Abstract
Advance care planning conversations traditionally have been promoted using the Standard of Substituted Judgment and the Standard of Best Interests. In practice, both are often inadequate. Patients frequently avoid these conversations completely, making substituted judgment decisions nearly impossible. Surrogates are also often unable to make clinical decisions representing the best interests of family members as patients. Many physicians are unskilled at discussing these difficult and complex decisions with surrogates as well. Using an integrative family medicine ethics approach, we present a case study that demonstrates how skillful family physicians might introduce and conduct these conversations at routine office appointments, reconciling ethical theory with both patient-centered and physician-centered considerations in a practical and time-sensitive fashion. We believe 3 physician behaviors will help prepare patients to engage their surrogates and help empower surrogates to serve their role well, if and when that time comes: 1) thinking broadly about clinical issues and ethical considerations; 2) engaging in a mindful and contemporaneous deliberation with the patient—and surrogate when appropriate and possible—about these issues and considerations; and 3) cultivating a reflective responsiveness to these interactions, both when things go well and when they do not.
Advance care planning conversations traditionally have been promoted using the Standard of Substituted Judgment and the Standard of Best Interests.1 In practice, both are often inadequate. Patients frequently avoid these conversations completely. In the estimated 10% to 20% of cases when Advance Directives are executed, patients and surrogates often have only cursory conversations about future decision making.2⇓–4 When patients and surrogates do have more meaningful conversations, they still tend not to discuss the specific future treatment decisions and terminal care scenarios that enable surrogates to make decisions in the same way that patients would make them.5⇓⇓–8 Studies also note that people change their minds about end-of-life care decisions over time, making accurate substituted judgment decisions even more difficult.9,10 At the same time, because surrogates tend to see their loved ones as valued, living members of the family, they are also often unable to make clinical decisions that truly represent the best interests of family members as patients.
For all these reasons, surrogates describe being ill prepared to make decisions on behalf of their loved ones, and they report that serving in the role of proxy decision maker is extremely stressful.11,12 Many physicians are unskilled at discussing these difficult and complex decisions with surrogates, as well.13 Fortunately, recent work has shown some progress in advance care planning and surrogate decision making. One study, for example, demonstrated that patient participation in ambulatory group visits improved advance directive completion and understanding.14 Another noted that individuals who have had their own prior advance care planning conversations are better equipped to make surrogate decisions for patients in intensive care units.15 A third found that conversations between terminally ill hospitalized patients and their surrogates which are actively facilitated by the health care team improve subsequent decision making.16 Little has been written about how to conduct advance care planning conversations during routine office visits.17,18
Based on these informative works, our own observations, and dialog with colleagues, we propose a family medicine-focused approach to advance care planning. This integrative approach in the routine office setting reconciles ethical theory with the patient's medical issues and personal values and interests, the physician's goals for the visit, and the realities of ambulatory practice. It addresses such questions as how urgent is this conversation? How much time is available today? When should follow-up be scheduled? Should anyone else be present during this discussion? We believe this approach will improve the quality of family physicians' patient education on this topic and help all of us make the best possible decisions together, when that time comes.19⇓⇓⇓⇓–24 The following Reflective Case Study is a composite example of how this may be done.
In this encounter, we pair the words from the clinical conversation with the mindful internal thinking of a seasoned clinician. Our intent in demonstrating what she is thinking while using this approach is 2-fold: 1) to help family physicians better prepare and encourage patients to talk to their friends and family about their values, expectations and fears about future care, and 2) to help patients and physicians empower surrogates to make decisions with confidence and serve this intimate and challenging role with dignity and grace, if and when that time comes.
Reflective Case Study
Mr. Theodore Jones (a pseudonym) is a 65-year-old man who presents at the local Community Health Center to his family physician, Dr. Nadine Smith (also a pseudonym). They have a professional relationship of 5 years, one that started when Mr. Jones lost his work and insurance coverage. Mr. Jones has hypertension, for which he has been taking 2 generic medications. Even though his blood pressure has been under good control during these 5 years, Mr. Jones continuously expresses anxiety about having a heart attack and dying suddenly, as his father and grandfather both did in their sixties. We join the discussion between him and Dr. Smith.
Discussion
Advance care planning conversations in the office setting are often challenging. Patients frequently avoid them, and surrogates are stressed when asked to participate. Many clinicians struggle with how to raise the subject, and, when they do, continue to struggle with how to discuss it in a supportive and meaningful, yet still practical and time-efficient way. Our experience, however, is that most physicians and patients support future health care planning, even if they do find it difficult. We also strongly believe that the best clinician to discuss an individual's goals of care is that person's family physician—the medical professional whose relationship with the patient addresses the fullness of the patient's bio-psycho-social situation.
The integrative approach we present here is an application of one we have previously described as a “family medicine ethics.”25 Such an approach begins with developing an ethos of asking the question, “What, all things considered, should happen in this situation?” at every clinical encounter. Answering this question involves 4 broad steps: 1) identifying situational issues, 2) identifying involved stakeholders, 3) gathering subjective and objective data, and 4) analyzing issues and data to direct action and guide behavior.
Applied specifically to the anticipatory discussion of advance care planning in the office, this approach addresses the patient's personal situation and medical facts26; examines the values, experiences, and relationships among the patient, family, and medical team27⇓–29; acknowledges the role of shared decision making, according to the patient's and surrogate's interests and needs30; and considers several ethical theories, including principles,31 case-based analysis—including the “4 boxes,”32,33 virtues,34 rules,35 narrative ethics,36 and the ethics of care,37 in making thoughtful, meaningful clinical decisions. It also addresses the practical reality of ambulatory practice, reconciling these considerations into the scenario of an office visit that relies on careful time management and followup.
As with any real-life, real-time discussion, what the doctor is thinking does not always “line up” with the dialog. This example is not intended to represent a perfect approach; there is no one perfect approach. Our observations confirm that the process of communicating itself may be as important, if not much more important, than actually signing an Advance Directive document.38
To that end, we believe 3 physician behaviors are crucial to prepare patients to engage their surrogates and to empower surrogates to serve their role well, if and when that time comes: 1) thinking broadly about the clinical issues and ethical considerations, as noted above; 2) engaging in a mindful and contemporaneous deliberation with the patient—and surrogate when appropriate and possible—about these issues and considerations; and 3) cultivating a reflective responsiveness to these interactions, both when things go well and when they do not.
Conclusion
Addressing advance care planning in the routine office setting is often challenging for patients, surrogates, and family physicians. The current literature offers useful suggestions to assist in certain aspects of planning conversations, yet it fails to help clinicians integrate the many bio-psycho-social dimensions that come to bear as this process unfolds. The integrative approach we illustrate in the Reflective Case Study, above, models a dynamic family medicine ethics approach to these conversations.
We invite thoughtful replies to this approach and case study. Our hope is that others will use it in graduate and continuing education venues, both as an example of how advance care planning conversations can be conducted and as a stimulus to interactive discussion among family physicians regarding how they “do” ethics in their own practices. Finally, we strongly encourage ambulatory-based research on the process and outcomes of routine advance care planning.
Notes
This article was externally peer reviewed.
Funding: none.
Conflict of interest: none declared.
To see this article online, please go to: http://jabfm.org/content/32/1/108.full.
- Received for publication July 12, 2018.
- Revision received September 17, 2018.
- Accepted for publication September 27, 2018.
