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Problems Identified in the End of Life Community in Concord, North Carolina

A complete community assessment has been performed including key informant interviews, epidemiology/demographic research, attainment of information regarding health care services, and assessment of cultural and history background information. This information was collected and utilized to identify end of life key problems, objectives and interventions related to the 28027 community. Unfortunately, the majority of statistics and research findings collected related to either North Carolina or Cabarrus County, as a whole, limited information regarding the actual zip code was present. However, these findings seem to be correlate to the health issues related to the end of life population observed in the 28027 area. In order of priority, the major health concerns of the end of life population in 28027 are: lack of utilization of end of life care due to insufficient knowledge and availability of information about services, safety, and transportation. The information presented below represents why these are the major issues of this population and solidify our arguments towards the three main health concerns for this population. In our key informant interview with both Janice Honeycutt and Coney Rarey, lack of education regarding end of life services was indicated as the primary issue with this population. Both, Ms. Honeycutt and Ms. Rarey, indicated that initiatives were in place to increase awareness of hospice and palliative care services and increase utilization of these services both at home and in the hospital setting, however, barriers are still present.

1. Lack

of Utilization of End of Life Care Due to Insufficient Knowledge and

Availability of Information about Services

Three components contribute to this issue in the Concord Community: o No information visible in the community related to end-of-life care and resources o Deficiency in provider knowledge about benefits of end-of-life resources evidence by late referrals to end-of-life care o Community misconceptions about the purpose and benefits of end-of-life care (fear associated with utilization of these services)

In 2008, approximately 35.4% of those served by hospice died or were discharged in seven days or less (National Hospice and Palliative Care Organization). This number reflects the pervasive problem in end-of-life care that is seen on a national level and is also evident in the Concord community. There are many barriers to utilization of end-oflife services, but lack of education of healthcare professionals and the community as a whole is one of the biggest contributors. Number of Medicare-certified Hospices and Program Payments, by State, 2007 # of persons 32,086 # of Hospice Average Length of Days Stay 2,394,987 75 Program Payments ($ Thousands) 336,582

State NC

# of Hospices 82

Source: Centers for Medicare & Medicaid Services, Health Care Information System

Healthcare provider¶s knowledge and communication regarding end-of-life care plays a key role in hospice and palliative care utilization because they are the gatekeepers to patients obtaining these services. Many barriers to end-of-life care by healthcare providers relate to incorrect knowledge, unfavorable attitudes toward hospice and deficient knowledge of palliative medicine. Research indicates that many healthcare providers feel uncomfortable regarding the care of

terminally ill patients and the vast majority correlated this deficiency with the lack of education and training (Forcina Hill, 2005). These reports were supported by a 2004 study that found only 126 medical schools in the United States offered courses in palliative care to students (Forcina Hill, 2005). In addition, one study found that only 12% of practicing physicians are aware of the prognostic guideline set forth by the National Hospice and Palliative Care Organization and 84% are unable to recognize appropriate diagnoses based on these guidelines (Forcina Hill, 2005). This problem is not unique to medical staff, nurses as a whole are also considered deficient in knowledge related to hospice and palliative care. In 2002, only 3% of nursing schools reported having a course dedicated to end-of-life care and less than 0.5% of nurses are certified in palliative care (Forcina Hill, 2005). Ninety eight percent of nurses interviewed in the above mentioned study reported that end-of-life care was important but stated they felt ill prepared to effectively provide this care (Forcina Hill, 2005).

In addition to lack of basis knowledge regarding hospice and palliative care option by physicians, many are reluctant to give patients a diagnosis of six months or less and have a great deal of discomfort discussing a negative prognosis with a patient. Physicians overestimate life expectancy of their patients (believe that the patient will live longer than six months). In one study, 59% of 147 physicians reported that making a prognosis of remaining time to live was the most frequent barrier to discussing the hospice option of care (McGorty & Bornstein, 2003). In the same study of 147 physicians, 6% reported discomfort in telling patients about dying issues and sixteen percent felt uncomfortable discussing the patient¶s terminal diagnosis (McGorty & Bornstein, 2003). This inability make a diagnosis of six months or less and to discuss death and dying with patients decrease quality of life of dying patients and decreases the likelihood this population will seek out and utilize these hospice and palliative care services.

This trend of lack of knowledge with end-of-life care options was noted in the Concord community. During our key informant interviews, it was stated that the average number of days patients are on hospice services is less than two weeks. Hospice and Palliative Care of Cabarrus County contributes this statistic in part to the lack of promotion and understanding of hospice and palliative care services by healthcare providers. Patients are unable to reap the benefits of hospice services when a referral is made at a time when the patient only has a few days to live.

Therefore, few in the community understand the benefits and breadth of end-of-life services available.

Education of the end-of-life community and their family members is a large hurdle to increasing the utilization of hospice and palliative care services in Concord. Many patients are reluctant to hear about end-of-life care options, because they feel that just by accepting end-of-life care options they are inherently giving up all hope. This reluctance extends to caregivers and family members who are unwilling to accept a terminal diagnosis. Many fears could be addressed with proper community education and outreach by the end-of-life care community. Community outreach and presence of end-of-life services was not evident during the windshield survey conducted of Concord. Hospice and Palliative Care of Cabarrus County identified this as an issue during the key informant interview. This organization noted that many satisfaction surveys sent out after a patient passes away frequently contain the comment that ³We wish we would have known about your services earlier.´

Education regarding the variety of services is lacking in this community. Many of the outreach programs currently in place are not focused on educating potential patient about the multidisciplinary services offered by hospice and palliative care. These programs mainly focus on bereavement services. In addition, the benefits of these services are often not promoted. This lack benefits focused education does nothing to dismiss many of the negative stereotypes and fears the end-of-life community has about receiving hospice services. Many never learn that hospice care allows terminally ill patients and their families to remain together in the comfort and dignity of their homes during the patient¶s final days.

Until healthcare providers, patients, and families in the Concord community become more comfortable talking about death and the dying process, hospice will remain marginalized as an excellent option for accessing supportive services for the end-of-life community during an extremely difficult time.

2. Safety

o o o o o

safety in the home-many rural homes no sidewalks or cross walks older homes not built to accommodate medical equipment Isolation in homes Availability of appropriate care taker

Community Assessment
Throughout observation of the community many risk factors were evident that indicated the end of life population was at risk for safety issues. One of the major initiatives of Hospice and Palliative Care of Cabarrus County is to reduce falls because of the increase in falls in the end of life population; thus, falls are the major safety focus of the facility. As a result, home safety to prevent falls is one of the major goals of the facility. We recognize that many of our patients live with family members who are not there during the day, thus, they have to take care of themselves and as a result, an increased number of falls occur. Additionally, many homes seen throughout the community windshield survey were older homes, thus the construction of the homes is not as reliable and sturdy. Many of these homes lacked handicap accessibility and assistance devices for the older community. Many of the stores in the area lacked handicap accessibility, when stairs were present no ramp was available for wheelchairs. Handicap parking was accessible, but far away from the entrance of the store/facility, etc. In addition, many roads through the

community were narrow and night lighting was limited, therefore, this increases the elders¶ chances of getting in a wreck. Throughout this community, sidewalks and crosswalks were limited, thus increasing the incidence of death if elders were to attempt to walk on busy roads. When observing the area in and around Popular Tent Road, Derita Road, and Harris Road many of the homes were secluded and far away from one another, thus, if help was needed it would be difficult to obtain.

What is a Fall?
A fall is often defined as ³inadvertently coming to rest on the ground, floor or other lower level, excluding intentional change in position to rest in furniture, wall or other objects´ (Yoshida, n.d.).

Incidence
Falls are the leading cause of injury related visits to the emergency department in the United States and the primary cause of accidental deaths in individuals over 65 years. Falls account for 70% of actually deaths in persons 75 years of age and older (Fuller, 2000). Overall, the elder who represent approximately 12 percent of the population account for nearly 75 percent of death related to falls. Both children and elder persons are at high risk for falls, however, elder persons who fall are ten times more likely to be hospitalized and eight times more likely to die as a result of a fall (Fuller, 2000).

Through evidence and research, findings show that among community-dwelling older people over 64 years of age 28-35% fall each year (Yoshida, n.d.). For those 70 years of age, approximately 32-42% falls each year (Yoshida, n.d.). Thus, the frequency and mortality rate of falls increases with age and frailty level. (Yoshida, n.d.). Consequently, the injury rate for falls in individuals older than 85 years of age is the highest among the elder accounting for approximately 171 deaths per 100,000 persons. (Fuller, 2000).

Evidence also indicates that elders living in nursing homes fall more often than those who live in the community, thus approximately 30-50% of those living in long-term care facilities fall each year and 40% of them fall more than once (Yoshida, n.d.).

Increases with age from 35:1000 for people age 65-69 to 76:1000 for people age 80 and over (Yoshida, 2000). Those 65 years and older the rate of falls serious enough to limit activity was 47.7:1000 (Yoshida, n.d.). Additionally women are more likely to fall than men in all age groups over 65 except those 75-79 years of age; however, the exact cause is unknown (Yoshida, n.d.).

Elders who experience falls experience many health issues as a result. Their hospital stays are nearly twice as long as those who have never fallen, their ability to perform activities of daily living decline, and there is also a decline in physical and social activities (Yoshida, 2000). Falls can be a sign of a nonspecific acute illness. Additionally, they can lead to major injuries such as head trauma and dislocations (Yoshida, 2000).

Trends in Fall Related Fatality Rate
Rates for men and women increased between 1993 and 2003. The men¶s fall rate increased 45% and the women¶s fall rate increased 59% (Yoshida, n.d.).

Risk Factors
Falls are the result of demographic, physical and behavioral risk factors. Among those who suffer from falls in the US, white men, have the highest fatal fall rate followed by white women, black men and black women. Research shows that falls are 33-60% higher among Caucasians than any other race (Yoshida, n.d.). Additionally, socioeconomic status plays a significant role on the incidence of falls. Those who have limited access to health and social services, low income, little education, and poor housing environments are at a higher risk of suffering from falls. Studies also show that women who are socially interactive experience less falls than those who are not (Yoshida, n.d.).

Summary of Biological Risk Factors (Yoshida, 2000)

Age · Fall-related mortality rates increase exponentially with age, with the greatest increase after age. Sex · Women have an injury rate 40-60% higher than men of similar age do. · Women are 2.2 times more likely to suffer fractures as a consequence of falls. Medical Conditions · Diabetic women are 1.6 times more likely to fall and twice as likely to suffer fall-related injuries as women without diabetes. · Approximately 38-68% of Parkinson¶s disease patients experience falls due to gait disturbances. · Depression is associated with a 2.2 fold increased risk of falling but the direction of causality is unknown. · Women with mixed incontinence are three times more likely to fall as women who do not have this condition. · Persons with Alzheimer's disease are twice as likely to fall as people of the same age without this disease. Physical Conditions · Muscle weakness is associated with an almost five times greater risk of falling. · Visual impairment is associated with slowed reaction time, increased body sway, and a 2.3 times increased risk of multiple falls. · Cognitive impairment from dementia and delirium is associated with increased risks ranging from 2.0 to 4.7. · Foot problems, such as severe bunion, toe deformity, ulcer and deformed nails, are associated with a two-fold increased risk of falling. · Low BMI and weight loss are associated with low bone mineral density and an increased risk of fall-related fractures.

Result of Falls

³Falls can result in fractures (64%), fear of falling (44%) and hospital admissions (32%), and reduced quality of life. Falls can also result in a ³post fall syndrome´ that includes dependence (32%), loss of autonomy (14%), confusion (22%), and immobilization (4%), depression (2%), and restrictions in daily activities. Falls are often considered a contributing reason for admission to a nursing home" (Yoshida, n.d.).

3. Transportation

y

Few options for patient to get transpiration to medical appointments

Windshield Survey/Community Assessment
While performing the windshield survey it was evident that there was limited transportation available to community residence. Sidewalks were limited, no taxis were noted, no public buses were noted, and no access to car pool or other resources were available. Although, the key informant interviewees did not recognize transportation as an issue, research and statistics of the county indicate that indeed it is an issue for the elderly population and particularly those of the end of life population who have limited ability to drive themselves. Additionally, due to the high-paced community and need to maintain incoming revenue families are no longer at home with their sick relatives thus limited means of transportation via family/friends is also limited.

Available Resources/Limitations 1. Cabarrus County Transportation Services The purpose of this bus service is to provide eligible candidates transportation to healthcare and improve their quality of life. The service can be used by the elderly for healthcare appointments and pharmacy (for prescription pick-up only).

Limitations:

· The service runs only during business hours, no resource for needs during other hours. · A return trip home following appointment requires the need to make a phone call and may take hours to be picked up. · Eligibility excludes those receiving Medicaid. · Must buy ticket booklet for $30 and turn in ticket for each trip. · Appointments cannot be made on the same day, must be booked by 5 pm the previous day.

2. Cabarrus Links The purpose of this public bus service is to provide Cabarrus County residents with transportation to medical offices, jobs, and shopping. Limitations: -Must pay for each trip. -This service has public drop-off and pick-up areas, it does not provide door-to-door pick-up. -Riders must have access to and know certain bus schedules to catch the bus before and after appointments.

Cabarrus County Planning Council Health Assessment Transportation Needs: According to a community, assessment of Cabarrus County conducted by the Cabarrus County Planning Council, around 47.9% of residents 65 years old and older had a disability. Senior citizens with disabilities are in need of increased accessibility to appointments to not only healthcare services, but to meeting places, such as the senior center. The windshield survey revealed both a lack of sidewalks and public transportation throughout not only residential areas but also around major business areas. A survey of 600 Cabarrus County residents by the Cabarrus County Planning Council revealed that senior citizens with disabilities would like to see increased wheelchair accessibility and enough space for turning should be provided on public transit systems. Many of the transportation services for the elderly require proof of eligibility. The elderly are either unaware of these eligibility requirements or do not have the resources or accessibility to prove that they meet these requirements. The survey also revealed that senior citizens with disabilities would like for location of bus routes to be more accessible and in areas

that were well lit and covered from the weather. Residents would like to see more comprehensive, community-based services provided where they can access all types of needed healthcare, from preventive, urgent care, and adult medicine within the same vicinity. Statistics (Cabarrus Health Alliance, 2004): Telephone Survey results regarding most unmet transportation needs: 1. Transportation to helping agencies (2.6% of respondents, approximately 3,700 individuals).

2. Transpiration to health care services (2.4% of respondents, approximately 3,500 individuals).

Among the highest percent of those interviewed and reported an unmet transportation need were individuals 65 years and older. Over 12% of individuals 65 years and over reported an unmet need for transportation to health care services. Over 10% of individuals 65 years and over reported an unmet need for transportation to social services. Over 7% of individuals 65 years and over reported an unmet need for transportation to the pharmacy.

Overall, these percentages were higher than any other single age group surveyed.

Telephone Survey results: Over 4,500 (8.4%) households in Cabarrus County do not have a vehicle available for use. The largest unmet transpiration need is transportation to helping agencies with over 3,700 (2.4%) individuals affected. The second largest unmet transportation need is transportation to health care services with over 3,500 (2.4%) individuals affected.