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

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? Dying In America: Is Your Doctor Onboard? Presentation Transcript

  • Dying in America: Is Your Doctor Onboard?
    Robert Hoyt MD
    February 27 2010
  • 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
  • No shortage of media coverage
    Dying in America
    November 19 2002
  • Discussing End of Life Issues Is Acceptable But Controversial
  • From Reform to Death Panels
  • 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
  • How are we doing with palliative care in US in 2009? (hospitals > 50 beds)
    Center to Advance
    Palliative Care
    www.capc.org
  • What do studies show about end of life (EOL) medical care in America today?
  • 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
  • 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
  • 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
  • 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
  • Cost in the last 6 months of life by ethnic group Hanchate A et al. Arch Int Med 2009;169 (5):493-501
  • 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)
  • National Healthcare EOL CostsThe Dartmouth Atlas of Healthcare 2008. Tracking the care of patients with severe chronic illness
  • Abandonment is an issue
    USA Today 3/10/09
  • 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
  • Abandonment at EOL Back AL et al. Arch Int Med 2009;169(5):474-479
  • Communication Gaps
  • 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
  • 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
  • Timing of communicationCherlinE et al. J Pall Med 2005;8 :1176-1185
  • Caregiver UnderstandingCherlinE et al. J Pall Med 2005;8 :1176-1185
  • Caregiver understandingCherlinE et al. J Pall Med 2005;8 :1176-1185
  • 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
  • Factors considered important at EOL to patients, families and physiciansSteinhauserKE. JAMA;284(19):2476-2482
  • 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
  • Caregiver Demographics
  • Caregiver Stress
    • 61% of those providing > 21 hours/week of care experienced depression. Caregivers with very involved physicians had less depression (27% vs 42%)
    It can be a growth and learning experience: 20% provide dressing changes and 40% administer medications
    Workers in the field feel that family members who are directly involved with EOL do better after the death, compared to remote relatives
  • 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
  • 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
  • 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
  • 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
  • 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
  • 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%
  • 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”
  • 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
  • Letter of Condolence?Bedellet al. NEJM 344(15):1162-1164
  • Possible Solutions
  • 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
  • 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”
  • 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
  • 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
  • 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
  • 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
  • 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
  • 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
  • Hospice growth
    Source: 2005 NHPCO National Summary of Hospice Care
  • Hospice Patients by Diagnosis
  • Inpatient Hospice Charges Compared to Hospital and SNF http://www.nahc.org/facts/HospiceStats09.pdf
  • Potential Solutions
    More widespread use of advanced directives
    Mandatory ethics consultations in hospitals for withholding or withdrawal of life support (Columbia University Medical Center)
  • 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
  • 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
  • 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
  • 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
  • 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
  • States with advance directive registries
    Arizona
    California
    Louisiana
    Montana
    North Carolina
    Vermont
  • 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
  • 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
  • The Patient-Centered Medical Home
    60
    Patient
    Personal Physician
    • Trusted personal physician
    • Physician who provides, manages and facilitates care
    • Care is coordinated or integrated across healthcare system
    • More accessible practice with increased hours and easier scheduling
    • Enhanced payment that recognizes the added value of delivering care through the PCMH model
    • Assistance to practices seeking transformation
    • Support to practices adopting HIT for QI
  • I conclude with this famous quote
    Director, Thorndike Memorial Laboratories
    Boston City Hospital
     
    “One of the essential qualities of the clinician is interest in humanity;
    for the secret of the care of the patient is in caring for the patient”
  • 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
  • Conclusions
    Further research is needed to explore the barriers for increased participation by PCMs in Hospice and EOL
  • 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
  • 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
  • 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
  • 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
  • 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
  • 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
  • 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