Center to Improve Care of the Dying

ADVANCE CARE PLANNING

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.

Unlike the other domains, we did not find any articles listed under the search terms of advance directives, living wills, durable power of attorney, and measurement or instrument, with terminal care or palliative care. Articles have been written which describe whether: physicians have communicated with patients about advance directives (i.e., Teno 1997, 1996, 1990; Miles 1995), advance directives are documented on hospital admission or transfer from a long term care facility (Morrision 1994, Danish 1982, Teno 1996), and family and physician report on the role of advance directives in decision making (Teno 1997, 1996). Additionally, we contacted leading researchers to ask if they knew of, or are currently developing, such an instrument. One instrument is under development that examines audiotapes (personal communication, James Tulsky) and has a reviewer code them regarding the quality of communication. However, there were no other such surveys or chart instruments to examine this domain.

I. Listing of potential instruments

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

a. Advance care planning as measured in the SUPPORT project and patients with symptomatic HIV (Steinbrook 1982; Teno 1990). Questions regarding knowledge, counseling, communication about advance directives, and their impact (from the perspective of the surrogate decision maker and the attending physician) have been examined in seriously ill and dying patients. Copies of instruments used in the seriously ill as well as manuscripts are enclosed for your review.

b. Virmani, 1994 - structured interviews that asked open ended questions. They found that advance directives are not associated with enhanced communication between physician and patient.

c. Morrison, 1995 – review of the medical record for documentation of advance directive status. Authors found that previously executed advance directives were not accessible when the patient was admitted to the hospital.

d. Emanuel, 1993 – time sequence study which examined the impact of the Patient Self Determination Act. They found that the PSDA was associated with increased discussions with a patient and their designated proxy. Instrument not available.

e. Reilly, 1994 – study of physician attitudes regarding advance care planning and their patients’ desires regarding discussion about life sustaining treatment. Results show the gap between physician attitudes on who they believe should have discussion and whether they are discussed with patients.

II Review of potential instruments

Not applicable for this domain.

III. Recommended instruments for Toolkit

My recommendation would be to greatly modify the existing SUPPORT instruments for the potential inclusion in the toolkit.

For an interview with patients:

Did your doctor talk with you, in way that was easily understandable about the chances that you will live for two or more months?

Did your doctor talk with you, in a way that was easily understandable about the chances that further medical treatment would help you?

Do you have specific wishes or plans about the types of medical treatment that you would or would not want if you were dying?

Have you talked to your doctor about that?

Have you and your doctor made a plan that ensures your wishes are followed if you were dying?

Have you and your doctor made a plan that make sure you are not in pain or other discomfort while dying?

For the surrogate/family member, after the patient’s death:

Did (PATIENT) have a signed Living Will or Durable Power of Attorney for Health Care, both or neither?

What role did (PATIENT’S) Living Will or Durable Power of Attorney play in making medical decisions? Did it help a great deal, help a little, have no effect, cause some problems, or cause major problems?

During the last week of (PATIENT’S) life, did (he/she) prefer a course of treatment that focused on extending life as much as possible, even if it meant more pain and discomfort, or on a plan of care that focused on relieving pain and discomfort as much as possible, even if that meant not living as long?

To what extent were these wishes or preferences followed in the medical treatment (he/she) received during the last month of life? Were they followed...

For the medical record:

• Documentation of advance directive in terms of timing from hospital admission and whether a note was written by an health care profession about the patient’s intent in completing the advance directive
• Documentation of the patient’s values/wishes and plan of care to ensure that those wishes are followed.

IV. Recommended scale for study of advance care planning

None

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. In the above questions, I have tried to list screening questions that would indicate a problem with advance care planning. 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.

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, MD