Why Aren’t Patients Using Advance Directives?

October 23, 2013

By Abigail Maller, MD

Faculty Peer Reviewed

Advance directives are a means for patients to communicate their wishes regarding medical decisions to their families and health care professionals once they are unable to make these decisions themselves. These documents, together with the assignment of health care proxies, help avoid a discrepancy between what a patient wanted in terms of end-of-life care and the level of care that they end up receiving [1]. These resources also prevent confusion and promote mutual understanding between providers and family members.

However, advance directives are only used by a small percentage of all patients [2]. Literature shows that only between 18% and 30% of Americans have completed an advance directive. Additionally, only 1 in 3 chronically ill patients have a documented advance directive [3]. Even among patients admitted to Medical ICUs, only a minority has advance care planning documented prior to admission [1]. Analysis of a majority of state advance directive documents has shown that these forms tend to be riddled with complex medical and legal jargon [4, 5], and are written at a reading level significantly higher than the national average (11th grade versus 8th grade, respectively) [6]. The complexity of these documents establishes a barrier between advance care planning and patients that could potentially benefit from it.

Even though only a minority of patients overall use advance directives, research has shown that people of different ethnicities have varying rates of utilization of advance directives [7, 8]. Additionally, attitudes towards end-of-life care and advance care planning vary among different patient populations8. Patients of all populations tend to have misconceptions when it comes to advance care planning including fear of early withdrawal of care, neglect, and poor administration of care. Patient surveys conducted at the University of Kansas Medical Center showed that hospitalized African Americans have fewer advanced directives and living wills than Caucasian patients [9]. Patients in this study group also expressed the belief they would be treated differently or cared for less if they had a living will, noting mistrust of the system. They also noted preference for more aggressive medical care in the case of a terminal illness. Latino patients studied in the same survey also had lower rates of advance directive care, but attributed this to language barriers rather than mistrust. Focus groups of Latino populations at Massachusetts General Hospital have shown that Latino patients are unfamiliar with the language and documentation of advance care directives [10]. Additionally, they were confused with regards to not only the purpose of these forms but the legality, as well. Some patients did not understand the difference between a living will and a last will and testament.

While some ethnic minorities have shown lower rates of advance directive use as above, a study conducted in Florida showed that patients of Asian descent are as likely as Caucasian patients to have a surrogate decision maker assigned [11]. Judging by these results authors concluded that the difference in advance directive and end-of-life planning, while partially influenced by cultural differences, was at root significantly associated with socioeconomic status. However, this association has not been demonstrated in the literature. More recent studies have shown that the discrepancies identified between demographics, while associated with ethnicity, socioeconomic status, and level of education, may be caused at root by an underlying difference in literacy level [12, 13]. Low Health Literacy is a stronger predictor of a person’s health than age, income, employment status, education level, and race [14]. In fact, a lower health literacy has even been shown to be independently associated with poorer physical and mental health status [15].

The Volandes group at Massachussets General Hospital performed a study of end-of-life preferences among a group of African American and Caucasian patients. Subjects were initially given a verbal description of advanced dementia and asked to report their preferences for end-of-life care, which were dichotomized into comfort care and aggressive care. Patients were shown a 2-minute video of a patient with advanced dementia and asked to report their preferences for end-of-life care again after viewing the video. These subjects were also tested for level of Health Literacy using the Rapid Estimate of Adult Literacy in Medicine (REALM) score [16]. This group found that the African American patients were more likely than the Caucasian patients to prefer aggressive care after the verbal description. Patients with low to marginal health literacy were also more likely than patients with adequate health literacy to prefer aggressive care after the verbal description. However, after viewing the video of a patient with advanced dementia, there were no differences in preference attributable to race or level of health literacy [17]. Additional research using this video-based education model used above has been performed. These studies also aim to reduce the bias that differences in health literacy introduce to advance care planning [18]. Results of these have shown that after intervention with video-based education, the associations between choice of level of end-of-life care and education/literacy level decrease substantially [19, 20].

A research group at University of California, San Francisco (UCSF) developed a low-literacy form for advance care planning and studied it as compared to the standard advance care documents in regular use in the state of California [21]. Patients were randomized to review either the redesigned form or the standard form and were asked to rate acceptability and usefulness in advance care planning. Subjects were then given the alternative form and rated form preference. Subject completion of advance directive documentation was also monitored. This group showed that in comparison with standard documentation patients overall preferred the redesigned form, and this was especially true of patients deemed to have limited literacy. Additionally, patients randomized to initially receiving the redesigned form had higher rates of completion of an advance directive after 6-month follow-up.

Despite this, the research thus far on differences in health literacy and end-of-life decision-making remains limited. Further investigation into how redesigned advance care planning documentation can improve utilization rates is important. Additionally, while educational video intervention has been successful in the cases of advanced dementia as above, it is not clear whether similar techniques would work for terminal illnesses that present less overtly. It is clear that more research into this area is necessary. More importantly, however, there has been very little initiative to change the usual practice in clinics across the country to promote advance directive use.

Overall, it seems that in order to promote use of advance directives multiple approaches and interventions are necessary. Potential targets include improvements in health literacy, addressing cultural biases as well as language barriers, and improving document complexity. Redesigning the documents would only be a first step, though – education must also be a primary goal. Improvement in communication, education, and understanding regarding advance directives has the potential for major improvements health outcomes in our hospital population.

Dr. Abigail Maller is a second year Internal Medicine resident at NYU Langone Medical Center

Peer reviewed by Antonella Surbone MD, PhD FACP, Ethics Editor, Clinical Correlations

References

1. Johnson RF Jr, Baranowski-Birkmeier T, O’Donnell JB. Advance directives in the medical intensive care unit of a community teaching hospital. Chest. 1995 Mar;107(3):752-6. PubMed PMID: 7874948.

2. Schickedanz AD, Schillinger D, Landefeld CS, Knight SJ, Williams BA, Sudore RL. A clinical framework for improving the advance care planning process: start with patients’ self-identified barriers. J Am Geriatr Soc. 2009 Jan;57(1):31-9. PubMed PMID: 19170789; PubMed Central PMCID: PMC2788611.  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2788611/

3. Wilkinson A, Wenger N, Shugarman LR. Literature review on advance directives. Report prepared for the U.S. Department of Health and Human Services; Assistant Secretary for Planning and Evaluation; Office of Disability, Aging and Long-Term Care Policy: Washington, DC. 2007. http://aspe.hhs.gov/daltcp/reports/2007/advdirlr.htm

4. Castillo LS, Williams BA, Hooper SM, Sabatino CP, Weithorn LA, Sudore RL. Lost in translation: the unintended consequences of advance directive law on clinical care. Ann Intern Med. 2011 Jan 18;154(2):121-8. Review. PubMed PMID: 21242368; PubMed Central PMCID: PMC3124843.  http://www.ncbi.nlm.nih.gov/pubmed/21242368

5. Gunter-Hunt G, Mahoney JE, Sieger CE. A comparison of state advance directive documents. Gerontologist. 2002 Feb;42(1):51-60. PubMed PMID: 11815699.

6. Mueller LA, Reid KI, Mueller PS. Readability of state-sponsored advance directive forms in the United States: a cross sectional study. BMC Med Ethics. 2010 Apr 25;11:6. PubMed PMID: 20416105; PubMed Central PMCID: PMC2868033.

7. Kwak J, Haley WE. Current research findings on end-of-life decision making among racially or ethnically diverse groups. Gerontologist. 2005 Oct;45(5):634-41. Review. PubMed PMID: 16199398.

8. Muni S, Engelberg RA, Treece PD, Dotolo D, Curtis JR. The influence of race/ethnicity and socioeconomic status on end-of-life care in the ICU. Chest. 2011 May;139(5):1025-33. Epub 2011 Feb 3. PubMed PMID: 21292758.   http://www.ncbi.nlm.nih.gov/pubmed/21292758

9. Born W, Greiner KA, Sylvia E, Butler J, Ahluwalia JS. Knowledge, attitudes, and beliefs about end-of-life care among inner-city African Americans and Latinos. J Palliat Med. 2004 Apr;7(2):247-56. PubMed PMID: 15130202.

10. Cohen MJ, McCannon JB, Edgman-Levitan S, Kormos WA. Exploring attitudes toward advance care directives in two diverse settings. J Palliat Med. 2010 Dec;13(12):1427-32. Epub 2010 Nov 22. PubMed PMID: 21091225.

11. Kwak J, Haley WE. Current research findings on end-of-life decision making among racially or ethnically diverse groups. Gerontologist. 2005 Oct;45(5):634-41. Review. PubMed PMID: 16199398.  http://www.ncbi.nlm.nih.gov/pubmed/16199398

12. Shea JA, Beers BB, McDonald VJ, Quistberg DA, Ravenell KL, Asch DA. Assessing health literacy in African American and Caucasian adults: disparities in rapid estimate of adult literacy in medicine (REALM) scores. Fam Med. 2004 Sep;36(8):575-81. PubMed PMID: 15343419.

13. Melhado L, Bushy A. Exploring Uncertainty in Advance Care Planning in African Americans: Does Low Health Literacy Influence Decision Making Preference at End of Life. Am J Hosp Palliat Care. 2011 Mar 10. [Epub ahead of print] PubMed PMID: 21398263.408.

14. Report on the Council of Scientific Affairs, Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association, JAMA, Feb 10, 1999.

15. Wolf MS, Gazmararian JA, Baker DW. Health literacy and functional health status among older adults. Arch Intern Med. 2005 Sep 26;165(17):1946-52. PubMed PMID: 16186463. http://www.ncbi.nlm.nih.gov/pubmed/16186463

16. Doak CC, Doak Lg, Root JH: Teaching Patients with Low Literacy Skills, 2nd ed. Philadelphia: J.B. Lippincott, 1996.

17. Volandes AE, Paasche-Orlow M, Gillick MR, Cook EF, Shaykevich S, Abbo ED, Lehmann L. Health literacy not race predicts end-of-life care preferences. J Palliat Med. 2008 Jun;11(5):754-62. PubMed PMID: 18588.

18. Volandes AE, Ferguson LA, Davis AD, Hull NC, Green MJ, Chang Y, Deep K, Paasche-Orlow MK. Assessing end-of-life preferences for advanced dementia in rural patients using an educational video: a randomized controlled trial. J Palliat Med. 2011 Feb;14(2):169-77. Epub 2011 Jan 21. PubMed PMID: 21254815.

19.Volandes AE, Ariza M, Abbo ED, Paasche-Orlow M. Overcoming educational barriers for advance care planning in Latinos with video images. J Palliat Med. 2008 Jun;11(5):700-6. PubMed PMID: 18588401.  http://www.ncbi.nlm.nih.gov/pubmed/18588401

20. Volandes AE, Barry MJ, Chang Y, Paasche-Orlow MK. Improving decision making at the end of life with video images. Med Decis Making. 2010 Jan-Feb;30(1):29-34. Epub 2009 Aug 12. PubMed PMID: 19675323.

21. Sudore RL, Landefeld CS, Barnes DE, Lindquist K, Williams BA, Brody R, Schillinger D. An advance directive redesigned to meet the literacy level of most adults: a randomized trial. Patient Educ Couns. 2007 Dec;69(1-3):165-95. Epub 2007 Oct 17. PubMed PMID: 17942272; PubMed Central PMCID: PMC2257986.  http://www.ncbi.nlm.nih.gov/pubmed/17942272

ADVANCED DIRECTIVES: FURTHER ELEMENTS OF COMPLEXITY.

By Antonella Surbone MD PhD FACP, Clinical Correlations Ethics Editor.

The interesting piece by Dr. Maller —“Why aren’t patients using advanced directives?”— addresses in detail two main aspects of this issue: cross-cultural and ethnic differences that affect people attitudes toward advanced directives (ADs) and health literacy. (1) The latter, as Dr. Maller indicates, relates to individual educational level, but also to the fact that most AD forms are “riddled with complex medical and legal jargon.” Different methods to improve readability and cross-cultural comprehension of AD forms must be designed and implemented in order to increase their utilization, yet the key is always individually and culturally sensitive communication between physicians and their patients and families (2,3).

In 2005 JAMA published a poignant piece entitled “Beyond advanced directives: Importance of communication skills at the end of life. (4). Yet, still most Americans and people around the world do not discuss end-of-life issues with their doctors and do not have ADs, regardless of gender, age, ethnicity and educational level. Why? Because in western countries we tend to avoid speaking of death, as if this could make death less part of our life. As physicians, we are especially reluctant to address difficult conversations about poor prognosis and dying, because in medical school we study and train to overcome disease, to cure our patients and constantly improve our success rates, while forgetting that our profession –and our “mission” for those who still believe in this term- is to care for our patients during the course of their entire lives and illness, including the palliative phase with the approach of death.

In 2011, the American Society of Clinical Oncology (ASCO) issued statements for both oncologists and patients regarding the importance and benefit of early, or concomitant, palliative care for patients with advanced cancer. ASCO stressed that oncologists should initiate candid communication about palliative and end-of-life care as early as possible when death appears inevitable. (5) ASCO also identified as the main barrier to such discussions oncologists’ difficulty with discussions about bad prognosis and impending death, because of their perceptions that such discussions are an indication of their own “failure”, that such discussions are time consuming and not adequately recognized or compensated, and because no sufficient education or training in communication is provided in medical or specialty schools and training. (6)

By contrast, studies show the many benefits of open communication with patients and their families, including improved end-of-life care that is more respectful of patients’ wishes, decreased number of hospitalizations, reduced use of chemotherapy in the last days of life, and less complicated grief in surviving relatives. (7)

The 1997 Institute of Medicine report “Approaching Death: Improving Care at the End of Life” identified the many barriers that impede the delivery of high-quality, compassionate care for patients with advanced illness. (8) Now that “quality of life” has become a standard measure of care, it is time to address “quality of death” as well, including greater attention to the use of Ads. “Having Your Own Say: Getting the Right Care When It Matters Most”, edited in 2012 by B.J. Hammes calls for “a true transformation [of health care] so that all Americans with advanced illness, especially the sickest and most vulnerable, will receive comprehensive, high-quality care that is consistent with their goals and values and that honors their dignity.” (9) New laws that permit adults to sign documents to specify their preferences for future health-care decisions are part of more supportive, coordinated and patient-centered care.

Yet living wills and powers of attorney for health care, while important tools for documentation, do not by themselves address all the morally complex questions that physicians at time face with regard to how to take care of individual persons in particular circumstances. For example, what should be done when the patient’s advance directive does not seem to the treating physician to be in the best interest of a patient with a surrogate? A 2013 article in JAMA Internal Medicine describes a framework to tackle this challenging dilemma and applies it to two clinical cases. (10) The Authors recommend that doctors ask themselves the following questions in attempting to address the potential dilemmas of ADs: “1) Is the clinical situation an emergency that allows no time for deliberation?; 2) In the view of the patient’s values and goals, how likely is it that the benefits of the intervention will outweigh the burdens? ; 3) How well does the AD fit the situation at hand? ; 4) How much leeway did the surrogate provide for overriding the AD?; 5) How well does the surrogate represent the patient’s best interest?” (10)

No study has ever shown ADs to be associated with worse survival or worse end-of-life care. Yet a 2008 survey of Members of the American Society of Clinical Oncology showed that despite caring for patients with a high mortality rate, and often, discussing end-of-life planning with their patients, oncologists do not often write ADs for themselves. Those who have done it, however, have a more comprehensive understanding of their patients’ end-of-life wishes, discuss ADs more frequently with their patients, and feel more knowledgeable and comfortable in helping patients to complete ADs. By contrast, almost 75% of oncologists without ADs tended to have end-of-life discussions not directly with their patients, but rather with family members or loved ones. (11)

The issue of advanced directives is complex. Writing ADs involves deep feelings and considerations of our own mortality and potential suffering. As physicians, we must strive to improve our communication with them and their families and to respect their wishes and priorities, while always being at their side.

1. Searight HR, Gafford J. Cultural diversity at the end of life. American Family Physicians 2007; 72, 515-522.

2.Surbone A , Rajer M, Stiefel R, Zwitter M. (Eds) New challenges in communication with cancer patients. New York, NY: Springer 2012.

3. Fallowfield L, Jenkins V. Communicating sad, bad, difficult new in medicine. Lancet 2004; 363: 312-319.

4. Tulsky JA. Beyond advanced directives: Importance of communication skills at the end of life. JAMA 2005; 20; 294:359-65.

5. American Society of Clinical Oncology. Advanced Cancer Care Planning 2001. Available at http://www.cancer.net/coping/advanced-cancer-care-planning.  (last accessed August 10th 2013)

6. OncoTalk Program, available at http://depts.washington.edu/oncotalk/modules.php (last accessed August 10th 2013)

7. Mack JW, Cronin A, Keating NL et al. Associations Between End-of-Life Discussion Characteristics and Care Received Near Death: A Prospective Cohort Study. J Clin Oncol 2012; 30: 4387-95.

8. Institute of Medicine (IOM). Approaching Death: Improving Care at the End of Life. Washington DC, National Academy Press 1997.

9. Hammes JB. (Ed) Having your own say: Getting the right care when it matters most. CHT Press 2012.

10. Smith AK, Lo B, Sudore R. When previously expressed wishes conflict with best interests. JAMA Intern Med 2013: 173: 1241-5.

11. Schroeder JE, Mathiason MA, Meyer CM, Frisby KA, Williams E and Go RS. Advance directives (ADs) among members of the American Society of Clinical Oncology (ASCO)  Journal of Clinical Oncology, 2008 ASCO Annual Meeting Proceedings, Vol 26, No 15S (May 20 Supplement), 2008: 20611.

 

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