Advance Directives & Advance Care Planning: A Continuing Conversation (Part 3)

Jan 15, 2015

This final installment of the Continuing Conversation from the 2014 Palliative Care Symposium series, focuses on questions that were posed throughout the Symposium regarding use of advance directives and advance care planning in end-of-life decision-making.

Responses have been provided by Joanna Paladino, MD, who presented on this topic at the Symposium and who is a research fellow for the Serious Illness Care Program at Ariadne Labs, which is a joint Innovation Center of the Harvard School of Public Health and Brigham and Women’s Hospital. Additional authors, all also from the Serious Illness Care Program at Ariadne Labs, include Rachelle Bernacki, MD, MS, associate director; Francine Maloney, MPH, project manager; and Susan Block, MD, director.

The Symposium was cosponsored by the American Society of Clinical Oncology (ASCO), the American Academy of Hospice and Palliative Medicine (AAHPM), the American Society for Radiation Oncology (ASTRO), and the Multinational Association of Supportive Care in Cancer (MASCC). Next year’s Symposium will be held October 9-10 in Boston.

Q: Is there any evidence that just asking patients with cancer whether they have an advance directive helps to prime patients and families for discussion of end-of-life issues?

Currently, we are not aware of a study that measures the impact of simply asking an oncology patient if he has an advance directive (AD). However, there is growing evidence that early conversations with patients about advance care planning have been associated with positive outcomes at the end of life.1-3 When thinking about communication interventions for patients with serious illness, it is important to distinguish between ADs and advance care planning (ACP).

ADs are legal documents that provide guidance for medical providers or loved ones for decision making in the event that a patient is unable to make decisions for herself.

ACP, however, is an iterative process of communication among patients, health care providers, and loved ones about patient values, goals, and wishes over time, which may or may not involve the completion of an AD.

Interventions in oncology that engage patients and families earlier in discussions about ACP are essential in our efforts to deliver patient-centered care and to ensure that patients receive the care they want at the end of life, as recently highlighted in the Institute of Medicine report Dying in America.4

Q: Is there good evidence that patients actually want to have earlier ACP discussions?

Although this is always a personal decision for patients, there is strong evidence that patients want to have earlier ACP discussions. Most patients with advanced cancer want timely and realistic information about their life expectancy from their physicians to prepare themselves and their families.5-7 Research also shows that when discussions occur on a timely basis, and when patients with advanced cancer understand their prognosis, they are more likely to receive earlier referral to hospice, which has known benefits for patients and families, and are more likely to die in the place of their choosing.3,8

Q: The success of conversation triggers could imply that physicians are more comfortable with ACP discussions if those discussions are considered part of routine process. Are there data on this?

Too often, high-quality ACP is not the default or “normal” pathway in our current system. Conversations about end-of-life wishes often occur very late, in acute care settings during a crisis, or with providers who do not know the patients best.9 Research shows that clinician barriers to ACP are particularly important and include: lack of knowledge, skill, confidence, and training in ACP; concerns about patient-related factors (e.g., “ACP takes away hope”); attitudes about ACP (uncertainty about timing and value); and time constraints.10-15 By designing an intervention to address the gaps in clinician training, and by implementing a system to make it easier to identify appropriate patients and to trigger and document the conversations in real time, our hope is to normalize and improve ACP discussions, to make them more comfortable, and ultimately to improve patient outcomes.

Q: What percentage of patients have ADs already, and what should that percentage be?

The reported prevalence in the United States of ACP and AD varies between 18% and 70%.16-18 Most studies report on AD, rather than ACP. A PEW poll in 2005 reported that, overall, 29% of Americans have ADs ,19 although a survey of nontraumatic deaths in the hospital, nursing home, or home reported that 70% had an AD.18 However, having an AD does not necessarily mean that communication about that AD occurred with a physician. In addition, the completion of an AD too far from or too close to the patient’s death can lead to decisions that do not optimally reflect the patient’s values and wishes.20 Patients have priorities besides living longer, and all patients with serious illness should have the opportunity to discuss their values and goals with their clinicians iteratively over the continuum of care because priorities often change over time. What we really need is routine implementation of evidence-based, high-quality ACP.

Q: Can you elaborate on specific factors that prompted the trigger [discussed in Abstract 84]?

Oncology clinicians (physicians, nurse practitioners, and physician assistants) identify their patients at high risk of death using the “surprise question:” “Would you be surprised if this patient died within a year?”21 Patients for whom their clinicians responded, “No, I would not be surprised,” are eligible for the serious-illness conversation. The clinicians are then “triggered” or prompted to have a Serious Illness Conversation Guide discussion before the patient’s next scheduled visit.

The trigger was designed to be hard to ignore and is built into the clinician’s workflow via an email that is sent by the study staff to the clinician the day before the visit and placement of the Serious Illness Conversation Guide on the patient’s face-sheet, which the clinician receives on the day of the visit. It is also important to note that the trigger only occurs when a clinician has an established therapeutic relationship with a patient (after at least four visits).

In addition, there are other methods that can be helpful in identifying patients who are at high risk, including algorithms that use prognostic data in the electronic medical record (EMR).

Q: Can you please briefly describe the guide [discussed in Abstract 84], how it was developed, and whether you think the trigger is enough for ACP, or is the guide necessary?

We do not believe that a trigger is enough to improve ACP conversations, as clinicians are often not trained to have effective ACP discussions. We think the trigger benefits from being embedded in a larger, scalable system of support. The Serious Illness Care Program intervention includes: identification of patients at high risk of death (prognosis < 1 year); clinician training on the use of the Serious Illness Conversation Guide, a novel approach to ACP that focuses on values and goals; triggering or prompting clinicians to initiate the conversation; documentation of the conversation in the electronic medical record; and the Family Communication Guide to support patients as they discuss these issues with their loved ones.22,23

After a comprehensive literature review, a national advisory council meeting, and extensive pilot testing with clinicians and patients, we arrived at the current version of the Serious Illness Conversation Guide that is being tested in a cluster-randomized controlled trial. (See reference 22 for the Conversation Guide)

Q: How was ACP defined for your study [Abstract 84] for documentation to be included as meeting the standard for initiating ACP conversations?

Our goal is to create a “single source of truth” in the EMR for discussions about patient values, goals, and wishes over the trajectory of serious illness. In our trial, ACP is defined as completion and EMR documentation of a Serious Illness Conversation Guide (SICG) discussion.22 The SICG is a novel tool designed to support clinicians in conducting more effective ACP discussions with their patients using open-ended questions that address patient values and goals rather than treatments and procedures. We created a “values and goals” module in the EMR that mirrors the questions of the Conversation Guide.

Q: We have been aware of physician reluctance to discuss ACP for decades, have we not? What do you think will actually facilitate real and meaningful change?

Meaningful, sustainable change to improve serious illness care on a large scale relies on improving entire systems so that the default is to provide the best possible care; and the best possible care means that patients have the opportunity to talk to their doctors about what matters most to them. Clinicians, however, need the tools and the training to make this change. Our strategy is to improve access to high-quality ACP using a simple, scalable approach that reaches all clinicians who care for seriously ill patients in order to improve the lives and care of patients with serious illness everywhere.

NOTE: For more Q&As from the Palliative Care Symposium, please access:

—Part 1 of the Continuing Conversation series: "Q&As from the Palliative Care in Oncology Symposium: A Continuing Conversation," with responses by Timothy J. Moynihan, MD, Inpatient Practice Chair for the Department of Medical Oncology, Director of the Brain Tumor Clinic, and the Hospice Medical Director at the Mayo Clinic, Rochester.

—Part 2 of the Continuing Conversation series: "Integrating Palliative Care into a Health System: A Continuing Conversation" featuring responses by Charles F. von Gunten, MD, PhD, Vice President of Medical Affairs, Hospice, and Palliative Care at OhioHealth Kobacker House and Editor-in-Chief of the Journal of Palliative Medicine.

"Video Highlights from the Inaugural Palliative Care in Oncology Symposium."


1.            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.

2.            Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. New Engl J Med. 2010;363(8):733-742.

3.            Wright AA, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300(14):1665-1673.

4.            Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Accessed January 14, 2014.

5.            Steinhauser KE, Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000;284(19):2476-2482.

6.            Parker SM, Clayton JM, Hancock K, et al. A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style, and timing of information. J Pain Symptom Manage. 2007;34(1):81-93. Epub 2007 May 25.

7.            Jenkins V, Fallowfield L, Saul J. Information needs of patients with cancer: results from a large study in UK cancer centres. Br J Cancer. 2001;84(1):48-51.

8.            Weeks JC, Cook EF, O'Day SJ, et al. Relationship between cancer patients' predictions of prognosis and their treatment preferences. JAMA. 1998;279(21):1709-1714

9.            Mack JW, Cronin A, Taback N, et al. End-of-life care discussions among patients with advanced cancer: a cohort study. Ann Internal Med. 2012;156(3):204-210.

10.          Zhou G, Stoltzfus JC, Houldin AD, et al. Knowledge, attitudes, and practice behaviors of oncology advanced practice nurses regarding advanced care planning for patients with cancer. Oncol Nurs Forum. 2010;37(6):E400-E410.

11.          Curtis JR, Patrick DL, Caldwell ES, et al. Why 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.

12.          Keating NL, Landrum MB, Rogers SO, Jr., et al. Physician factors associated with discussions about end-of-life care. Cancer. 2010;116(4):998-1006.

13.          Sullivan AM, Lakoma MD, Block SD. The status of medical education in end-of-life care: a national report. JGen Intern Med. 2003;18(9):685-695.

14.          Buss MK, Lessen DS, Sullivan AM, et al. Hematology/oncology fellows' training in palliative care: results of a national survey. Cancer. 2011;117(18):4304-4311. Epub 2011 Mar 1.

15.          Lovell A, Yates P. Advance Care Planning in palliative care: A systematic literature review of the contextual factors influencing its uptake 2008-2012. Palliat Med. 2014;28(8):1026-1035. Epub 2014 May 12.

16.          US Department of Health and Human Services. Literature Review on Advance Directives. Accessed January 14, 2015. .

17.          Lorenz KA, Lynn J, Dy SM, et al. Evidence for improving palliative care at the end of life: a systematic review. Ann Intern Med. 2008;148(2):147-159.

18.          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.

19.          The Pew Research Center for the People and the Press. Strong Public Support for Right to Die. Accessed January 14, 2015.

20.          Billings JA, Bernacki R. Strategic targeting of advance care planning interventions: the Goldilocks phenomenon. JAMA Intern Med. 2014;174(4):620-624.

21. Moss AH, Lunney JR, Culp S, et al. Prognostic significance of the "surprise" question in cancer patients. J Palliat Med. 2010;13(7):837-840.

22.          Bernacki RE, Block SD. Communication about serious illness care goals: a review and synthesis of best practices. JAMA InternMed. 2014;174(12):1994-2003.

23.          Bernacki RE, Block SD. Serious illness communications checklist. Virtual Mentor.2013;15(12):1045-1049.

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