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 AmericaNovember 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 AdvancePalliative Carewww.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 issueUSA Today 3/10/09

Abandonment at EOL: Themes Back 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… Cherlin E 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 communication Cherlin E et al. J Pall Med 2005;8 :1176-1185

Caregiver Understanding Cherlin E et al. J Pall Med 2005;8 :1176-1185

Caregiver understanding Cherlin E et al. J Pall Med 2005;8 :1176-1185

Family Perspectives on EOL Care…. Teno JM 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 physicians Steinhauser KE. JAMA;284(19):2476-2482

Twelve Needs of the Caregiver Prendergast 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 visits Kronman 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? Bedell et 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

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

ELIGIBILITY SERVICES

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):2732-2740

Teno 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

60

The Patient-Centered Medical Home

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 LaboratoriesBoston 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