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%).
One surprising finding is that a high percentage of South Carolinians (32% statewide, 35% in the Lowcountry) and especially YOUNG South Carolinians (43% of those age 18–29), believe that advance care planning discussions should occur when a couple gets married. Along with many other "adult" responsibilities, the act of marriage—the joining of two lives—does include an ethical covenant to care for each other and make difficult decisions "in sickness and in health." Although most people assume that creation of a will is the best time, preparation for marriage appears to also provide a "teachable moment" for professionals to discuss advance directives.
Advance care planning is not just for the old. Any one of us could be involved in an accident. And as the Terry Schiavo case so painfully illustrated, without written documentation of the patient's wishes, families get torn apart emotionally, legally, and spiritually. Given the high number of citizens who feel that getting married is the best time to have this discussion, you as attorneys are uniquely positioned to introduce the subject to your younger clients and help prevent the recurrence of tragedies such as those experienced by the families of Terry Schaivo and Nancy Cruzan.
To learn more about data specific to our region, visit the website of the Carolinas Center for Hospice and End of Life Care or search the national database of research results available at EDELE (Epidemiology of Dying and End-of-Life Experience). (Return to list)
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:
- pain and symptom management
- spiritual and emotional support
- 24-hour access to telephone assistance/advice
- regular visits from a nurse
- education about their condition
- free coordination of care and case management
- respite for family caregivers
Hospice care is available whether an individual lives at home or in a nursing facility. For seniors, there is no deductible or copayment required for hospice as Medicare pays 100% of the cost for this service.
For your clients who indicate a preference for natural death in their advance directive, consider describing the benefits of hospice and recommending, when the time comes, that they ask their physicians if this type of care would be appropriate. You could be saving your clients, and their family members, weeks of unnecessary struggle and distress. (Return to list)
Online resources
Other Internet resources concerning advance care planning are listed below:
Caring Conversations This is a consumer education initiative that helps individuals and their families share meaningful conversation while making practical preparations for end of life decisions. The downloadable booklet was put together by the Center for Practical Bioethics and is available in both English and Spanish. www.practicalbioethics.org
Consumer's Tool Kit for Health Care Advance Planning This is a very thorough, yet readable, set of articles developed by the American Bar Association to help consumers consider the issues when preparing an Advance Directive.
Tool 1: How to Select Your Health Care Agent or Proxy
Tool 2: Are Some Conditions Worse Than Death?
Tool 3: How Do You Weigh Odds of Survival?
Tool 4: Personal Priorities and Spiritual Values Important to Your Medical Decisions
Tool 5: After Death Decisions to Think About Now
Tool 6: Conversation Scripts: Getting Past the Resistance
Tool 7: "Proxy IQ Test" for Family or Physician
Tool 8: What to Do After Signing Your Health Care Advance Directive
Tool 9: Guide for Health Care Proxies
Tool 10: Resources for Advance Planning for Health Care
www.abanet.org/elderly/toolkit/home.html
Myths about Advance Directives. Assembled by Charles Sabatino, of the American Bar Association's Commission on Law and Aging, this downloadable document addresses the 10 most commonly held misconceptions about Advance Directives, offering professionals both insights and answers to their clients' questions. www.abanet.org/aging/publications/docs/10legalmythsarticle.pdf
State-specific Advance Directives. Caring Connections, the consumer website of the National Hospice and Palliative Care Organization, offers free downloads of the approved advance directives of all 50 states. www.caringinfo.org/i4a/pages/Index.cfm?pageid=3425.
(Return to list)
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.
(Return to list)
|
