Advance care planning: Making it easier for patients (and you)

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Applied Evidence

Advance care planning: Making it easier for patients (and you)

J Fam Pract. 2017 August;66(8):487-491

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References

1. Kutner L. Due process of euthanasia: the living will, a proposal. Indiana Law J. 1969;44:539-554.

2. California Law Revision Commission. 2000 Health Care Decisions Law and Revised Power of Attorney Law. Available at: http://www.clrc.ca.gov/pub/Printed-Reports/Pub208.pdf. Accessed May 15, 2017.

3. H.R. 5067 - 101st Congress. Patient Self Determination Act of 1990. Available at: https://www.govtrack.us/congress/bills/101/hr5067. Accessed November 16, 2016

4. The SUPPORT Principle Investigators. A 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;274:1591-1598.

5. Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: National Academies Press; 2015.

6. Dixon J, Matosevic T, Knapp M. The economic evidence for advance care planning: systematic review of evidence. Palliat Med. 2015;29:869-884.

7. Wright AA, Ray A, Mack JW, et al. Associations between end-of-life discussions, patient mental-health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300:1665-1673.

8. Brinkman-Stoppelenburg A, Rietjens JAC, van der Heide A. The effects of advance care planning on end-of-life care: a systematic review. Palliat Med. 2014;28:1000-1025.

9. Detering KM, Hancock AD, Reade MC, et al. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ. 2010;340:c1345.

10. Morrison RS, Chichin E, Carter J, et al. The effect of a social work intervention to enhance advance care planning documentation in the nursing home. J Am Geriatr Soc. 2005;53:290-294.

11. Schamp R, Tenkku L. Managed death in a PACE: pathways in present and advance directives. J Am Med Dir Assoc. 2006;7:339-344.

12. Walczak A, Butow PN, Bu S, et al. A systematic review of evidence for end-of-life communication interventions: who do they target, how are they structured and do they work? Patient Educ Couns. 2016;99:3-16.

13. Sudore RL, Fried TR. Redefining the “planning” in advance care planning: preparing for end-of-life decision making. Ann Intern Med. 2010;153:256-261.

14. Straton JB, Wang NY, Meoni LA, et al. Physical functioning, depression, and preferences for treatment at the end of life: the Johns Hopkins Precursors study. J Am Geriatr Soc. 2004;52:577-582.

15. 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;166:890-895.

16. Rao JK, Anderson LA, Lin F, et al. Completion of advance directives among U.S. consumers. Am J Prev Med. 2014;46:65-70.

17. Grudzen CR, Buonocore P, Steinberg J, et al; AAHPM Research Committee Writing Group. Concordance of advance care plans with inpatient directives in the electronic medical record for older patients admitted from the emergency department. J Pain Symptom Manage. 2016;51:647-651.

18. Jones AL, Moss AJ, Harris-Kojetin LD. Use of advance directives in long-term care populations. NCHS Data Brief. 2011;(54):1-8.

19. Lund S, Richardson A, May C. Barriers to advance care planning at the end of life: an explanatory systematic review of implementation studies. PLoS One. 2015;10:e0116629.

20. Fried TR, Bullock K, Iannone L, et al. Understanding advance care planning as a process of health behavior change. J Am Geriatr Soc. 2009;57:1547-1555.

21. Schickedanz AD, Schillinger D, Landefeld CS, et al. A clinical framework for improving the advance care planning process: start with patients’ self-identified barriers. J Am Geriatr Soc. 2009;57:31-39.

22. Winter L, Parks SM, Diamond JJ. Ask a different question, get a different answer: why living wills are poor guides to care preferences at the end of life. J Pall Med. 2010;13:567-572.

23. Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Available at: https://www.nap.edu/read/18748/chapter/1. Accessed May 15, 2017.

24. Sudore RL, Schickedanz AD, Landefeld CS, et al. Engagement in multiple steps of the advance care planning process: a descriptive study of diverse older adults. J Am Geriatr Soc. 2008;56:1006-1013.

25. McMahan RD, Knight SJ, Fried TR, et al. Advance care planning beyond advance directives: perspectives from patients and surrogates. J Pain Symptom Manage. 2013;46:355-365.

26. Lum HD, Sudore RL, Bekelman DB. Advance care planning in the elderly. Med Clin North Am. 2015;99:391-403.

27. Lum HD, Sudore RL. Advance care planning and goals of care communication in older adults with cardiovascular disease and multi-morbidity. Clin Geriatr Med. 2016;32:247-260.

28. American College of Physicians. Advanced Care Planning: Implementation for practices. Available at: https://www.acponline.org/system/files/documents/practice-resources/business-resources/payment/advance_care_planning_toolkit.pdf. Accessed May 15, 2017.

The demonstrated benefits of advance care planning

When done comprehensively, ACP yields many benefits for patients and families and for the health care system. A systematic review demonstrated that, despite the few studies examining the economic cost of ACP, the process may lead to decreased health care costs in certain populations (nursing home residents, community dwelling adults with dementia, and those living in high health care spending regions) and at the very least does not increase health care costs.⁶ ACP has increased the number of do-not-resuscitate orders⁷ and has decreased hospitalizations,⁸ admissions to intensive care units,^7,8 and rates of cardiopulmonary resuscitation,^7,8 mechanical ventilation,^7,8 and use of tube feeding.⁸

More noteworthy than the decrease in resource utilization and potential cost savings is the impact that ACP can have on a patient’s quality of life. Patients who receive aggressive care at the end of life tend to experience decreased quality of life compared with those receiving hospice care.⁷ Quality-of-life scores for patients in hospice improved with the length of enrollment in that care.⁷ When ACP discussions have taken place, the care patients receive at the end of life tends to conform more closely to their wishes and to increase family satisfaction.^9-11

One reason that practitioners often give for not completing ACP is the fear of increasing patient or family anxiety or post-traumatic stress disorder (PTSD). However, studies have shown this concern to be unfounded.^7,12 While ACP studies have not shown a decrease in rates of anxiety or PTSD, no study has shown an increase in these psychological morbidities.⁸

Caveats to keep in mind. Not all studies have shown unambiguous benefits related to ACP. Among the systematic reviews previously noted, there was significant variability in quality of data. Additionally, some experts argue that the traditional view of ACP (ie, completion of a single advance directive/living will) is outdated and should be replaced with a method that prepares patients and families to anticipate “in-the-moment decision making.”¹³ While we still believe that completion of an advance directive is useful, the experts’ point is well taken, especially since many patients change their preferences over time (and typically towards more aggressive care).^14,15 While the advance directive serves a role, it is more important to help patients recognize their goals and preferences and to facilitate ongoing discussions between the patient and their families/surrogate decision maker and providers.

A snapshot of participation in advance care planning

Despite the ACP movement and the likely benefits associated with it, most individuals have not participated. Rates of completion do seem to be rising, but there is still room for improvement. Among all individuals older than 18 years, only 26.3% have an advance directive.¹⁶ In a cohort of older patients seen in an emergency department, only 40% had a living will, while nearly 54% had a designated health care power of attorney.¹⁷ Perhaps more alarming is the lack of ACP for those patients almost all physicians would agree need it—the long-term care population. The National Center for Health Statistics has reported that only 28% of home health care patients, 65% of nursing home residents, and 88% of hospice patients have an advance directive on file.¹⁸

Physician and patient barriers to advance care planning

If ACP can decrease resource utilization and improve caregiver compliance with a patient’s wishes for end of life, the obvious question is: Why isn’t it done more often? A longstanding barrier for physicians has been that these types of discussions are time intensive and have not been billable. However, since January 1, 2016, we are now able to bill for these discussions. (More on this in a bit.) Physicians do cite other barriers, though.

A recent systematic review showed that ACP is hindered by time constraints imposed by other clinical and administrative tasks that are heavily monitored.¹⁹ Barriers to engaging in ACP reported by patients include a reluctance to think about dying, a belief that family or physicians will know what to do, difficulty understanding ACP forms, and the absence of a person who can serve as a surrogate decision-maker.^20,21

There are national models to help with implementation

The percentage of individuals with an advance directive in the United States has not increased significantly over the past decade.²² The lack of traction in completion and use of advance directives has lead several authors to question the utility of this older model of ACP.²² Several experts in the field believe that more robust, ongoing goals-of-care conversations between patients, families, and providers are equally, or even more, important than the completion of actual advance directive documents.^23,24

Explore recognized models for advance care planning, such as the Physician Orders for Life-Sustaining Treatment (POLST) paradigm and the Respecting Choices program.

National models such as the POLST (Physician Orders for Life-Sustaining Treatment) paradigm have become popular in several states (http://www.polst.org). Intended for those with estimated life expectancy of less than one year, POLST is not an advance directive but a physician order for these seriously ill patients. Emergency medical service workers are legally able to follow a POLST document but not a living will or advance directive—a significant reason for those with end-stage illness to consider completing a POLST document with their health care provider. Programs such as, “Respecting Choices,” have incorporated POLST documentation as part of ongoing goals-of-care conversations between patients and health care providers (http://www.gundersenhealth.org/respecting-choices).

Many groups have developed products to encourage patients and their families to initiate conversations at home. An example is the Conversation Project, a free online resource available in multiple languages that can help break the ice for patients and get them talking about their wishes for end-of-life care (http://www.theconversationproject.org). It poses simple stimulating questions such as: “What kind of role do you want to have in the decision-making process?” and “What are your concerns about treatment?”