The merits and effectiveness of advance care planning (ACP) continue to be debated a full 30 years after the passage of the Patient Self-Determination Act. This act gave patients the right to create advance directives, with the objective of ensuring that the care they received at the end of life was consistent with their preferences and goals. ACP has definitively moved beyond the completion of advance directives to encompass the identification of a healthcare agent and the facilitation of communication among patients, surrogates, and clinicians. Nonetheless, the provision of goal-concordant care remains a primary objective for ACP. This article argues that this cannot and should not be the objective for ACP. Patients' goals change, and the provision of goal-concordant care is sometimes incompatible with other critical determinants of appropriate care. Instead, ACP should focus on the objective of improving caregiver outcomes. Surrogate decision-making by caregivers is associated with an elevated risk of post-traumatic stress disorder and other adverse outcomes, and these outcomes can be improved with ACP. ACP focused on caregivers involves helping caregivers to understand how they can help to shape the final chapter in a patient's life story, preventing caregivers from making promises they cannot keep, and preparing them to use all relevant information at the time decisions need to be made.
CONFLICT OF INTEREST
The author has no conflicts.
- 1, , , . The Patient Self-Determination Act and the future of advance directives. Ann Intern Med. 1991; 115: 639-643.
- 2, , . Deconstructing the complexities of advance care planning outcomes: what do we know and where do we go? A scoping review. J Am Geriatr Soc. 2021; 69(1): 234-244. doi:10.1111/jgs.16801
- 3, , , et al. Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel. J Pain Symptom Manage. 2017; 53: 821-832.
- 4, , , et al. Outcomes that define successful advance care planning: a delphi panel consensus. J Pain Symptom Manage. 2018; 55: 245-255.e248.
- 5, , , , , . Overview of systematic reviews of advance care planning: summary of evidence and global lessons. J Pain Symptom Manage. 2018; 56: 436-459.e425.
- 6, , , , . Efficacy of advance care planning: a systematic review and meta-analysis. J Am Med Dir Assoc. 2014; 15: 477-489.
- 7, , . What's wrong with advance care planning? JAMA. 2021; 326: 1575-1576.
- 8, , . Achieving goal-concordant care: a conceptual model and approach to measuring serious illness communication and its impact. J Palliat Med. 2018; 21: S17-S27.
- 9, . Redefining the "planning" in advance care planning: preparing for end-of-life decision making. Ann Intern Med. 2010; 153: 256-261.
- 10, , , et al. The SHARE study: pilot study of a communication intervention designed to elicit advanced-stage cancer patients' preferences and goals. J Palliat Med. 2022. doi:10.1089/jpm.2021.0655
- 11, , , , . Advance directives for medical care—a case for greater use. N Engl J Med. 1991; 324: 889-895.
- 12. Limitations of listing specific medical interventions in advance directives. JAMA. 1991; 266: 825-828.
- 13, , , . Understanding the treatment preferences of seriously ill patients. N Engl J Med. 2002; 346: 1061-1066.
- 14, , , , . Context changes choices: a prospective study of the effects of hospitalization on life-sustaining treatment preferences. Med Decis Making. 2006; 26: 313-322.
- 15, , , , , . Changes in preferences for life-sustaining treatment among older persons with advanced illness. J Gen Intern Med. 2007; 22: 495-501.
- 16. Decisions to withdraw treatment. Values histories are more useful than advance directives. BMJ (Clin Res Ed). 2000; 320: 54.
- 17, , , et al. Prospective study of health status preferences and changes in preferences over time in older adults. Arch Intern Med. 2006; 166: 890-895.
- 18, , , . The role of adaptation to disability and disease in health state valuation: a preliminary normative analysis. Soc Sci Med. 2002; 55: 2149-2158.
- 19, . Using the experiences of bereaved caregivers to inform patient- and caregiver-centered advance care planning. J Gen Intern Med. 2008; 23: 1602-1607.
- 20, , , , , . Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000; 284: 2476-2482.
- 21, . Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med. 2011; 154: 336-346.
- 22, , , et al. Risk of post-traumatic stress symptoms in family members of intensive care unit patients. Am J Respir Crit Care Med. 2005; 171: 987-994.
- 23, , , . Conflict associated with decisions to limit life-sustaining treatment in intensive care units. J Gen Intern Med. 2001; 16: 283-289.
- 24, , . Complicated grief: risk factors, protective factors, and interventions. J Soc Work End Life Palliat Care. 2020; 16: 151-174.
- 25, , , . The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ. 2010; 340:c1345.
- 26, , , , . A randomized, controlled trial to improve advance care planning among patients undergoing cardiac surgery. Med Care. 2005; 43: 1049-1053.
- 27. Narrative interest standard: a novel approach to surrogate decision-making for people with dementia. Gerontologist. 2018; 58: 1016-1020.
- 28, , , . Assessment of surrogates' knowledge of patients' treatment goals and confidence in their ability to make surrogate treatment decisions. JAMA Intern Med. 2019; 179: 267-268.
- 29, , . Association of experience with illness and end-of-life care with advance care planning in older adults. J Am Geriatr Soc. 2014; 62(7): 1304-1309. doi:10.1111/jgs.12894
- 30, , , , . Barriers, enablers and initiatives for uptake of advance care planning in general practice: a systematic review and critical interpretive synthesis. BMJ Open. 2019; 9:e030275.
- 31, . Garnering support for advance care planning. JAMA. 2010; 303: 269-270.
- 32, , , et al. Engaging diverse English-and Spanish-speaking older adults in advance care planning: the PREPARE randomized clinical trial. JAMA Intern Med. 2018; 178: 1616-1625.
- 33, , , et al. Effect of the STAMP (Sharing and Talking About My Preferences) intervention on completing multiple advance care planning activities in ambulatory care: a cluster randomized controlled trial. Ann Intern Med. 2021; 174: 1519-1527.
- 34, , , , , . I don't want to be the one saying ‘we should just let him die’: intrapersonal tensions experienced by surrogate decision makers in the ICU. J Gen Intern Med. 2012; 27: 1657-1665.
- 35, , , . Voices of African American, Caucasian, and Hispanic surrogates on the burdens of end-of-life decision making. J Gen Intern Med. 2008; 23: 267-274.
- 36, , , , . The Oncotalk/Vitaltalk model. In: DW Kissane, BD Bultz, PN Butow, CL Bylund, S Noble, S Wilkinson, eds. Onford Textbook of Communicaton in Oncology and Palliative Care. 2nd ed. Oxford University Press; 2018.