The document discusses current end-of-life care in the United States and potential solutions. It finds that primary care physicians may not be adequately involved in end-of-life issues due to lack of training and comfort discussing death. As a result, patients, families, and caregivers often experience suboptimal care, feelings of abandonment, poor communication, and high financial burdens. Potential solutions proposed include increased education, advanced care planning, greater hospice utilization, and healthcare models that facilitate primary care physician involvement in end-of-life care coordination and decision making.

1. Dying in America: Is Your Doctor Onboard? Robert Hoyt MD February 27 2010

2. Learning Objectives After the presentation, participants should be able to Describe current end-of-life (EOL) care in the United States Discuss the ramifications of current EOL care on patients, care givers and physicians Enumerate several potential solutions Slides and references available for download at www.slideshare.net. Search for same title

3. No shortage of media coverage Dying in America November 19 2002

4. Discussing End of Life Issues Is Acceptable But Controversial

5. From Reform to Death Panels

6. Basic Premise of this presentation For a multitude of reasons, primary care physicians may not be involved in end-of-life (EOL) issues or find the issues difficult to discuss with their patients The end result is a suboptimal experience by patients, families and caregivers

7. How are we doing with palliative care in US in 2009? (hospitals > 50 beds) Center to Advance Palliative Care www.capc.org

8. What do studies show about end of life (EOL) medical care in America today?

9. General End of Life Facts About 5% of Medicare recipients (+2.4 million) die each year; 40% occur in hospital Most die with 4 major illnesses, on average 38% spend some time in nursing home in the last year Deaths are equally divided between cancer and heart disease Fewer than 1/3 of Americans have advanced directives and about 1/2 with terminal illnesses have them; increases noted over past decade

10. Summary of EOL Issues Financial burden Feelings of abandonment Poor communication about EOL preferences Over treatment with ineffective therapies Unmet patient and caregiver needs Late referral to Hospice Caregiver stress Clinician issues

11. Financial Burdens Governmental 70% of death costs paid by Medicare Consistently over the past 20 years, the last year of life care consumed about 27% of Medicare spending (This does not include nursing home care) 78% of last year of life healthcare bill is spent in last month In 1997 annual per capita cost for a Medicare patient was $4,400 ($6,784 in 2002) ; $26,300 if they died

12. Financial Burden Family and Caregivers Family Medical Leave Act guarantees only unpaid leave, not money 20% of family caregivers have to quit work 31% lose much of life earnings Estimated caregiving price tag for strokes = $6 billion annually, while care for Alzheimers disease = $65 billion

13. Cost in the last 6 months of life by ethnic group Hanchate A et al. Arch Int Med 2009;169 (5):493-501

14. Health care costs in the last week of life Zhang et al Arch Int Med 2009; 169(5): 480-488 Advanced cancer patients who had EOL discussions with their physicians had: Lower health care costs Reduced CPR, ventilator use and ICU stays No difference in survival time Higher cost care was associated with lower quality of life (rated by patient or caregiver)

15. National Healthcare EOL CostsThe Dartmouth Atlas of Healthcare 2008. Tracking the care of patients with severe chronic illness

16. Abandonment is an issue USA Today 3/10/09

17. Abandonment at EOL: ThemesBack AL et al. Arch Int Med 2009;169(5):474-479 Before death loss of continuity issues: Patient: loses access to medical expertise and long standing patient-physician relationship Physician and nurses: hospice and stopping chemo feel like quitting on patient At death or after, there can be lack of closure Patient: no more outpatient or inpatient visits is viewed negatively. Simple phone call is powerful Physician: may view final visits as “social visits”. Don’t perceive lack of closure. May have feelings of guilt because more could not be done

18. Abandonment at EOL Back AL et al. Arch Int Med 2009;169(5):474-479

19. Communication Gaps

20. End of life discussions and quality of life/death Wright et al. JAMA 2008300(14):1665-73 37% of cancer patients in this study reported end-of-life discussions with physicians EOL discussions were associated with less aggressive medical care near death and earlier referrals to hospice Aggressive care was associated with worse patient quality of life and caregiver adjustment

21. Communication between Physicians and Family Caregivers… CherlinE et al. J Pall Med 2005;8 :1176-1185 Studied 218 caregivers in Hospice program 21% claimed they were not told illness was incurable 60% not given life expectancy estimate 40% Hospice not discussed Discussions commonly occurred in last month of life Caregivers admitted ambivalence about knowing the truth and accepting bad news Only 25% agreed with physician’s life expectancy estimate

22. Timing of communicationCherlinE et al. J Pall Med 2005;8 :1176-1185

23. Caregiver UnderstandingCherlinE et al. J Pall Med 2005;8 :1176-1185

24. Caregiver understandingCherlinE et al. J Pall Med 2005;8 :1176-1185

25. Family Perspectives on EOL Care….TenoJM et al. JAMA 2004;291(1):88-93 Retrospective study of 1578 deaths Families reported 25% care deemed inadequate for pain and shortness of breath 25% concerned about physician communication 70% of families rated care as “excellent” by Hospice, compared to less than 50% for institutional or home health care

26. Factors considered important at EOL to patients, families and physiciansSteinhauserKE. JAMA;284(19):2476-2482

27. Twelve Needs of the CaregiverPrendergast JAMA 2002;288(21):2732-2740 To have questions answered honestly To know specific facts about diagnosis To know prognosis To be called for changes To receive daily info To receive information in understandable language To believe that medical staff cares To be assured of patient’s comfort To be comforted To express emotions To find meaning in the death of their loved one To be able to eat, drink and sleep

28. Caregiver Demographics

30. Caregiver Stress National Cancer Institute Quote “Although greatly feared by our death-denying society, the end of life can be a time of great personal growth for patients and their families” Some patients, caregivers and clinicians will grow from this experience, others will have difficulty recovering

31. Clinician’s Issues In general, physicians receive minimal training on EOL issues, hence, there is likely to be some universal lack of comfort with dying patients. Also, scant information in leading medical textbooks Clinicians tend to overestimate the prognosis of terminally ill patients (75 days versus 26 days in a study). They are not happy as prognosticators In another study: 37% of patients received a true prognosis; the rest were overly optimistic Communication can be poor: in one study 1/3 of patients thought palliative care was curative

32. Clinician’s Issues Lack of time to discuss EOL issues. Worsened if patient is incompetent Physicians can bill $92.33 for a 40 minute outpatient counseling session. They can also take advantage of care plan oversight (CPO), reimbursement for non-face-to-face-care Ironically, there is little to no legal obligation between a physician and family, yet a close relationship during EOL is critical

33. Clinician’s Issues Patients often create living wills without involvement of their physicians Primary care physicians are discouraged from being inpatient attending physicians for several reasons. As a result, this care now usually goes to the hospitalist or specialist The end result is the PCM may be out of the picture during inpatient decision making and following discharge

34. What do we know about PCM involvement in Hospice? I could find no statistics in the medical literature No information from National Hospice and Palliative Care Organization research arm No information from Covenant Hospice Emerald Coast Hospice: 72% of Hospice patients followed by their PCM 15% followed by Oncologist or specialist 3% followed by Hospice Director 76% non-cancer patients 10% minorities

35. Hospice and primary care physicians…. Ogle K et al. Am J Hospice Pall Care 2003;20(1):41-51 131 FP and Internal Med physicians surveyed: Very positive towards Hospice in general Moderate-strong barriers to Hospice referral: Lack of familiarity with Hospice services 35-46% Patients reluctant to have strangers in house 52% Patients and/or families unwilling or not ready to elect Hospice services 68%

36. Staying connected to Hospice patients: Editorial Stephens GG. JABFP 2003; 16(3): 265-266 “We all will lose a piece of moral credibility if we arrange things so that we never have to see our patients die”

37. The role of primary care visitsKronman AC. J Gen Intern Med 2008;23 (9):1330-1335 Increased outpatient visits to the primary care physician in the last 6 months was associated with: Reduced hospital days Reduced in-hospital deaths Reduced costs Reduced preventable admissions This does not, however, prove cause and effect

38. Letter of Condolence?Bedellet al. NEJM 344(15):1162-1164

39. Possible Solutions

40. Potential Solutions Education: More widespread use of Hospice services More ethics seminars for patients and physicians More objective (non-sensationalistic) presentations on TV and radio about EOL Stop using euphemisms like “passing”; instead use death and dying We should use “quality of death”, just like “quality of life” in our medical lexicon

41. Potential Solutions Support from major medical organizations. Example: American College of Physicians 2009 Point Paper “The physician should strive to ensure that the patient, family caregiver and other family members have a common, accurate understanding of the patient’s condition and prognosis” “ The physician should define a palliative care plan that focuses on maximizing patient and caregiver quality of life” “The physician should monitor family caregivers for distress due to issues of loss during the period leading up to and after the death of the patient”

42. Hospice In 2004, 30-38% of Medicare beneficiaries who died used Hospice Mean hospice stay is 69 days, with 35% less than one week 83% of Hospice patients are 65 or older 99% of metropolitan and 76% of rural areas served by Hospice

43. Hospice eligibility and services Life expectancy of 6 months or less Willingness to accept palliative plan of care Be eligible to receive Medicare part A benefits Must be enrolled in a Medicare-approved Hospice SERVICES ELIGIBILITY Multidisciplinary team Symptom management Patient & family education 24 hr case management Counseling Durable medical equipment Inpatient care if needed Respite care Medications Home health aide Bereavement

44. Hospice Medicare pays 100% of Hospice charges, whether patient is at home or in Hospice facility Greatest satisfaction with Hospice is when it is planned weeks or months ahead of time and not at the last moment Two studies have shown that Hospice actually saves Medicare dollars

45. Hospice Primary care physician can still call the shots, backed up by the hospice medical director Only about 30% of Hospice patients nation wide are evaluated by Hospice physician Hospice patients actually live longer than non-hospice patients with terminal illnesses (cancer and non-cancer cases), contrary to myth

46. Hospice Hospice will now pay for a hospice physician to consult with terminally ill patients who are not yet in hospice; to advise about pain management and end-of-life issues Hospices monitor outcomes nationally: % patients with controlled pain, % caregivers who recommend hospice and % caregivers who received adequate emotional support

47. Hospice Patient does not have to be home bound or have a DNR order signed before entry Hospice does not pay for nursing home care You can get hospice care for two 90 day periods, then unlimited 60 periods To find a hospice: www.nhpco.org More information in reference section of this presentation

48. Hospice growth Source: 2005 NHPCO National Summary of Hospice Care

49. Hospice Patients by Diagnosis

50. Inpatient Hospice Charges Compared to Hospital and SNF http://www.nahc.org/facts/HospiceStats09.pdf

51. Potential Solutions More widespread use of advanced directives Mandatory ethics consultations in hospitals for withholding or withdrawal of life support (Columbia University Medical Center)

52. Advanced Directives Patient Self Determination Act (1990) required hospitals to ask if patients had an AD and required them to educate patients and staff Only 5% contained specific instructions One study showed that only 12% of patients discussed their AD with a physician and only 25% of physicians were aware of an AD

53. Advance Directives Includes: healthcare proxy, living wills, instructional directives, values history and combined directives Popular forms: caringinfo.org, “Let Me Decide”, Five Wishes”, etc. Many are proprietary so can’t be copied or altered and are fee based

54. Are advance directives foolproof?Prendergast JAMA 2002;288(21):2732-2740Teno TM. J Am Geriatr Soc 2007;55(2):189-94 Studies have shown the following (academic universities): Mid-1990s study showed only 5% of patients had an advance directive on admission. 2007 study showed 71% had AD Patient’s wishes still not followed 25% of time AD may not result in change in the care practiced in the hospital or ICU in some studies Studies are mixed whether medical costs are reduced as a result of an AD

55. Potential Solutions: Community wide planning Hammes BJ. Arch Int Med 1998;158:383-390 La Crosse (Wisconsin) Advance Directive Study—extensive community education of 4 major healthcare organizations (120 AD educators). They analyzed 540 deaths: 85% of those dying had an AD and 81% available on the chart Most ADs completed in advance of death Only 4% wanted everything done 98% of deaths associated with treatment limitations No outcomes data reported

56. Advance directives in nursing homes Molloy DW. JAMA 2000;283;1437-1444 Evaluated 6 Canadian nursing homes over 4 yrs Implemented “Let Me Decide” education program Evaluated 500+ residents who received extensive education and control group that did not Those with AD education had fewer hospitalizations (.27 vs .48) and lower cost ($3490 vs $ 5239) Satisfaction levels with care overall and mortality were the same

57. States with advance directive registries Arizona California Louisiana Montana North Carolina Vermont

58. Advance Directives Should be available 24/7 so storing in paper chart is not optimal Storing the AD in an electronic health record (EHR) may make the AD available in one healthcare system but not available externally Storing the AD in a web based personal health record (PHR) like Google Health or RelayHealth allows access while traveling

59. Will it take healthcare reform? Patient-Centered Medical Home (PCMH) model: Create a treatment and reimbursement model where end-of-life issues are part of routine medical care Have information technology integrate home health, Hospice , the physician’s office EHR, patients PHR and home telemedicine so there is electronic coordination of care Pay for quality and not quantity of care Reduce patient panel size and increase the “face time” physicians have with their patients Bring back the house call

61. Physician who provides, manages and facilitates care

62. Care is coordinated or integrated across healthcare system

63. More accessible practice with increased hours and easier scheduling

64. Enhanced payment that recognizes the added value of delivering care through the PCMH model

65. Assistance to practices seeking transformation

67. Conclusions There is a need for better continuity of care and EOL communication between the primary care physician, patient and the caregiver(s) Multiple medical organizations need to stress the importance of EOL care in the total spectrum of patient care It may take true healthcare reform to create an environment where the PCM is more intimately involved with EOL issues

68. Conclusions Further research is needed to explore the barriers for increased participation by PCMs in Hospice and EOL

69. References Family Caregivers, Patients and Physicians: Ethical Guidance to Optimize Relationships. American College of Physicians. Position Paper 2009. www.acponline.org NPR Dying in American November 19 2002. http://www.npr.org/templates/story/story.php?storyId=846845 Kutner JS. An 86-Year Old Woman with Cardiac Cachexia Contemplating theEnd of Her Life. JAMA 2010;303 (4):349-356 Wright AA, Zhang B, Ray A et al. Associations between end of life discussions, patient mental health, medical care near death and caregiver bereavement adjustment. JAMA 2008;300 (14):1665-1673

70. References Zhang B, Wright AA, Huskamp HA et al. Health Care Costs in the Last Week of Life. Arch Int Med 2009;169(5):480-488 CDC National Vital Statistics. Deaths and Mortality. http://www.cdc.gov/nchs/fastats/deaths.htm Kronman AC, Ash AC, Freund KM et al. Can primary care visits reduce hospital utilization among Medicare beneficiaries at the end of life? J Gen Intern Med 2008;23 (9):1330-1335 Rabow MW, Hauser JM, Adams J. Supporting Family Caregivers at the End of Life: “They Don’t Know What They Don’t Know”. JAMA 2004;291(4):483-491

71. References Cherlin E, Fried T, Prigerson HG et al. Communication between Physicians and Family Caregivers about Care at the End of Life: When do Discussions Occur and What is Said? J Pall Med 2005;8(6):11761185 Teno JM, Clarridge BR, Casey V et al. Family Perspectives on End of Life Care at the Last Place of Care. JAMA 2004;291 (1):88-93 Hanchate A, Kronman AC, Young-Xu Y et al. Racial and Ethnic Differences in End of Life Costs. Arch Int Med 2009;169(5):493-501 Bedell SE, Cadenhead K, Grayboys TB. The Doctors Letter of Condolence NEJM 2001;344(15):1162-1164

72. References Hogan C, Lunney J, Gabel J et al. Medicare Beneficiaries’ Costs of Care In the Last Year of Life. Health Affairs 2001; 20 (4):188-195 Buntin MB, Huskamp H. What is Known About the Economics of End of Life Care for Medicare Beneficiaries? The Gerontologist 2002;42 (III):40-48 Covinsky KE, Goldman L, Cook EF et al. The impact of serious illness on patient’s families. JAMA 1994;272:1839-44 Prendergast TJ, Puntillo KA. Withdrawal of Life Support. Intensive caring at the end of life. JAMA 2002;288(21):2732-40 Steinhauser KE et al. Factors considered important at the end of life by patients, family, physicians and other care givers. JAMA 2000;284 (19):2476-2482

73. References Prendergast TJ. Advance care planning: pitfalls, progress, promise. Crit Care Med 2001;29(2):N34-N39 Hofman JC et al. Patient preferences for communication with physicians about end of life decisions. The SUPPORT investigators. Ann Int Med 1997;127:1-12 Hammes BJ. Death and end of life planning in one midwestern community. Arch Int Med 1998;158:383-390 Molloy DW. Systematic implementation of an advance directive program in nursing homes. JAMA 2000;283:1437-1444

74. References Nicoletti B. Getting Paid (care plan oversight). www.aafp.org/fpm/2005/0500/p23.html Ogle K, Mavis B, Wang T. Hospice and primary care physicians: attitudes, knowledge and barriers. Am J Hospice Pall Care 2003;20(1):41-51 Stephens GG. Staying Connected to Hospice Patients. Editorial. JABFP 2003;16(3):265-266 Hospice Care in America 2009 monograph www.nhpco.org

75. Web Site Links National Hospice and Palliative Care Organization (NHPCO) www.nhpco.org Hospice Association of America www.nahc.org/HAA/home.html Hospice Educational Institute www.hospiceworld.org Hospice Net www.hospicenet.org Medicare Hospice Benefits http://www.medicare.gov/Publications/Pubs/pdf/02154.pdf National Cancer Institute (NCI) www.cancer.gov Caregiver resources http://www.medicare.gov/caregivers/caregiving_exchange.asp Hospice Facts http://www.nahc.org/facts/HospiceStats09.pdf