Questions to be answered Devising effective strategies for engaging individuals in ACP activities can be challenging, but compelling evidence exists that patients want to be informed, are receptive to health care providers initiating planning discussions, desire information about the benefits and burdens of life-sustaining treatment, and gain great benefit from advance care planning.27-29 However, implementation of DS-ACP for cancer patients will require consideration of some of the possible differences in the illness experience of cancer patients as compared to patients with chronic progressive illness:
● Patients with chronic, progressive illness often learn to adapt to their condition and situation over time and may experience a change in goals of care. Patients with a new cancer diagnosis are still learning about their disease and identifying treatments with a goal of curing their cancer.
● A potential barrier to implementation of DS-ACP is the misperception that ACP and end-of-life discussions will raise anxiety and decrease hope in patients struggling to manage their complex medical situations. However, research and clinical experience to date with DS-ACP indicates that patients and families find the process to be satisfying and helpful.
● DS-ACP is initiated for patients with chronic, progressive illness when they experience complications from their illness, more frequent hospital or ED visits for exacerbation of symptoms, or when they identify a desire to shift their goals of care. Since most patients realize they are getting sicker, the DS-ACP conversations are timely and well-received. However, the most appropriate timing for the DS-ACP conversation is less clear for cancer patients, and it may be that patients with certain forms of cancer are more likely to benefit from DS-ACP.
● The qualifications and experience of the DS-ACP facilitators has proven to be very important in establishing trust and positive communication with patients and families. Which types of professionals are best suited for the role of DS-ACP facilitator for cancer patients and what the role of the oncologist should be in this process remains unclear.
A promising approach to end-of-life care planning The Respecting Choices disease-specific advance care program addresses many of the problems identified with prior AD initiatives, proxy use, and communication. Through DS-ACP, patients are encouraged and enabled to consider and clarify their care preferences in worst-case scenarios, facilitating timely and proactive health care decisions based on accurate information of benefits and burdens. Proxies become educated about the preferences of their loved ones and are better prepared to make substitute decisions if needed, thus lessening the burdens of decision making. Patients and their families find this planning approach to be satisfying and helpful. DS-ACP also provides medical record documentation of patients’ goals for treatment that are specific to their disease. These preferences are communicated directly with providers and promote conversation about future choices and desires. As with chronic disease, patients with cancer and their families may face important decisions about their medical care if their disease progresses or if they suffer complications from treatment. DS-ACP is a valuable mechanism by which patients can exert control over their health care needs and preferences, clearly communicate their wishes, and purposefully direct their individual end-of-life care experience. ■
Sandra Schellinger is the director of palliative care, Allina Hospitals and Clinics, Minneapolis, Minnesota. Abbey Sidebottom is a senior scientific advisor, Center for Healthcare Innovation, Allina Hospitals and Clinics. Linda Briggs is the associate director of advance care planning and ethics consultant, Gundersen Lutheran Medical Foundation, La Crosse, Wisconsin.
1. McCarthy EP, Phillips RS, Zhong Z, et al. Dying with cancer: patients’ function, symptoms, and care preferences as death approaches. J Am Geriatr Soc. 2000;48(5 Suppl):S110-S121.
2. Ditto PH, Hawkins NA. Advance directives and cancer decision making near the end of life. Health Psychol. 2005;24(4 Suppl):S63-S70.
3. Kass-Bartelmes BL, Hughes R. Advance Care Planning: Preferences for Care at the End of Life. In: Research In Action. Rockville, MD: Agency for Healthcare Research and Quality; 2003.
4. Teno JM, Gruneir A, Schwartz Z, et al. Association between advance directives and quality of end-of-life care: a national study. J Am Geriatr Soc. 2007;55(2):189-194.
5. Hammes BJ, Rooney BL, Gundrum JD. A comparative, retrospective, observational study of the prevalence, availability, and specificity of advance care plans in a county that implemented an advance care planning microsystem. J Am Geriatr Soc. In press.
6. Tan TS, Jatoi A. An update on advance directives in the medical record: findings from 1186 consecutive patients with unresectable exocrine pancreas cancer. J Gastrointest Cancer. 2008;39(1-4):100-103.
7. Dow LA, Matsuyama RK, Ramakrishnan V, et al. Paradoxes in advance care planning: the complex relationship of oncology patients, their physicians, and advance medical directives. J Clin Oncol. 2010;28(2):299-304.
8. Kish SK, Martin CG, Price KJ. Advance directives in critically ill cancer patients. Crit Care Nurs Clin North Am. 2000;12(3):373-383.
9. Teno J, Lynn J, Wenger N, et al. Advance directives for seriously ill hospitalized patients: effectiveness with the patient self-determination act and the SUPPORT intervention. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. J Am Geriatr Soc. 1997;45(4):500-507.
10. Bakitas M, Ahles TA, Skalla K, et al. Proxy perspectives regarding end-of-life care for persons with cancer. Cancer. 2008;112(8):1854-1861.