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Crit Care Nurse 2007 Dec; 27(6): 31-35
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Clinical Article
CE Article

Advance Directives: Results of a Community Education Symposium

Elizabeth B. Later, RN, BSN, MHA
 Don King, ADN, CCRN, FCCS

Elizabeth B. Later has 25 years of nursing experience in cardiac care, critical care, and nursing leadership. She is currently an Associate Chief Nursing Officer at Eastern Idaho Regional Medical Center, Idaho Falls, Idaho.

Don King has more than 30 years of critical care nursing experience. He is a clinical team leader in the intensive care unit at Eastern Idaho Regional Medical Center.

To purchase reprints, contact The InnoVision Group, 101 Columbia, Aliso Viejo, CA 92656. Phone, (800) 899-1712 or (949) 362-2050 (ext 532); fax, (949) 362-2049; e-mail, reprints{at}aacn.org.

Financial Support
The authors thank the American Association of Critical-Care Nurses ($500 grant) and the Eastern Idaho Regional Medical Center for their support.

This article has been designated for CE credit. A closed-book, multiple-choice examination follows this article, which tests your knowledge of the following objectives:

  1. Recognize barriers to completion of advanced directive documents
  2. Describe interventions that can positively affect advanced directive completion
  3. Explain the barriers noted by symposium participants in discussing advanced directives with their healthcare provider

Corresponding author: Elizabeth B. Later, RN, BSN, MHA, Eastern Idaho Regional Medical Center, 3100 Channing Way, Idaho Falls, ID 83404 (e-mail: elizabeth.later2{at}hcahealthcare.com).

Advance directives are legal documents outlining a patient’s preferences for treatment at the end of life. The intent is that the documents will be used if the patient later cannot communicate what end-of-life decisions should be made. The term advance directive is a broad one that includes living wills and healthcare proxies (durable power of attorney).1

Throughout the United States, end-of-life decisions are being made daily without the benefit of advance directives. Unfortunately, patients’ families and loved ones are often unprepared to make these decisions because no discussion about the patients’ preferences has taken place before hospitalization.

The Patient Self-Determination Act, passed by Congress in 1991, requires hospitals, nursing homes, and healthcare programs to ask patients about advance directives at the time of admission and to provide information about these documents.2 Ideally, patients will discuss their preferences for end-of-life care with their healthcare providers and family members and will be able to communicate these preferences in the form of an advance directive at the time of hospitalization. However, many people continue to delay completion of advance directives.3 This delay leads to situations in which a patient’s family members must intuitively guess what level of end-of-life care the patient would want without the benefit of a discussion of these issues before hospitalization.

The media attention given to the death of Terri Schiavo in March 2005 heightened public awareness of end-of-life issues and the problems created when treatment preferences have not been communicated before a traumatic event or a terminal illness occurs. The intense legal battles and national focus spurred an interest in advance directives, including the purpose of the directives and how to complete them.2,4

Opportunities exist for healthcare providers to eliminate barriers to completion of advance directives. In this article, we discuss access to information and education about end-of-life care as barriers to the completion of advance directives. We also present the results of a pilot symposium designed to overcome these barriers through community outreach and education, and we make recommendations for future community education seminars.


   Barriers to Advance Directives
Top
 Barriers to Advance Directives
Community Education
 Nursing Implications
 Summary
 References
 
Several barriers play a role in a person’s unwillingness to complete an advance directive3,5–8 (see TableGo). These include being overwhelmed with the onset of new disease, denial and procrastination, and lack of trust that healthcare providers will follow the advance directive. In addition, talking about end-of-life issues forces one to confront mortality, loss of autonomy, and personal vulnerability. The discussion of these emotional issues can be made even more complicated by cultural or family traditions.9–11


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  		Table Barriers to completion of advance directives

 
In 2005, less than 30% of Americans had an advance directive, despite patient advocacy efforts urging everyone to draft a living will and appoint a healthcare proxy.2 Access to information about advance directives has been cited as a barrier, and community educational efforts have been promoted as a tool in increasing the prevalence of these documents.6 However, although access to information does have some influence, it does not necessarily translate into completion of advance directives.8

Opportunities exist to use educational offerings in a more effective way to increase the completion rates of advance directives. The most effective formats include interactive sessions in which participants discuss individual options and implications.6 Providing access to experts to help guide decision making might also be an effective way of influencing completion rates.


   Community Education
Top
 Barriers to Advance Directives
 Community Education
Nursing Implications
 Summary
 References
 
Nurses are in a unique position to provide education to community members about advance directives. Often a nurse is the person responsible for communicating information to patients and their families that is relevant to end-of-life decisions.2 The American Nurses Association position statement12 on nursing and the Patient Self-Determination Act specifically outlines the responsibility of nurses to facilitate informed decision making and provide education for patients who are making choices about end-of-life care.

Critical care nurses at Eastern Idaho Regional Medical Center, Idaho Falls, Idaho, were interested in providing education on end-of-life care to members of the local community. The 29-bed intensive care unit at the medical center was a 2005 recipient of the Beacon Award for Critical Care Excellence. After receiving the award, nurses in the unit were more motivated to provide community outreach and education. There was a sense of "living up to the award."

Influenced by their own professional experiences with patients and patients’ families and seeing an opportunity with the heightened public awareness because of the Terri Schiavo story, some of the nurses created an initiative for community education. With the assistance of a grant provided by the American Association of Critical-Care Nurses, 2 community educational events were conducted.

Health Fair Advance Directive Booth
The first event was an advance directive booth established at the annual 2005 Heart and Health Fair sponsored by the medical center. The goal of this event was to allow people to talk about and receive information on advance directives in a nonthreatening, personable environment. The booth provided information on how to fill out an advance directive and opportunities for one-on-one dialogue between participants and the critical care nurses who staffed the booth. Hospital social workers also answered questions and provided advance directive forms. Each visitor to the booth was given the opportunity to complete a laminated wallet card explaining the location and basic content of the visitor’s advance directive (see FigureGo). The booth was highly successful; a majority of the approximately 900 health fair attendees stopped at the booth. Because of its success, the booth was repeated at the 2006 health fair.


Figure 1
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  		Figure Advance directive wallet card presented at the health fair booth.

 
Community Symposium on Advance Directives
After the first event, a 1-hour advance directive symposium was held for the Idaho Falls community. The symposium was designed as an informational and interactive program with experts giving presentations on issues related to completion of advance directives. Speakers included an attorney and the risk manager at Eastern Idaho Regional Medical Center, who discussed legal issues associated with advance directives. An oncologist presented his experiences with patients at the end of life, and the medical director of the intensive care unit shared his perspective on the role of advance directives in end-of-life decisions. A critical care nurse planned and facilitated the program and conducted a question-and-answer period during which participants could get personalized information from the presenters. Surveys were done before the symposium to assess participants’ perceptions and knowledge of advance directives, and evaluations were completed by participants after the program to determine if knowledge level and perceptions had been affected by the education provided.

The symposium was well advertised through the use of press releases, community calendars, newspaper advertisements, and flyers to physicians and other healthcare organizations. Notices to human relations directors at local businesses and a promotional link on the medical center’s Web site were also used. More than 100 community members attended, indicating that access to information is an important factor to consider when trying to eliminate barriers to completion of advance directives.

The majority of attendees were white, 51 to 70 years old, and had little knowledge of advance directives before the symposium; 5% reported they had a lot of knowledge, 30% had some, 43% had a little, and 22% had none. Although 89% of attendees thought that the topic of advance directives was very important, only 22% had an advance directive in place. When asked about the reasons for not completing an advance directive, the participants were fairly evenly split between not knowing where to get one (27%), not knowing how to fill one out (28%), and not knowing what they wanted one to say (40%); 5% thought they were too young to worry about an advance directive.

Among the participants in the symposium, 40% had previous experience with making end-of-life decisions for loved ones: 16% with the help of an advance directive and 24% without. Respondents who had made these decisions with the help of an advance directive generally admitted that advance directives had been helpful in decision making; 66% found them very helpful; 13%, somewhat helpful; 4%, a little helpful, and 17%, not helpful at all. Still, only 22% participants had a directive in place before the symposium.

Participants were asked about communication concerning advance directives and what they perceived to be barriers to having discussions with family about end-of-life care. Responses indicated that 63% of attendees had not discussed their end-of-life preferences with their family members; of this group, 71% stated that they just had not taken the time to do so, 13% indicated that they did not know how to bring it up, 13% said that it was uncomfortable to talk about, and 3% stated that their family members did not need to know.

Also impressive, 89% of the participants had not talked with their healthcare providers about an advance directive. Of these, 67% of said that their provider was too busy; 25% stated that the topic was too uncomfortable for them to approach; and 8% said that they had attempted to discuss an advance directive with their provider, but the provider did not want to engage in such a discussion. Because having insight into future situations and accurately predicting preferences in advance is difficult for patients, healthcare providers can help by providing support and professional insight into the decision-making process.4

The evaluation survey reflected that attendees thought that learning about legal issues and the importance of talking to family and physicians about advance directives had been the most useful parts of the symposium. In addition, 98% stated that they planned on pursuing completion of an advance directive after attending the symposium. The percentage of participants who thought that advance directives were very important increased from 89 before the symposium to 100 after the symposium. The percentage who thought advance directives were somewhat important increased from 0 to 11. None of the attendees felt advance directives were a little important or not important either before or after the symposium.


   Nursing Implications
Top
 Barriers to Advance Directives
 Community Education
 Nursing Implications
Summary
 References
 
Attendance at both the health fair booth and the community education symposium confirmed that members of the community have a desire for information about advance directives and end-of-life care. This education should be centered on a variety of topics, including communicating with physicians and family members, completing an advance directive, and reviewing an existing advance directive with experts.

Many elderly attendees brought advance directives with them, hoping to have someone review the directives for them and make recommendations for updating the documents. The format of this symposium did not allow enough time for this level of personal review. Consideration should be given to allowing one-on-one time during seminars to allow healthcare providers to help guide the participants’ decision making.

Community education on advance directives is more complex when the population of a community is ethnically, culturally, and religiously diverse. At our symposium, 97% of the participants were white, and 3% were Hispanic. These percentages reflect the ethnic demographic of the community (92% white and 7% Hispanic),13 but because ethnicity is linked to completion rates for advance directives, opportunities exist for developing culturally sensitive symposiums to address end-of-life issues for groups of different ethnic origins.14

Follow-up was not done with attendees to determine completion rates after the symposium. Future educational offerings could yield data about educational effectiveness if attendees were contacted later about their success in completing an advance directive.


   Summary
Top
 Barriers to Advance Directives
 Community Education
 Nursing Implications
 Summary
References
 
It is imperative that nurses find opportunities to take an active role in educating members of the community about completing advance directives and discussing end-of-life preferences with the members’ families and healthcare providers. Waiting until a patient is hospitalized to discuss these issues is ineffective and compounds the emotional impact of the illness or traumatic event that brought the patient to the hospital.

Too often, patients languish while their family members try to make decisions with the guidance of healthcare providers who know little more than the family members about the patients’ desires. Effective community education and provision of timely information are needed, with consideration given to barriers and how to eliminate them.


   Acknowledgments
 
The authors thank the following people and organizations for their support: Hospice of Eastern Idaho, Idaho Falls, Idaho; Aspen Home Health and Hospice, Idaho Falls, Idaho; US Department of Health and Human Services; Marvin Smith, attorney at law, legal counsel for Eastern Idaho Regional Medical Center; Louis Fatkin, executive director of risk management, Eastern Idaho Regional Medical Center; Christian Shull, MD, Snake River Oncology, Idaho Falls, Idaho; Kenneth Krell, MD, intensive care unit co–medical director, Eastern Idaho Regional Medical Center.


   References
Top
 Barriers to Advance Directives
 Community Education
 Nursing Implications
 Summary
 References
 

  1. Ashley RC. Why are advance directives legally important? Crit Care Nurse. 2005; 25(4):56–57.[Free Full Text]
  2. Roman LM, Metules TJ. What we can learn from the Schiavo case. RN. 2005; 68(8):53–57.[Medline]
  3. Ditto PH, Hawkins NA, Pizarro DA. Imagining the end of life: on the psychology of advance medical decision making. Motiv Emot. 2005;29(4):475–496.
  4. Crane MK, Wittink M, Doukas DJ. Respecting end-of-life treatment preferences. Am Fam Physician. 2005;72(7):1263–1268.[Medline]
  5. Butterworth AM. Reality check: 10 barriers to advance planning. Nurse Pract. 2003;28(5): 42–43.[Medline]
  6. Volk-Craft BE. Advance directives: overcoming reluctance and getting them done. Case Manager. 2005;16(6):72–75.[Medline]
  7. Jezewski MA, Meeker MA. Constituting advance directives from the perspective of people with chronic illnesses. J Hosp Palliat Nurs. 2005;7(6):319–327.
  8. Salmond SW, David E. Attitudes toward advance directives and advance directive completion rates. Orthop Nurs. 2005;24(2): 117–127.[Medline]
  9. Brown M. Decision making in advance: reducing barriers and improving access to advance directives for people with dementia. Alzheimer’s Australia Discussion Paper 8. May 2006. http://www.alzheimers.org.au/upload/Decision_Making_in_Advance_May_2006.pdf.
  10. Phipps EJ, True G, Murray GF. Community perspectives on advance care planning: report from the Community Ethics Program. J Cult Divers. 2003;10(4):118–123.[Medline]
  11. Davis BA, Burns J, Rezac D, et al. Family stress and advance directives: a comparative study. J Hosp Palliat Nurs. 2005;7(4): 219–227.
  12. American Nurses Association. Ethics and human rights position statement: nursing and the Patient Self-Determination Act, 1991. http://www.nursingworld.org. Accessed September 19, 2007.
  13. US Census Bureau. State and county quick facts for Idaho Falls, Idaho. http://quickfacts.census.gov/qfd/states/16/1639700.html. Last revised August 31, 2007. Accessed September 15, 2007.
  14. Scherer Y, Jezewski MA, Graves B, Wu YW, Bu X. Advance directives and end-of-life decision making: survey of critical care nurses’ knowledge, attitude, and experience. Crit Care Nurse. 2006;26(4):30–40.[Free Full Text]




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