A pilot study on the utility of a more informative living will.
Written advance directives (living wills) provide people with a means of expressing their health care wishes in writing should they be incapacitated at the time medical decision-making is required. The primary focus of living wills is to make known the care one would wish to receive near the end of their life. There are three primary stakeholders of living wills. There is the person (patient) completing the living will to document their treatment wishes. There is the health care team using the living will to help direct decision-making should the patient lack capacity. Finally, there are the surrogate decision-makers looking at the patient's living will for guidance when making acute as well as end-of-life treatment decisions.
The general shortcomings of living wills have been well described. Concerns included living wills' "one size fits all" design and lack of specific guidance as well as the stability of patients' expressed wishes. (1) The lead author has over 20 years of experience attempting to apply living wills in the critical care setting and believes there are several specific limitations to the commonly available West Virginia living will. The current form does not provide enough information for most lay persons to understand the implications of the form and how it may be used in the setting of an acute illness. It does not address the situation of a potentially reversible illness or the temporary loss of capacity. It provides space for one to fill in specific directives about more aggressive care (mechanical ventilation, dialysis, CPR, etc.) without providing any context for these treatments.
Like many advanced directives, the WV living will requires patients to make the same broad care decisions for a terminal condition or a persistent vegetative state. The medical literature has clearly shown that patients with a terminal or end-stage medical condition would desire more aggressive care (surgery, mechanical ventilation, etc.) for a potentially treatable condition than should they be in a persistent vegetative state. (2,3) In other words, people distinguish between having a terminal diagnosis (a disease they will eventually die from despite aggressive treatment but may still have an acceptable quality of life) and being in a terminal state (near death with no chance of improvement).
The commonly available WV living will is designed to ensure one receives only care aimed at comfort and dignity when there is no longer acceptable quality of life. However, living wills are referred to by surrogates and health care providers in a multitude of clinical scenarios including those where there is still some hope for return to an acceptable quality of life. This is especially true in the critical care setting where elderly patients routinely suffer temporary loss of capacity either from their acute disease process or from treatments provided (ex. sedation to tolerate mechanical ventilation). In these scenarios, the current living will provides little if any meaningful direction.
We developed a new living will with the goal of providing more information and structure for those scenarios outside of comfort care, in particular focusing on the common clinical decisions faced by health care providers and surrogates in the intensive care unit. The goal of this pilot study was to determine whether this new format better met the needs of the three primary stakeholders.
There are two hypotheses. 1) The pilot version will be more informative for those completing a living will and would better express their care wishes than the commonly utilized format; and 2) The new format will provide surrogates and health care providers with clearer guidance when making health care decisions for the incapacitated adult patient.
This pilot study was a convenience sample of the three stakeholders described above. Participants were asked to review two different living will formats, a commonly available West Virginia living will and the proposed version. (Appendix A&B) The living wills were de-identified as Living Will 1 and Living Will 2.
After reviewing both formats, participants were asked to complete a short survey. Each survey collected basic demographics, followed by 5 questions such as, "Which living will did you find easier to read?" Each stakeholder's questions differed slightly to reflect their perspective roles.
Residents of a local retirement complex completed the Patient's Survey prior to an open forum on end-of-life planning. Visitors to the Medical Intensive Care Units at Charleston Area Medical Center's (CAMC) General Division completed the Surrogate Survey. Physicians in the CAMC Hospitalist Service completed the Health Care Provider Survey. The Patient and Surrogate surveys were paper surveys while the hospitalists completed an on-line survey.
Acknowledging there is more than one version of the West Virginia living will publicly available, a Google search on "WV Living Will" revealed the most commonly available on-line version. The top two matches provided the same living will format. (4,5) CAMC provides the same version to patients wishing to complete a living will during their hospitalization. This version is also provided by the Human Resources Department of West Virginia University. This version was identified as the "commonly used WV living will".
Participation in this convenience survey was voluntary for all three survey populations. The protocol and consent were IRB approved. Participants were provided with information regarding the pilot and asked to sign a consent form (paper or electronic) prior to completing the survey. Descriptive statistics are provided for the different stakeholder groups.
Forty-eight (48) participants completed surveys: 11 Patient Surveys, 25 Surrogate Surveys and 12 Health Care Provider Surveys. The demographics for each group are provided in Table 1. The questions asked and responses are provided in Table 2.
Over 70% of respondents to the Patients' Survey indicated the pilot version would allow them to better express their health care wishes and felt it would provide better guidance for their surrogates. There was also a clear preference for the pilot version for health care providers and surrogate decision makers. In response to questions (2-4) exploring how well each living will assisted their decision-making, 89% of responses to these questions favored the pilot form.
The results of this pilot study support our hypothesis that there is a need for a living will that provides more information and direction than the version currently used in most settings. Specifically, one that better addresses the needs of all who might complete a living will and not just those who desire little, if any, aggressive care. The majority of respondents in all three stakeholder groups indicated a preference for the pilot version.
The goal of this study was not to show that our pilot version is the optimal format for a living will. It is also not meant to suggest the current West Virginia living will needs to be replaced. The current version clearly meets the goals stated at the top of the form, to help a patient describe "the Kind of Medical Treatment I Want and Don't Want if I have a Terminal Condition or Am in a Persistent Vegetative State." (4) In addition, the West Virginia Center for End-of Life Care has developed a FAQ pamphlet that wonderfully explains the rights of the patient and the procedural elements when completing an advance directive. (5) Thus the needs of those at the very end of their life are well met by the currently available living will and supporting literature.
These results support our hypothesis that patients, caretakers and providers may prefer a more detailed living will that covers specific scenarios. As discussed earlier, the critically ill elderly patient routinely presents the scenario of a patient with 1) significant co-morbidities that have some impact on their quality of life, 2) temporary incapacity and 3) a reasonable chance of recovering to their pre-morbid quality of life. In these scenarios, and especially those where the patient carries a terminal diagnosis but hasn't reached a terminal state, there is a need for a different, or expanded, living will that attempts to provide more specific guidance.
Forty-six percent (46%) of respondents indicated they found the currently utilized living will easier to read than the pilot version, including 50% of physician respondents. The survey questions did not address why respondents found either version easier to read. Reading analysis of the two living wills suggests that the pilot model is easier to comprehend. The Flesch Reading Ease Scores (100: very easy to read, 0: very difficult to read) 3 were 14 for the current WV living will and 36 for the pilot version. The Flesch-Kincaid score, (which correlates ease of comprehension to educational grade level) 3 was 19.3 for the current living will compared with 12.8 for the pilot living will. One simple reason might be that the current WV living will is shorter than the pilot version.
The new living will's Flesch-Kincaid score of 12.8 is still significantly higher than the usual target of 6-8 for a consent form. (4) The challenge in balancing content with ease of reading for a living will is unique. Most consent forms cannot replace the verbal consent process and serve to supplement and document this critical discussion. Inherent in these discussions is the opportunity for the lay person to ask questions to clarify any terms or concepts they don't understand. Living wills can be completed without speaking with anyone, increasing the pressure to provide written content that can address life and death concepts in the simplest language possible.
We believe the greatest potential for this living will pilot is improving communication between the patient and their designated Medical Power of Attorney (MPOA). A living will can never anticipate and plan for all medical scenarios one may face. We agree with the West Virginia Center for End-of Life Care that a MPOA provides the greatest flexibility for surrogate decision-making. (5) A MPOA is empowered to make any medical decisions a patient might make for themselves, covering every possible scenario. Unfortunately, most people given a MPOA are no more knowledgeable of the potential medical decisions they could face as a surrogate than the patients themselves. Thus, a more informative living will could serve as a discussion guide to help address in advance some of the common decisions the patient and surrogate may face at a critical time.
The limitations of this study are consistent with many pilot studies, in particular the small number of respondents. While the study population demographics are fairly consistent with statewide demographics this further limits generalization of this these results. Convenience sampling also interjects the potential for bias but was unavoidable given the logistical support available. Finally, all but one respondent indicated they had at least a high school diploma. Given the 12th grade comprehension level of the pilot living will, patients with less education might not be able to comprehend this version adequately enough for it to be useful.
The most commonly available West Virginia living will may provide sufficient documentation for patients at the very end of their life. However, for patients who might desire more aggressive care where there is hope for a return to their present quality of life, this version is not adequate. For these patients, our preliminary data suggests a need for a more informational and instructional written advance directive. This expanded directive should be made available to patients along with the current version so they might select the living will that best meets their situation. Most importantly, this living will might serve as an important adjunct to a medical power of attorney.
The authors wish to thank Diane Gouhin, executive director of Edgewood Summit, for her support of the study and her assistance in arranging the educational forum presented. Also to Cindy Hanna, research coordinator, for her assistance throughout the project and in particular her review of the manuscript. References
(1.) Fagerlin A, Schneider CE: Enough: the failure of the living will. Hastings Center Report 2004, 34:30-42
(2.) Fried TR, Bradley EH, Towle VR, Allore H. Understanding the treatment preferences of seriously ill patients. N Engl J Med 2002;346:1061-6.
(3.) Manippo K, DePriest JL. How people's advanced directives differ for end-stage medical conditions compared to conditions that leave them permanently unconsciousness. Journal of Clinical Ethics 2009;20:310-315
(4.) "State of West Virginia Living Will" [internet] West Virginia University Division of Human Resources. http://benefits.hr.wvu.edU/r/download/73742. accessed April 10 2010.
(5.) "Advance directives for health care decision-making in West Virginia: Frequently asked questions and forms." [internet] West Virginia Center for End-of-life care. http://www.wvendoflife. org/MediaLibraries/WVCEOLC/Media/public/ PublicFAQ.pdf. accessed July 2012.
(6.) "Virginia Advance Medical Directive", [internet] Virginia Dept of Health; http://www.vdh.virginia. gov/OLC/documents/2008/pdfs/2005%20 advanced%20directive%20form.pdf accessed November 26 2012.
(7.) "Advance directive for a natural death ('Living Will')",[internet] North Carolina Medical Society. http://www.ncmedsoc.org/non_members/public_resources/livingwillform.pdf. accessed November 26 2012.
(8.) "Advance care plan" [internet] Tennessee Department of Health http://health.state.tn.us/ AdvanceDirectives/Advance_Care_Plan.pdf. accessed November 26
(9.) "You have the right: Using advance directives to state your wishes about your medical care" [internet] Ohio Department of job and family services. http://www.odjfs.state.oh.us/forms/file. asp?id=1733&type=application/pdf. accessed November 26, 2012.
(10.) "Life Choices" [Internet] Attorney General's Office of Missouri http://ago.mo.gov/publications/ lifechoices/lifechoices.pdf. accessed November 26
(11.) "Advance directive for medical/surgical treatment (Living Will)" [internet] Colorado advance directives consortium. http://www. coloradoadvancedirectives.com/LW_form.pdf. accessed November 26
(12.) Wikipedia contributors. "Flesch-Kincaid readability test." Wikipedia, The Free Encyclopedia. Wikipedia, The Free Encyclopedia, 29 Nov. 2012. Web. 30 Nov. 2012.
(13.) Paasche-Orlow MK, Taylor HA, Branca FL, Readability Standards for Informed-Consent Forms as Compared with Actual Readability. New England Journal of Medicine, 2003;348: 721-726.
(14.) Whetstine LM. Advanced directives and treatment decisions in the intensive care unit. Critical Care 2007;11:150.
Jack L. DePriest, MD, MACM
Program Director, Internal Medicine Residency, WVU,
Charleston Division, WV
Phillip Cox, DO
Fellow, Pulmonary/Critical Care Medicine, Penn State
Hershey Medical Center, PA
Ashley Bryant, MD
Hospitalist, Thomas Memorial Hospital, Charleston, WV
Corresponding Author: Jack L. DePriest, MD MACM, 3110 MacCorkle Ave SE, Charleston WV, 25304; email firstname.lastname@example.org
Table 1: Demographics Patient Survey (n=11) Gender Male: 2 Female: 9 Age Mean: 80 [+ or -] 14 years Ethnicity Non-Hispanic White (NHW): 11 Highest level of High School Degree:3 College degree: 7 education Prior experience with Yes: 7 No: 3 living will? Surrogate Survey (n=25) Gender Male: 10 Female: 15 Age Mean: 52 [+ or -] 17 years Ethnicity Non-Hispanic White : 25 Highest level of High School Degree: 14 Did not finish education HS: 1 Prior experience with Yes: 11 No: 13 living will? Physician Survey (n=12) Gender Male: 4 Female: 8 Ethnicity Non-Hispanic White: 9 Other: 3 Patient Survey (n=11) Gender Age Ethnicity Highest level of Post-grad degree: 1 education Prior experience with living will? Surrogate Survey (n=25) Gender Age Ethnicity Highest level of College degree: 10 education Prior experience with living will? Physician Survey (n=12) Gender Ethnicity Years in practice: < 2 years: 2 2-5 years: 4 >5-10 years: 1 > 10 years: 5 Specialty: Internal Medicine: 7 Family Medicine: 4 Other: 1 Table 2: Survey results Patient Survey WV Pilot Living Living Will Will Which living will did you And easier to read? 7 4 Which living will better helped you understand 2 9 the types of medical decisions you need to think about when filling out a living will? Which living will would better help you 3 8 express your health care wishes if you were unable to tell your doctors yourself? Which living will do you think would be more 3 8 helpful for your family if they had to make medical decisions for you? If you wanted to fill out a living will, which 3 8 would you prefer to use? Surrogate Survey Which living will did you find easier to read? 9 16 Which living will better helped you understand 1 24 the types of medical decisions you may need to make as a surrogate decision maker for someone else? Which living will did you think better allowed 3 22 someone to express their health care wishes in writing? Which living will would be more helpful to you 1 22 if you had to make medical decisions for the person who filled out the form? If you wanted to fill out a living will for 6 17 yourself, which would you prefer to use? Physician Survey Which living will was easier to read? 6 6 Which living will would better help you 2 10 understand your patient's general attitudes towards end-of-life treatment preferences? Which living will would be more helpful when 2 10 making specific treatment decisions for your patient? Which living will would better facilitate 1 11 end-of-life discussions with your patient's surrogate decision-makers? If your patient indicted they wished to 2 10 complete a living will, which form would you recommend?
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|Title Annotation:||Research Article|
|Author:||DePriest, Jack L.; Cox, Phillip; Bryant, Ashley|
|Publication:||West Virginia Medical Journal|
|Date:||Jan 1, 2014|
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