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.

Why Is Shared Decision-Making Needed?

1.

Health care needs to be personalized and contextualized.

Physicians often view health care interactions as being based primarily on professionalism. There is little to argue about that insight, yet it is incomplete in scope. As individuals, health care must be personalized and impactful. Professionalism relating purely to clinical judgment and medical education is only a piece of it. The bridge between purely professional care and personalized care is the sacred commitment to put the individual’s values and goals uppermost when determining an agreed-upon plan of care. This is especially true when decisions regarding cancer care are the focus of SDM.

Our focus on “evidenced-based medicine” can lead many to believe that there is only one singular correct treatment approach endorsed by the best available medical evidence for an individual condition. Of course, missing from this decision-making paradigm is the uniqueness of the individual in question. Does that individual have caregiving responsibilities that make some approaches to the proposed cancer treatment difficult? Do they have concurrent diseases that make a cardiac side effect of treatment problematic? Do they have certain treatments that they would be unwilling to accept? These examples of individual variables should also inform the SDM process.

The key to being able to keep the individual at the forefront is contextualization, which can be lost when care teams focus primarily on the clinical aspects of medical decision-making. Without contextualization, evidenced-based approaches can morph into an algorithmic approach to care that gets translated to the individual (patient), as “this is the way we approach your condition at our institution.”

In spite of the availability of internet-based search engines that put a universe of information at an individual’s fingertips, using that information effectively requires insight and experience. Experience that can only be provided by skilled and trained physicians. However, although physicians are in a position to understand the array of treatment options and accompanying medical evidence, it is the individual who is best able to contextualize those options into their choices for an approach forward. This is the essence of SDM.

2.

Risk discussion is often performed suboptimally, and SDM encourages us to be comfortable and comprehensive in our approach.

What is often not shared with patients in early consultations is the plethora of side effects linked to the options for cancer treatment. When cancer survivorship is the focus of research, it deals almost exclusively with the lingering side effects of treatment, how the side effects can continue long past the treatment phase, and possible cure of the disease. Given that a key portion of the discussion leading to SDM involves disclosing the potential side effects of treatment, physicians need to be comfortable routinely covering these side effects and quality of life measures in our risk discussions with patients.

3.

Patients feel disempowered due to the phenomenon of “hostage bargaining syndrome” and SDM may provide a means to overcome this.

One of the key reasons that SDM is needed is that individuals (patients), their families, and caregivers can become disempowered in the face of the multitude of challenges that accompany medical care. During our senior author’s (DLB) experiences as a physician, and as a patient, he has often pondered why individuals, when they enter the health care environment, move from their typical, fiercely independent, and consumer-oriented mindset to a more submissive one than is characteristic in almost any other area of their lives. A recent Mayo Clinic Proceedings article provides a most interesting look at one of the reasons they postulate that this is occurring.

Berry and colleagues from the business school at Texas A&M University published the work: When Patients and Families Feel Like Hostages to Health Care. In their manuscript, they defined in detail a concept they termed “hostage bargaining syndrome” (HBS). They assumed that it was HBS that was responsible for those submissive feelings and actions exhibited by patients in clinical interactions. They posit that when patients and families are in the presence of clinicians, they may behave like hostages, negotiating from a position of fear and confusion over their health decision-making. The authors outline that when HBS occurs there is a reluctance for patients and their families to challenge authority figures in the form of doctors, nurses, and other health care workers. These authority figures retain de facto control because of their attributes, such as expertise, prestige, and position. The authors hypothesize that this phenomenon exists because health care, especially that of a critical or life-threatening nature, is a “need” service, rather than a “want” service. This situation shifts the balance of power in favor of those in charge, rather than those consuming the service (i.e., the patient and/or patient’s family).

Furthermore, the authors go on to frame the situation where HBS is allowed to persist and escalate to the extent that patients and their families may enter the second step along the HBS continuum—a state of learned helplessness. After the escalation of HBS into learned helplessness, the individuals involved begin to expect that future events will also be uncontrollable and thus have feelings of helplessness reinforced and amplified. Once this helpless mindset has been adopted, individuals become moldable to the system’s standard operating practices. These standard operating practices are most often based on optimizing system functioning, rather than focusing decision-making on the unique human being facing a specific, and for them, distinctive health challenge.

Our senior author (DLB) spent several months chronically, and then critically ill, and as a result, he believes he understands some of these feelings. To him, what seems most often needed inside health systems to overcome and surmount this situation of learned helplessness is a focus on true “ informed choice ,” rather than the standard practice of obtaining informed consent for procedures or treatment plans. By this, an individual (patient), or their family, if they are appointed as substitute decision-makers, is informed of all their options, and the potential impact of these options on their quality of life. This is in stark contrast to simply being asked to sign a form giving legal consent to a procedure and direction for care. This concept of informed choice amplifies true SDM, rather than a system-centric decision-making model. However, this takes time and heart, both of which are being “weaned out” of many health system interactions, due to perceived clinical production pressures.

At a personal level, our senior author (DLB) understands more today about what patients want from a health care interaction than he did before switching careers from academic leadership and clinical practice to advising others on health care decision-making. Providing background on his bona fides as a physician, he practiced across the United States in some elite institutions ^a

a Virginia Mason, Seattle, Washington, Mayo Clinic, Rochester, Minnesota, University of Iowa, Iowa City, IA, UT-MD Anderson Cancer Center, Houston, TX, Cleveland Clinic, Cleveland, OH.

that delivered wonderfully complex and high-tech medical care, viewed as some of the very best institutions in the United States. Again, he also knows what it is to be a patient, both with a critical illness and cancer, dependent on others for his life. Bearing these credentials in mind, he believes there are six things patients desire from their physicians and care team, even if they know their illness or injury cannot be “fixed” or “cured.” If modeled by health care providers, these six things can empower patients and either prevent or lift them out of this state of “hostage” or learned helplessness. They are outlined below:

Value me as a unique human being—not special, but unique.
Truly care for me when coming into contact with me: I can tell.
Provide a value that is affordable to me and understandable.
Share with me your competence, not an insider’s arrogance.
Give me a sense that I am at the center of this care encounter.
Do not abandon me: Provide me with communication and follow up.
4.

SDM provides value in health care over and above traditional measures of value.

Unbeknownst to those not looking for it, the rhetoric of SDM is also present in all manner of texts. As the notable author, C.S. Lewis, stated many years ago, “the next best thing to being wise oneself is to live in a circle of those who are.” SDM is about using physicians and health care resources as “wise friends” to inform decision-making. In this case, one of our wise friends is David W. Johnson. His book, Market vs. Medicine , is a “should read” for any of us seeking to heal health care decision-making and move toward true SDM and value in health care. In his text, the concluding chapter is a timely reminder for all of us attempting to straddle a volume-based and value-based health delivery system. He cautions us that “the straddle” is failing US society, self-insured employers, and the larger health care system. In this concluding chapter he quotes John Maynard Keynes, who observed, “The difficulty lies not so much in developing new ideas as in escaping from old ones.” Johnson encourages the health care industry to escape from its “revenue as the highest good” and move to providing measurable value to individuals, and secondarily to society. This is only possible through effective SDM.

Again, using our senior author’s (DLB) experience as both a physician and a patient, it is evident that value discussions often take on a utilitarian societal view, and the individual’s voice is muffled. Both voices are needed to deliver health care value through the SDM. Michael Porter constructed his health care value equation by placing “health outcomes that matter to patients” as the numerator and the costs of delivering those outcomes in the denominator. See Fig. 56.1 for a formula-derived overview of SDM.