Literature review

With advance care planning, “clinical care is shaped by a patient’s preferences when the patient is unable to participate in decisionmaking”(Teno 1994). A written and legal document called an advance directive (either a living will or durable power of attorney) is one outcome of good advance care planning. Advance care planning is based on the ethical principle of autonomy (i.e., a competent person has the right to determine what happens to his own body). Good advance care planning ought to result in patients understanding their prognoses and likely outcomes of care, and being provided with the opportunities to reflect and formulate on important goals and plans. Key outcomes potentially include the following:

• The patient was informed and understood the option to undertake advance care planning;
  
  
• Physician and patient communicated about the patient’s prognosis and goals of care in a timely fashion;
  
  
• These discussions were documented; and
  
  
• Appropriate contingency plans were formulated that ensured that the patient’s informed preferences were honored.

I. Listing of potential instruments

References based on a review of the literature on advance care planning are the following.

f. Teno, 2000 -  a  interview administered instrument that includes the domains advance care planning, physical and emotional comfort, communication, control and respect, closure, self-efficacy, spiritual support, coordination of care, and communication and informing.


II Review of potential instruments

Not applicable for this domain.

III. Recommended instruments for Toolkit

Toolkit of Instruments to Measure End of Life Care (TIME)

i. Conceptual and Measurement model (Does the scale represent a single domain or do model scales measure distinct domains? Is the variability of the scale reported? What is the intended level of measurement (i.e. ordinal, interval, ratio, or category?)

The TIME Surveys (including the Afterdeath Bereaved Family Member Interview) are based on the conceptual model of patient focused, family centered medical care. Patient focused, family centered medical care includes four key components: providing the desired physical comfort and emotional support for the patient, promoting shared medical decision-making, treating each person as an individual by understanding his/her needs and expectations, and attending to the needs of those that care for and love the dying person. As tools for quality improvement, the TIME surveys provide health care providers with "problem scores" (which indicate opportunities to improve quality of care) as well as scaled ratings.

The Afterdeath Bereaved Family Member Survey was designed to measure the family member’s perspective regarding the extent to which a health care institution met the needs and expectations of a dying person and his/her family members. The instrument contains seven domains (informing and decision making, advance care planning, coordination, achieving control and respect, physical comfort, surrogate emotional support, and self-efficacy) and a set of overall rating questions. As a result of the several different types of questions included in the tool, there are several types of response categories, including:

More specifically, the interview defines advance care planning as a process that supports the ethical principle of autonomy (i.e., the right of a competent person to determine what happens to his/her own body). The outcomes of advance care planning (e.g., durable power of attorney, a living will or an advance directive) ensure that a patient’s preferences continue to shape his/her medical care when she/he loses consciousness or no longer is competent to make rational decisions. Based on this approach, the interview contains seven (7) questions that address advance care planning. Within this set of questions, the interview asks family members about both the process of advance care planning (i.e., communication between medical staff and patient/families about patients wishes and whether care is consistent with those wishes) and the outcomes of this process (i.e., patient’s living will or durable power of attorney, if applicable). Response categories for advance care planning questions are "yes/no" or "yes/no/don’t know".

ii. Reliability (Did they address internal consistency? Did they address reproducibility?)

Internal consistency of each of the survey’s domains was tested and found to be acceptable based on psychometric testing. Advance care planning is one of the two problem scores that demonstrates borderline acceptability. Each of these problem scores contains only three or four items. According to the authors, the choice to use so few questions for these problem scores was justified in order to minimize response burden and maintain patient centered reports as the question structure.

*Due to a problem with a skip pattern while administering the survey,

the Physical Comfort problem score has not yet been validated.

Test-retest reliability has been addressed by collecting data from 30 family members approximately one month after the initial testing of the survey. The Kappa and ICC statistics revealed evidence of stability of the reported responses.

iii. Validity (How did they address content related validity? Any information on construct related validity? Any information on criterion validity?)

Content validity is supported by the process of generating domains and questions. Domains were identified from a review of expert guidelines and an analysis of focus groups conducted with bereaved family members from different geographic regions in the U.S. and from various settings of care. Survey questions underwent cognitive testing and review by an expert panel.

Construct validity was evaluated by examining the correlation between a problem score (higher score meaning more opportunity to improve) and its corresponding overall rating measure (higher score meaning better care). Criterion validity was evaluated by examining the correlation between a problem score and the overall rating of satisfaction with care (higher scores for both meaning more opportunity to improve).

*Due to a problem with a skip pattern while administering the survey,

the Physical Comfort problem score has not yet been validated.

As the table shows, the Advance Care Planning problem score exhibited a low correlation with the overall satisfaction scale. The authors suggest that this may reflect the low rate of observed problems that were found in the health care institutions that provided the sample for the psychometric testing; all of these institutions were known for their excellent quality of care.

iv. Responsiveness (Any information? Has the scale ever been used as an outcome measure? If so, in what populations?)

Information is not yet available.

v. Interpretability (What populations has it been applied to? Is the score translated into a clinically relevant event? Does the score predict outcome events?)

Problem scores translate into a clinically relevant event in that they quantify opportunities for health care institutions to improve. Higher scores indicate more opportunity to improve. National norms for the problem scores will be available in by Winter, 2001.

The instrument has been used with bereaved family members from three sites of care: hospitals, outpatient hospice services, and nursing homes. Preliminary psychometric testing data was based on family members from the New England area. The instrument is currently being used with a nationally representative sample, and data from this study will be available by Winter, 2001.

vi. Burden (Any information on cost or time to administer? Does the instrument impact on the respondent? How long does a survey take to complete? Response rates? Any problems with missing data?)

The full instrument contains 133 questions, but the instrument has been shortened and tailored for specific services and sites of care (hospice, hospital, nursing home). In addition, health care institutions can further shorten the instrument by choosing specific domains upon which to focus. The Advance Care Planning problem score of the interview contains seven (7) questions.

The full instrument was used for validity and reliability testing. For this survey, the average length of time to complete the survey was 28.5 minutes (median: 25.8 minutes; range: 14-70 minutes). The response rate was 63.4%, when those potential respondents we were unable to contact or locate were excluded from the denominator. The majority of interview respondents had either a positive (60.9%) or very positive (14.7%) response to being interviewed, with only 7 respondents having a negative experience according to the interviewer. No problems with missing data were reported.

vii. Alternative Forms (What are the modes of administration? Alternatives? If alternatives exist, provide what is known for each of the above categories?)

An interviewer administers the instrument, either by telephone or in-person. A Scoring Packet is available from the author; the Packet includes a pre-formatted Microsoft Excel Worksheet and an accompanying Scoring Guide. In addition, a computerized survey program for use with a palm pilot and an accompanying web-based interface for analysis are being developed.

viii. Cultural and Language Adaptations (Any information?)

The instrument has been developed and tested among English-speaking families in the U.S.

ix. Conceptual Rational for Recommendation

The After-death Bereaved Family Member Interview is a valid and reliable survey tool. The Advance Care Planning portion of the Interview is short (7 questions) and covers both the process of advance care planning and it outcomes. The problem scores clearly indicate areas in which a health care institution has opportunities to improve. As a result, problem scores are actionable and, therefore, facilitate quality improvement efforts.

V. Priorities for Future Research

i. One of the priorities for future research is to better define the contents and scope of advance care planning and ensure that it is easily incorporated into ambulatory medical practice. Advance care planning ought to be tailored to patients’ underlying health status, social situation, and age. Once we have further defined this vision for advance care planning, then performance indicators should be developed. I would recommend applying those performance indicators only if there is evidence that advance care planning yields outcomes that are beneficial for the patient.

ii. Guidelines need to be developed regarding which patients should be targeted for more in-depth advance care planning. When should a physician and patient form contingency plans for the management of the patients dying? Based on these criteria, outpatient audits could be developed to measure performance.

References

Danis M, Southerland L, Garrett J, et.al. A prospective study of advance directives for life- sustaining care. N Engl J Med 1991;324:889-895.

Emanuel EJ, Weinberg DS, Gonin R et.al. How well is the patient self-determination act working?: An early assessment. Am J Med 1993;95:619-628.

Miles SH, Koepp R, Weber EP. Advance end-of-life treatment: a research review. Arch Intern Med 1996; 156:1062-1067.

Morrison RS, Morrison EW, Glickman DF. Physician reluctance to discuss advance directives: An empirical investigation of potential barriers. Arch Intern Med 1994;154: 2311- 2318.

Morrison RS, Olson E, Mertz KR, et.al. The inaccessibility of advance directives on transfer from abulatory to acute care settings. JAMA 1995;274:478-482.

Reilly BM, Magnussen CR, Ross J, et.al. Can we talk? Inpatient discussions about advance directives in a community hospital. Arch Intern Med 1994; 154: 2299-2308.

Silverman HJ, Tuma P, Schaeffer MH, et.al. Implementation of the patient self-determination act in a hospital setting. Arch Intern Med 1995;155:502-510.

Steinbrook R, Lo B, Moulton J, et.al. Preferences of homosexual men with AIDS for life-sustaining treatment. NEJM 1986;314:457-460.

Teno J, Lynn J, Wenger N, et al. Advance directives for seriously ill hospitalized patients: effectiveness of the Patient Self-Determination Act and the SUPPORT intervention. J Am Geriatr Soc 1997;45:500-508.

Teno JM, Licks S, Lynn J et al. Do advance directives provide instructions that direct care? J Am Geriatr Soc 1997;45:508-512.

Teno J, Lynn J, Connors AF, et al. The illusion of end of life recourse savings with advance directives. J Am Geriatr Soc 1997;45:513-518.

Teno JM, Fleishman J, Brock DW, et.al. The use of formal prior directives among patients with HIV-related diseases. J Gen Intern Med 1990; 5: 490-494.

Teno JM, Nelson LH, Lynn J. Advance care planning: Priorities for ethical and empirical research. Hastings Center Report, Special Supplement 1994.

Teno JM, Lynn J. Putting advance care planning into action. Journal of Clinical Ethics 1996;7:205-214.

Teno JM, Casey VA, Welch L, and Edgman-Levitan S. Patient focused, family centered end-of-life medical care: views of the guidelines and bereaved family members. 2000 Pending Publication.

Teno JM, Clarridge B, Casey V, Fowler J. Toolkit of Instruments to Measure End of Life Care Bereaved Family Member Interview - psychometric properties. 2000 Pending Publication.

Virmini J, Schneiderman LJ, Kaplan RM. Relationship of advance directives to physician-patient communication. Arch Intern Med 1994;154:909-913.

Section prepared by Joan M. Teno and updated by Lisa C. Welch.
Last updated August 20, 2000

This web site is published by the Center for Gerontology and Health Care Research, Brown Medical School. For further information, e-mail Dr. Joan Teno or contact her at Brown Medical School, Box G-HLL, Providence, RI, 02912, USA. For questions or comments regarding this website, please e-mail the webmaster. Last edited February 17, 2004.