Chapter 2. Effectiveness (continued, 4)

 

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 millio94
Noninstitutionalized adults age 75 years and over needing help with IADLs (2009)	20%94
Nursing home residents needing help with ADLs (2004)	1.5 million94
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. 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. Some health care interventions can help prevent diseases that commonly cause declines in functional status. 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 NHQR 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 for 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. The remaining 13 percent have other outcomes.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 2.36. Female Medicare beneficiaries age 65 and over who reported ever being screened for osteoporosis with a bone mass or bone density measurement, by geographic location, 2001, 2003, 2006, and 2008

Key: MSA = metropolitan statistical area.
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 about 10% per year overall and among women living inside and outside metropolitan areas (Figure 2.36).
• In 2003, 2006, and 2008, 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.

Also, in the NHDR:

• 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 and among Hispanics compared with non-Hispanic Whites.
• The percentage of female Medicare beneficiaries screened for osteoporosis was lower for poor, near-poor, and middle-income women than for high-income women.
• The percentage screened for osteoporosis also was lower for beneficiaries with three or more activity limitations than for beneficiaries with no functional limitations.

Outcome: Improvement in Ambulation Among 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 2.37. Adult home health care patients whose ability to walk or move around improved, by age, 2002-2008

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 increased for the total population (from 33.9% to 44.9%), as well as for every age group (Figure 2.37).
• In all years, patients age 85 and over were less likely to show improvement compared with patients ages 65-74. These patients may have higher levels of disability or infirmity than younger patients that make improvements in mobility harder to achieve.
• 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 by age. Patients ages 65-74 and 75-84 could attain the benchmark sooner than 5 years while patients age 85 and over would not attain the benchmark for 8 years.

Also, in the NHDR:

• Although the percentage of home health care patients who got better at walking or moving around improved for each racial and ethnic group from 2002 to 2008, rates of improvement varied. Populations with lower rates of improvement include Blacks, AI/ANs, multiple-race patients, and Hispanics.

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 ADLs, 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 2.38. Long-stay nursing home residents whose need for help with daily activities increased, by age, 2000-2008

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.

• In 2008, 16.2% of long-stay nursing home residents had increased need for help with daily activities (Figure 2.38). The overall percentage of long-stay nursing home residents who needed help with daily activities did not change between 2000 and 2008. The rate increased among residents ages 0-64 and ages 65-74.
• In all years, residents ages 0-64 were less likely to need increasing help with daily activities compared with residents ages 65-74. Before 2007, residents ages 75-84 and age 85 and over were significantly more likely to need increasing help with daily activities compared with residents ages 65-74.
• The 2008 top 5 State achievable benchmark was 12.7%.^xxxii In 2008, residents ages 0-64 had rates better (lower) than the benchmark; however, their rates were increasing over time. There was no evidence that the overall rate or rates for other age groups were getting closer to the benchmark.

Also, in the NHDR:

• API, AI/AN, and Hispanic residents were less likely to need increasing help with daily activities compared with Whites. 

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 NHQR tracks several measures of supportive and palliative care delivered by home health agencies, nursing homes, and hospices. The 6 supporting measures, which are organized around the NPP goals, include:

• 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 services
  • Care consistent with patient's wishes among hospice patients.
  • Availability of nonhospice palliative care.

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

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 overall who had less shortness of breath increased from 53.3% to 60.5% (Figure 2.39), as well as for every age group.
• From 2006 to 2008, patients ages 18-64 years were significantly less likely than patients ages 65-74 to have experienced less shortness of breath. Medicare patients under age 65 are usually disabled or have ESRD.
• 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. Patients ages 65-74 and 75-84 could attain the benchmark sooner than 5 years while patients ages 18-64 and age 85 and over would not attain the benchmark for between 6 and 8 years.

Also, in the NHDR:

• Between 2002 and 2008, the percentage of adult home health care patients who had less shortness of breath increased for each racial and ethnic group.
• Populations with lower rates of improvement include Blacks, AI/ANs, and Hispanics.

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 2.40. Short-stay (left) and high-risk long-stay (right) nursing home residents with pressure sores, by gender, 2000-2008

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.

• From 2000 to 2008, the rate of short-stay residents with pressure sores fell from 22.6% to 18.9% ( Figure 2.40). ^xxxvi For high-risk long-stay residents, the rate fell from 13.9% to 11.7%. ^xxxvii Improvements included rates for both males and 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.
• In all years, males were more likely than females to have pressure sores.
• The 2008 top 5 State achievable benchmark for short-stay residents was 12.0%.^xxxviii At the current 2% annual rate of decrease, this benchmark could be attained overall in about 16 years. Females could attain this rate in 13 years while males would need 20 years.
• The 2008 top 5 State achievable benchmark for high-risk long-stay residents was 7.1%.^xxxix At the current 2% annual rate of decrease, this benchmark could be attained overall in about 16 years. Females could attain this rate in 11 years; males would need 27 years.

Also, in the NHDR:

• Groups with slow rates of improvement include APIs, AI/ANs, and Hispanics.

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 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

Dying is a stressful process. 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 2.41. Hospice patients age 18 and over who did NOT receive the right amount of help for feelings of anxiety or sadness, by age, 2008-2009

Source: National Hospice and Palliative Care Organization, Family Evaluation of Hospice Care, 2008-2009.
Denominator: Adult hospice patients.

• The percentage 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 (Figure 2.41).
• In all years, hospice patients ages 18-44 and ages 45-64 were less likely than patients age 65 and over 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 NHDR:

• In all years, Blacks, APIs, AI/ANs, and Hispanics were less likely than Whites 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 patients' values and preferences, accepting of different cultural and religious choices, and committed to continuing care regardless of patient treatment decisions.

 

Figure 2.42. Hospice patients age 18 and over whose family caregivers wanted more information about what to expect while the patient was dying, by age, 2008-2009

Source: National Hospice and Palliative Care Organization, Family Evaluation of Hospice Care, 2008-2009.
Denominator: Adult hospice patients.

• The percentage 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 (Figure 2.42).
• In all years, family caregivers of hospice patients ages 18-44 and ages 45-64 were more likely than family caregivers of patients age 65 and over 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 NHDR:

• In all years, family caregivers of API, AI/AN, and Hispanic patients were more likely than family caregivers of White patients to want more information about dying.
• Family caregivers of male hospice patients were more likely than family caregivers of female patients to want more information about dying.

High-Quality Palliative 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 2.43. Hospice patients age 18 and over who did NOT receive care consistent with their stated end-of-life wishes, by age, 2005-2009

Source: National Hospice and Palliative Care Organization, Family Evaluation of Hospice Care, 2005-2009.
Denominator: Adult hospice patients.

• The percentage 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 (Figure 2.43).
• In 2009, there were no significant differences for hospice patients among age groups in receiving end-of-life care consistent with their wishes.

Structure: Availability of Palliative and Hospice Care

Use of hospice care services varies widely across the Nation. For example, among Medicare beneficiaries age 65 and over who died in 2002, the percentage who had received hospice care in the year prior to death varied from 8% in Alaska and 14% in Maine to 45% in Colorado and 49% in Arizona.¹⁰⁸

Rates of disenrollment from hospice prior to death also vary geographically. Among hospices serving Medicare patients with terminal cancer, the average hospice disenrollment rate was 15% and rates varied from 11% in the East North Central region of the country to 21% in the East South Central region.¹⁰⁹ Patients who disenroll from hospice are more likely to be admitted to an emergency room, hospital, or intensive care unit and to die in the hospital. They incur expenditures between hospice enrollment and death that average $30,848 per person compared with $6,537 for patients that stay with hospice.¹¹⁰

Use of palliative care services independent of hospice or use of nonhospice palliative care services is affected by the availability of palliative care providers. Hospitals are critical providers of palliative care. The Center to Advance Palliative Care and the National Palliative Care Research Center have developed a methodology to measure the availability of hospital-based palliative care. This method tracks the percentage of mid-size and large hospitals (50 or more beds) that reported having a palliative care program in the American Hospital Association Annual Survey. Results from their 2008 report on geographic variation in availability of hospital palliative care are presented below.¹¹¹

 

Figure 2.44. Mid-size and large hospitals with palliative care program, by region, 2006

Source: Center to Advance Palliative Care analyses of 2006 American Hospital Association Annual Survey.
Denominator: Mid-size and large hospitals (50 or more beds).

• The percentage of mid-size and large hospitals who report palliative care programs in 2006 ranged from 35% in the West to 50% in the Midwest (Figure 2.44).
• The 2006 top 5 State achievable benchmark was 86%.^xliii

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^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 that contributed 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 those 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 Short-stay residents stay fewer than 30 days in a nursing home, typically following an acute care hospitalization.
^xxxvii 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. 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.
^xxxviii The top 5 States that contributed to the achievable benchmark are Colorado, Iowa, Minnesota, Nebraska, and Utah.
^xxxix The top 5 States that contributed to the achievable benchmark are Hawaii, Minnesota, Nebraska, New Hampshire, and North Dakota.
^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 that contributed to the achievable benchmark are Alabama, Arkansas, Kansas, Rhode Island, and South Carolina.
^xlii The top 5 States contributing to the achievable benchmark are Iowa, Kansas, Kentucky, Nebraska, and West Virginia.
^xliii The top 5 States that contributed to the achievable benchmark are Montana, New Hampshire, South Dakota, Vermont, and the District of Columbia.

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