What Does All this Mean from the Patient Perspective?

1. What Does All this Mean from the Patient Perspective? For patients, palliative care is a key to: • relieve symptom distress • navigate a complex and confusing medical system • understand the plan of care • help coordinate and control care options • allow simultaneous palliation of suffering along with continued disease modifying and rehabilitative treatments (no requirement to give up curative care) • provide practical and emotional support for exhausted family caregivers

2. The Clinician Perspective For clinicians, palliative care is a key tool to: • Save time by helping to handle repeated, intensive patient-family communications, coordination of care across settings, comprehensive discharge planning • Bedside management of pain and distress of highly symptomatic and complex cases, 24/7, thus supporting the treatment plan of the primary physician • Promote patient and family satisfaction with the clinician’s quality of care

3. The Hospital Perspective For hospitals, palliative care is a key tool to: • effectively treat the growing number of people with complex advanced illness • provide service excellence, patient-centered care • increase patient and family satisfaction • improve staff satisfaction and retention • meet JCAHO quality standards • rationalize the use of hospital resources • increase capacity, reduce costs

4. Summary: Making the Case • Universal human experience and universal health professional obligation. • Palliative care improves quality of care for our sickest and most vulnerable patients and families. • Palliative care is an integral part of geriatric medicine, contributes to goals of both functional recovery and best possible quality of life

5. How Do You Use this Information to Integrate Palliative and Geriatric Medicine? The next 2 presentations will help you: • Tailor the case made here to your practice setting • Create compelling business marketing plans • Design and launch a program • Measure your success

6. Although the world is full of suffering, it is also full of the overcoming of it. Helen Keller Optimism 1903

7. Appendix

8. More and more physicians are providing palliative care • Number of hospital-based palliative care programs has doubled in recent years to more than 950 • One in five hospitals now offers palliative care • US News & World Report includes palliative care in its criteria for “America’s Best Hospitals” • ABHPM certifying more and more physicians • Referral rates at established programs are growing each year Billings JA et al J Pall Med. 2001, AHA Survey 2002, Pan CX et al J Pall Med. 2001

9. But… • Number of palliative care programs, specialists not sufficient to meet patient need • In absence of comprehensive palliative care programs and PC specialists, physicians need basic PC clinical skills

10. Palliative Care Operational Resources Go to www.capc.org • Palliative Care Leadership Centers: six premier palliative care programs hosting site visits and providing ongoing mentoring • Web site: Comprehensive tools for starting and sustaining palliative care services: billing for palliative care services, clinical models, criteria for referral, clinical forms and procedures, technical assistance publications and presentations • CAPC seminars on building palliative care programs

11. CAPC Products • Management and Training Seminars- next in Miami, March 2005 • www.capc.org • Palliative Care Leadership Centers • Publications: • A Guide to Establishing a Hospital-Based Palliative Care Program • Hospice-Hospital Partnerships • The Case for Hospital Based Palliative Care

12. Palliative Care Leadership Centers • Six exemplary programs for 2.5 d. site visits, hands-on learning, +1 yr. distance mentoring. Only available til Spring 2006 and filling up fast! Consistent curriculum, different hospital settings, and locations. • “The site visit program made all the difference. Because of what our staff learned, our palliative care program has more patients, a larger budget, and much more legitimacy throughout the hospital. It really helped to have a leader in the field behind our efforts.” Erin Rhatigan, RN, HPNC/ Community Hospital of the Monterey Peninsula

13. Palliative Care Leadership Centers • Fairview Health System- Minneapolis • Mt. Carmel Health System- Columbus, OH • Medical College Wisconsin- Milwaukee • Palliative Care Center of the Bluegrass- Lexington, KY • UCSF- San Francisco • Virginia Commonwealth University- Richmond

14. CAPC Resources: Palliative Care Program Nuts and Bolts • Leadership • Strengths and weaknesses of clinical models • How to choose • Resources: www.capc.org

15. Physician Nurse Social Work, Care Management Chaplain Pharmacist Critical care Hospitalist Ethics Oncology Geriatrics Nursing Department Rank and authority in institution Opinion leadership Respect of others Competence Leadership

16. Outline • Leadership of models • Strengths and weaknesses of clinical models • How to choose

18. Outline • Leadership of models • Strengths and weaknesses • How to choose

19. How to choose (where to start) • What is needed? • What is possible? • Who wants to do this? • Who has the skills to do it? • Who can make the commitment to do this? • Who is most likely to be able to make the case and gain support? • What is easy? • Where and with whom does support lie?

20. Bed Availability Beds are not available All beds occupied Patients ‘can’t get in’ Beds are available Closed units Consult Service easier Inpatient Unit Possible

21. Hospital Size Small Hospital Large Hospital Consult Service easier Inpatient Unit Possible

22. Physicians Private Practice Staff Model-HMO, capitated care Consultation Etiquette ‘Open’ inpatient unit Primary Care‘Closed’ inpatient unit

23. Local Culture Private Practice Traditional Collaborative Patterns Physician-led Nurse-Led

24. Hospice Present Absent Collaborate Home visits

25. Health Care Funding Fee-for-Service Global Budget Justify Services Based on Revenues, Cost avoidance Justify Services Based on Utilization, Cost avoidance

26. How models chosen • Administrator interest • Clinician interest • Loci of support • Community pressure • Serendipity (loss) • Opportunity

27. Summary: Assessing Needs and Choosing a Model • Many variables influence program development • Several leadership models • Several models • Strengths and weaknesses • Select the structure that is best for you • No one right way

28. Where can you learn more palliative medicine content?

29. Domains of Palliative Care • Communication, help with medical decision-making • Expert symptom assessment and treatment • Psychosocial and practical support, care coordination, and bereavement services

30. Communication • Essential to practice of palliative medicine: decreases anxiety, improves well-being, satisfaction with providers and health care, and outcomes • Good communication: honesty, willingness to talk about dying, sensitive delivery of bad news, listening, and encouraging questions. • MD role: Articulating choices, likely benefits and burdens, and helping patient/family to make medically appropriate decisions in keeping with their goals.

31. How to Communicate • Establish realistic, attainable goals of care • Help patients and families understand scope of illness and likely progression • Identify relevant values and goals • Define “acceptable” and “unacceptable” quality of life • Define choices to be made and their benefits and burdens • Help with decision-making • Develop care plans that maximize chances that goals will be achieved

32. Communication Protocol Establishing Goals of Medical Care Communicating Bad News Withholding/Withdrawing Treatment Get started and create the right setting: Plan what to say, create a conducive setting, allow adequate time, and determine who else should be present Establish what the patient knows: Clarify the situation and context in which the discussionabout goals is occurring Establish what the patient knows: What is known, access ability to comprehend, reschedule if unprepared Establish and review the goals of care Explore both what patients are expecting and hoping to accomplish: Help identify realistic and non realistic goals Establish how much the patient wants to know? Recognize and support different preferences. People handle information differently Establish the context of the current discussion: What has changed to precipitate the discussion? Suggest realistic goals: Explore how goals can be achieved and work through unreasonable/nonrealistic expectations Share the Information: Say it then stop (avoid jargon, pause frequently, check for understanding, use silence), don’t minimize the information Discuss specific treatment(s) in context of goals of care: Will continuation or initiation of the treatment meet the goals of care?

33. Protocol, continued Discuss alternatives to the proposed treatment and what will happen if the patient decides not to have the treatment Respond empathetically to feelings: Be prepared for strong emotions and allow time for response, listen, encourage description of feelings. Allow silence Make a plan and follow through: What treatments will be undertaken to meet goals. What treatments will not be utilized. Establish a concrete plan for follow-up Review and revise periodically as needed Planning/Follow up: Plan for next steps, discuss potential sources of support, give contact information, assess patient safety andsupports,repeat news at future visits Document, disseminate (i.e., to family, other healthcare team members), and implement plan for withdrawal of treatment

34. Symptom Assessment and Treatment 3 items necessary for good pain and symptom management: • Routine and repeated assessment • Skill in prescribing • Treatment of side effects

35. Symptom Assessment and Treatment • Pain management • Pain meds administered on standing or regular basis • PRN or rescue doses available for breakthrough pain or pain not controlled by regimen • All patients on opioids should be started on a bowel regimen • WHO analgesic ladder should be used as a guide for most pain syndromes

36. WHO Analgesic Ladder • Mild Pain (1-3/10 on a 10 point scale): Begin acetaminophen or a non-steroidal antiinflammatory agent (consider opioids instead in older adults) Moderate Pain (4-7/10): Begin an opioid combination product (acetaminophen + codeine, acetaminophen + oxycodone, acetaminophen + hydrocodone) and dose based upon opioid half life (3-4 hours) not acetaminophen half life (6-8 hours). Severe Pain (8-10/10): Begin a strong standing opioid (hydromorphone, morphine sulfate, oxycodone) and titrate until pain relief is obtained or intolerable side effects develop. Long acting opioids (sustained release morphine/oxycodone, transdermal fentanyl) should be started after pain is well controlled and steady state is achieved.

37. Symptom Assessment and Treatment: Pain • Rescue doses employing immediate release opioids, dose should be 10% of the 24 hour total opioid dose and given every hour (oral) and every 15 - 30 minutes (parenteral) as needed. Methadone should only be used by clinicians experienced in its use. • Adjuvant agents (corticosteroids, anticonvulsants, tricyclic antidepressants, bisphosphonates) should be employed for specific pain syndromes when applicable (e.g., neuropathic pain).

38. 50% of pain management = side effect management • Constipation • Nausea • Confusion, sedation

39. Constipation • Does not resolve! • Morbidity: obstruction, nausea, delirium, perforation, death • Prevention; monitoring; check for and treat impaction • Rx: softeners, polyethylene glycol powder Miralax, senna, bisacodyl tabs or suppositories, sorbitol, mg citrate, enemas

40. Nausea • CTZ- area postrema of medulla; vestibular; delayed gastric emptying • Tolerance develops: Usually resolves after 3 – 5 days • If persistent nausea – evaluate for other causes • Metoclopramide, haloperidol, diphenhydramine (DA, 5HT, histamine)

41. Sedation • Side effect versus need to catch up on sleep after pain resolves • Tolerance develops rapidly (hours) • Sedation always predates respiratory depression • If RR < 8 and patient unarousable, use 10:1 dilution of naloxone, tirate to arousal, and monitor closely • Naloxone half life = minutes • Persistent sedation usually multifactorial • Rx- identify and treat underlying contributors, opiate dose adjustment, opiate rotation, antipsychotics, psychostimulants,

42. Pain Weakness Fatigue Anorexia/cachexia Constipation Dyspnea Nausea Constipation Anxiety Depression Delirium Sleep Energy Hopes and fears Biggest concern Tools at www.promotingexcellence.org If you don’t ask you won’t know.Routine assessment is prerequisite to good symptom management.

43. Practical Support and Care Coordination:Mobilizing Community Resources • 95% of the illness and the care occurs at home • Families provide >70% of long term care • Most patient/family needs cannot be met in physician offices and hospitals • Physicians can help by coordinating array of community services for patients and families – Home safety and needs evaluation, PACE, visiting RN/home care services, case management, hospice, financial planning resources, Medicaid eligibility, family support groups.

44. Other Resources Communication and decision-making Pain and symptom management Care coordination, commmunity resources for patients and families

45. Communication 1. Buckman R. How to Break Bad News: A Guide for Health Care Professionals. Baltimore: Johns Hopkins University Press, 1992 - The definitive guide for communicating bad news. 2. Meier DE, Back AL, Morrison RS. The inner life of physicians and care of the seriously ill. JAMA 2001; 286:3007-14. - Practical approaches to self care for physicians caring for seriously ill patients 3. EPEC - A continuing medical education program providing detailed protocols for major communication topics (www.epec.net) 4. The Center for Palliative Care of Harvard University Medical School - Continuing medical education programs in communication skills for practicing clinicians (http://www.hms.harvard.edu/cdi/pallcare/)

46. Symptom Assessment and Treatment 1. Doyle D, Hanks G, MacDonald N. Oxford Textbook of Palliative Medicine: Second Edition. Oxford: Oxford University Press, 1998. Comprehensive textbook of palliative care. 2. Morrison RS, Meier DE. Geriatric Palliative Care. New York: Oxford University Press, 2003. Comprehensive textbook of palliative care focused specifically on older adults. 3.Education for Physicians in End of Life Care www.epec.net- A continuing medical education program providing practical advice for managing pain and other symptoms • Fast Facts and Concepts on End of Life Care- Concise evidence based summaries on treatment of common symptoms www.mcw.edu/pallmed/html/about1.html • palliativedrugs.comgrowthhouse.org stoppain.org

47. Psycho‑Social Support and Care Coordination • Elderweb- A comprehensive listing of services for older adults including resources for personal care needs, care coordination, and home care www.elderweb.com • EPEC - Contains modules on psycho-social support and grief and bereavement www.epec.net • National Agency for Home Care and Hospice www.nahch.org and National Hospice and Palliative Care Organization www.nhpco.org - Trade organizations whose web sites provide comprehensive lists of member home care agencies and hospices searchable by city and zip code. • Growthhouse - Grief and Bereavement Resources www.growthhouse.org • Bereavement and Hospice Support Netline –An online directory of bereavement and hospice bereavement programs in the U.S www.ubalt.edu/www/bereavement • Centers for Medicare and Medicaid Services (CMS) - Information about Medicare coverage and Medicaid eligibility. Information about PACE programs (including their location) and Medicare Choice Programs (which may include case management) can also be obtained at www.cms.gov.

48. Education is Not Optional Training opportunities • ELNEC www.aacn.nche.edu/elnec • EPEC www.epec.net • DELeTCC www.deletcc.coh.org • EPERC www.eperc.mcw.edu • AAHPM www.aahpm.org • Harvard www.hms.harvard.edu/cdi/pallcare/ • Fellowship training www.aahpm.org • ANP palliative care training programs, ANCC certification www.hpna.org www.nursingworld.org • MD Certification: ABHPM www.abhpm.org

49. “I don’t know enough about palliative care.” • Get training (EPEC, ELNEC, DELeTCC, AAHPM-HPNA, Harvard advanced courses) • Subscribe to the J of Palliative Medicine. Get the Oxford Textbook of Palliative Medicine • Do a site visiting program (Palliative Care Leadership Centers, Cleveland Clinic, Beth Israel Med Ctr in NYC, San Diego Hospice, others) • Take a year off and do a fellowship or an APN degree program

50. www.epec.net -MD www.aacn.nche.edu/elnec -RN www.deletcc.coh.org www.EPERC.mcw.edu APN www.hpna.org Fellowships www.aahpm.org Site visiting programs Read Harvard course Go to the AAHPM annual meeting Use the web www.palliativedrugs.com www.growthhouse.org www.stoppain.org Learn by doing “Our hospital doesn’t have expertise in palliative care.”