End-of-life preferences in South Carolina

Thanks to the award-winning Carolinas Center for Hospice and End of Life Care, we have ready access to local and regional statistics concerning the populations we serve. For instance, highlights of recent research (Institute for Public Service and Policy Research, 2004) reveal the following:

• 58% of residents in the Lowcountry do not have a living will or a health care power of attorney.
• 35% of Lowcountry residents think, "when they get married" is the best time to talk about end-of-life care, while 24% said, "when making a will."
• 63% of Lowcountry residents prefer to die at home, and 16% say they prefer to die in the hospital.
• Although a strong majority in both groups prefer to die at home, African Americans in South Carolina are more likely than Caucasians to prefer to die in the hospital.
• In a shift from recent years, cost of end-of-life care is now the top concern of South Carolina residents (up from 23% in 1999 to 36%). Comfort and dignity rank second, and residents of the Lowcountry rate these qualities as a higher priority (26%) than do those who comprise the statewide average (20%).

Insights on Advance Directives

The majority of Americans have yet to complete an advance directive despite high profile cases such as that of Terry Schiavo. As attorneys, you can encourage your clients to talk about their wishes before they are in a medical crisis and to get their paperwork in order. You can also advise them about the care that is available to assure a painfree, natural death so they can advocate for themselves and their loved ones should the need arise. Our website can help you.

The section on Important Decisions has an initial article on quality of life, designed to prompt thinking about what makes life worth living and what might, for each individual, be considered "worse than death." The article about health care planning describes the elements of an advance directive. It then provides specific information about the most commonly used forms of life support. At the end of each one is a quote from an individual that serves as a springboard for discussion: Does the viewer agree or disagree with the quote? What would the viewer say instead? Finally, there is an article about starting the conversation with tips for getting past the barriers that commonly occur when trying to talk to a family member about health care planning.

Despite the AMA's recommendation that physicians speak to their clients early about health care planning, doctors have difficulty doing so. They worry that the conversation will rob their patients of hope. For similar reasons, they are also hesitant to suggest hospice, even though the hospice focus on pain management is the gold standard for terminally ill patients who do not want aggressive treatment.

To illustrate, research shows that 2-3 months of hospice care is optimal for maximum benefit (Rickerson and colleagues 2005). Nevertheless, 25% of hospice patients are not enrolled until their last week of life, and 10% are enrolled on their last DAY (Medicare Payment Advisory Commission, 2006). The mean length of stay is only 20 days, or less than one-third the time recommended for families to get the support they need.

Interestingly, if patients or their families bring up the subject of hospice, doctors are relieved and are happy to refer their patients for this type of care.

You can help your clients actualize their wishes for a painfree, natural death by educating them now, before their crisis, about the benefits of hospice and the need for them to bring up the subject with the doctor.

Surprisingly, very few people know or understand about hospice and the wide range of support it can deliver. A group of Pennsylvania researchers (Casarett, Crowley, & Hirschman, 2004) discovered that family members valued a number of hospice services that they had not expected to receive. On the basis of these findings, they recommend describing the following aspects of hospice care during discussions about advance care planning:

Online resources

Other Internet resources concerning advance care planning are listed below:

References

Casarett, D. J., Crowley, R. L., & Hirschman, K. B. (2004). How should clinicians describe hospice to patients and families? Journal of the American Geriatric Society, 52(11), 1923-1928.

Medicare Payment Advisory Commission. (2004). Report to Congress: Increasing the value of Medicare. Retrieved 2/18/07 from the Internet at http://www.medpac.gov.

Rickerson, E., Harold, J., Kapo, J., Caroll, J. T., & Casarett, D. (2005) Timing of hospice referral and families' perceptions of services: Are earlier hospice referrals better? Journal of the American Geriatrics Society, 53(5), 819-923.