n the previous issue of Public Policy and Practice Gere B. Fulton and Donald E. Saunders, Jr. described the conditions surrounding the case of Robert Wendland. Mr. Wendland had suffered a severe and permanent brain injury, which left him minimally conscious, but short of a “vegetative” state. The court case involved a battle among Mr. Wendland’s relatives over whether or not the feeding tube which was inserted to keep him alive should be removed. In addition to describing how this case likely would have been resolved if it had arisen in South Carolina, this article raised a number of interesting questions concerning end-of-life care. How concerned are South Carolinians about end-of-life issues and how prepared are they to deal with them? To what extent have residents of the state prepared advance directives such as living wills or health care powers of attorney that would instruct their family as to their wishes in situations in which they are unable to make decisions for themselves? Are there differences among groups in terms of their attitudes on end-of-life issues and the steps they have taken in this area? In this article we examine several aspects of the attitudes and behavior of South Carolinians on concerns related to end-of-life care.

DATA SOURCES

The data for this analysis come from the South Carolina State Surveys conducted in Fall, 1994, Spring 1999, and Spring 2001.¹In the Spring 1994 survey, the Governor’s Office, Division on Aging, asked questions on whether South Carolina residents had ever signed a living will or health care power of attorney, while in the Spring 1999 survey the South Carolina Collaborative on End-of-Life Care asked a series of questions designed to determine how South Carolinians feel on a range of issues related to end-of-life care, including when to make decisions about end-of-life care; primary concerns about end-of-life care; where individuals would prefer to die; and whether more information about end-of-life care was needed. The questions from the 1999 survey were repeated in Spring 2001, together with questions on whether or not respondents had done anything to prepare for a situation in which they might not be able to make health care decisions for themselves, such as signing a living will or health care power of attorney.

WHEN DECISIONS SHOULD BE MADE ABOUT END-OF-LIFE CARE

If South Carolinians are concerned about care at the end of life, when do they begin to make preparations for such care? Respondents in the 1999 and 2001 were asked when they thought one should make decisions about end-of-life care. Results for the complete sample are as follows:

As these data demonstrate, results from these two years are quite similar, and indicate that about 30% of respondents think that such decisions should be made when you get married, roughly one-quarter feel they should be made when making a will, about 15% think this should be done at about age 45, less than five percent said at the time of a medical crisis, and slightly more than five percent said they didn’t know.

There was also a relatively large percentage of respondents who chose an option other than those specifically provided in the question. The complete responses are provided in Table 1.   The most frequent “other” response (4.8%) was age 20 or younger, and an additional 1.9% thought that such decisions should be made between ages 21 and 29, and 1.7% said between ages 30 and 39. Several respondents mentioned other life events as the time to make decisions about end-of-life care: 1.0% said this should take place when you start working, 0.8% said when you have a child, 0.6% thought it should be at retirement, 0.3% mentioned graduation, and 0.1% felt such decisions should be considered when you buy a house. About three percent of respondents thought that these decisions should be made as soon as possible, 1.9% said “whenever you feel the need,” and 0.7% felt that such decisions should be made before issues concerning end-of-life care arise.

Responses to this question by demographic subgroup for the 2001 survey are provided in Table 2. These data indicate significant variation across several groups, and these differences are consistent with those found in 1999. In both surveys, whites and blacks differed significantly intheir opinions concerning when end-of-life care discussions should take place. A higher percentage of whites than blacks felt that such decisions should be made when making a will, while blacks were more likely to give some “other” response to this question.  Differences across age groups were also significant in both years, with the most striking distinction being the percentage of young respondents who believe that decisions regarding end-of-life care should be made when you get married. In the 2001 survey, 53.6% of those age 18 to 29 gave this response, compared to 29.5% of those age 30 to 45, 21.8% of those 46 to 64, and 18.7% of respondents age 65 or older. The percentage of respondents who thought that decisions about end-of-life care should be made when you are about 45 years old increased as age increased, and older respondents were also more likely to say they did not know when such decisions should be made.

Across levels of education, respondents with more years of schooling, particularly those with a college degree, were more likely to say that decisions about end-of-life care should be made when making a will. A higher percentage of respondents with less education said they didn’t know when such decisions should be made.

Smaller, yet statistically significant, differences in responses to this question were found between men and women and across regions of the state. Women were more likely than men (25.5% to 18.1%) to feel that decisions about end-of-life care should be made when making a will, while men were more likely to say that such decisions should be made when you get married. Across regions, residents of the Upstate (26.0%) were more likely than those in the Midlands (21.0%) or the Lowcountry (17.9%) to believe that decisions about end-of-life care should be made when making a will, while a slightly higher percentage of Lowcountry residents thought this should be done when a person is about 45 years old.

PRIMARY CONCERN ABOUT END-OF-LIFE CARE

While the percentage for most of these responses is similar in the two surveys, there has been a significant change in the most frequently given response. In 1999, the largest percentage (30.8%) expressed concern about their comfort and dignity, followed by the cost of care (22.8%). By 2001, the percentage who cited the cost of care as their primary concern had increased to 35.6% while the percentage mentioning their comfort and dignity had declined to 21.1%. In 2001, 13.6% named where they received the care as their primary concern, 6.0% mentioned the pain they would experience, and 5.8% gave some other response. Among these other responses were concerns about the quality of care (1.9%), not wanting to be a burden on their family (1.6%), and unduly prolonging life (0.6%). Slightly more than one in twenty respondents gave a “don’t know” answer to this question, and 12.0% reported that they had no concerns about their end-of-life care.           

Table 3 provides the responses to this question across demographic subgroups in 2001. While distinctions across any of these subgroups are not huge, those by level of education, race, family income, and sex are statistically important. Respondents with more education were more likely to express concern for their comfort and dignity, with the percentage ranging from 30.4% among those with a college degree to 13.9% for those with less than a high school education. A higher percentage of those with less education gave a “don’t know” response to this question, and there was a tendency for the less educated to say they had no concerns about their end-of-life care. A higher percentage of white than black respondents (23.3% to 13.2%) mentioned concern about their comfort and dignity, while blacks were more likely than whites (21.7% to 11.0%) to express concern about where they would receive such care. Respondents from families with higher incomes were more likely to mention comfort and dignity as their primary concern, while a higher percentage of those with lower incomes said they were not concerned about their end-of-life care. Women were slightly more likely than men to mention comfort and dignity (23.8% to 18.1%) or where they would receive care (16.0% to 11.0%) as their primary concern, while a higher percentage of men said they were not concerned about their end-of-life care.

WHERE YOU WOULD PREFER TO DIE

Another issue surrounding end-of-life care concerns where people would prefer to die. When asked to choose among dying in their home, in a nursing home, in a hospice facility, in a hospital, or somewhere else, respondents in the 1999 and 2001 surveys showed the following preferences: 

These results are strikingly consistent across years and demonstrate that a solid majority of South Carolinians – about 60% in each year – would prefer to die in their own home. The second most frequently mentioned location was a hospital (16.0%), followed by a hospice facility (3.6%) and a nursing home (0.8%). Slightly less than 10% said they would prefer to die “somewhere else” and 13.1% said they did not know where they would prefer to die. The “somewhere else” category included a variety of responses ranging from the religious or fatalistic – e.g., “it’s up to God” – to the light-hearted – e.g., “doing something fun.” Twenty-three respondents (2.9%) said they did not care where they died.

The largest group difference on this question was between blacks and whites (see Table 4). A much higher percentage of whites than blacks (62.3% to 47.5%) indicated they would prefer to die in their home, or in a hospice facility (4.6% to 0.9%), while a higher percentage of black respondents said they would prefer to die in a hospital (21.7% to 13.2%) or did not know what their preference was (18.6% to 10.3%).

Across education levels, those with more education were also more likely to say they would prefer to die in their home or in a hospice facility while those with less education were more likely to say they would prefer to die in a hospital.            

A significant difference across regions was also detected on this question. A higher percentage of residents of the Upstate (63.2%) than of those from either the Lowcountry (55.9%) or the Midlands (54.1%) said they would prefer to die in their own home, while Lowcountry residents were more likely to say they did not know where they would prefer to die.            

A higher percentage of women than men (21.2% to 10.4%) indicated they would prefer to die in a hospital, while men were more likely than women to say they would prefer to die in some other location.

PREPARATIONS FOR END-OF-LIFE CARE

Given South Carolinians concerns about end-of-life care, what steps have the state’s residents taken to prepare for their health care in a situation where they might not be able to make decisions for themselves? Respondents in the 2001 survey were asked if they had done anything such as signing a living will, a health care power of attorney, or taken some other action.Comparable information on signing a living will or health care power of attorney was available from the 1994 survey.