Chapter 2. Effectiveness (continued, 4)

National Healthcare Disparities Report, 2010


Effectiveness (continued)

Functional Status Preservation and Rehabilitation

Importance

Demographics
Noninstitutionalized adults needing help of another person with activities of daily living (ADLs)xxix (2009)4.4 million94
Noninstitutionalized adults age 75 years and over needing help of another person with ADLs (2009)10%94
Noninstitutionalized adults needing help with instrumental activities of daily living (IADLs)xxx (2009)9.2 million94
Noninstitutionalized adults age 75 years and over needing help with IADLs (2009)20%94
Nursing home residents needing help with ADLs (2004)1.5 million95
Costs
Medicare payments for outpatient physical therapy (2006 est.)$3.1 billion96
Medicare payments for outpatient occupational therapy (2006 est.)$747 million96
Medicare payments for outpatient speech-language pathology services (2006 est.)$270 million96

Measures

A person's ability to function can decline with disease or age, but it is not always an inevitable consequence. Some health care interventions can help prevent diseases that commonly cause declines in functional status. Threats to function span a wide variety of medical conditions. Services to maximize function are delivered in a variety of settings, including providers' offices, patients' homes, long-term care facilities, and hospitals. Other interventions, such as physical therapy, occupational therapy, and speech-language pathology services, can help patients regain function that has been lost or minimize the rate of decline in functioning.

The NHDR tracks several measures related to functional status preservation and rehabilitation. Three core report measures are highlighted in this section:

  • Osteoporosis screening among older women.
  • Improvement in ambulation among home health care patients.
  • Nursing home residents needing more help with daily activities.

Findings

Prevention: Osteoporosis Screening Among Older Women

Osteoporosis is a disease characterized by loss of bone tissue. About 10 million people in the United States have osteoporosis and another 34 million with low bone mass are at risk of developing the disease. Osteoporosis increases the risk of fractures of the hip, spine, and wrist, and about half of all postmenopausal women will experience an osteoporotic fracture.

Osteoporotic fractures cost the U.S. health care system $17 billion each year and cause considerable morbidity and mortality. For example, of patients with hip fractures, one-fifth will die during the first year, one-third will require nursing home care, and only one-third will return to the functional status they had before the fracture.97

Because older women are at highest risk for osteoporosis, the U.S. Preventive Services Task Force recommends routine osteoporosis screening of women age 65 and over. Women with low bone density can reduce their risk of fracture and subsequent functional impairment by taking appropriate medications.98

Figure 2.41. Female Medicare beneficiaries age 65 and over who reported ever being screened for osteoporosis with a bone mass or bone density measurement, by race, ethnicity, income, and level of functioning, 2001, 2003, 2006, and 2008

Trend line chart, percentage of female Medicare beneficiaries, by race, 2001, 2003, 2006, and 2008. White, 2001, 36.0, 2003, 59.8, 2006, 67.1, 2008, 74.6. Black, 2001, 15.9, 2003, 24.3, 2006, 38.3, 2008, 47.4. API, 2001, 25.2, 2003, 39.9, 2006, 60.1, 2008, 60.9.          Trend line chart, percentage of female Medicare beneficiaries, by ethnicity, 2001, 2003, 2006, and 2008. Hispanic, 2001, 22.0, 2003, 39.9, 2006, 55.3, 2008, 62.9. Non-Hispanic White, 2001, 36.7, 2003, 61.0, 2006, 67.8, 2008, 75.0.

Trend line chart, percentage of female Medicare beneficiaries, by income, 2001, 2003, 2006, and 2008. Poor, 2001, 17.5, 2003, 35.5, 2006, 46.4, 2008, 52.6. Near Poor, 2001, 26.0, 2003, 48.4, 2006, 56.8, 2008, 64.0. Middle Income, 2001, 39.7, 2003, 62.6, 2006, 72.3, 2008, 76.8. High Income, 2001, 53.5, 2003, 73.7, 2006, 80.4, 2008, 86.7.               Trend line chart, percentage of female Medicare beneficiaries, by level of functioning, 2001, 2003, 2006, and 2008, No limitation, 2001, 35.6, 2003, 58.4, 2006, 66.9, 2008, 73.0. IADL only, 2001, 34.7, 2003, 52.6, 2006, 63.9, 2008, 73.0. 1-2 ADLs, 2001, 31.1, 2003, 52.5, 2006, 60.4, 2008, N/A. 3+ ADLs, 2001, 25.2, 2003, 44.6, 2006, 56.6, 2008, N/A.

Key: API = Asian or Pacific Islander; ADLs = activities of daily living; IADLs = instrumental activities of daily living.
Source: Medicare Current Beneficiary Survey, 2001, 2003, 2006, and 2008.
Denominator: Female Medicare beneficiaries age 65 and over living in the community.

  • From 2001 to 2008, the percentage of female Medicare beneficiaries age 65 and over who reported ever being screened for osteoporosis with a bone mass or bone density measurement increased among all racial, ethnic, income, and disability groups.
  • In all years, the percentage of female Medicare beneficiaries age 65 and over who reported ever being screened for osteoporosis was significantly lower among Blacks and APIs compared with Whites; Hispanics compared with non-Hispanic Whites; poor, near-poor, and middle-income beneficiaries compared with high-income beneficiaries; and beneficiaries with limitations in three or more ADLs compared with beneficiaries with no functional limitations (Figure 2.41).

Also, in the NHQR:

  • From 2001 to 2008, the percentage of female Medicare beneficiaries age 65 and over who reported ever being screened for osteoporosis with a bone mass or bone density measurement increased overall.
  • Since 2003, the percentage of older female Medicare beneficiaries who reported ever being screened for osteoporosis was lower among those living in nonmetropolitan areas compared with those living in metropolitan areas.
Outcome: Improvement in Ambulation in Home Health Care Patients

After an illness or injury, many patients receiving home health care may need temporary help to walk safely. This assistance can come from another person or from equipment, such as a cane. Patients who use a wheelchair may have difficulty moving around safely, but if they can perform this activity with little assistance, they are more independent, self-confident, and active.

As patients recover from illness or injury, many experience improvements in walking and moving with a wheelchair, which can be facilitated by physical therapy. However, in cases of patients with some neurologic conditions, such as progressive multiple sclerosis or Parkinson's disease, ambulation may not improve even when the home health agency provides good care. In addition, the characteristics of patients referred to home health agencies vary across States.

Figure 2.42. Adult home health care patients whose ability to walk or move around improved, by race and ethnicity, 2002-2008

Trend line chart, percentage of patients, by race, 2002 through 2008. White, 2002, 33.8, 2003, 35.0, 2004, 37.2, 2005, 38.9, 2006, 41.4, 2007, 43.6, 2008, 45.3. Black, 2002, 32.7, 2003, 33.6, 2004, 35.7, 2005, 36.8, 2006, 38.7, 2007, 40.2, 2008, 41.8. Asian, 2002, 38.0, 2003, 39.4, 2004, 40.9, 2005, 42.7, 2006, 44.7, 2007, 47.0, 2008, 49.0. NHOPI, 2002, 39.2, 2003, 40.3, 2004, 41.3, 2005, 42.5, 2006, 44.9, 2007, 47.5, 2008, 48.3. AI/AN, 2002, 35.4, 2003, 36.3, 2004, 37.0, 2005, 38.5, 2006, 41.1, 2007, 42.1, 2008, 43.5. More than one race, 2002, 33.8, 2003, 36.0, 2004, 39.3, 2005, 40.3, 2006, 42.9, 2007, 43.3, 2008, 42.2. 2008 Achievable Benchmark: 53.8%.          Trend line chart, percentage of patients, by ethnicity, 2002 through 2008. Non-Hispanic White, 2002, 33.8, 2003, 35.0, 2004, 37.2, 2005, 38.9, 2006, 41.4, 2007, 43.6, 2008, 45.3. Hispanic, 2002, 37.1, 2003, 37.8, 2004, 39.1, 2005, 39.4, 2006, 41.1, 2007, 42.0, 2008, 42.7. 2008 Achievable Benchmark: 53.8%.

Key: AI/AN = American Indian or Alaska Native; NHOPI = Native Hawaiian or Other Pacific Islander.
Source: Centers for Medicare & Medicaid Services, Outcome and Assessment Information Set (OASIS), 2002-2008.
Denominator: Adult nonmaternity patients completing an episode of skilled home health care and not already performing at the highest level according to the OASIS question on ambulation at the start of the episode.

  • From 2002 to 2008, the percentage of home health care patients who got better at walking or moving around improved for for each racial and ethnic group (Figure 2.42).
  • The 2008 top 5 State achievable benchmark was 53.8%.xxxi At the current 5% annual rate of increase, this benchmark could be attained overall in about 5 years.
  • Rates of improvement varied across racial and ethnic groups. Whites could attain the achievable benchmark in about 4 years. Asians and NHOPIs could attain the benchmark sooner, while Blacks, AI/ANs, multiple-race individuals, and Hispanics would not attain the benchmark for between 7 and 11 years.

Also, in the NHQR:

  • From 2002 to 2008, the percentage of home health care patients who got better at walking or moving around improved for the total population.
  • Populations with lower rates of improvement include patients age 85 years and over.
Outcome: Nursing Home Residents Needing More Help With Daily Activities

Long-stay residents enter a nursing facility typically because they can no longer care for themselves at home; they tend to remain in the facility for several months or years. While almost all long-stay nursing home residents have limitations in their activities of daily living, nursing home staff help residents stay as independent as possible. Most residents want to care for themselves, and the ability to perform daily activities is important to their quality of life. Some functional decline among residents cannot be avoided, but optimal nursing home care seeks to minimize the rate of decline.

Figure 2.43. Long-stay nursing home residents whose need for help with daily activities increased, by race/ethnicity, 2000-2008

Trend line chart, percentage of nursing home residents, by race/ethnicity, 2000 through 2008. White, 2000, 16.3, 2001, 16.5, 2002, 16.5, 2003, 16.5, 2004, 16.5, 2005, 16.4, 2006, 16.8, 2007, 16.2, 2008, 16.4. Black, 2000, 13.8, 2001, 13.9, 2002, 14.1, 2003, 14.1, 2004, 14.6, 2005, 14.6, 2006, 15.3, 2007, 14.9, 2008, 15.2. API, 2000, 13.9, 2001, 13.8, 2002, 12.7, 2003, 13.1, 2004, 12.7, 2005, 13.1, 2006, 13.3, 2007, 13.0, 2008, 13.0. AI/AN, 2000, 14.7, 2001, 13.6, 2002, 14.2, 2003, 14.7, 2004, 14.1, 2005, 14.4, 2006, 14.1, 2007, 14.3, 2008, 14.9. Hispanic, 2000, 13.9, 2001, 14.3, 2002, 14.2, 2003, 14.3, 2004, 14.2, 2005, 13.8, 2006, 14.6, 2007, 14.1, 2008, 15.0. 2008 Achievable Benchmark: 12.7%.

Key: API = Asian or Pacific Islander; AI/AN = American Indian or Alaska Native.
Source: Centers for Medicare & Medicaid Services, Minimum Data Set, 2000-2008. Data are from the third quarter of each calendar year.
Denominator: All long-stay residents in Medicare or Medicaid certified nursing home facilities.

  • Between 2000 and 2008, the percentage increased among Blacks of long-stay nursing home residents whose need for help with daily activities increased (Figure 2.43).
  • In all years, API residents were less likely than White residents to need increased help with daily activities. In all years before 2008, AI/AN and Hispanic residents were also less likely to need increased help with daily activities.
  • The 2008 top 5 State achievable benchmark was 12.7%.xxxii In 2008, API residents had almost attained the benchmark. There was no evidence that the overall rate or rates for other groups were getting closer to the benchmark.

Also, in the NHQR:

  • In 2008, 16.2% of long-stay nursing home residents had increased need for help with daily activities. The overall percentage of long-stay nursing home residents whose need for help with daily activities did not change between 2000 and 2008.
  • Residents ages 0-64 were less likely to need increased help with daily activities compared with residents ages 65-74.

Supportive and Palliative Care

Importance

Demographics
Number of nursing home residents ever admitted during the calendar year (2007)3,196,31099
Number of Medicare fee-for-service (FFS) home health patientsxxxiii (2006)3,031,814100
Number of Medicare FFS beneficiaries using Medicare hospice services (2006)935,565101
Cost
Total costs of nursing home carexxxiv (2007 est.)$131.3 billon102
Total costs of home health carexxxiv (2007 est.)$59.0 billion102
Medicare FFS payments for hospice services (2008 est.)$11.2 billion103

Measures

Disease cannot always be cured, and disability cannot always be reversed. For patients with long-term health conditions, managing symptoms and preventing complications are important goals. Supportive and palliative care cuts across many medical conditions and is delivered by many health care providers. Supportive and palliative care focuses on enhancing patient comfort and quality of life and preventing and relieving symptoms and complications. Toward the end of life, hospice care provides patients and families with practical, emotional, and spiritual support to help cope with death and bereavement. Honoring patient values and preferences for care is also critical.104

The National Priorities Partnership (NPP) identified palliative and end-of-life care as one of six national priorities.105 The vision is health care "capable of promising dignity, comfort, companionship, and spiritual support to patients and families facing advanced illness or dying." Key goals include relief of suffering, help with emotional and spiritual needs, effective communication about options for care, and high-quality hospice services.

The NHDR tracks several measures of supportive and palliative care delivered by home health agencies, nursing homes, and hospices. The 5 presented supporting measures are organized around the NPP goals:

  • Relief of suffering:
    • Shortness of breath among home health care patients.
    • Pressure sores among nursing home residents.
  • Help with emotional and spiritual needs:
    • Right amount of emotional support among hospice patients.
  • Effective communication:
    • Enough information about what to expect among hospice family caregivers.
  • High-quality palliative care services:
    • Care consistent with patient's wishes among hospice patients.

Findings

Relief of Suffering
Outcome: Shortness of Breath Among Home Health Care Patients

Shortness of breath is uncomfortable. Many patients with heart or lung problems experience difficulty breathing and may tire easily or be unable to perform daily activities. Doctors and home health staff should monitor shortness of breath and may give advice, therapy, medication, or oxygen to help lessen this symptom.

Figure 2.44. Adult home health care patients who had less shortness of breath between the start and end of a home health care episode, by race and ethnicity, 2002-2008

Trend line chart, percentage of home health care patients, by race, 2002 through 2008. White, 2002, 53.4, 2003, 55.2, 2004, 57.7, 2005, 59.3, 2006, 61.3, 2007, 61.9, 2008, 61.1. Black, 2002, 53.3, 2003, 55.4, 2004, 57.7, 2005, 58.9, 2006, 59.6, 2007, 60.1, 2008, 59.6. Asian, 2002, 52.7, 2003, 58.0, 2004, 59.6, 2005, 59.2, 2006, 61.9, 2007, 62.7, 2008, 63.0. NHOPI, 2002, 54.9, 2003, 56.9, 2004, 59.2, 2005, 61.6, 2006, 62.1, 2007, 65.0, 2008, 62.9. AI/AN, 2002, 51.4, 2003, 52.4, 2004, 54.4, 2005, 55.6, 2006, 57.5, 2007, 58.5, 2008, 57.5. More than one race, 2002, 51.6, 2003, 54.6, 2004, 58.9, 2005, 59.5, 2006, 60.6, 2007, 59.0, 2008, 60.5. 2008 Achievable Benchmark: 67.5%.          Trend line chart, percentage of home health care patients, by ethnicity, 2002 through 2008. Non-Hispanic White, 2002, 53.4, 2003, 55.2, 2004, 57.7, 2005, 59.3, 2006, 61.3, 2007, 61.9, 2008, 61.1. Hispanic, 2002, 51.3, 2003, 52.9, 2004, 55.0, 2005, 55.4, 2006, 56.5, 2007, 55.5, 2008, 54.3. 2008 Achievable Benchmark: 67.5%.

Key: NHOPI = Native Hawaiian or Other Pacific Islander; AI/AN = American Indian or Alaska Native.
Source: Centers for Medicare & Medicaid Services, Outcome and Assessment Information Set, 2002-2008.
Denominator: Adult nonmaternity patients completing an episode of skilled home health care.

  • Between 2002 and 2008, the percentage of adult home health care patients who had less shortness of breath increased for the total population from 53.3% to 60.5% (refer to NHQR), as well as for each racial and ethnic group.
  • From 2005 to 2008, Hispanics were significantly less likely than Non-Hispanic Whites to have experienced less shortness of breath (Figure 2.44).
  • The 2008 top 5 State achievable benchmark was 67.5%.xxxv At the current 2% annual rate of increase, this benchmark could be attained overall in about 5 years.
  • Whites, Asians, and NHOPI could attain the benchmark in under 5 years, while Blacks and AI/AN would not attain the benchmark for between 7 and 9 years. Hispanics would not attain the benchmark for 23 years.

Also, in the NHQR:

  • Between 2002 and 2008, the percentage of adult home health care patients who had less shortness of breath improved for every age group.
  • Populations with lower rates of improvement include patients ages 18-64 and age 85 and over.
Outcome: Pressure Sores Among Nursing Home Residents

A pressure ulcer, or pressure sore, is an area of broken-down skin caused by sitting or lying in one position for an extended time and can be very painful. Residents should be assessed by nursing home staff for presence or risk of developing pressure sores. Nursing homes can help to prevent or heal pressure sores by keeping residents clean and dry and by changing their position frequently or helping them move around. Other interventions include making sure residents get proper nutrition and using soft padding to reduce pressure on the skin. However, some residents may get pressure sores even when a nursing home provides good preventive care.

Figure 2.45. Short-stay (left) and high-risk long-stay (right) nursing home residents with pressure sores, by race/ethnicity, 2000-2008

Trend line chart, percentage of short-stay nursing home residents, pressure sores, by race/ethnicity, 2000 through 2008. White, 2000, 21.8, 2001, 21.4, 2002, 21.0, 2003, 21.1, 2004, 20.6, 2005, 20.2, 2006, 19.6, 2007, 19.0, 2008, 18.4. Black, 2000, 28.2, 2001, 27.3, 2002, 26.5, 2003, 25.8, 2004, 25.0, 2005, 24.5, 2006, 23.8, 2007, 22.7, 2008, 22.0. API, 2000, 23.0, 2001, 22.3, 2002, 22.5, 2003, 21.7, 2004, 22.7, 2005, 22.2, 2006, 22.3, 2007, 20.8, 2008, 20.9. AI/AN, 2000, 24.8, 2001, 20.8, 2002, 22.6, 2003, 22.5, 2004, 22.4, 2005, 21.4, 2006, 21.0, 2007, 21.0, 2008, 19.7. Hispanic, 2000, 27.2, 2001, 26.4, 2002, 25.4, 2003, 25.0, 2004, 24.7, 2005, 23.8, 2006, 24.1, 2007, 23.3, 2008, 22.1. 2008 Achievable Benchmark: 12.0%.          Trend line chart, percentage of high risk, long stay, nursing home residents, pressure sores, by race/ethnicity, 2000 through 2008. White, 2000, 13.3, 2001, 13.2, 2002, 13.1, 2003, 13.3, 2004, 12.9, 2005, 12.5, 2006, 11.9, 2007, 11.3, 2008, 11.0. Black, 2000, 17.6, 2001, 17.7, 2002, 17.5, 2003, 17.3, 2004, 16.8, 2005, 16.7, 2006, 16.3, 2007, 15.5, 2008, 15.1. API, 2000, 12.5, 2001, 12.2, 2002, 12.1, 2003, 12.1, 2004, 11.2, 2005, 11.4, 2006, 11.3, 2007, 11.1, 2008, 11.1. AI/AN, 2000, 16.9, 2001, 15.4, 2002, 15.5, 2003, 16.7, 2004, 15.5, 2005, 13.4, 2006, 14.4, 2007, 13.1, 2008, 14.8. Hispanic, 2000, 15.2, 2001, 15.4, 2002, 15.1, 2003, 14.8, 2004, 14.6, 2005, 14.2, 2006, 13.5, 2007, 13.4, 2008, 12.9. 2008 Achievable Benchmark: 7.1%.

Key: AI/AN = American Indian or Alaska Native; API = Asian or Pacific Islander.
Source: Centers for Medicare & Medicaid Services, Minimum Data Set, 2000-2008. Data for long-stay residents are from the third quarter of each calendar year. Data for short-stay residents are full calendar-year estimates.
Denominator:: Short-stay and high-risk long-stay nursing home residents in Medicare or Medicaid certified nursing and long-term care facilities.
Note: White, Black, API, and AI/AN are non-Hispanic groups.

  • In all years, Blacks and Hispanics were more likely than Whites to have pressure sores (Figure 2.45).
  • The 2008 top 5 State achievable benchmark for short-stay residents was 12.0%.xxxvi At the current 2% annual rate of decrease, this benchmark could be attained overall in about 16 years. APIs, AI/ANs, and Hispanics would take between 18 and 41 years to attain this benchmark.
  • The 2008 top 5 State achievable benchmark for high-risk long-stay residents was 7.1%.xxxvii At the current 2% annual rate of decrease, this benchmark could be attained overall in about 16 years. Blacks, APIs, AI/ANs, and Hispanics would take between 18 and 25 years to attain this benchmark.

Also, in the NHQR:

  • From 2000 to 2008, the rate of short-stay residents with pressure sores fell.xxxviii For high-risk long-stay residents, the rate also fell.xxxix Improvements were observed for all groups.
  • Males had lower rates of improvement than females.
  • Short-stay residents have higher rates of pressure sores; some of these patients may be admitted to nursing homes because of sores acquired during an acute care hospitalization.

Help With Emotional and Spiritual Needs

Hospice care is generally delivered at the end of life to patients with a terminal illness or condition who desire palliative medical care; it also includes practical, psychosocial, and spiritual support for the patient and family. The goal of end-of-life care is to achieve a "good death," defined by the Institute of Medicine (IOM) as one that is "free from avoidable distress and suffering for patients, families, and caregivers; in general accord with the patients' and families' wishes; and reasonably consistent with clinical, cultural, and ethical standards."106

The National Hospice and Palliative Care Organization's Family Evaluation of Hospice Care survey examines the quality of hospice care for dying patients and their family members. Family respondents report how well hospices respect patients' wishes, communicate about illness, control symptoms, support dying on one's own terms, and provide family emotional support.107, xl

Management: Right Amount of Emotional Support Among Hospice Patients

Dying is stressful. Patients at the end of life may develop depression or anxiety disorders. Health care systems and providers need to be attuned to recognizing and responding to the emotional and spiritual needs of patients with life-limiting illness and their families.

Figure 2.46. Hospice patients age 18 and over who did NOT receive the right amount of help for feelings of anxiety or sadness, by race, ethnicity, education, and gender, 2008-2009

Trend line chart, percentage of hospice patients, did not receive right help for anxiety/sadness, by race, 2008 through 2009. White, 2008, 8.9, 2009, 8.5. Black, 2008, 14.0, 2009, 14.9. API, 2008, 19.0, 2009, 20.5. AI/AN, 2008, 5.0, 2009, 11.5. 2009 Achievable Benchmark: 6.4%.            Trend line chart, percentage of hospice patients, did not receive right help for anxiety/sadness, by ethnicity, 2008 through 2009. Non-Hispanic White, 2008, 8.8, 2009, 8.4. Hispanic, 2008, 14.7, 2009, 14.4. 2009 Achievable Benchmark: 6.4%.

Trend line chart, percentage of hospice patients, did not receive right help for anxiety/sadness, by education, 2008 through 2009. Less than High School, 2008, 8.5, 2009, 8.0. High School Graduate, 2008, 8.8, 2009, 8.5. Some College, 2008, 9.5, 2009, 9.4. 2009 Achievable Benchmark: 6.4%.          Trend line chart, percentage of hospice patients, did not receive right help for anxiety/sadness, by gender, 2008 through 2009. Male, 2008, 10.0, 2009, 9.7. Female, 2008, 9.5, 2009, 9.3. 2009 Achievable Benchmark: 6.4%.

Key: AI/AN = American Indian or Alaska Native; API = Asian or Pacific Islander.
Source: National Hospice and Palliative Care Organization, Family Evaluation of Hospice Care, 2008-2009.
Denominator: Adult hospice patients.

  • The proportion of hospice patients whose families reported that they did not receive the right amount of help for feelings of anxiety or sadness was 9.4% in 2009 (refer to NHQR).
  • In all years, Blacks, APIs, and AI/ANs were less likely than Whites and Hispanics were less likely than Non-Hispanic Whites to receive the right amount of emotional support (Figure 2.46). High school graduates were more likely than hospice patients with some college education to receive the right amount of emotional support.
  • The 2009 top 5 State achievable benchmark was 6.4%.xli Data are insufficient to assess progress toward this goal.

Also, in the NHQR:

  • In all years, hospice patients ages 18-44 and ages 45-64 were less likely to receive the right amount of emotional support.

Effective Communication

Management: Enough Information About What To Expect

Patients at the end of life and their families need clear information about treatment options, prognosis, advance directives, and what to expect while the patient is dying. Health care providers need to be skilled at eliciting patient's values and preferences, accepting of different cultural and religious choices, and committed to continuing care regardless of patient treatment decisions.

Figure 2.47. Hospice patients age 18 and over whose family caregivers wanted more information about what to expect while the patient was dying, by race, ethnicity, education, and gender, 2008-2009

Trend line chart, percentage of hospice patients, family caregivers wanted more info, by race, 2008 through 2009. White, 2008, 14.7, 2009, 14.4. Black, 2008, 15.7, 2009, 16.1. API, 2008, 21.2, 2009, 23.5. AI/AN, 2008, 17.8, 2009, 17.3. 2009 Achievable Benchmark: 11.7%.              Trend line chart, percentage of hospice patients, family caregivers wanted more info, by ethnicity, 2008 through 2009. Non-Hispanic White, 2008, 14.5, 2009, 14.3. Hispanic, 2008, 19.0, 2009, 18.5. 2009 Achievable Benchmark: 11.7%.

Trend line chart, percentage of hospice patients, family caregivers wanted more info, by education, 2008 through 2009. Less than High School, 2008, 13.7, 2009, 13.5. HS Graduate, 2008, 14.5, 2009, 14.4. Some College, 2008, 17.2, 2009, 16.600. 2009 Achievable Benchmark: 11.7%.          Trend line chart, percentage of hospice patients, family caregivers wanted more info, by gender, 2008 through 2009. Male, 2008, 16.4, 2009, 16.1. Female, 2008, 14.4, 2009, 14.4. 2009 Achievable Benchmark: 11.7%.

Key: AI/AN = American Indian or Alaska Native; API = Asian or Pacific Islander.
Source: National Hospice and Palliative Care Organization, Family Evaluation of Hospice Care, 2008-2009.
Denominator: Adult hospice patients.

  • In all years, family caregivers of API and AI/AN hospice patients were more likely than family caregivers of White patients, family caregivers of Hispanic hospice patients were more likely than family caregivers of non-Hispanic White patients, and family caregivers of male patients were more likely than family caregivers of female patients to want more information about dying (Figure 2.47). Family caregivers of hospice patients with less than a high school education and high school graduates were less likely than family caregivers of patients with some college education to want more information about dying.
  • The 2009 top 5 State achievable benchmark was 11.7%.xlii Data are insufficient to assess progress toward this goal.

Also, in the NHQR:

  • The proportion of hospice patient family caregivers who reported that they wanted more information about what to expect while the patient was dying was 15% in 2009.
  • In all years, family caregivers of hospice patients ages 18-44 and ages 45-64 were also more likely than family caregivers of patients age 65 and over to want more information about dying.

Hospice Services

Management: Care Consistent With Patient's Wishes

Hospice care should respect patients' stated goals for care. This includes shared communication and decisionmaking between providers and hospice patients and their family members and respect for cultural and religious beliefs.

Figure 2.48. Hospice patients age 18 and over who did NOT receive care consistent with their stated end-of-life wishes, by race, ethnicity, education, and gender, 2008-2009

Trend line chart, percentage of adult hospice patients, did not receive care consistent with stated end of life wishes, by race, 2008 through 2009. White, 2008, 5.31, 2009, 4.98. Black, 2008, 12.4, 2009, 10.87. API, 2008, 12.9, 2009, 17.02. AI/AN, 2008, 9.8, 2009, 10.07.          Trend line chart, percentage of adult hospice patients, did not receive care consistent with stated end of life wishes, by ethnicity, 2008 through 2009. Non-Hispanic White, 2008, 5.2, 2009, 4.9. Hispanic, 2008, 11.0, 2009, 10.2.

Trend line chart, percentage of adult hospice patients, did not receive care consistent with stated end of life wishes, by education, 2008 through 2009. Less than High School, 2008, 7.4, 2009, 7.1. HS Graduate, 2008, 5.4, 2009, 5.4. Some college, 2008, 4.8, 2009, 4.4.          Trend line chart, percentage of adult hospice patients, did not receive care consistent with stated end of life wishes, by gender, 2008 through 2009. Male, 2008, 5.44, 2009, 5.64. Female, 2008, 5.85, 2009, 5.3.

Key: AI/AN = American Indian or Alaska Native; API = Asian or Pacific Islander.
Source: National Hospice and Palliative Care Organization, Family Evaluation of Hospice Care, 2008-2009.
Denominator: Adult hospice patients.

  • The overall proportion of hospice patients whose families reported that they did not receive end-of-life care consistent with their stated wishes was 5.4% in 2009 (data not shown).
  • In both 2008 and 2009, Blacks, APIs, and AI/ANs were less likely than Whites, Hispanics were less likely than non-Hispanic Whites, and hospice patients with less than a high school education and high school graduates were less likely than patients with some college education to receive end-of-life care consistent with their wishes (Figure 2.48).

xxix ADLs consist of basic self-care tasks, such as bathing, dressing, eating, transferring, using the toilet, and walking.
xxx IADLs consist of tasks needed for a person to live independently, such as shopping, doing housework, preparing meals, taking medications, using the telephone, and managing money.
xxxi The top 5 States contributing to the achievable benchmark are District of Columbia, Hawaii, Kansas, South Carolina, and Utah.
xxxii The top 5 States contributing to the achievable benchmark are Alabama, Alaska, New Jersey, Oklahoma, and Oregon.
xxxiii Medicare FFS patients represent only a portion of all home health patients.
xxxiv Cost estimates for nursing home and home health services include only costs for freestanding skilled nursing facilities, nursing homes, and home health agencies and not facilities that are hospital based.
xxxv The top 5 States contributing to the achievable benchmark are Georgia, Hawaii, New Jersey, Rhode Island, and South Carolina.
xxxvi The top 5 States contributing to the achievable benchmark are Colorado, Iowa, Minnesota, Nebraska, and Utah.
xxxvii The top 5 States contributing to the achievable benchmark are Hawaii, Minnesota, Nebraska, New Hampshire, and North Dakota.
xxxviii Short-stay residents stay fewer than 30 days in a nursing home, typically following an acute care hospitalization.
xxxix Long-stay residents enter a nursing facility typically because they are no longer able to care for themselves at home; they tend to remain in the facility for several months or years. High-risk residents are those who are in a coma, do not get the nutrients needed to maintain skin health, or cannot change position on their own.
xl This survey provides unique insight into end-of-life care and captures information about a large percentage of hospice patients but is limited by nonrandom data collection and a response rate of about 40%. Survey questions were answered by family members, who might not be fully aware of the patients' wishes and concerns. These limitations should be considered when interpreting these findings.
xli The top 5 States contributing to the achievable benchmark are Alabama, Alaska, Arkansas, Kansas, and South Carolina.
xlii The top 5 States contributing to the achievable benchmark are Iowa, Kansas, Kentucky, Nebraska, and West Virginia.



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Current as of February 2011
Internet Citation: Chapter 2. Effectiveness (continued, 4): National Healthcare Disparities Report, 2010. February 2011. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/research/findings/nhqrdr/nhdr10/Chap2d.html