1. E ARLY P ALLIATIVE C ARE I S P ROVING T O B E AN I NTEGRAL C OMPONENT OF P RACTICE Jennie GilBhrighde, DO Palliative and Hospice Medicine Hospice of Southern West Virginia September 25, 2011

2. T HE P AIN AND P ALLIATIVE C ARE S ERVICE IS

3. O BJECTIVES 1. Function of a Palliative Care Service. 2. Research outcomes in early supportive Palliative Care. 3.Appropriate patients for the palliative care service.

4. L ILLIAN W. 68 Y / O WITH CHF H X POORLY CONTROLLED DM BKA DUE TO CHRONIC ULCERS H OSPITALIZED X3 IN 6 MONTHS SOB AT R EST EF = <20% REFUSED PACEMAKER DEFIBRILLATOR FREQUENT PVC’ S CREATININE 3.08

5. S OCIAL I SSUES : Lives alone with home nursing visits 3 children - none who live nearby Recently widowed Daughter recently hospitalized with psych issues Pt tells you she is overwhelmed Pt appears more depressed and withdrawn

6. S PIRITUAL I SSUES : Pt has been unable to attend church. Pt states she feels abandoned by God. She says she feels alone and unable to cope with the struggle her life has become.

7. What do you do? Where do you begin? What can we do to help you?

8. WHO DEFINITION OF P ALLIATIVE C ARE An approach to and a philosophy of health care that specializes in the relief of pain, symptoms and stress of serious illness. Three cardinal principles: Foster communication with and between patients, families and health care providers Promote physical activities to maintain independence Practical support for emotional, psychosocial and spiritual well-being through a multidisciplinary team approach.

9. W HAT D OES T HIS L OOK L IKE I N P RACTICE ? When do you think about consulting the palliative care physician?

10. B RIEF H ISTORY 1967 – Dame Cicily Saunders started St. Christopher’s Hospice in London, for care of the dying. 1973 – first hospice-like inpatient unit at an academic teaching hospital at Royal Victoria Hospital in Montreal. 1980’s – creation of the Medicare Hospice Benefit 1980’s – first palliative care program at Cleveland Clinic. 2006 – Formal recognition as medical specialty 2008 - ACGME accreditation for fellowship training in palliative medicine.

11. The goal is to prevent and relieve suffering and to improve quality of life for people facing serious, complex illness. This is what you strive to do everyday. We can help you to work toward this goal!

12. P ALLIATIVE CARE : provides relief from pain and other distressing symptoms; affirms life and regards dying as a normal process; intends neither to hasten or postpone death; integrates the psychological and spiritual aspects of patient care; offers a support system to help patients live as actively as possible until death;

13. offers a support system to help the family cope during the patients illness and in their own bereavement; uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated; will enhance quality of life, and may also positively influence the course of illness; is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

14. W HAT S ORT OF P ATIENTS B ENEFIT F ROM E ARLY P ALLIATIVE C ARE I NVOLVEMENT ? Cancer Chronic, progressive pulmonary disorders Renal Disease Chronic heart failure HIV/AIDS Progressive neurological conditions Hepatic failure Any chronic, progressive conditions

15. W HAT OTHER TYPES OF PATIENTS BENEFIT ? Complex and chronic pain syndromes Peri-operative complex pain cases Pts with intractable nausea and vomiting Pts with emotional and spiritual suffering Pts with delirium Pts at end-of-life

16. H OSPICE AND E ND - OF - LIFE Pt must be considered “terminal” (prognosis is < 6 months based on natural course of disease) and willing to forgo curative treatment but also Medicare coverage for life-prolonging therapies, and Medicare’s clinical guidelines must be met for the specific disease Pts at End-of –life: includes the last days to weeks of life.

17. Death & Bereavement Modifying Therapy, Curative, restorative intent Life Closure Palliative Care Risk Disease Condition Integrated Palliative Care Along Entire Disease Trajectory Hospice (6 Months)

18. R EQUESTING A C ONSULT Attending identifies patient who would benefit from palliative services. Request is made for consult. Palliative care consultant talks with attending to determine needs of the attending for consult. Consultant interviews and examines patient to determine areas of need. Consultant talks with family and with team members to assess areas of need. Consultant helps by being present at, or leading, at discretion of attending, goals of care meetings or family meetings.

19. Consultant discusses recommendations with attending. Attending maintains role as primary physician in charge of patient’s care. Consultant can see patient one time and make recommendations, or follow the patient with attending, at attending’s discretion. You remain the team leader!

20. W HAT C AN P ATIENTS E XPECT A comprehensive history that includes all domains – physical, mental, spiritual, emotional, financial, including interpersonal relationships with family members. A team approach!

21. Core Team Comprehensive Assessment Coordinate Interventions Discharge Planning Recreational Therapy Relaxation Stress Management Pet, Music, & Art Therapy Rehabilitation Functional Interventions Assistive Devices Energy Conservation Social Work Socioeconomic Support Community Resources Coping Skills Counseling Grief Counseling Family Support, End-of-Life Issues Community Transition Complementary Acupuncture/ Acupressure Tai Chi Trigger Point Release SpiritualMinistry Pastoral Presence Prayer Hope & Peace Nutrition Satiety, Dysphagia Nausea Intake Modification, TPN/Tube Feedings Pharmacy Pharmacological Counseling Equianalgesia Adjuvant Agents Symptoms Co-morbidity Concomitant Disorder Spirituality Roles and Relationships Isolation Emotional State Grief Economic Burden Level of Function Psychological Predisposition Disease Process Treatment Regimen Suffering Individuals’ Quality of Life Clinical Trials Protocol IT TAKES A NURTURING INTERDISCIPLINARY TEAM TO PRACTICE THE NATURE OF PALLIATIVE CARE

22. A LONG WITH P HARMACOLOGIC I NTERVENTIONS C OMPLEMENTARY T HERAPIES A DD B ENEFIT AcupunctureMeditation AcupressureGuided imagery Animal Assisted therapyVibro-acustic chairs Art therapyTai Chi BiofeedbackYoga HypnosisTea parties LabyrinthTherapeutic point simulator Mandalas Massage Reiki TENs

23. E ARLY P ALLIATIVE C ARE FOR P ATIENTS WITH M ETASTATIC N ON -S MALL -C ELL L UNG C ANCER New England Journal of Medicine, 8/19/10. Examined the effect of introducing palliative care early after diagnosis on patient-reported outcomes and end of life care among ambulatory patients with newly diagnosed disease NSCLC.

24. 151 patients underwent randomization to receive either early palliative care integrated with standard oncologic care or standard oncologic care alone. Quality of life and mood were assessed at baseline and at 12 week intervals. Primary outcome was change in quality of life at 12 weeks. Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer

25. Scores on Functional Assessment of Cancer Therapy – Lung (FACT-L) with range from 0 to 136, higher scores indicate better quality of life, (98 vs. 91.5: P = 0.03) Fewer patients in the palliative group had depressive symptoms. (16% vs. 38%; P = 0.01). median survival was longer among patients receiving early palliative care. (11.6 months vs. 8.9 months, P=0.02). Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer

26. I MPORTANT POINTS FROM THE STUDY Palliative care is often only utilized late in the course of disease. Previous studies have suggested that late referrals to palliative care are inadequate to alter the quality and delivery of care provided to patients with cancer. To have a meaningful effect on patients’ quality of life and end of life care, palliative services must be provided earlier in the course of disease. Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer

27. In Heart failure therapy: beyond the guidelines, published in Journal of Cardiovascular Medicine, June 15, 2010 a review of palliative and self-care for the treatment of CHF are discussed. This review likens the burden of physical and psychological symptoms in pts with CHF to patients with advanced cancer.

28. Palliative care utilizes a multidisciplinary approach. Palliative care is no longer limited to end-of- life care. It is not dependent on prognosis, and can be delivered at the same time as the patient is pursuing all other appropriate treatments, including curative options. Palliative care specialists support the primary team. Decision making Communication Education Psychological and spiritual issues Symptom management

29. D ECISION -M AKING Heart failure care and prognosis Interventional therapies CPR, code status, transition to hospice POA, legal issues Heart failure therapy: beyond the guidelines

30. C OMMUNICATION Heart failure is a life-limiting disease. Associated with increased risk of sudden cardiac death. Discussions concerning prognosis should be initiated early in disease course. Frequent reassessment of goals is needed throughout the disease course. Preferences for afterlife care Heart failure therapy: beyond the guidelines

31. E DUCATION Understanding of disease, treatment and symptom control. Should be performed at the level of patient and family. Awareness of diagnosis and expected course, including possibility for sudden cardiac death. Heart failure therapy: beyond the guidelines

32. A DDRESSING PSYCHOLOGICAL AND SPIRITUAL ISSUES Mental health concerns Financial concerns Interpersonal relationships Spiritual support Transition to hospice care Heart failure therapy: beyond the guidelines

33. S YMPTOM MANAGEMENT Symptom control/Pain – opioids can be used safely, NSAIDS contraindicated. Quality of life Disease modifying interventions Sleep disordered breathing (seen in 1/3 to 2/3 pts) Dyspnea Anxiety/depression Limited exercise capacity Heart failure therapy: beyond the guidelines

34. C OST OF C ARE Call for multidisciplinary palliative care brings concern about cost effectiveness. Data suggest that this approach is financially feasible and suggests that it may in fact reduce costs. May prevent recurrent hospitalizations by helping patients and families manage the symptoms better. Heart failure therapy: beyond the guidelines

35. I NTEGRATING PALLIATIVE CARE IN SEVERE COPD COPD: Journal of Chronic Obstructive Pulmonary Disease, 5:207-220, 2008. By 2020 COPD will likely to account for over 6 million annual deaths worldwide, which will make it the 3rd leading cause of death. COPD is the seventh leading cause of disability.

36. Diagnosis is often delayed because patients may not perceive dyspnea until approx 40% of their lung function is lost. Current medical and surgical treatments, other than oxygen therapy, have not altered mortality and are limited to symptom treatment, illustrating the need for early attention to palliative care in the management of COPD. Integrating palliative care in severe COPD

37. Pts with severe COPD (GOLD Stages III and IV) are similar to cancer patients, and experience the same symptom burdens and decreased quality of life through physical, psychological, spiritual and social impairments. Integrating palliative care in severe COPD

38. COPD patients receive less palliative care in comparison to lung cancer patients. Pain is nearly as prevalent as in patients with lung cancer ( 21% vs. 28%), and is often undertreated due to the misperception that opioids and sedatives may hasten death. Less than 50% of COPD patients experience relief from dyspnea during their last 6 months of life. Integrating palliative care in severe COPD

39. Anxiety, depression and pain are interdependent, and exacerbated by each other. All three are present in up to 90% of COPD patients. Anxiety and depression contribute to decreased quality of life independent of COPD severity. Depression is linked to increased mortality, hospital readmission and longer length of stays. Integrating palliative care in severe COPD

40. Poor appetite and inadequate nutrition are secondary to depression, dyspnea and fatigue with the result of lost weight, including muscle mass. Muscle mass is important in maintaining exercise tolerance, which can maintain independence, maintain ability to perform ADL’s and contributes to overall quality of life. Integrating palliative care in severe COPD

41. Severe COPD results in multiple hospital admissions during the last year of life. Admission for acute exacerbation portends a 2 year survival of 49%. More patients with COPD as opposed to lung cancer receive mechanical ventilation (70% vs. 19.8%), tube feeding (38.7 vs. 18.5%) and CPR (25% vs. 7.8%). Less pts with COPD die at home (15.8%) as compared to pts with cancer (35%) and CHF (23%). Enrollment in hospice often happens late for patients with COPD. Integrating palliative care in severe COPD

42. RECOMMENDATIONS FROM PALLIATIVE CONSULT ORDERED FOR LILLIAN Supported treatment plan. Recommended low dose opioid to help manage dyspnea. Social worker spoke with patient and children, and a goals of care meeting was arranged. Hospital chaplain contacted pt’s minister who came in and arranged a visit from 2 members of her Sunday school class. Pt named son as POA, and decided to sign advance directives and DNR. Pt agreed to plan of discharge to local nursing home for rehab. Pt agreed to continue with counseling outpatient.

43. A G OOD PARTNERSHIP !!! Patient and family were grateful to you, their attending physician, for helping to manage the many complex issues as well as her symptoms and disease!

44. B RINGING IT ALL TOGETHER Supported by evidence based medicine Provides support, and interdisciplinary approach Family education. Manage symptoms and provide suggestions for interventional and/or complementary treatment. Assist with transition to hospice and end-of-life. Your Palliative Care Specialist is here for you!

45. “T HERE IS NO INCONSISTENCY BETWEEN THE ABILITY TO ACHIEVE GREAT DIAGNOSTIC AND THERAPEUTIC VICTORIES AND THE ABILITY TO PROVIDE COMFORT WHEN THOSE VICTORIES ARE BEYOND REACH.” Sherwin B. Nuland, M.D. TIME Magazine, 2000

46. Questions?

47. R EFERENCES Berger, A., Shuster, J. and Von Roenn, J. Principles and Practice of Palliative Care and Supportive Oncology, 3 rd ed. 2007. Thompson, et al. Heart therapy: beyond the guidelines. Journal of Cardiovascular Medicine, 06/15/10. Termel, et al. Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer. New England Journal of Medicine, 2010;363:733- 42. Hardin, K., Myeres F. and Louie, S. Integrating Palliative Care in Severe Chronic Obstructive Lung Disease. COPD: Journal of Chronic Obstructive Pulmonary Disease, 2008:5,207-220.