The Time is Now: Palliative Care & Hospice

1. The Time is Now: Palliative Care & Hospice Eric Bush MD, RPh, MBA Medical Director, Pain & Supportive Care Service Frederick Memorial Hospital Medical Director, Hospice of Frederick County Chairman, Ethics Committee, Frederick Memorial Hospital

2. Disclosure • No financial interests, relationships to disclose.

3. Objectives Define Palliative Care Define Hospice Care Know criteria for appropriate Palliative Care Referral Know criteria for appropriate Hospice Care Referral Understand how to “break bad news” Know SPIKES as method to break bad news Understand physician role in goals of care

5. It’s Amazing What We Do & Don’t Prioritize

6. Physicians overestimatelife expectancy by what percent? a) 10 b) 50 c) 70 d) 90 e) Google

7. 2010 US Cause of Death

8. What People Want: • To die at home • To be free from pain • To be in the company of loved ones • To retain control of the care we receive

9. The Contrast of Reality • Less than 25 percent of Americans die at home, although more than 70 percent say that is their wish • Dying is often unnecessarily painful and isolating • Only 20 to 30 percent of the population has completed an advance directive

10. Reasons for this Stark Reality Doctors aren’t aware of their patients’ wishes. A major 2007 study found that only 25% of physicians knew that their patients had advance directives on file. The end of life is often treated only as a medical moment

11. Frederick County Hospice utilization by FIHN ACO patients is half that of other ACOs FMH Hospice utilization is one-third the Medicare FFS national average Average Length of Stay for patients in Hospice of Frederick County is 35 days compared to national average of 67 days

12. The Local Stark Reality • “What we have here is a failure to communicate….”-all apologies to Cool Hand Luke • Culture that profoundly underutilizes Hospice services • Pt/family often experience Hospice late if at all and do not derive maximal benefit from Hospice care

14. Differentiation • Hospice Care -if the disease follows the expected course, the prognosis is six months or less (patients often referred late, NEJM NSCLC study) • Supportive(Palliative) Care -symptom focused care throughout the disease spectrum/life span, can be delivered in conjunction with curative care

15. Palliative/Supportive Care Spectrum Studies have shown that incorporating palliative care with conventional medical treatment prolongs survival. Patients and their families both can benefit from an improved sense of well-being.

16. Who could benefit from Pain and Supportive Care Services? • Anyone with advanced or chronic illness experiencing symptoms due to the illness itself or secondary symptoms caused as a result of treatments for the disease. • This may include the following: • Cancer • Infectious disease • Kidney/liver disease • Heart disease • Lung disease • Neurological disease • Advanced dementia • Chronic pain

17. Criteria for Palliative Care Referrals • No automatic referrals • All referrals require physician consult • Increased cultural awareness throughout the system • Ongoing efforts for system wide trigger with respect to CHF patients and Stage 4 non-small cell lung cancer patients (only 28% eligible patients referred during 2014) • Collaboration is key(pertinent specialist involvement early in hospital course)

18. High Quality Palliative & Hospice Care-2015 Citation of Honor & TJC Certification

19. Basic Concepts of Hospice & Supportive (Palliative Care)

20. Supportive CarePalliative Care • Care given to improve the quality of life of patients who have a serious, chronic or life-threatening disease. • The goal of palliative care is to prevent or treat as early as possible the symptoms of a disease, side effects caused by treatment of a disease, and psychological, social, and spiritual problems related to a disease or its treatment. • In short, symptom management, regardless of where the patient is in the disease process utilizing a biopsychosocial approach

21. Pain Mechanisms Total Pain Suffering Nature of Pain/Quality of Life Neuropathic Pheripheral, central Nociceptive Somatic, Visceral, Myofascial Psychological Influences Psychological State and Traits Spirituality Total Pain Social/Family Functioning Loss of Work Fear of Death Physical Disability Financial Concerns

23. Family/patient assessment • Underlying philosophy of shared decision-making and respecting autonomy • Beneficence, autonomy • Advanced directives, living will

24. Diagnoses for Palliative Care Referral • CHF-Stage D-NYHA 4 • COPD/Pulmonary Diseases-End Stage • Neuro-stroke, ALS, MS, dementia (FAST >7A) • Oncology-Stage 4 Disease

25. Dementia • Hospice criteria • ADEPT criteria (JAMA 2010) • Goals of care, do not hospitalize orders for Nursing Home and Long Term Care Facility Patients

27. Diseases & corresponding poor prognostic indicators

28. (a) Survival post-admission to an inpatientpalliative unit, all diagnoses (Virik 2002).(b) Days until inpatient death following admission to an acute hospice unit, diagnoses not specified (Anderson 1996).(c) Survival post admission to an inpatient palliative unit, cancer patients only (Morita 1999).

30. Case 1 • 51 year old Female with Stage 4 NSCLC • Supportive son • Chemo/Radiation • Convinced that Hospice=death • Lived approximately several days after completion of palliative Chemo/Radiation • Time from diagnosis to death approx. 18 mo

31. Case 2 • 50 yo Female with Stage 4 NSCLC • Supportive spouse, former military PTSD • Chemo/RT, brain mets, targeted tx • Multimodal supportive care • Good quality of life including trips to Florida with family • Time from diagnosis to death approx 30 mo

32. Case 3 • 67 yo Male with NY Heart Association Class 4 Heart Failure, Amyloidosis, multiple hospitalization • Poor PPS(30),seen initially for Supportive Care, did not want to return to hospital • PT/OT targeted pharmacologic interventions • Several months good quality of life • Transition to home hospice and died at home surrounded by family

33. Now that we know who can benefit from Palliative Care and Hospice, how do we have the conversation?

34. A profound thought….. “The bad news about breaking bad news is that bad news is bad news.”

35. Definition • Bad news is any news that seriously and adversely affects the patient’s view of his or her future.

36. Separate MESSAGE from MESSENGER • Even though the message is bad, the messenger can be seen as part of the support system. • Attitude is extremely important.

37. Myth- breaking bad news is an innate skill • Physicians who are good at discussing bad news with their patients usually report that breaking bad news is a skill that they have worked hard to learn. • Furthermore, studies of physician education demonstrate that communication skills can be learned, and have effects that persist long after the training is finished.

38. SPIKES method S Getting the SETTING right P What the patient PERCEIVES I An INVITATION to share the news K Giving the KNOWLEDGE E EMPATHISING & EXPLORING the patient’s emotions and S STRATEGY and SUMMARY

39. S = SETTING • Privacy • family members • Eye contact • Body language and positioning • Psychotherapy neutral position

40. Getting Started • The physical setting ought to be private, with both physician and patient comfortably seated. • You should ask the patient who else ought to be present, and let the patient decide • It is helpful to start with a question like, "How are you feeling right now?"

41. Starting off BEFORE YOU TELL, ASK

42. P-Perception • Different ways of asking • Assess vocabulary and comprehension • Note denial • Listening Skills: -silence -repetition -“listening mode” -touch (as appropriate) -avoid office interruptions

43. Find out patient perception • Ask a question such as, "What have you already been told about your illness?" • Begin to understand what the patient has already been told ("I have lung cancer, and I need surgery") • How much does the patient understand about what's been said ("the doctor said something about a spot on my chest x-ray") • Patient level of technical sophistication ("I've got a T2N0 adenocarcinoma") • Patient emotional state ("I've been so worried I might have cancer that I haven't slept for a week").

44. I-INVITATION by the Patient to Share the Information • Different ways of asking • Level of information to provide • Aim to get a clear invitation-often indicated by patient query such as “what else should I know?”

45. K- Giving the KNOWLEDGE and Medical Facts • Aligning starting at a point compatible with the patient’s current comprehension and terminology • Small chunks of information, check reception • Avoid “medspeak” • Adjust pace according to patient’s response

46. Sharing the information • Decide on the agenda before you sit down with the patient, so that you have the relevant information at hand. • The topics to consider in planning an agenda are: diagnosis, treatment, prognosis, and support or coping. However, an appropriate agenda will usually focus on one or two topics.

47. Info sharing pointers Give the information in small pieces, stop between each section to ask the patient if he or she understands ("I'm going to stop for a minute to see if you have questions"). Long lectures are overwhelming and confusing. Remember to translate medical terms into English, and don't try to teach pathophysiology, avoid “medicalese”.

48. E-Acknowledging EMOTIONS • The “Empathic Response” • Identify the emotion (theirs or yours) • Identify the source of the emotion • Respond in a way that shows you have made that connection • You don’t have to agree with the viewpoint • Avoid downplaying severity of situation • You don’t have to feel the emotion yourself

49. Responding to patient feelings • If you don't understand the patient's reaction, you will leave a lot of unfinished business, and you will miss an opportunity to be a caring physician. • Learning to identify and acknowledge a patient's reaction is something that definitely improves with experience.

50. S - STRATEGY & SUMMARY • Develop plan collaboratively • Summarize main areas • Any questions for now? • Clear plan for next steps