Background: Advance care planning (ACP) is an underutilized process that involves thinking about what kind of life-prolonging medical care one would want should the need arise, identifying a spokesperson, and then communicating these wishes. Objective: To better understand what influences individuals to engage in ACP. Design: Three focus groups using semistructured interactive interviews were conducted with 23 older individuals from 3 diverse populations in central Pennsylvania. Results: Four categories of influences for engaging in ACP were identified: (1) concern for self; (2) concern for others; (3) expectations about the impact of ACP; and (4) anecdotes, stories, and experiences. Conclusions: The motivations for undertaking ACP that we have identified offer health care providers insight into effective strategies for facilitating the process of ACP with their patients.
Doukas DJ, McCullough LBThe values history. The evaluation of the patient’s values and advance directives. J Fam Pract. 1991; 32(2):145-153.
2.
Lo B., Steinbrook R.Resuscitating advance directives. Arch Intern Med. 2004;164(14):1501-1506.
3.
Miles SH, Koepp R., Weber EPAdvance end-of-life treatment planning. A research review. Arch Intern Med. 1996;156(10):1062-1068.
4.
Prendergast TJAdvance care planning: pitfalls, progress, promise. Crit Care Med. 2001;29(2 suppl):N34-N39.
5.
Schwartz CE, Wheeler HB, Hammes B., et al. Early intervention in planning end-of-life care with ambulatory geriatric patients: results of a pilot trial. Arch Intern Med. 2002;162(14):1611-1618.
6.
Perkins HSControlling death: the false promise of advance directives. Ann Intern Med. 2007;147(1):51-57.
7.
Singer PA, Martin DK, Lavery JV, Thiel EC, Kelner M., Mendelssohn DCReconceptualizing advance care planning from the patient’s perspective . Arch Intern Med. 1998;158(8):879-884.
8.
McAuley WJ, Buchanan RJ, Travis SS, Wang S., Kim M.Recent trends in advance directives at nursing home admission and one year after admission. Gerontologist. 2006;46(3):377-381.
9.
Stelter KL, Elliott BA, Bruno CALiving will completion in older adults. Arch Intern Med. 1992;152(5):954-959.
10.
Curtis JR, Patrick DL, Caldwell ES, Collier ACWhy don’t patients and physicians talk about end-of-life care? Barriers to communication for patients with acquired immunodeficiency syndrome and their primary care clinicians. Arch Intern Med. 2000; 160(11):1690-1696.
11.
Despreaux MC , Coughlin DT, Drickamer MADiscussing advance directives: a study of outpatients’ attitudes. J Gen Intern Med. 1996;11(1):114.
12.
Forow L.The green eggs and ham phenomenon. Hastings Center Report . 1994;24(6):S29-S32.
13.
Holley JL, Hines SC, Glover JJ, Babrow AS, Badzek LA, Moss AHFailure of advance care planning to elicit patients’ preferences for withdrawal from dialysis. Am J Kidney Dis. 1999; 33(4):688-693.
14.
Marchand L. , Fowler KJ, Kokanovic O.Building successful coalitions to promote advance care planning. Am J Hosp Palliat Care. 2005;22(6):437-441.
15.
Marchand L. , Fowler KJ, Kokanovic O.Building successful coalitions for promoting advance care planning. Am J Hosp Palliat Care. 2006;23(2):119-126.
16.
Perkins HS, Geppert CM, Gonzales A., Cortez JD, Hazuda HPCross-cultural similarities and differences in attitudes about advance care planning. J Gen Intern Med. 2002;17(1):48-57.
17.
Support PIA Controlled trial to improve care for seriously ill hospitalized patients: the study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA. 1995;274(20):1591-1598.
18.
Teno JM, Lynn J., Phillips RS, et al. Do formal advance directives affect resuscitation decisions and the use of resources for seriously ill patients? SUPPORT Investigators . Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. J Clin Ethics. 1994;5(1):23-30.
19.
Upadya A., Muralidharan V., Thorevska N., Amoateng-Adjepong Y., Manthous CAPatient, physician, and family member understanding of living wills. Am J Respir Crit Care Med. 2002;166(11):1430-1435.
20.
Volandes AE, Lehmann LS, Cook EF, Shaykevich S., Abbo ED, Gillick MRUsing video images of dementia in advance care planning. Arch Intern Med. 2007;167(8):828-833.
21.
Ditto PH, Danks JH, Smucker WD, et al. Advance directives as acts of communication: a randomized controlled trial. Arch Intern Med. 2001;161(3):421-430.
22.
Fagerlin A. , Schneider CEEnough.The failure of the living will. Hastings Cent Rep. 2004;34(2):30-42.
23.
Hammes BJ, Rooney BLDeath and end-of-life planning in one midwestern community. Arch Intern Med. 1998;158(4):383-390.
24.
Teno J., Lynn J., Phillips R., et al. Do advance directives save resources? Clin Res . 1993;41(2):551A.
25.
Teno JM, Licks S., Lynn J., et al. Do advance directives provide instructions that direct care? SUPPORT Investigators. Study to understand prognoses and preferences for outcomes and risks of treatment. J Am Geriatr Soc. 1997;45(4):508-512.
26.
Tulsky JABeyond advance directives: importance of communication skills at the end of life. JAMA. 2005;294(3):359-365.
27.
Larson DG, Tobin DREnd-of-life conversations: evolving practice and theory. JAMA. 2000;284(12):1573-1578.
28.
Arora NK, McHorney CAPatient preferences for medical decision making: who really wants to participate? Med Care. Mar2000;38(3):335-341.
29.
Berry SR, Singer PAThe cancer specific advance directive. Cancer. 1998;82(8):1570-1577.
30.
Ditto PH, Jacobson JA, Smucker WD, Danks JH, Fagerlin A.Context changes choices: a prospective study of the effects of hospitalization on life-sustaining treatment preferences. Med Decis Making . 2006;26(4):313-322.
31.
Fried TR, Bradley EHWhat matters to seriously ill older persons making end-of-life treatment decisions?: A qualitative study. J Palliat Med. 2003;6(2):237-244.
32.
Fried TR, Bradley EH, Towle VRAssessment of patient preferences: integrating treatments and outcomes. J Gerontol B Psychol Sci Soc Sci. 2002;57(6):S348-354.
33.
Fried TR, Bradley EH, Towle VR, Allore H.Understanding the treatment preferences of seriously ill patients. N Engl J Med. 2002;346(14):1061-1066.
34.
Fried TR, Byers AL, Gallo WT, et al. Prospective study of health status preferences and changes in preferences over time in older adults. Arch Intern Med. 2006;166(8):890-895.
Carr D., Khodyakov D.End-of-life health care planning among young-old adults: an assessment of psychosocial influences. J Gerontol B Psychol Sci Soc Sci . 2007;62(2):S135-S141.
37.
Annas GJ " Culture of life’’ politics at the bedside-the case of Terri Schiavo . N Engl J Med. 2005;352(16):1710-1715.
38.
Quill TETerri Schiavo-a tragedy compounded. N Engl J Med. 2005;352(16):1630-1633.
39.
Wolfson J.Erring on the side of Theresa Schiavo: reflections of the special guardian ad litem. Hastings Cent Rep. 2005;35(3): 16-19.
40.
Gordon NP, Shade SBAdvance directives are more likely among seniors asked about end-of-life care preferences. Arch Intern Med. 1999;159(7):701-704.
41.
Green MJ, Levi BHDevelopment of an interactive computer program for advance care planning. Health Expectations.2009; 12(1):60-69.
42.
Morgan DLFocus Groups. Ann Rev Sociol. 1996;22:129-152.
43.
Kreuger RAFocus Groups: A Practical Guide for Applied Research. London: SAGE;1988.
44.
Miller WJ, Rollnick S.Motivational Interviewing: Preparing People for Change. 2nd ed. New York, NY: Guilford Press ; 2002.
45.
Hawkins NA, Ditto PH, Danks JH, Smucker WDMicromanaging death: process preferences, values, and goals in end-of-life medical decision making. Gerontologist. 2005 ;45(1):107-117.
46.
Caralis PV, Davis B., Wright K., Marcial E.The influence of ethnicity and race on attitudes toward advance directives, life-prolonging treatments, and euthanasia. J Clin Ethics . 1993;4(2): 155-165.
47.
McKinley ED , Garrett JM, Evans AT, Danis M.Differences in end-of-life decision making among black and white ambulatory cancer patients. J Gen Intern Med. 1996;11(11): 651-656.
48.
Basch CEFocus group interview: an underutilized research technique for improving theory and practice in health education. Health Educ Q. 1987;14(4):411-448.
49.
Dilorio C., Hockenberry-Eaton M., Maibach E., Rivero T.Focus groups: an interview method for nursing research. J Neurosci Nurs. 1994;26(3):175-180.
50.
Steinhauser KE, Christakis NA, Clipp EC, et al. Preparing for the end of life: preferences of patients, families, physicians, and other care providers. J Pain Symptom Manage. 2001;22(3): 727-737.
