Effectiveness (continued)

Respiratory Diseases

Mortality
Number of deaths from chronic lower respiratory diseasesxi (2006)	124,5834
Cause of death rank for chronic lower respiratory diseases (2006)	4th4
Prevalence
Adults age 18 and over with current asthma (2007)	16.2 million48
Children under age 18 with current asthma (2007)	6.7 million49
People under age 18 with an asthma attack in last 12 months (2007)	3.8 million*
Annual number of cases of the common cold	>1 billion50
Number of discharges attributable to pneumonia (2007)	1.17 million51
Cost
Total cost of lung diseases (2009 est.)	$177.4 billion6
Direct medical costs of lung diseases (2009 est.)	$113.6 billion6
Total cost of upper respiratory infections (annual est.)	$40 billion52
Total cost of asthma (2007 est.)	19.7 billion53
Direct medical costs of asthma (2007 est.)	$14.7 billion53
Cost-effectiveness of influenza immunization	$0-$14,000/QALY7

* For more information, refer to Akinbami LJ, Moorman JE, Garbe PL, et al. Status of childhood asthma in the United States, 1980-2007. Pediatrics 2009;123:S131-S145.

Prevention: Pneumococcal Vaccination

Vaccination is an effective strategy for reducing illness, death, and disparities associated with pneumococcal disease and influenza.^54,55

Figure 2.20. Adults age 65 and over who ever received pneumococcal vaccination, by race, ethnicity, and income, 2000-2007

          

Source: Centers for Disease Control and Prevention, National Center for Health Statistics, National Health Interview Survey, 2000-2007.

Denominator: Civilian noninstitutionalized population age 65 and over.

Note: Data were insufficient for this analysis for Native Hawaiians and Other Pacific Islanders (NHOPIs) and for American Indians and Alaska Natives (Chapter 4 has data for NHOPIs).

• From 2000 to 2007, the overall percentage of adults age 65 and over who ever received pneumococcal vaccination improved from 53.4% to 57.8% (data not shown). Improvements were observed for all groups except for Asians, which decreased from 42.2% to 34.5% (Figure 2.20).
• In 2007, the percentage of adults age 65 and over who ever had pneumococcal vaccination was significantly lower for Blacks than for Whites (44.4% compared with 60.0%). For Asians, the percentage of adults age 65 and over who ever had pneumococcal vaccination was significantly lower, at almost half the percentage for Whites (34.5% compared with 60.0% for Whites).
• In 2007, the percentage of Hispanic adults age 65 and over who ever had pneumococcal vaccination continued to be significantly lower, at about half that of non-Hispanic Whites (32.4% compared with 62.1%).
• In 2007, the percentage was significantly lower for poor older adults than for high-income older adults (48.6% compared with 61.0%).
• In 2007, none of the groups achieved the Healthy People 2010 target of 90% of adults age 65 and over having received pneumococcal vaccination.

Racial and ethnic minorities are disproportionately of lower income and education. To distinguish the effects of race, ethnicity, income, and education on pneumococcal vaccination, this measure is stratified by income and education level.

Figure 2.21. Adults age 65 and over who ever received pneumococcal vaccination, by race and ethnicity, stratified by income, 2007

          

Source: Centers for Disease Control and Prevention, National Center for Health Statistics, National Health Interview Survey, 2007.

Denominator: Civilian noninstitutionalized population age 65 and over.

Note: Age adjusted to the 2000 U.S. standard population. Data were insufficient for this analysis for Asians, Native Hawaiians and Other Pacific Islanders, and American Indians and Alaska Natives.

• At all income levels, Blacks were less likely than Whites to ever have had a pneumococcal vaccination (Figure 2.21).
• At all income levels, Hispanics were less likely than non-Hispanic Whites to ever have had a pneumococcal vaccination. Among poor and middle-income older adults, Hispanics were both less than half as likely as non-Hispanic Whites to receive this preventive care.

Figure 2.22. Adults age 65 and over who ever received a pneumococcal vaccination, by race and ethnicity, stratified by education, 2007

          

Source: Centers for Disease Control and Prevention, National Center for Health Statistics, National Health Interview Survey, 2007.

Denominator: Civilian noninstitutionalized population age 65 and over.

Note: Age adjusted to the 2000 U.S. standard population. Data were insufficient for this analysis for Asians, Native Hawaiians and Other Pacific Islanders, and American Indians and Alaska Natives.

• With the exception of Blacks with at least some college education, Blacks and Hispanics at all education levels were significantly less likely than Whites to ever have had a pneumococcal vaccination (Figure 2.22).

Treatment: Receipt of Recommended Care for Pneumonia

Older adults are at high risk for pneumonia. The highest rate of hospitalizations for pneumonia occurs in the population age 65 and over—220.4 per 10,000 population for this group in 2004, compared with 45.5 per 10,000 for the overall population.⁵⁶ The Centers for Medicare & Medicaid Services (CMS) tracks a set of measures for quality of pneumonia care for hospitalized patients from the CMS Quality Improvement Organization (QIO) Program. This set of measures has been adopted by the Hospital Quality Alliance (HQA). The NHDR shows a composite measure of recommended hospital care that includes five separate measures (listed in the note for Figure 2.23). For further details on composite measures, refer to Chapter 1, Introduction and Methods.

Figure 2.23. Composite measure: Medicare hospital patients with pneumonia who received recommended hospital care, by race/ethnicity, 2007

Key: AI/AN = American Indian or Alaska Native.

Source: Centers for Medicare & Medicaid Services, Quality Improvement Organization Program, 2007.

Denominator: Patients with pneumonia who are hospitalized, all ages.

Note: In 2007, the measure of initial antibiotic dose changed from within 4 hours to within 6 hours of hospital arrival. Whites, Blacks, Asians, and AI/ANs are non-Hispanic groups. Composite includes the following five measures: (1) receipt of antibiotics within 6 hours, (2) receipt of appropriate antibiotics, (3) receipt of blood culture before antibiotics, (4) receipt of influenza screening (i.e., person is assessed as to whether he or she would be a good candidate for vaccination) or vaccination, and (5) receipt of pneumococcal screening or vaccination. Composite is calculated by averaging the percentage of opportunities for care in which the patient received all five incorporated components of care. For further details on composite measures, refer to Chapter 1, Introduction and Methods. The denominator used to calculate these measures was refined in 2005 to exclude patients with health care-associated pneumonia. The percentage of Medicare beneficiaries with blood cultures within 24 hours of hospital arrival was changed to include in the denominator only patients who were admitted to the intensive care unit within 24 hours of hospital arrival.

• In 2007, the percentage of patients with pneumonia who received recommended hospital care was significantly lower for Blacks (81.5%), Asians (81.6%), American Indians and Alaska Natives (80.9%), and Hispanics (79.6%) compared with Whites (85.9%).

Management: Daily Asthma Medication

Improving quality of care for people with asthma can reduce the occurrence of asthma attacks and avoidable hospitalizations. The National Asthma Education and Prevention Program, coordinated by the National Heart, Lung, and Blood Institute, develops and disseminates science-based guidelines for the diagnosis and management of asthma.⁵⁷ These recommendations are built around four essential components of asthma management critical for effective long-term control of asthma: assessment and monitoring, control of factors contributing to symptom exacerbation, pharmacotherapy, and education for partnership in care.⁵⁸

Daily long-term controller medication is necessary to prevent exacerbations and chronic symptoms for all patients with persistent asthma. Appropriate controller medications for people with mild persistent asthma^59,xii include inhaled corticosteroids, cromolyn, nedocromil, theophylline, and leukotriene modifiers.⁶⁰

Figure 2.24. People with current asthma who are now taking preventive medicine daily or almost daily (either oral or inhaler), by race, ethnicity, income, and education, 2003-2006

          

 

Denominator: Noninstitutionalized population with asthma, as defined below.

Source: Agency for Healthcare Research and Quality, Medical Expenditure Panel Survey, 2003-2006.

Note: People with current asthma are defined as people who report they either still have asthma or had an episode or attack in the last 12 months. Data were insufficient for this analysis for Asians, Native Hawaiians and Other Pacific Islanders, and American Indians and Alaska Natives.

• From 2003 to 2006, there were no statistically significant changes over time for any group in the percentage of people with current asthma who are taking daily preventive medicine, except for non-Hispanic Whites, whose rates improved (Figure 2.24).
• From 2003 to 2006, the gap between Blacks and Whites increased. In 2006, Blacks with current asthma were less likely than Whites with current asthma to take daily preventive medicine (24.6% compared with 33.6%).
• From 2003 to 2006, the gap between Hispanics and non-Hispanic Whites increased. In 2006, Hispanics with current asthma were less likely than non-Hispanic Whites with current asthma to take daily preventive medicine (23.2% compared with 35.1%).
• From 2003 to 2006, there were no statistically significant changes overall by income or education in the percentage of people with current asthma who took daily preventive medicine.
• From 2003 to 2006, the gap between high-income people and people at other income levels closed. The differences in the percentage of people with current asthma taking daily preventive medicine are no longer statistically significant.
• From 2003 to 2006, the gap between people with less than a high school education and those with at least some college education closed. There were no statistically significant differences by education in 2006.

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Lifestyle Modification

Mortality
Number of deaths per year attributable to smoking (2000-2004)	443,00061
Prevalence
Number of adult current cigarette smokers (2007)	43.4 million62
Number of obese adults (2005-2006)	≥72 million63
Number of adults with no leisure-time physical activity (2007)	84.8 million64
Cost
Total cost of smoking (2000-2004 est.)	$193 billion61
Total health care cost related to obesity (2008 est.)	$147 billion65

Unhealthy behaviors place many Americans at risk for a variety of diseases. Helping patients choose and maintain healthy lifestyles is a critical role of health care. The NHDR tracks two measures related to healthy lifestyles, counseling about quitting smoking and counseling about healthy eating.

Prevention: Counseling Smokers To Quit Smoking

Smoking adversely affects health in a variety of ways and has been linked to cancer, heart disease and stroke, and respiratory diseases. Approximately 135,000 (23%) heart disease deaths in the United States for both men and women are related to smoking.⁶⁶ Cigarette smoking increases the risk of dying from coronary heart disease (CHD) two-to threefold.⁶⁶ The risk of dying from lung cancer is more than 22 times as high among men who smoke cigarettes, and the risk for a number of other cancers is also significantly increased.

Rates of cancers related to cigarette smoking vary widely among members of racial and ethnic groups but are highest among American Indian and Alaska Native adults and lowest among Asian adults.⁶² In addition, 90% of all deaths from chronic obstructive pulmonary disease (COPD) are attributable to cigarette smoking. Smoking is associated with a 10-fold increase in the risk of developing COPD.

Smoking is a modifiable risk factor, and health care providers can encourage patients to quit smoking. Current evidence suggests that patients who received even brief advice from a physician to quit smoking were more likely to quit smoking than those who received no advice.⁶⁷ Among other benefits of quitting, the risk of developing CHD attributed to smoking can be decreased by 50% after one year of cessation. That is notable given the effect that CHD can have on health.⁶⁸

Figure 2.25. Adult current smokers under age 65 with a checkup in the last 12 months who received advice from a doctor to quit smoking, by race/ethnicity, income, and education, 2006

Source: Agency for Healthcare Research and Quality, Medical Expenditure Panel Survey, 2006.

Denominator: Civilian noninstitutionalized adult current smokers under age 65 who had a checkup in the last 12 months.

• In 2006, 64.4% of adult current smokers under age 65 with a checkup in the last 12 months received advice to quit smoking (Figure 2.25).
• From 2002 to 2006, rates of advice to quit smoking did not change overall or for any racial or ethnic group (data not shown).
• In 2006, Hispanic adults were less likely to receive advice to quit smoking compared with non-Hispanic White adults (53.4% compared with 64.9%).

Prevention: Counseling Obese Adults About Healthy Eating

Physician-based exercise and diet counseling is an important component of effective weight loss interventions,⁶⁹ and it has been shown to produce increased levels of physical activity among sedentary patients.⁷⁰ Not every obese person needs counseling about exercise and diet, but many would likely benefit from improvements in these activities. Regular exercise and a healthy diet aid in maintaining normal blood cholesterol levels, weight loss, and blood pressure control efforts, reducing the risk of heart disease, stroke, diabetes, and other comorbidities of obesity.

Figure 2.26. Adults with obesity who ever received advice from a health provider about eating fewer high-fat or high-cholesterol foods, by race, ethnicity, income, and education, 2002-2006

          

          

Source: Agency for Healthcare Research and Quality, Medical Expenditure Panel Survey, 2002-2006.

Denominator: Civilian noninstitutionalized population age 18 and over.

Note: Obesity is defined as a body mass index of 30 or higher. Data were insufficient for this analysis for Asians, Native Hawaiians and Other Pacific Islanders, and American Indians and Alaska Natives, as well as in 2002 for people of more than one race.

• From 2002 to 2006, there were no statistically significant changes in the percentage of obese adults who were given advice about eating fewer high-fat or high-cholesterol foods, with the exception of Hispanics, which increased (from 35.6% to 42.2%; Figure 2.26).
• In 2006, the percentage was significantly lower for Blacks than for Whites (44.5% compared with 51.5%) and for Hispanics compared with non-Hispanic Whites (42.2% compared with 53.6%).
• In 2006, the percentage of obese adults who received advice about eating fewer high-fat or high-cholesterol foods was significantly lower for poor, near-poor, and middle-income adults compared with high-income adults (43.3%, 46.6%, and 47.4%, respectively, compared with 56.8%).
• In 2006, the percentage of obese adults who were given advice about eating fewer high-fat or high-cholesterol foods was significantly lower for people with less than a high school education compared with people with some college education (45.7% compared with 53.4%).

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Functional Status Preservation and Rehabilitation

Prevalence
Noninstitutionalized adults needing help of another person with activities of daily living (ADLs) (2007)	44.4 million71
Noninstitutionalized adults age 75 years and over needing help of another person with ADLs (2007)	11%71
Noninstitutionalized adults needing help with instrumental activities of daily living (IADLs) (2007)	8.6 million71
Noninstitutionalized adults age 75 years and over needing help with IADLs (2007)	20%71
Nursing home residents needing help with ADLs (2004)	1.5 million72
Cost
Medicare payments for outpatient physical therapy (2006 est.)	$3.1 billion73
Medicare payments for outpatient occupational therapy (2006 est.)	$747 million73
Medicare payments for outpatient speech-language pathology services (2006 est.)	$270 million73

Note: Cost estimates for nursing home and home health services include costs only for freestanding skilled nursing facilities, nursing homes, and home health agencies, not facilities that are hospital based.

A person's ability to function can decline with disease or age. Some health care interventions can help prevent diseases that commonly cause declines in functional status. Other interventions can help patients regain function that has been lost. This section highlights one measure of prevention (osteoporosis screening in women) and one measure of home health care quality (improvement in walking or moving around).

Prevention: Osteoporosis Screening in 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.⁷⁴ Women represent two-thirds of those at risk for or diagnosed with osteoporosis.

Osteoporosis increases the risk of fractures of the hip, spine, and wrist, and about half of all postmenopausal women will experience an osteoporotic fracture.⁷⁵ 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.⁷⁶

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.⁷⁷

Figure 2.27. 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, and income, 2001, 2003, and 2006

          

Source: Medicare Current Beneficiary Survey, 2001, 2003, and 2006.

Denominator: Female Medicare beneficiaries age 65 and over living in the community.

• From 2001 to 2006, 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 and among all racial, ethnic, and income groups.
• In 2006, the percentage of female Medicare beneficiaries age 65 and over who reported ever being screened for osteoporosis was significantly lower among Blacks compared with Whites (38.3% compared with 67.1%; Figure 2.27).
• In 2006, the percentage of female Medicare beneficiaries age 65 and over who reported ever being screened for osteoporosis was significantly lower among Hispanics compared with non-Hispanic Whites (55.3% compared with 67.8%).
• In 2006, the percentage of female Medicare beneficiaries age 65 and over who reported ever being screened for osteoporosis was significantly lower for all income groups compared with the high-income group (poor, 46.4%; near poor, 56.8%; and middle income, 72.3%, compared with 80.4%).

Outcome: Improvement in Ambulation in Home Health Care Patients

How well a patient improves in ability level while getting home health care is a reflection of the provider's quality of service; patient factors, such as mobility and fear of falling; and the patient's available support system. Improved ambulation (i.e., getting better at walking or using a wheelchair) is a measure of improved outcomes.^xiii

Figure 2.28. Adult home health care patients whose ability to walk or move around improved, by race and ethnicity, 2002-2007

          

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), 2002-2007.

Denominator: Episodes for adult nonmaternity patients receiving at least some skilled home health care.

Note: An episode is a 60-day period during which a patient is under the direct care of a home health agency. It starts with the beginning/resumption of care and finishes when the patient is discharged from home health care or is transferred to an inpatient facility. Some patients have multiple episodes in a year. Data are reported only for those patients who were not already performing at the highest level of ambulation.

• From 2002 to 2007, the percentage of home health care patients who got better at walking or moving around improved for the total population (from 33.9% to 43.3%), as well as for each racial and ethnic group.
• In 2007, Blacks and AI/ANs were less likely than Whites to get better at walking or moving around (40.3% for Blacks and 42.1% for AI/ANs compared with 43.6% for Whites; Figure 2.28). Asians and NHOPIs were more likely than Whites to get better at walking or moving around (47% for Asians and 47.5% for NHOPIs compared with 43.6% for Whites).
• In 2007, the rate of Hispanic home health patients who got better at walking or moving around was lower than for non-Hispanic White patients (42.0% compared with 43.6%).

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Supportive and Palliative Care

Prevalence
Number of nursing home residents ever admitted during the calendar year (2007)	3,196,31078
Number of fee-for-service (FFS) home health patients (2006)	3,031,81479
Number of Medicare FFS beneficiaries using Medicare hospice services (2006)	935,56580
Cost
Total costs of nursing home care (2007 est.)	$131.3 billon81
Total costs of home health care (2007 est.)	$59 billion81
Medicare FFS payments for hospice services (2008 est.)	$11.2 billion82

Note: Cost estimates for nursing home and home health services include costs only for freestanding skilled nursing facilities, nursing homes, and home health agencies, not facilities that are hospital based.

This section highlights two core measures of nursing home quality of care: use of physical restraints and presence of pressure sores. It also includes one measure of home health care quality: episodes with acute care hospitalization. In addition, this section includes supplemental measures on referral to hospice at the right time and management of pain in hospice care.

Management: Use of Physical Restraints on Nursing Home Residents

Although restraining nursing home residents is sometimes a component of keeping residents safe and well cared for, residents who are restrained daily can become weak, lose their ability to go to the bathroom by themselves, and develop pressure sores or other medical complications. Restraints should be used only when they are necessary as part of medical treatment.

Figure 2.29. Long-stay nursing home residents with physical restraints, by race/ethnicity, 2000-2007

Key: AI/AN = American Indian or Alaska Native; API = Asian or Pacific Islander.

Source: Centers for Medicare & Medicaid Services, Minimum Data Set, 2000-2007. Data are from the third quarter of each calendar year.

Denominator: Long-stay nursing home residents, all ages.

Note: White, Black, API, and AI/AN are non-Hispanic groups. Long-stay residents are people in an extended/permanent nursing home stay.

• From 2000 to 2007, the percentage of long-stay nursing home residents who were physically restrained decreased from 10.4% to 5.0% (Figure 2.29).
• From 2000 to 2007, the gap between APIs and Whites in the percentage of residents who were physically restrained decreased. However, in 2007, the percentage of residents who were physically restrained was still higher for APIs than for Whites (6.0% compared with 5.0%).
• From 2000 to 2007, the gap between Hispanics and Whites decreased. However, in 2007, the percentage of residents who were physically restrained was still higher for Hispanics than for Whites (7.0% compared with 5.0%).

Outcome: Pressure Sores in 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. 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 2.30. High-risk long-stay nursing home residents (left) and short-stay residents (right) with pressure sores, by race/ethnicity, 2000-2007

          

Key: AI/AN = American Indian or Alaska Native; API = Asian or Pacific Islander.

Source: Centers for Medicare & Medicaid Services, Minimum Data Set, 2000-2007. 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: Long-stay nursing home residents and short-stay nursing home residents.

Note: White, Black, API, and AI/AN are non-Hispanic groups. Long-stay residents are people in an extended/permanent nursing home stay. Short-stay residents are people who need skilled nursing care or rehabilitation services following a hospital stay but are expected to return home.

High-risk long-stay nursing home residents

• From 2000 to 2007, the percentage of high-risk^xiv long-stay residents who developed pressure sores decreased from 13.9% to 12.0% (Figure 2.30). Improvements were observed for all groups.
• In 2007, the percentage of high-risk long-stay residents who developed pressure sores was significantly higher for Blacks (15.5%), AI/ANs (13.1%), and Hispanics (13.4%) than for Whites (11.3%).
• In 2007, the percentage of high-risk long-stay residents who developed pressure sores was significantly higher for males than for females (14.8% compared with 11.0%; data not shown).

Short-stay nursing home residents

• From 2000 to 2007, the percentage of short-stay residents who had pressure sores decreased significantly for all groups (Figure 2.30).
• In 2007, Black (22.7%), API (20.8%), and AI/AN (21.0%) short-stay residents were still more likely than Whites (19.0%) to have pressure sores.
• In 2007, Hispanic short-stay residents were still more likely than Whites to have pressure sores (23.3% compared with 19.0%).
• In 2007, the percentage of short-stay residents who had pressure sores was higher for males than for females (21.8% compared with 18.3%; data not shown).

Outcome: Acute Care Hospitalization of Home Health Care Patients

Improvement in the acute care hospitalization outcome is demonstrated by a decrease in the percentage of patients who had to be admitted to the hospital; lower percentages are desirable. Acute care hospitalization may be avoided if home health staff adequately check the patient's health condition at each visit to detect problems early. However, patients may need to enter the hospital while they are getting home health care. In some cases, this may not be avoidable even with good home health care.

Figure 2.31. Adult home health care patients who were admitted to the hospital, by race and ethnicity, 2002-2007

          

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, 2002-2007.

Denominator: Episodes for adult nonmaternity patients receiving at least some skilled home health care.

Note: An episode is the time during which a patient is under the direct care of a home health agency. It starts with the beginning/resumption of care and finishes when the patient is discharged from home health care or is transferred to an inpatient facility. Some patients have multiple episodes in a year.

• In 2007, the percentage of home health care patients admitted to the hospital was higher for Blacks than for Whites (33.8% compared with 27.2%; Figure 2.31).
• The gap increased between AI/ANs and Whites in the percentage of home health care patients who were admitted to the hospital. In 2007, the percentage was higher for AI/ANs than for Whites (33.1% compared with 27.2%).
• In 2007, the percentage was lower for Asians than for Whites (22.6% compared with 27.2%).
• In 2007, the percentage was higher for Hispanics than for non-Hispanic Whites (31.0% compared with 27.2%).

Management: Referral to Hospice Care at the Right Time

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 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."⁸³

The National Hospice and Palliative Care Organization's Family Evaluation of Hospice Care survey examines the quality of hospice care for patients and their family members.^xv Family respondents report how well hospices respect patient wishes, communicate about illness, control symptoms, support dying on one's own terms, and provide family emotional support.⁸⁴

Research suggests that late referral to hospice results in unmet needs for some patients and caregivers.⁸⁵ Therefore, the perception of timeliness of referral is an indicator of adequacy of access to hospice care.

Figure 2.32. Hospice patient caregivers who perceived patient was NOT referred to hospice at the right time, by race, ethnicity, and education, 2008

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.

Denominator: Adult hospice patients.

Note: Caregivers were family members who interacted with hospice providers.

• Overall in 2008, 11.3% of hospice patient caregivers perceived hospice patients were not referred to hospice care at the right time (Figure 2.32).
• The percentage of caregivers who perceived hospice care was not referred at the right time was lower for Blacks than for Whites (11.6% compared with 12.0%).
• The percentage of caregivers who perceived hospice care was not referred at the right time was higher for AI/ANs than for Whites (14.8% compared with 12.0%).
• The percentage of caregivers who perceived hospice care was not referred at the right time was lower for caregivers with less than a high school education (8.8%) and high school graduates (9.6%) than for caregivers with any college education (13.5%).
• The percentage of caregivers who perceived hospice care was not referred at the right time was higher for females than for males (12.9% compared with 9.6%; data not shown).

Management: Receipt of Right Amount of Pain Medicine by Hospice Patients

Addressing the comfort aspects of care, such as relief from pain, fatigue, and nausea, is an important component of hospice care.^xvi

Figure 2.33. Hospice patients who did NOT receive the right amount of medicine for pain, by race, ethnicity, and education, 2008

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.

Denominator: Adult hospice patients.

• In 2008, the percentage of hospice patients whose families reported that they did not receive the right amount of medicine for pain was 5.5% (Figure 2.33).
• The percentage of hospice patients whose families reported that they did not receive the right amount of medicine for pain was significantly higher for Blacks (8.4%) and APIs (10.6%) than for Whites (5.4%).
• The percentage of hospice patients whose families reported that they did not receive the right amount of medicine for pain was also higher for Hispanics than for non-Hispanic Whites (7.0% compared with 5.4%).

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^xi Chronic lower respiratory diseases include emphysema and chronic bronchitis.
^xii "Mild persistent asthma" refers to cases in which people experience asthma symptoms more than 2 days per week and more than 2 nights per month, as well as other clinical indicators.
^xiii 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 service provides good care.
^xiv "High-risk" residents are those who are in a coma, who do not get or absorb the nutrients they need to maintain skin health, or who cannot move or change position on their own. Conversely, "low-risk" residents can be active, can change positions, and are getting and absorbing the nutrients they need.
^xv This annual 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%. In addition, race and ethnicity were not reported by large numbers of respondents. These limitations should be considered when interpreting these findings.
^xvi This measure is based on responses from a family member of the deceased patient. It should be noted that family members may or may not be able to determine whether the right amount of medicine for pain was administered.

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