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Dying In America: Is Your Doctor Onboard?


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Discusses the ethical issues during end-of-life between primary care physicians, patients and their caregivers in 2010

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Dying In America: Is Your Doctor Onboard?

  1. 1. Dying in America: Is Your Doctor Onboard?<br />Robert Hoyt MD<br />February 27 2010<br />
  2. 2. Learning Objectives<br />After the presentation, participants should be able to<br />Describe current end-of-life (EOL) care in the United States<br />Discuss the ramifications of current EOL care on patients, care givers and physicians<br />Enumerate several potential solutions<br />Slides and references available for download at Search for same title<br />
  3. 3. No shortage of media coverage<br />Dying in America<br />November 19 2002<br />
  4. 4. Discussing End of Life Issues Is Acceptable But Controversial<br />
  5. 5. From Reform to Death Panels<br />
  6. 6. Basic Premise of this presentation<br />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<br />The end result is a suboptimal experience by patients, families and caregivers<br />
  7. 7. How are we doing with palliative care in US in 2009? (hospitals &gt; 50 beds)<br />Center to Advance<br />Palliative Care<br /><br />
  8. 8. What do studies show about end of life (EOL) medical care in America today?<br />
  9. 9. General End of Life Facts<br />About 5% of Medicare recipients (+2.4 million) die each year; 40% occur in hospital<br />Most die with 4 major illnesses, on average <br />38% spend some time in nursing home in the last year<br />Deaths are equally divided between cancer and heart disease<br />Fewer than 1/3 of Americans have advanced directives and about 1/2 with terminal illnesses have them; increases noted over past decade<br />
  10. 10. Summary of EOL Issues<br />Financial burden<br />Feelings of abandonment<br />Poor communication about EOL preferences<br />Over treatment with ineffective therapies<br />Unmet patient and caregiver needs<br />Late referral to Hospice<br />Caregiver stress<br />Clinician issues<br />
  11. 11. Financial Burdens<br />Governmental<br />70% of death costs paid by Medicare<br />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)<br />78% of last year of life healthcare bill is spent in last month<br />In 1997 annual per capita cost for a Medicare patient was $4,400 ($6,784 in 2002) ; $26,300 if they died<br />
  12. 12. Financial Burden<br />Family and Caregivers<br />Family Medical Leave Act guarantees only unpaid leave, not money<br />20% of family caregivers have to quit work<br />31% lose much of life earnings<br />Estimated caregiving price tag for strokes = $6 billion annually, while care for Alzheimers disease = $65 billion<br />
  13. 13. Cost in the last 6 months of life by ethnic group Hanchate A et al. Arch Int Med 2009;169 (5):493-501<br />
  14. 14. Health care costs in the last week of life Zhang et al Arch Int Med 2009; 169(5): 480-488<br />Advanced cancer patients who had EOL discussions with their physicians had:<br /> Lower health care costs <br />Reduced CPR, ventilator use and ICU stays<br />No difference in survival time<br />Higher cost care was associated with lower quality of life (rated by patient or caregiver)<br />
  15. 15. National Healthcare EOL CostsThe Dartmouth Atlas of Healthcare 2008. Tracking the care of patients with severe chronic illness<br />
  16. 16. Abandonment is an issue<br />USA Today 3/10/09<br />
  17. 17. Abandonment at EOL: ThemesBack AL et al. Arch Int Med 2009;169(5):474-479<br />Before death loss of continuity issues:<br />Patient: loses access to medical expertise and long standing patient-physician relationship<br />Physician and nurses: hospice and stopping chemo feel like quitting on patient<br />At death or after, there can be lack of closure<br />Patient: no more outpatient or inpatient visits is viewed negatively. Simple phone call is powerful<br />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<br />
  18. 18. Abandonment at EOL Back AL et al. Arch Int Med 2009;169(5):474-479<br />
  19. 19. Communication Gaps<br />
  20. 20. End of life discussions and quality of life/death Wright et al. JAMA 2008300(14):1665-73<br />37% of cancer patients in this study reported end-of-life discussions with physicians<br />EOL discussions were associated with less aggressive medical care near death and earlier referrals to hospice <br />Aggressive care was associated with worse patient quality of life and caregiver adjustment<br />
  21. 21. Communication between Physicians and Family Caregivers… CherlinE et al. J Pall Med 2005;8 :1176-1185<br />Studied 218 caregivers in Hospice program<br />21% claimed they were not told illness was incurable<br />60% not given life expectancy estimate<br />40% Hospice not discussed<br />Discussions commonly occurred in last month of life<br />Caregivers admitted ambivalence about knowing the truth and accepting bad news<br />Only 25% agreed with physician’s life expectancy estimate <br />
  22. 22. Timing of communicationCherlinE et al. J Pall Med 2005;8 :1176-1185<br />
  23. 23. Caregiver UnderstandingCherlinE et al. J Pall Med 2005;8 :1176-1185<br />
  24. 24. Caregiver understandingCherlinE et al. J Pall Med 2005;8 :1176-1185<br />
  25. 25. Family Perspectives on EOL Care….TenoJM et al. JAMA 2004;291(1):88-93<br />Retrospective study of 1578 deaths<br />Families reported<br />25% care deemed inadequate for pain and shortness of breath<br />25% concerned about physician communication<br />70% of families rated care as “excellent” by Hospice, compared to less than 50% for institutional or home health care<br />
  26. 26. Factors considered important at EOL to patients, families and physiciansSteinhauserKE. JAMA;284(19):2476-2482<br />
  27. 27. Twelve Needs of the CaregiverPrendergast JAMA 2002;288(21):2732-2740<br />To have questions answered honestly<br />To know specific facts about diagnosis<br />To know prognosis<br />To be called for changes<br />To receive daily info<br />To receive information in understandable language<br />To believe that medical staff cares<br />To be assured of patient’s comfort<br />To be comforted<br />To express emotions<br />To find meaning in the death of their loved one <br />To be able to eat, drink and sleep<br />
  28. 28. Caregiver Demographics<br />
  29. 29. Caregiver Stress<br /><ul><li>61% of those providing > 21 hours/week of care experienced depression. Caregivers with very involved physicians had less depression (27% vs 42%)</li></ul>It can be a growth and learning experience: 20% provide dressing changes and 40% administer medications<br />Workers in the field feel that family members who are directly involved with EOL do better after the death, compared to remote relatives<br />
  30. 30. Caregiver Stress<br />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”<br />Some patients, caregivers and clinicians will grow from this experience, others will have difficulty recovering<br />
  31. 31. Clinician’s Issues<br />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<br />Clinicians tend to overestimate the prognosis of terminally ill patients (75 days versus 26 days in a study). They are not happy as prognosticators<br />In another study: 37% of patients received a true prognosis; the rest were overly optimistic<br />Communication can be poor: in one study 1/3 of patients thought palliative care was curative<br />
  32. 32. Clinician’s Issues<br />Lack of time to discuss EOL issues. Worsened if patient is incompetent<br />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<br />Ironically, there is little to no legal obligation between a physician and family, yet a close relationship during EOL is critical<br />
  33. 33. Clinician’s Issues<br />Patients often create living wills without involvement of their physicians<br />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<br />The end result is the PCM may be out of the picture during inpatient decision making and following discharge<br />
  34. 34. What do we know about PCM involvement in Hospice?<br />I could find no statistics in the medical literature<br />No information from National Hospice and Palliative Care Organization research arm<br />No information from Covenant Hospice<br />Emerald Coast Hospice:<br />72% of Hospice patients followed by their PCM<br />15% followed by Oncologist or specialist<br />3% followed by Hospice Director<br />76% non-cancer patients<br />10% minorities<br />
  35. 35. Hospice and primary care physicians…. Ogle K et al. Am J Hospice Pall Care 2003;20(1):41-51<br />131 FP and Internal Med physicians surveyed:<br />Very positive towards Hospice in general<br />Moderate-strong barriers to Hospice referral:<br />Lack of familiarity with Hospice services 35-46%<br />Patients reluctant to have strangers in house 52%<br />Patients and/or families unwilling or not ready to elect Hospice services 68%<br />
  36. 36. Staying connected to Hospice patients: Editorial Stephens GG. JABFP 2003; 16(3): 265-266<br />“We all will lose a piece of moral credibility if we arrange things so that we never have to see our patients die”<br />
  37. 37. The role of primary care visitsKronman AC. J Gen Intern Med 2008;23 (9):1330-1335<br />Increased outpatient visits to the primary care physician in the last 6 months was associated with:<br />Reduced hospital days<br />Reduced in-hospital deaths<br />Reduced costs<br />Reduced preventable admissions<br />This does not, however, prove cause and effect<br />
  38. 38. Letter of Condolence?Bedellet al. NEJM 344(15):1162-1164<br />
  39. 39. Possible Solutions<br />
  40. 40. Potential Solutions <br />Education:<br />More widespread use of Hospice services<br />More ethics seminars for patients and physicians<br />More objective (non-sensationalistic) presentations on TV and radio about EOL<br />Stop using euphemisms like “passing”; instead use death and dying<br />We should use “quality of death”, just like “quality of life” in our medical lexicon<br />
  41. 41. Potential Solutions <br />Support from major medical organizations. Example: American College of Physicians 2009 Point Paper<br />“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”<br /> “ The physician should define a palliative care plan that focuses on maximizing patient and caregiver quality of life”<br />“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”<br />
  42. 42. Hospice<br />In 2004, 30-38% of Medicare beneficiaries who died used Hospice<br />Mean hospice stay is 69 days, with 35% less than one week<br />83% of Hospice patients are 65 or older<br />99% of metropolitan and 76% of rural areas served by Hospice<br />
  43. 43. Hospice eligibility and services<br />Life expectancy of 6 months or less<br />Willingness to accept palliative plan of care<br />Be eligible to receive Medicare part A benefits<br />Must be enrolled in a Medicare-approved Hospice<br />SERVICES<br />ELIGIBILITY<br />Multidisciplinary team<br />Symptom management<br />Patient & family education<br />24 hr case management<br />Counseling<br />Durable medical equipment<br />Inpatient care if needed<br />Respite care<br />Medications<br />Home health aide<br />Bereavement<br />
  44. 44. Hospice<br />Medicare pays 100% of Hospice charges, whether patient is at home or in Hospice facility<br />Greatest satisfaction with Hospice is when it is planned weeks or months ahead of time and not at the last moment<br />Two studies have shown that Hospice actually saves Medicare dollars<br />
  45. 45. Hospice<br />Primary care physician can still call the shots, backed up by the hospice medical director<br />Only about 30% of Hospice patients nation wide are evaluated by Hospice physician<br />Hospice patients actually live longer than non-hospice patients with terminal illnesses (cancer and non-cancer cases), contrary to myth<br />
  46. 46. Hospice<br />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<br />Hospices monitor outcomes nationally: % patients with controlled pain, % caregivers who recommend hospice and % caregivers who received adequate emotional support<br />
  47. 47. Hospice<br />Patient does not have to be home bound or have a DNR order signed before entry<br />Hospice does not pay for nursing home care<br />You can get hospice care for two 90 day periods, then unlimited 60 periods <br />To find a hospice:<br />More information in reference section of this presentation<br />
  48. 48. Hospice growth<br />Source: 2005 NHPCO National Summary of Hospice Care<br />
  49. 49. Hospice Patients by Diagnosis<br />
  50. 50. Inpatient Hospice Charges Compared to Hospital and SNF<br />
  51. 51. Potential Solutions <br />More widespread use of advanced directives<br />Mandatory ethics consultations in hospitals for withholding or withdrawal of life support (Columbia University Medical Center)<br />
  52. 52. Advanced Directives<br />Patient Self Determination Act (1990) required hospitals to ask if patients had an AD and required them to educate patients and staff<br />Only 5% contained specific instructions<br />One study showed that only 12% of patients discussed their AD with a physician and only 25% of physicians were aware of an AD<br />
  53. 53. Advance Directives<br />Includes: healthcare proxy, living wills, instructional directives, values history and combined directives<br />Popular forms:, “Let Me Decide”, Five Wishes”, etc. Many are proprietary so can’t be copied or altered and are fee based<br />
  54. 54. Are advance directives foolproof?Prendergast JAMA 2002;288(21):2732-2740Teno TM. J Am Geriatr Soc 2007;55(2):189-94<br />Studies have shown the following (academic universities):<br />Mid-1990s study showed only 5% of patients had an advance directive on admission. 2007 study showed 71% had AD<br />Patient’s wishes still not followed 25% of time<br />AD may not result in change in the care practiced in the hospital or ICU in some studies<br />Studies are mixed whether medical costs are reduced as a result of an AD <br />
  55. 55. Potential Solutions: Community wide planning Hammes BJ. Arch Int Med 1998;158:383-390<br />La Crosse (Wisconsin) Advance Directive Study—extensive community education of 4 major healthcare organizations (120 AD educators). They analyzed 540 deaths:<br />85% of those dying had an AD and 81% available on the chart<br />Most ADs completed in advance of death<br />Only 4% wanted everything done<br />98% of deaths associated with treatment limitations<br />No outcomes data reported<br />
  56. 56. Advance directives in nursing homes Molloy DW. JAMA 2000;283;1437-1444<br />Evaluated 6 Canadian nursing homes over 4 yrs <br />Implemented “Let Me Decide” education program<br />Evaluated 500+ residents who received extensive education and control group that did not<br />Those with AD education had fewer hospitalizations (.27 vs .48) and lower cost ($3490 vs $ 5239)<br />Satisfaction levels with care overall and mortality were the same <br />
  57. 57. States with advance directive registries<br />Arizona<br />California<br />Louisiana<br />Montana<br />North Carolina<br />Vermont <br />
  58. 58. Advance Directives<br />Should be available 24/7 so storing in paper chart is not optimal<br />Storing the AD in an electronic health record (EHR) may make the AD available in one healthcare system but not available externally<br /> Storing the AD in a web based personal health record (PHR) like Google Health or RelayHealth allows access while traveling<br />
  59. 59. Will it take healthcare reform?<br />Patient-Centered Medical Home (PCMH) model: <br />Create a treatment and reimbursement model where end-of-life issues are part of routine medical care<br />Have information technology integrate home health, Hospice , the physician’s office EHR, patients PHR and home telemedicine so there is electronic coordination of care<br />Pay for quality and not quantity of care<br />Reduce patient panel size and increase the “face time” physicians have with their patients<br />Bring back the house call<br />
  60. 60. The Patient-Centered Medical Home <br />60<br />Patient<br />Personal Physician<br /><ul><li>Trusted personal physician
  61. 61. Physician who provides, manages and facilitates care
  62. 62. Care is coordinated or integrated across healthcare system
  63. 63. More accessible practice with increased hours and easier scheduling
  64. 64. Enhanced payment that recognizes the added value of delivering care through the PCMH model
  65. 65. Assistance to practices seeking transformation
  66. 66. Support to practices adopting HIT for QI</li></li></ul><li>I conclude with this famous quote<br />Director, Thorndike Memorial Laboratories<br />Boston City Hospital<br /> <br />“One of the essential qualities of the clinician is interest in humanity; <br />for the secret of the care of the patient is in caring for the patient”<br />
  67. 67. Conclusions<br />There is a need for better continuity of care and EOL communication between the primary care physician, patient and the caregiver(s)<br />Multiple medical organizations need to stress the importance of EOL care in the total spectrum of patient care<br />It may take true healthcare reform to create an environment where the PCM is more intimately involved with EOL issues<br />
  68. 68. Conclusions<br />Further research is needed to explore the barriers for increased participation by PCMs in Hospice and EOL<br />
  69. 69. References<br />Family Caregivers, Patients and Physicians: Ethical Guidance to Optimize Relationships. American College of Physicians. Position Paper 2009.<br />NPR Dying in American November 19 2002.<br />Kutner JS. An 86-Year Old Woman with Cardiac Cachexia Contemplating theEnd of Her Life. JAMA 2010;303 (4):349-356<br />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<br />
  70. 70. References<br />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<br />CDC National Vital Statistics. Deaths and Mortality.<br />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<br />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<br />
  71. 71. References<br />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<br />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<br />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<br />Bedell SE, Cadenhead K, Grayboys TB. The Doctors Letter of Condolence NEJM 2001;344(15):1162-1164<br />
  72. 72. References<br />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<br />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<br />Covinsky KE, Goldman L, Cook EF et al. The impact of serious illness on patient’s families. JAMA 1994;272:1839-44<br />Prendergast TJ, Puntillo KA. Withdrawal of Life Support. Intensive caring at the end of life. JAMA 2002;288(21):2732-40<br />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<br />
  73. 73. References<br />Prendergast TJ. Advance care planning: pitfalls, progress, promise. Crit Care Med 2001;29(2):N34-N39<br />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<br />Hammes BJ. Death and end of life planning in one midwestern community. Arch Int Med 1998;158:383-390<br />Molloy DW. Systematic implementation of an advance directive program in nursing homes. JAMA 2000;283:1437-1444<br />
  74. 74. References<br />Nicoletti B. Getting Paid (care plan oversight).<br />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<br />Stephens GG. Staying Connected to Hospice Patients. Editorial. JABFP 2003;16(3):265-266<br />Hospice Care in America 2009 monograph<br />
  75. 75. Web Site Links<br />National Hospice and Palliative Care Organization (NHPCO)<br />Hospice Association of America<br />Hospice Educational Institute<br />Hospice Net<br />Medicare Hospice Benefits<br />National Cancer Institute (NCI)<br />Caregiver resources<br />Hospice Facts<br />