Decision Making: The Patient’s Perspective



Mark K. Ferguson (ed.)Difficult Decisions in Surgery: An Evidence-Based ApproachDifficult Decisions in Thoracic Surgery3rd ed. 2014An Evidence-Based Approach10.1007/978-1-4471-6404-3_5
© Springer-Verlag London 2014


5. Decision Making: The Patient’s Perspective



Joshua A. Hemmerich  and Kellie Van Voorhis1


(1)
Department of Medicine, The University of Chicago, 5841 S Maryland Ave, MC 6098, W700, Chicago, IL 60637, USA

 



 

Joshua A. Hemmerich



Abstract

Healthcare is moving towards a practice model involving patient participation for difficult decisions, such as whether or not to have surgery. For proper Shared Decision Making (SDM), the patients must be informed about their treatment options and the risks and benefits that go along with each so that they can apply their preferences in making the decision. SDM can be problematic in surgical clinics where time with patients is limited. Helping surgeons educate patients for SDM and incorporate the patient’s preferences into the choice is a major challenge that requires research and guidance for those who see older sicker patients.


Keywords
Shared decision makingNon-small cell lung cancerGeriatric patientsPatient knowledge



Introduction


Traditionally, healthcare has been delivered such that expert physicians have paternalistically guided patients towards the treatment they determined was best to address the patient’s diagnosis. However, multiple forces are pushing healthcare and decision making about treatments towards a practice referred to as Shared Decision Making (SDM) for medical problems for which there is no standard of care [1]. SDM involves the participation of both the physician and the informed patient. This paradigm shift extends beyond the primary care setting, where patients and physicians often have a well-established relationship, to specialty clinics, such as surgery, where the surgeon is charged with relatively limited, short-term care of the patient [2]. However, with more and more patients wishing not only for information, but also an active role in SDM for difficult decisions, such as whether or not to undergo a risky but potentially curative surgery, there is a premium put on ensuring patients are sufficiently equipped with the necessary knowledge. Failing to ensure patients are sufficiently informed when taking part in SDM is likely to have negative, dramatic, and irreversible consequences in surgical care.

A growing population of older people will continue fueling the proliferation of a diverse cancer patient population for which there exist limited data to guide treatment choices. Medical problems experienced by older and more clinically complex patients will require difficult decisions about higher risk surgical procedures, like resection of non-small cell lung cancer (NSCLC). In such decisions, where relevant evidence is limited and patient values and goals can be diverse, informed patients’ preferences should be incorporated when making the choice. Consequently, this requires the sharing of information with the patient so that they are equipped with a good understanding of their situation and options. If the growing demand for SDM is to be met and executed appropriately, surgical care professionals must be prepared to inform patients and foster healthy SDM.


What Is Shared Decision Making?


SDM is a clinical approach in which informed patients actively share in making choices about their own care with their physicians. SDM is specifically required when, due to limitations of relevant medical evidence, none of the options are considered a true standard of care. For some health problems requiring SDM, there are trade-offs between options. Options are linked to various probabilistic outcomes that make the right decision reliant on patients’ preferences [3]. The SDM process is a compound and ordered one that typically takes place in a face-to-face consultation between the patient and physician. The goal is to first deliver the important information and ensure its comprehension, and then deliberate over the options to settle on the preferred course of action.

Driving this transition from traditional paternalism towards SDM is the evolution of the physician-patient relationship towards a more collaborative model. It likely reflects changes in population demography as more paternalistic pre-baby boomers pass away and are replaced by later generation autonomous healthcare consumers, but SDM also receives pro-active international advocacy from many medical care providers, researchers, and ethicists as a moral imperative and strategy for improving care.


Call for Shared Decision Making


The practice of SDM has gained proponents, critics, and researchers from all around the world over the past two decades. An international panel of medical experts convening in 2010 came to a consensus and released the Salzburg Statement on Shared Decision Making, declaring that the implementation of effective SDM would make the single most profound improvement to healthcare quality [4]. The statement included instructions for health policy makers, as well as physicians and patients. It asserted that physicians have an ethical imperative to practice SDM with patients, engage in two way communication, field and answer patients’ questions, and solicit patients’ values and personal preferences. Physicians should also provide accurate and individually tailored information about treatment options and the uncertainties, benefits, and harms inherent in them. They must allow patients sufficient time to consider their options and recognize that most decisions need not be made immediately. The Salzburg Statement implored patients to recognize their right to participate, to voice their concerns, questions, and values, and seek out and utilize the highest quality information available [4].

Survey data indicate that the cancer patient population expresses desire for SDM, but that significant variance still exists in patient preferences for decisional control, as some patients still desire the physician to take a guiding role [5]. A qualitative interview study from 2010 indicated that older, frail patients expressed a desire for information but not necessarily to have input into the treatment choice [6]. Cancer patients often desire to have important information even when they indicated that they don’t prefer a very active role in settling on the treatment choice. Though there will continue to be an overall increasing desire for information and continuing movement towards more patients wanting to be active participants in SDM, multiple decision making styles will persist.


Meeting the Requirement of Informed Patients in SDM


SDM is said to be performed effectively when patients accurately comprehend all of the necessary information regarding their options, identify their values and preferences, and determine which treatment choice gives them the best odds of realizing their goal [7]. Having a more equal informational footing, the patient and physician can often come to an agreement about what treatment best fits an individual patient’s health state preferences and tolerance for risks, but if an agreement is not struck the patient’s preferences should ultimately prevail [4].

In much of the SDM literature, the “important information” is only vaguely if ever defined, but it is, to some degree, specific to the diagnosis and available treatment options. When considering surgery for cancer, it is important that the patient know the essential information at the critical time because this treatment cannot be discontinued and is irreversible. This is a serious concern with older patients who are observed to take different strategies in decision making and bias their attention in ways that younger patients do not [8].

Unfortunately, nationally representative survey data suggest that patients do not know the relevant information about a disease, prognosis and available options at multiple important points in care [9]. As a result, an entire decision support aid movement has started with the mission of developing and verifying the quality of tools intended to improve patient knowledge, including tools relevant to cancer care and surgery [10, 11]. Many of these tools are intended to avoid ineffective SDM participation by uninformed or confused patients that could lead to treatment choices that do not match the patient’s preferences and goals.

Several barriers to patient participation in SDM, which all could jeopardize patient education, have been identified and include dealing with multiple professionals unfamiliar with their preferences, diverse treatment strategies among physicians, fast patient turnover in hospitals, stressed medical personnel, and communication barriers [6]. All of these factors are risks that hinder the communication between patients and surgeons and contribute to patients having poor comprehension when a decision is to be made.


Impact of SDM on Clinical Outcomes


Currently, the downstream consequences for succeeding or failing to practice good SDM are not well-documented or understood. The rationale is that if a patient is to express their values, goals, and preferences and work with the physician to choose the treatment option that best fits, they must have an accurate understanding of the problem in their mind. There is some evidence that suggests that the quality of SDM is predictive of patient-centered, clinical and care-cost outcomes. Decision conflict is a construct that largely reflects how satisfied a patient is about their treatment decision shortly after making it and usually prior to fully realizing the treatment outcome. There is debate about the tenability and value of lowering patients’ decision conflict [12]. But it seems that helping patients feel secure and confident in their treatment choice will benefit overall satisfaction with care.

Although, the ethics of SDM should make it immune to cost considerations, the potential to lower or raise costs is on many people’s minds. Good SDM could improve satisfaction and functional outcomes, but poorly executed SDM could disproportionately increase costs and worsen clinical outcomes, satisfaction with care, and quality of life. Patients are unlikely to be as influenced by financial incentives as much as physicians sometimes are, but it is not a certainty how SDM will influence the cost of care until more appropriate and longitudinal data are available. However, some theories have been proposed as to how SDM might lower costs, and one in particular, costs of litigation, is highly relevant to surgery. Some data indicate that it is health care professionals’ style as much as the content of their communication that predicts litigation. There is evidence that failures of SDM such as devaluing patient or family views, delivering information poorly, and failing to understand the patient’s perspective of the problem were predictive of litigation [1315]. It is clear that improving patient comprehension and participation in SDM could lower the high rate of litigation in surgery, and potentially decrease health care costs.


The Need for SDM in Surgical Care—The Example of Lung Cancer


The decision about whether or not to undergo lung resection for NSCLC is one example of the many difficult decisions in surgery, and one that will face more and more people. The global population is growing older because there are more people who are living to an older age. The U.S. population over age 65 is estimated to increase from 40 million in 2010 to 88 million in 2050 [16]. Sixty percent of early stage NSCLC patients are aged 65–84 [17]. With ever improving imaging techniques detecting more suspicious lung nodules, surgeons will continue to see an exponential growth of older early-stage NSCLC, patients with shorter remaining life expectancies, more comorbid conditions, and more extensive informational and decision support needs.

Surgeons deliberate over details. They take into account the characteristics of the patient, their diagnosis, and the risks associated with surgery, and then formulate a recommendation about whether or not having surgery is the best course of action. Although there are professional and financial biases pushing surgeons to recommend surgery, they recognize when a patient is not an ideal surgical candidate and that it might be advisable to consider other options.

When NSCLC is diagnosed, or suspected, the mass is evaluated for stage and location. Most early stage NSCLC tumors are operable and surgeons strive to remove the minimum necessary amount of lung tissue to remove all of the cancer. Treatment choices for NSCLC patients who are older, have significant co-morbid disease, or are otherwise not perfect surgical candidates, represents a problem that calls for SDM. When it is justifiable to either go to surgery or opt against going to the OR and instead consider radiation, the patient should be informed of the options and involved in SDM.


Early Stage NSCLC Treatment Options


When presenting to a thoracic surgery clinic for probable or confirmed NSCLC, patients are regularly evaluated on their surgical candidacy. Although surgical lung resection has been the most popular treatment choice for early stage (I or II) NSCLC for decades, the decision about having surgery is not obvious when the patient is at higher risk for complications or less likely to benefit from the operation. Without additional concerns, surgery is preferred because removing cancer from the patient’s body provides the highest probability of 5 year survival. However, the immediate and long-term risks associated with surgery provide reason for pause, and more thorough pre-surgical assessment reveals that not all patients prove to be good surgical candidates.


Surgery


Depending on the stage and location of the tumor, several different types of procedures are possible ranging from pneumonectomy to a wedge resection which resects a minimum of healthy tissue. For highly fit surgical candidates with adequate pulmonary reserve [18], stage, and anatomy, the current standard of care is lobectomy to maximize the odds of cure.

Although scoring above pulmonary function thresholds predicts good surgical outcomes, lower scores are not prohibitive and the clinical complexity and the clinical diversity of patients has made it intractable to identify a criterion value of preoperative FEV1 below which the surgical risk level should be considered excessive for all patients. There are insufficient data to provide guidelines for a diverse older patient population that presents a complex array of variables.

All of the aforementioned evaluation includes data from studies that did not include random assignment and that under-represents older patients and issues associated with a geriatric population. Consequently, there is no clear picture of actual surgical risk statistics for a diverse population of older patients with a wide array of co-morbid conditions, making the decision about surgery subject in part to individual patient preferences.

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Dec 30, 2016 | Posted by in CARDIOLOGY | Comments Off on Decision Making: The Patient’s Perspective

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