End-of-Life Care: Trends, Impact, and Disparities

1. M. Kay M. Judge, EdD, RN Marjorie J. Wells, PhD, ARNP

2. Introduction: End-of-Life (EOL) care To cure sometimes, To relieve often, To comfort always. Anonymous physician, 16th century

3. When is the End of Life? • End of Life (EOL) is the time period for patients in which: A) There is little likelihood of cure for their disease B) Further aggressive therapy is judged to be futile C) Comfort is the primary goal of health care

4. Palliative Care • “Palliative Care” and “End-of-Life Care” are terms often used interchangeably. • Palliation is defined as: • “The relief of suffering when cure is impossible.” Palliative Care End-of-Life Care (Doyle, 1998)

5. The Epidemiology of Death & Dying in the US: Demographic & Social Trends • Covers the following areas: • Life and death expectancy • Years of healthy life • Health disparities/morbidity and mortality in special population • Gender differences • Racial and ethnic differences • Age differences • Income and educational differences

6. Personal Impact • Demographics and social trends: • 2 million Americans die annually. • This is less than 1% of our population. • This number will increase as aging “baby boomer” population increases. • Less than 10% die from unexpected event • More than 90% die from: • Lengthy life-threatening illness (i.e., cancer). • Illness characterized by a slow decline interrupted by crises (congestive heart failure or emphysema).

7. DROPPING Life & Death Expectancy • Life Expectancy • “The average number of years people born in a given year are expected to live based on a set of age-specific death rates.” • 1900 – 1720 deaths per 100,000 population • 1995 – 880 deaths per 100,000 population • Less than half the number in 1900 • Age-adjusted mortality rates (which factors in the aging population) fell steadily from 1940 to 1980 to 1995. US Deaths, 20th Century 255.073.073 (USDHHS, 2000)

8. Crude Death Rates Crude Death Rates 2000 1720 1500 Deaths / 100,000 Population 1000 880 500 0 1900 1995 Year

9. Age Adjusted Mortality Age Adjusted Mortality Rates 1200 1076.1 1000 Deaths / 100,000 Population 800 600 505.5 503.7 400 200 0 1980 1995 1940 Year

10. Life Expectancy at Birth Past and projected female and male life expectancy at birth, United States, 1900 – 2050. 100 90 84.3 Female Years of Life 80 79.7 Male 70 60 50 Projection 40 1900* 1920* 1940 1960 1980 2000 2020 2040 1910* 1930* 1950 1970 1990 2010 2030 2050 Year (Source: U.S. Department of Commerce, Bureau of the Census)

11. Female Top 5 Male Top 5 Country Years of Life Expectancy Japan (1) 82.9 France (2) 82.6 Switzerland (3) 81.9 Sweden (4) 81.6 Spain (5) 81.5 Country Years of Life Expectancy Japan (1) 76.4 Sweden (2) 76.2 Israel (3) 75.3 Canada (4) 75.2 Switzerland (5) 75.1 Male Others Female Others Country Years of Life Expectancy England (11) 74.3 Singapore (15) 73.4 USA (25) 72.5 Country Years of Life Expectancy England (16) 79.6 Singapore (18) 79 USA (19) 78.9 Life Expectancy by Country & Gender Ranked by selected countries, 1995

12. Years of Healthy Life • The years of healthy life was 64.2 years in 1996, a level only slightly higher than the 64.0 years at the beginning of the 20th century. • During the same period, life expectancy increased a full year. “Years of healthy life is a combined measure developed for the Healthy People initiative. The difference between life expectancy and years of healthy life reflects the average amount of time spent in less than optimal health because of chronic or acute limitations.” (USDHHS, 2000)

13. Health Disparities/Morbidity & Mortality in Special Populations • “People in the low-income compared to high-income households are five times more likely to report their health as fair or poor.” • “More women report their health as fair or poor compared to men.” • “Rural area adult residents are 36 percent more likely to report their health status as fair or poor than are urban adults” (USDHHS, 2000)

14. Health Disparities: Low Income vs. High Income Percentage of persons with perceived fair or poor health status by household income, United States, 1995. 25% 20% 15% 10% Persons with perceived fair or poor health status 5% 0% Less than $15,000 $25,000-$34,999 $50,000 or more $15,000-$24,999 $35,000-$49,999 Household income (Source: U.S. Department of Commerce, Bureau of the Census)

15. Gender Differences • Men have a life expectancy 6 years less than women and have higher death rates for each of the 10 leading causes of death. • Men are twice as likely than women to die from unintentional injuries. • Death rates for women have increased in the 1990s in areas men have decreases (such as lung cancer). • Women are at greater risk for Alzheimer’s disease and twice as likely to be affected by major depression than men.

16. Racial & Ethnic Differences • “Current information about the biologic and genetic characteristics of African Americans, Hispanics, American Indians, Alaska Natives, Asians, Native Hawaiians, and Pacific Islanders does not explain the health disparities experienced by these groups compared with the white, non-Hispanic population in the United States. These disparities are believed to be the result of the complex interaction among genetic variations, environmental factors, and specific health behaviors.” (USDHHS, 2000)

17. African Americans • Several disparities between white and black Americans: • Twice the age adjusted mortality rates for black males compared to white males. • For black females, the age adjusted rate of death is more than a 1.5 times that of white females. • African American infant death rate is still more than double that of whites. • African Americans experience heart disease death rates greater than 40 percent higher than the rate for whites. • “The death rate for all cancers is 30 percent higher for African Americans than for whites.” (USDHHS, 2000)

18. Hispanics • The leading causes of death for Hispanic males: • Heart disease, cancer, unintentional injuries, and HIV. • Hispanics living in the United States die as a result of diabetes at nearly twice the rate as non-Hispanic whites. • Hispanics account for 20 percent of the new cases of tuberculosis despite the fact that they constituted only about 11 percent of the total population in 1996. • This group also has higher rates of high blood pressure and obesity than non-Hispanic whites.

19. American Indians & Alaska Natives • The infant death rate in this population is almost double that for whites. • The rate of diabetes is more than twice that for whites. • The Arizona Pima Indians have one of the highest rates of diabetes in the world. • This groups also has disproportionately high death rates from unintentional injuries and suicide.

20. Asians, Native Hawaiians & Pacific Islanders • On average, Asians and Pacific Islanders, are one of the healthiest population groups in the United States. • However, there is great diversity within this group especially for specific segments of it: • For example, women of Vietnamese origin have a cervical cancer rate nearly five times the rate for white women. • New cases of hepatitis and tuberculosis are also higher in U.S. Asians and Pacific Islanders than in whites.

21. Income & Educational Differences • “Inequalities in income and education underlie many health disparities in the United States. Income and education are intrinsically related and often serve as proxy measures for each other. In general, population groups that suffer the worst health status [and therefore higher death rates] also are those that have the highest poverty rates and the least education. … Higher incomes … increase the opportunity to engage in health-promoting behaviors.” (USDHHS, 2000)

22. Income & Educational Differences II Relationship between education and median household income among adults aged 25 years and older, by gender, United States, 1996 $70,000 $66,690 $60,000 Male $62,050 $50,000 $47,944 Female $43,628 $40,000 $40,000 Median Household Income $35,300 $30,000 $24,386 $20,000 $18,200 $10,000 $0 Less than 12 years 16 or more years 12 years 13-15 years Educational Level (Source: U.S. Department of Commerce, Bureau of the Census)

23. Leading Causes of Death in Advanced Countries: Chronic Illness • Leading causes of death are used frequently to describe the health status of the nation. • Over the past 100 years, the US has seen a great deal of change in the leading causes of death. • Beginning of the 1900s: • Infectious diseases (e.g., influenza, tuberculosis, and diphtheria) topped the leading causes of death worldwide. • Today: • A century later, we control many infectious agents. • Chronic diseases (lifestyle diseases e.g., heart disease, cancer, and stroke) top the list. (USDHHS, 2000)

24. Causes of Death/Mortality:20th Century Leading Causes of Death, 1900 Pneumonia Tuberculosis Diarrhea and enteritis Heart disease Liver disease Injuries Cancer Senility Diphtheria 5 10 15 20 25 30 0 Percent of all deaths (Source: Centers for Disease Control and Prevention)

25. Causes of Death/Mortality:20th Century Leading Causes of Death, 1997 Heart disease Cancer Stroke Chronic obstructive pulmonary disease Unintentional injuries Pneumonia/influenza Diabetes Suicide Kidney disease Chronic liver disease and cirrhosis 0 5 10 15 20 25 30 35 Percent of all deaths (Source: Centers for Disease Control and Prevention)

26. Age Differences • A different image emerges for different populations: • Unintentional injuries, mainly motor vehicle accidents: • The fifth leading cause of death for the total population. • #1 cause of death for those from 1 to 44 years of age. • HIV/AIDS • The 14th leading cause of death for the total population. • #1 cause of death for African American men aged 25 to 44 years. • In the US, leading causes of death generally result from a variety of factors: • Injury, violence, other factors, and the unavailability or inaccessibility of quality health care services.

27. All Age Groups

28. Under 1 Year Birth defects 6,178 Disorders related to premature birth 3,925 Sudden infant death syndrome 2,991 45-64 Years Cancer 131,743 Heart disease 101,235 Unintentional Injuries 17,521 65 Years and Older Heart disease 606,913 Cancer 382,913 Stroke 140,366 Leading Causes of Death by Age Group Number of Deaths

29. Injury & Violence • More than 400 Americans die each day from injuries due primarily to motor vehicle crashes, firearms, poisonings, suffocation, falls, fires, and drowning. • Most persons sustain a significant injury at some time during their lives. • Motor vehicle crashes are most common: • In 1998, there were 15.6 deaths from motor vehicle crashes per 100,000persons. • Homicide is a reliable indicator of all violent crime: • In 1998, the US murder rate fell to its lowest level in three decades — 6.5 homicides per 100,000 persons. (USDHHS, 2000)

30. Motor Vehicle Accidents • Death rates associated with motor vehicle-traffic injuries are highest in the age group 15 to 24 years. • In 1996, teenagers accounted for only 10 percent of the U.S. population but 15 percent of the deaths from motor vehicle crashes. • Those aged 75 years and older had the second highest rate of motor vehicle-related deaths. • Nearly 40 percent of traffic fatalities in 1997 were alcohol related. (USDHHS, 2000)

31. Homicides • In 1997, 32,436 individuals died from firearm injuries • 42 percent were victims of homicide. • In 1997, homicide was the third leading cause of death for children aged 5 to 14 years. • In 1996, more than 80 percent of infant homicides were considered to be fatal child abuse. • Males are most often the victims and the perpetrators of homicides. African Americans are more than five times as likely as whites to be murdered. (USDHHS, 2000)

32. Motor Vehicle & Homicide Deaths (Source: Centers for Disease Control and Prevention)

33. Sites of Death & Dying • Technical advances and societal changes have radically altered the dying process. • Improved efficacy of health care interventions lengthens the dying process. • The mobility of today’s society isolates the experience. • Since the turn of the last century, there has been a major change in where people die: • A migration from dying at home with family members in attendance to dying in an institution often attended only by professional caregivers.  

34. Sites of Death & Dying II Where Death Occurs (1992 Statistics) 6% Hospitals 20% Nursing Homes Residences 57% Elsewhere (including those who were dead on arrival at hospitals) 17%

35. Sites of Death & Dying III Sites of Death and Dying in the United States 1900-1980 Sites of Death & Dying 80% 70% 74.0% % of Death in Other Institutions Besides Hospitals 60% 60.9% 50% 49.5% 60.5% % Occurred in Institutions 40% 47.6% 39.5% 30% % of Death in Hospitals 20% 10% 1% 0% 1900 1949 1958 1980 Year