Shared Decision-Making and Advance Care Planning in the Cancer Care Journey

Introduction

Shared decision-making (SDM) in cancer care seems to state the obvious. What other kinds of decision-making are ethical for oncologic patients, or in fact, any patient? Despite this self-evident truth, the widespread corporatization of health care across many countries and cultures forces the issue of SDM into this text and into daily clinical life in both primary and specialty cancer centers.

Although it is increasingly being recognized as crucial, there are a multitude of reasons that SDM is increasingly difficult to implement in our clinical practice. First, clinical production pressure experienced by patients and professionals often “nudges” care decisions for individuals into what is best for the health system (i.e., keeping the enterprise running smoothly), rather than what is best for varied and unique individuals. Overwhelmingly, the corporatization of medical care has drawn upon Frederick Taylor’s assembly-line optimization that focuses on knocking the variability out of processes. Although reducing variability is an admirable aim with regard to clinical practice outcomes, it can contribute to a lack of recognition of the individual behind the statistics. The quality improvement industry has embraced this limiting variability theme, and it appears that this phenomenon is now impacting clinical decision-making.

Secondly, the rapid introduction and nature of electronic health records (EHRs) is an additional factor that pushes clinical decision-making toward the preeminence of health system autonomy in decisions. Contemporary EHRs do not contain an easily accessible, comprehensive, and true-to-life picture of patients as unique individuals with values that reflect this. Rather, the records have become a compilation of drop-down menu facts that is more system-centric rather than focusing on our patients as unique individuals.

Finally, a third variable in patient care today that makes SDM difficult to implement is the increasing subspecialization of physicians caring for cancer patients. With this near hyperspecialization in many practices, the fragmentation of specialty care coupled with the time pressure of seeing more patients in a given appointment session makes it difficult to elicit unique individuals’ goals. The time to listen is likely one of the features of modern health care, which is in the shortest supply. It takes time to get to “know” someone so that decision-making can truly be shared.

Advance care planning (ACP) is a disparate but related process that is integrally linked with SDM. ACP provides patients with the opportunity to document in their own voice the values and goals that they consider integral to the medical decision-making process. Therefore it is a part of and necessitates an informed SDM. Planning ahead cannot be effective in any fashion without the underpinnings of shared framing of the issues. Therefore we assume that SDM is the bedrock upon which effective ACP rests. Without true SDM about options, ACP can be too abstract and, hence, potentially of limited value.

What Is Shared Decision-Making?

Turning to a precise definition, and arguably a more academic and dry description, SDM is defined as an approach to medical decision-making where clinicians share the best available evidence, and where patients are supported to consider options, with the ultimate aim of achieving informed preferences. In this chapter, we will also use the word individual, rather than patient, whenever practical. This is because adopting the role and attitudes of a patient almost always involves some loss of individuality and autonomy, which is necessary for truly shared and effective decision-making. Professional relationships need to be horizontal, rather than hierarchical, in decision-making. In essence, a partnership exists in the truest sense of the word.

Framing SDM in a slightly less dry fashion, in order for physicians to join with individuals in making shared decisions, a basic understanding of what is at the heart of medicine is required. The heart or center of medicine allows one to create a relationship with the individual (patient) so that they determine the type of care they want and need, using their values and goals for living to inform their choice. These care decisions are, of course, guided by physicians who define the range of appropriate treatment options that are deliverable within the capacity and expertise of their physician teams and the health systems that contain them. This philosophy embodies the concept of SDM as a dual expert model where both the physician and the patient are experts in disparate, but both equally important domains. The physician is the expert on the medical treatment options and the patient is the expert on what is important to them.

Many believe that this type of decision-making paradigm already occurs as a standard of care across the world, and indeed sometimes it does. The finest physicians practice SDM even if they may not be consciously aware of it. However, in today’s busy clinical environment, operationalizing SDM is becoming increasingly challenging. In modern clinical practice, with its production pressure, time is in short supply. With time limitations, what is also limited is listening by our physician colleagues, as evidenced by a study that demonstrated an average time of 11 s before a physician interrupts a patient when in an exam room. Without time to actively listen to an individual’s values and goals, it is difficult to utilize them to truly make a shared decision.