety • Be clean • Know what to expect • Have someone who will listen • Maintain dignity • Say goodbye • Deal with unreconciled issues

40. End of Life…What Patients Want • Trust their physicians and nurses • Physical touch • Share time with friends and family • Say “I love you” • Say “I am sorry” • Be sure their family is prepared • Little things matter

41. End of Life…Assessment and Management • Pain • Dyspnea • Nausea • Delirium • Secretions • Agitation • Anxiety/Depression • Existential Distress/Anticipatory Grief

42. End of Life…Assessment and Management • Grimacing • Tachypnea • Work of Breathing • Delirium • Death Rattle • Mottling • Pulses • Body temperature

43. End of Life Medications • Pain- opioids, steroids, ketamine • Dyspnea- opioids, benzodiazepines • Delirium- haloperidol • Nausea- haloperidol, steroids, ondansetron • Anxiety- Benzodiazepines • Secretions- scopolamine, glycopyrrolate • Cachexia, Fatigue- Steroids • Depression- Methylphenidate, SSRI, ?ketamine

44. Take Home Message • Patients and families have expectations we should meet and they deserve • Be present • Prepare the patient and family • Aggressively assess and manage symptoms

45. Objectives • Describe the role of palliative care in patients with serious illness • Understand the use of communication tools in patient-physician interactions • Discuss assessment and management of actively dying patients

47. Advance Directives • Legal documents that give direction to a patient’s care when they are unable to make their own decisions • Apply only when they have lost decision making capacity • Surrogate decision maker- durable healthcare power of attorney • Preferences for future care- living will

48. Objectives • Describe Palliative Care and how it differs from hospice • Identify goals of care and how they can help with shared decision making • Define some communication techniques to help with goals of care and breaking bad news

49. Objectives • Describe Palliative Care and how if differs from hospice • Identify goals of care and how they can help with shared decision making • Define some communication techniques to help with goals of care discussions and breaking bad news