JOURNAL OF PALLIATIVE MEDICINEVolume 2, Number 2,1999Mary Ann Liebert, Inc.

Advance Care Planning Reconsidered:Toward an Operational Definition of Outpatient

Advance Care Planning

PHILIP R. CURD, M.D., M.S.P.H.

INTRODUCTION of ACP and to the extent that they provide sup-port for 2 propositions: (1) that ACP should be

THE TERM "ADVANCE CARE PLANNING" (ACP) a i m e d a t imprOving all EOL decision making,

can be traced back to a multidisciplinary n o t j u s t i n t h e c a s e o f decisional incapacity, andgathenng of 33 end-of-life (EOL) experts in late m a t i t s h o u l d educate and reassure the indi-1993 at Squam Lake, New Hampshire. Their v i d u a l a b o u t t h e e n d o f l i f e a n d (2) that ACPtask was to review issues related to the Patient m v o lving a clinician should be based in the out-Self-Determination Act and advance direc- patient setting. The editorial concludes with antives.1 The consensus of that conference was operational definition of ACP that takes thesethat advance directives alone are inadequate 2 propositions into account,tools for assuring good decision making as re-lates to care for a person who is terminally ill.The conference participants moved from the p^ NEW GOAL FOR ACP?use of the term "advance directives" to themore global term of "advance care planning" Nelson, Teno, and Lynn1 acknowledge that(D.M. High, personal communication, Febru- through conversations of ACP, "patients canary, 1997). The new emphasis was on a process, come to understand the prognosis and likelyrather than a legal document. outcomes of alternative plans of care" and that,

The Squam Lake participants were focused "the process of open discussion and sharingon the ethical aspects of ACP. That is, they saw preferences may increase the patient's feelingsACP basically as a way to promote patient self- of control, and may have a marked beneficialdetermination by assuring that clinical care is effect on how other treatment decisions areshaped by the patient's preferences when the made."patient is unable to participate in decision- Why does this need to be regarded as amaking.1 While recognizing that ACP should byproduct of the process? Why can't it be a pri-also "improve the process of healthcare deci- mary goal? Would the quality of the EOL ex-sion making generally and produce better out- perience be improved if the focus of ACP werecomes of care," that was not identified as one broadened slightly to allow it to include: (1) ed-of its goals.1 ucation about the EOL experience; (2) reassur-

In the years since the Squam Lake conference ance; and (3) preparation for all end-of-life de-much has been written about ACP. This edito- cisions? If this were the case, then ACPrial reviews some of those writings to the ex- discussions with clinicians might put more em-tent that they contribute a fuller understanding phasis on reassuring patients that, when they

Department of Preventive Medicine and Environmental Health, University of Kentucky, Lexington, Kentucky.

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158 CURD

reach the end of life, there will be a physician ing processes of the very sick are often corn-there to make sure that they are kept comfort- plicated by emotional pressures, physical dis-able, and that their wishes will be honored. comfort and the effects of various medications.

In commenting on the SUPPORT2 study, Patients may be frightened, confused, de-Lynn notes that patients die, even in acute care pressed or medicated." However, hospitaliza-hospitals "with severe pain, shortness of tions can provide an excellent opportunity tobreath, dysphoria, and other symptoms that enhance ACP discussions begun in the outpa-were difficult to tolerate."3 These untoward tient setting.8

outcomes happened even with patients whowere not decisionally impaired. Wouldn't abroader definition of ACP improve the likeli- COINING A NEW TERM:hood that plans could be laid to avoid these OUTPATIENT ACPoutcomes?

Patients prefer that the physician initiateACP.4 However, there is nothing about the

WHERE SHOULD ACP INVOLVING A term advance care planning that implies that aCLINICIAN OCCUR? physician need be involved. Although EOL au-

thorities strongly support such involve-Waiting until death is imminent obviates the ment,5-8-10'11 it isn't required. Even so, many of

possibility of the advance in advance care plan- the medical writings on ACP use the term toning. Should physicians wait until their pa- indicate a process involving a physician. Fortients are hospitalized before they broach the the sake of clarity, shouldn't there be a termdelicate topic of life-sustaining care? Sixty-two that refers to the ACP that specifically does in-percent of 300 adult outpatients (82% of whom volve a physician? The literature does not re-were younger than 61) surveyed by Edinger fleet any attempts to explicitly build such a de-and Smucker,4 responded that they thought it finition. To fill this void, I propose the phrasewould be appropriate for their physician to dis- "outpatient advance care planning." This termcuss EOL decisions while they were in rela- reflects the experts' belief that a physician/ clin-tively good health in the outpatient setting, ician can best be involved in ACP when it iseven if it was their first office visit. based in the outpatient setting. Also, by inclu-

In the literature of EOL decisions, there is sion of the word "patient" the presence of astrong support for physicians initiating their clinician is implied, thus staking out a domaininvolvement of ACP in the out-patient set- for a unique type of ACP.ting.5"7 Even so, some of the most elaborate The impact of associating the concept of ACPEOL decision research has been done on se- with "outpatient" could be immense. Just hear-verely ill hospital patients. SUPPORT, one of ing the term might motivate clinicians to con-the most rigorous EOL studies to date, found sider how they might begin undertaking ACPthat a process involving discussions with a hos- in the outpatient setting. Broad acceptance ofpital nurse and identification of advance direc- this term would make it easier to package andtives had no impact on the outcomes of care.2 "sell" the concept to primary care providers.Would the results have been different if these With this self-explanatory handle on the con-patients had initially been involved in ACP as cept, primary care clinicians could—overoutpatients? Another argument for ACP in the time—develop an increased understanding ofoutpatient setting is its on-going nature.4'5'8 Be- what the term encompasses. Eventually, outpa-cause hospitalizations are mostly sporadic and tient ACP could become as recognizable a do-unpredictable, it is hard to track and maintain main as prenatal care currently is. There wouldthe ACP discussion in this setting. In addition, be an implied imperative to act on behalf of theas Aitken9 points out, ACP in the hospital is patient, and at the same time there would"often hobbled by the circumstances that led to be—as with prenatal care—a broadly acceptedthe admission. The thoughts and decision-mak- understanding of what the act(s) should be.

ADVANCE CARE PLANNING RECONSIDERED 159

In summary of what has been said above, a ments; and (5) the existence of a mutual beliefworking definition of outpatient ACP is of- by the physician and patient that they havefered. shared meaning.

Outpatient ACP is a complex and ongo-ing process involving a patient and aphysician working together to prepare fordecisions that may have to be made re-garding EOL medical care. Ideally, thisprocess is begun as a routine in the outpa-tient setting. However, the hospital settingmay be used opportunistically to initiate"outpatient" ACP—or to elaborate on out-patient ACP previously started. In eithercase, the physician should make a con-certed effort to structure ACP follow-upinto post-hospitalization office visits.

The aim of outpatient ACP is not onlyto prepare for decisions that may have tobe made when the patient is mentally in-competent, but, perhaps even more im-portantly, while the patient is competent.The assumption is that better ACP will re-sult in better decisions, ie, decisions thatlead to an EOL experience that the patient,fully informed, prefers to have. A corollaryassumption is that the patient's family/significant other(s) also will experience thedying process relatively free of anguish forthe patient and fear of the unknown. Inthis process a true dialogue—meaningflowing between the parties12—shouldevolve between the patient and the physi-cian.

Because outpatient ACP is a new concept, itwill have to be tested. Empirical evaluationmight include measuring: (1) skills that thephysician brings to bear (listening, structureddiscussion, facilitating discussion, unhurried-ness etc.); (2) patient's level of satisfaction andrelief that a delicate and worrisome issue hasfinally been brought into the open; (3) the ex-tent to which the patient, clinicians and othersaddress a wide array of attributes and compo-nents of ACP; (4) the presence, degree of de-tail, and stability of advance directive docu-

REFERENCES

1. Teno JM, Nelson HL, Lynn J: Advance care planning:priorities for ethical and empirical research. [Consen-sus document on behalf of the Squam Lake confer-ence participants]. Hastings Center Report 1994;24(6Suppl):S32-36.

2. SUPPORT: A controlled trial to improve care for se-riously ill hospitalized patients. JAMA 1995;274:1591-1598.

3. Lynn J, Teno JM, Phillips RS, Wu AW, Desbiems N,Harrold J, Claessens MT, Wenger N, Kreling B, Con-nors AF, Jr: Perceptions by family members of the dy-ing experience of older seriously ill patients. Ann In-tern Med 1997;126:97-106.

4. Edinger W, Smucker D: Outpatients' attitudes re-garding advance directives. J Fam Pract 1992;35:650-653.

5. Emanuel LL, Danis M, Pearlman RA, Singer PA: Ad-vance care planning as a process: structuring the dis-cussion in practice. J Am Geriatr Soc 1995;43:440-446.

6. Wanzer SH, Federman DD, Adelstein SJ, Cassel CK,Cassear EH, Cranford RE, Hook EW, Lo B, MoertelCG, Safar P, Stone A, van Eys J: The physician's re-sponsibility toward hopelessly ill patients: a secondlook. N Engl J Med 1989;320:844-849.

7. Stevenson LW: Rites and responsibility for resuscita-tion in heart failure. Circulation 1998;98:619-622.

8. Teno JM, Lynn J: Putting advance care planning intoaction. J Clin Ethics 1996;7:205-213.

9. Aitken PV: Incorporating advance care planning intofamily practice. Am Fam Physician 1999;59:605-612.

10. Saulz J: Routine discussion of advance health care di-rectives: Are we ready? J Fam Pract 1990;31:653-659.

11. Nuland SB: How We Die. New York: Alfred A. Knopf,1994.

12. Bohm D: On Dialogue. New York: Routledge, 1996.

Address reprint requests to:Philip R. Curd, M.D., M.S.P.H.

Department of Preventive Medicine andEnvironmental Health

University of Kentucky1141 Red Mile Road, Suite 201

Lexington, KY 40504E-mail: prcurd@prtcnet.org