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Assessing advance care planning readiness in individuals with kidney failure.

The Patient Self-Determination Act (PSDA) of 1990, which went into effect in 1991, requires facilities that receive Medicare and Medicaid reimbursement to provide adult patients written information about their rights to accept or refuse medical treatment and to execute advance directives. Despite this law, in a study published 2 years later, only 21% of persons receiving hemodialysis reported having completed advance directives (Holley, Nespor, & Rank, 1993). More recent studies showed improvement in advance directive completion rates in individuals who receive hemodialysis (Calvin, 2004, 35%; Holley et al., 1999, 51%; Moss, Hozayen, King, Holley, & Schmidt, 2001, 45%; Weisbord et al., 2003, 32%). Apart from the increased morbidity associated with kidney failure (United States Renal Data System, 2005) and 14 years after the PSDA, advance directive completion rates by persons receiving hemodialysis continue to average below 51% (Calvin, 2004, 35%; Holley et al., 1999, 51%; Moss et al., 45%; Weisbord et al., 2003, 32%). Assessment of readiness to participate in discussions about end-of-life care is necessary for the health care team to respect patients and where they are on their illness trajectory as well as to honor patients' end-of-life treatment wishes. The initial development and psycho metric testing of the Advance Care Planning Readiness Instrument (ACPRI) is reported here.

Background

Several benefits of advance directives, particularly the promotion of patient autonomy, have been offered (Lynn & Teno, 1993; Mezey, Evans, Golub, Murphy, & White, 1994; E. Perry et al., 1995). Some researchers, however, have questioned the efficacy of advance directives for the purpose of expanding patient autonomy (Blondeau, Valois, Keyserlingk, Hebert, & Lavoie, 1998; Tonelli, 1996). Investigators found that older patients and patients with chronic illnesses (e.g., heart failure, chronic obstructive pulmonary disease, cancer, chronic renal insufficiency) were more satisfied with their primary care physicians after discussing advance directives (Tierney et al., 2001). Further, advance care planning has been shown to increase agreement in patient and family member end-of-life treatment wishes (Schwartz et al., 2002).

Patients on peritoneal dialysis and hemodialysis have reported favorable attitudes toward advance directives and they understand their possible benefits (E. Perry et al., 1995; L.D. Perry, Nicholas, Molzahn, & Dossetor, 1995); however, there continue to be barriers to advance directive implementation by patients on dialysis. Common reported reasons that patients do not complete an advance directive are: (a) the belief that advance directives are unnecessary (E. Perry et al., 1995; Sam & Singer, 1993); (b) reluctance to think about death or being in a poor health state (Curtis, Patrick, Caldwell, & Collier, 2000; Hamel, Guse, Hawranik, & Bond, 2002); (c) procrastination (Beck, Brown, Boles, & Barrett, 2002; Hamel et al., 2002; E. Perry et al., 1995; Sam & Singer, 1993); and (d) confusion about the legal documents (Marchand, Cloutier, Gjerde, & Haq, 2001).

Several authors noted obstacles to advance care planning discussions as perceived by health care professionals. A commonly reported barrier is that health care providers consider advance care planning to be time-consuming (Curtis et al., 2000; Ebell, 1994; Norlander & McSteen, 2000; Perry, Swartz, Smith-Wheelock, Westbrook, & Buck, 1996; Wissow et al., 2004). In one study, 30% of the acute care attending physicians questioned (N = 60) stated that they were "uncomfortable" speaking with patients about resuscitation (Stolman, Gregory, Dunn, & Levine, 1990, p. 657). Nurses have also described their difficulty in broaching the subject of advance directives with patients because of the nurses' discomfort with the topic (Norlander & McSteen, 2000). Nurses also see advance directives discussions as being the physician's duty and a potential trigger of the patient's loss of hope (Norlander & McSteen, 2000). Likewise, physicians reported being concerned about diminishing hope by discussing end-of-life care with patients (Curtis et al., 2000). Physicians were reluctant to discuss advance care plans because they perceived the patient as not being ready for the discussion (Curtis et al., 2000).

Nurses caring for patients on dialysis held fewer advance care planning discussions with patients com pared with other health care providers. Nurses working with patients in an acute care dialysis setting (N = 43) reported having discussed patients' treatment preferences with only 5% of the patients (L.D. Perry et al., 1995). Researchers found that, on average, social workers (N = 26) recollected discussing advance directives with 60% of patients on dialysis, nephrologists (N = 31) with 38%, registered nurses (N = 89) with 25%, and technicians (N = 38) with 20% (Perry et al., 1996).

Beland and Froman (1995) developed a short instrument, the Life Support Preferences Questionnaire (LSPQ), to determine treatment preference and stability of life support preferences. The instrument, which consists of six vignettes, was later translated into Spanish (Froman & Owen, 2003). While this instrument may be used to promote discussion of life support preferences, it has only been tested by "healthy adults" (Beland & Froman, 1995, p. 308) and "community-dwelling active adults" (Froman & Owen, 2003, p. 34) who were perhaps far removed from actual treatment decisions. The LSPQ does not measure readiness to discuss end-of-life preferences in persons who have a chronic illness.

Curtis et al. (2000) surmised that clinicians may inaccurately formulate assumptions about a patient's readiness to discuss care at the end of life. Determining patient readiness is the first step in tailoring advance care planning discussions for the individual patient. An instrument based on the theory of personal preservation (Calvin, 2004) would help health care providers identify individual patients who would most benefit from a discussion of end-of-life treatment preferences versus those who are not yet ready. For some patients, their desire for personal preservation overshadows and conflicts with making end-of-life decisions in advance, suggesting that end-of-life treatment preference discussions with these patients may be futile. For other patients, the desire for personal preservation is carefully weighed with their end-of-life treatment wishes and they are ready to formulate advance care plans. An instrument as such may offer patients a time-efficient, yet sensitive approach to the subject of advance care planning, making broaching the subject easier for both patients and health care providers. It may follow that when patients who are ready to discuss end-of-life treatment preferences are identified (i.e., a low score on the ACPRI), a thorough conversation about advance care planning may ensue. As patients are identified as being ready, more patients may actually formulate advance directives. For patients who are identified as not ready (i.e., a high score on the ACPRI), health care providers may honor patients' desire for personal preservation, which would likely empower patients and foster a trusting patient-health care provider relationship. The purpose of this article is to report findings of the initial steps toward the development of an instrument to assess readiness of patients to discuss advance care plans.

Conceptual Framework

When adults who had been on hemodialysis for at least 3 months were invited to talk about medical treatments at the end of their lives, patients focused on living, not dying and the theory of personal preservation, consisting of three phases, was generated (Calvin, 2004) (see Figure 1). In the first phase, patients acknowledge a shortened lifespan; they know the odds and they have made postmortem plans (Calvin, 2004). The interrelation of patients' acquired knowledge and personal beliefs contributed to a redefined sense of self as persons receiving hemodialysis; thus, the second phase of the theory of personal preservation is defining individuality (Calvin, 2004). Individuals who receive hemodialysis make treatment decisions on a daily basis and when prompted to think about and discuss end-of-life medical treatments, they shift to the culminating phase of the theory, personal preservation (Calvin, 2004).

[FIGURE 1 OMITTED]

The final phase of the theory, personal preservation, is an interactive paradox of being responsible (helping others, self-protecting, self-ruling) while taking chances (relying on health care provider competency, recognizing risky situations) (Calvin, 2004). On one hand, patients express being responsible by (a) helping their family members meet their needs, (b) protecting themselves by trusting their family members with end-of-life treatment decisions and by distancing themselves from death (e.g., avoiding end-of-life plans), and (c) self-ruling by weighing whether advance care planning fosters their autonomy and seeking personal control. On the other hand, patients also express that they take chances because they must rely on health care provider technical competence, and they sometimes find themselves in risky interpersonal situations with health care providers, which may compromise trust.

The tension of being responsible and taking chances, conceptualized as personal preservation, provides one possible explanation of patients' decisions to make or not make advance care plans (Calvin, 2004). This paradoxical approach to personal preservation is the focus of the development of this instrument. When patients are invited to discuss end-of-life treatment preferences, they carefully weigh their responsibilities and risks while focusing on life and living. For example, if a patient has responsibilities of caring for young children or if a patient feels that the discussion and documentation of end-of-life treatment wishes do not foster autonomy because others truly hold the power (Calvin, 2004), the patient would be less likely to want to discuss end-of-life treatment preferences. Further, if a patient does not trust the health care provider, a discussion about end-of-life treatment preferences is not likely to occur. The theory fosters understanding patients' behavior and the process by which they make decisions about end-of-life treatments. The concept of personal preservation (Calvin, 2004) is expected to be useful to indicate a patient's readiness to discuss end-of-life treatment preferences.

Method

Item Development

Forty-nine items were generated from the patient quotations that were used to formulate the crux and final phase of the theory of personal preservation (Calvin, 2004). A 7-point Likert-type summated rating scale was chosen (1=completely disagree to 7=completely agree) to measure current attitudes of individuals with kidney failure regarding their own personal preservation.

Sample for Estimating Content Validity

In the next step toward instrument development, experts assessed content validity of the initial item pool. The approach to content validity assessment as described by Lynn (1986) was used by both a professional panel of four experts in end-of-life care and a patient panel of five persons currently being treated with hemodialysis. The 49 items were independently reviewed by a professional panel consisting of two nurses, one physician-bioethicist, and one social worker. The panel of five patients on hemodialysis consisted of four females and one male. The three White participants had written advance directives and the two Black participants did not. Ages of the patients ranged from 29-88 years (mean=56.6) and the time on dialysis ranged from 2.5-12 years.

Sample for Estimating Reliability

A second sample was used to pilot test the revised ACPRI based on the results of the content validity testing with another sample of 10 individuals with kidney failure, 6 females and 4 males. The racial/ethic breakdown of the sample was four Blacks, four Hispanics, and two Whites. Four patients had a living will. Ages of participants ranged from 38-71 years (mean=53.3) and their time on dialysis ranged from 4 months to 14 years.

Procedures

Approval to conduct this research was obtained from the university and hospital institutional review boards. To participate in this study, patients were assessed by the dialysis care team to be able to express opinions about advance care planning, at least 18 years of age, able to read, write, and speak English, and willing and able to (a) rate the instrument for clarity and relevance with assistance from the investigator listed as first author (AOC) (n=5) or (b) complete the instrument and have a discussion with the investigator (n=10), each lasting about 1 hour during a dialysis session. Transplant candidates and patients receiving hemodialysis for less than 3 months were not included in the study. The investigator (AOC) read the informed consent document to the patients, invited questions, ensured understanding, and then asked patients to sign the form. Patients were given a copy of the consent form to keep.

Procedures for Estimating Content Validity

Both professional and patient panels were asked to rate each item on two factors, relevancy and clarity, using a scale of 1-4 (one being lowest and four being highest). The professional panel was contacted by e-mail with an attached form to complete the ratings and add any comments they deemed helpful. Professionals were sent a box of stationary to thank them for sharing their expertise. The patient panel form was the same as that presented to the professional panel, but was administered by the investigator (AOC) using a paper and pencil, face to face during each inpatient's hemodialysis treatment. These patients usually received chronic hemodialysis in a clinic and were hospitalized for an acute condition. The investigator arrived on the inpatient hemodialysis unit on a weekday between 9:00 a.m. and 3:00 p.m. One of the available nurses assisted in identifying patients who met the study criteria. When dialysis was satisfactorily underway, the investigator introduced herself to patients and verified inclusion criteria. After explaining the study, answering any questions, and inviting participation, the investigator obtained informed consent. Discussion with the patients regarding the relevance and clarity of the items was tape recorded and used to further enhance understanding of issues regarding the items. Patients were thanked for their participation with a $5 Wal-Mart gift card.

Procedures for Estimating Reliability

The investigator (AOC) collected data during weekdays on the inpatient unit with the assistance of an available nurse. After obtaining informed consent, patients were offered the option of completing the survey independently or having the survey read to them. Researchers have shown that diverse methods of survey administration (i.e., mail and telephone) did not affect validity (Galobardes et al., 1998).

Results

Content Validity

The professional panel ratings of the 49 items were more varied when compared to patient panel ratings. For the most part, patients rated the items as very relevant and very clear. The content validity index (CVI) or the proportion of expert ratings of 3 or 4 for each of the 49 items was calculated. For nine experts (four professional experts and five patient experts), the required CVI was 0.80 (p >. 05) (Lynn, 1986). The overall CVI of the 49 items was 0.90. The CVI was <0.80 for 17 items; as a result, 10 of the 17 items were deleted. For example, at least two professionals and two patients considered item 6 (My family and friends will feel hurt when I die) and item 16 (I don't think about dying because it stresses me) irrelevant. At least 2 professionals and 2 patients considered item 31 (You just can't give up everything) unclear, so it was also deleted. Five of the 17 items were kept based on patients' CVI ratings, and two were revised. For example, professionals rated item 7 (My family and friends may feel guilty if they have to decide to "pull the plug') and item 15 (I want everything possible to keep me alive) as unclear, but patients considered them to be clear, so these items were retained. Item 22 (Making medical treatment plans ahead of time helps protect me and my wishes) is an example of an item that was rated as unclear by both professional and patients, so it was revised to read Making medical treatment plans (for example, planning or not planning for CPR) ahead of time helps protect me and my wishes. Nine additional items were deleted to reduce redundancy and begin optimization of the scale length. Evidence for content validity was supported in this initial work.

Reliability

One patient completed the 30-item survey independently on paper using a pen and nine required or requested assistance in reading and filling out the survey (see Table 1). After administration of the instrument, patients had the opportunity to discuss various aspects of the instrument (e.g., format, ease in completion, understanding). Patients consistently reported that the ACPRI was helpful and not difficult. One patient stated that it helps me make decisions and another stated that the questions were good and that the survey "gave me something to think about." With the data from these 10 patients, we have initial evidence of the reliability of the scale (Cronbach's alpha=0.88). Mean item score was 4.29 (SD-2.58; median=5). The average total score was 128.7 with a standard deviation of 18.7 and a range of 101-154 (median=130). The 30 items will be retained for testing in a larger sample.

Discussion

Advance directive completion rates may remain low among persons with kidney failure (Calvin, 2004; Weisbord et al., 2003) because health care professionals are not first assessing patient readiness to discuss advance care plans (Curtis et al., 2000). The authors of this paper are unaware of an instrument to measure patient readiness for advance care planning. After additional testing in a large sample of individuals with kidney failure, the ACPRI may show further evidence of its reliability and validity.

The Flesch-Kincaid grade level of the ACPRI is 6.7, which may be high for some patients. A goal of the ACPRI is to stimulate dialogue between patients and health care providers about advance care planning. Unlike mailed surveys, the ACPRI can be used by health care providers who are available to read and clarify the survey with their patients. A broader goal of the ACPRI is to promote peaceful deaths for patients regardless of their implementation of advance directives.

Implications

The results of this pilot work showed that the ACPRI has the potential to ease the initiation of an advance care planning discussion for health care providers. The dialysis care team may use the ACPRI to ascertain patients' readiness for advance care planning. Lower total scores on the instrument indicate that individuals are ready for advance care planning and higher scores indicate that individuals are not yet ready. A large study is planned to test the sensitivity of the scores in predicting readiness for advance care planning. Findings from the large scale study are expected to predict what score or range of scores is more precise in predicting readiness and to further examine additional aspects of reliability and validity. This instrument could be useful as a first step toward promoting a good death for individuals with kidney failure.

Summary

This research produced an instrument with a content validity index of 0.90 and an internal consistency reliability coefficient of 0.73. These initial testing results hold promise of a valid and reliable measure of readiness for advance care planning.

References

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Moss, A.H., Hozayen, O., King, K., Holley, J.L., & Schmidt, R.J. (2001). Attitudes of patients toward cardiopulmonary resuscitation in the dialysis unit. American Journal of Kidney Diseases, 38, 847-852.

Norlander, L., & McSteen, K. (2000). The kitchen table discussion: A creative way to discuss end-of-life issues. Home Healthcare Nurse, 18(8), 532-539.

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Weisbord, S.D., Carmody, S.S., Burns, F.J., Rotondi, A.J., Cohen, L.M., Zeidel, M.L., et al. (2003). Symptom burden, quality of life, advance care planning and the potential valued of palliative care in severely ill hemodialysis patients. Nephrology Dialysis Transplantation, 18, 1345-1352.

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Amy O. Calvin, PhD, RN, is Assistant Professor, The University of Texas Health Science Center at Houston, School of Nursing, and Palliative Care Nurse Researcher, St. Luke's Episcopal Hospital, Texas Medical Center, Houston, TX.

Lillian R. Eriksen, DSN, RN, is Associate Professor, The University of Texas Health Science Center at Houston, School of Nursing, and Director of Nursing Research, Christus Sr. Joseph Hospital, Houston, TX.

Source of Support: This study was supported by the Dean's Research Award, The University of Texas Health Science Center at Houston, School of Nursing.
Table 1
Advance Care Planning Readiness Instrument

1. I worry about what my family and friends will do without me.

2. I find it helpful to talk about the end of my life.

3. I can relax and rely on most of the nurses and doctors to
   take good care of me.

4. Most nurses and doctors here don't seem to really care about me.

5. Most of my nurses and doctors pay attention to what I have to say.
   Most nurses and doctors will do what's right for me.

7. I don't want my family and friends to worry about my bills.

8. I don't like to think about dying.

9. I want to focus on living life in a way that means something to me.

10. I can't make decisions about the end of my life ahead of time
    because there are too many things I'm not sure of right now.

11. I try to make sure nurses and doctors don't make mistakes when
    caring for me.

12. I have the freedom to make choices about what I want or don't want.

13. Most nurses and doctors here seem to think I want to keep enjoying
    life as long as I can.

14. As I approach the end of my life, I have family/friends that I can
    trust to make decisions for me.

15. I don't want to give up everything in my life.

16. Most nurses and doctors treat me like I don't exist anymore.

17. I'm not sure I can trust most of my nurses and doctors.

18. Writing down what I want to happen to me at the end of my life
    will allow me to die with dignity.

19. Sometimes I have to do what I have to do even though I know the
    end is coming.

20. Making medical treatment plans (for example, planning or not
    planning for CPR) ahead of time help protect me and my wishes.

21. I want everything possible to keep me alive.

22. My family and friends need me.

23. At the end of my life, I talk to my family/friends about what
    I want to be done to me in the hospital.

24. Making medical treatment plans ahead of time (advance directives)
    does not guarantee that my wishes will be followed.

25. There is too much I don't know right now for me to make end-of-life
    decisions.

26. Most nurses and doctors seem to treat me like I'm dying.

27. I watch out for myself to make sure nothing goes wrong.

28. I know my family/friends will do what is best for me.

29. My family and friends may feel guilty if they have to decide
    to "pull the plug."

30. Most nurses and doctors listen to my opinions.
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Author:Calvin, Amy O.; Eriksen, Lillian R.
Publication:Nephrology Nursing Journal
Geographic Code:1USA
Date:Mar 1, 2006
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