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AANS Neurosurgeon | Volume 25, Number 3, 2016

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The Evolution Toward Shared Decision Making in Medicine and Surgery

For most patients and their families, settling on a treatment option is one of the most difficult decisions to make. Especially during critical illness, they turn to physicians for guidance and answers, given physicians’ in-depth education and experience. It is through training and skill that physicians become qualified to advise patients regarding treatment options, risks related to various options and prognosis.

“No matter how astute they are, patients usually have difficulty choosing an option, unless they at least have a reasonable understanding of the process and its potential outcome (1).” 

In shared decision making, also called joint decision making, the physician and patient work together, each bringing their own situationally appropriate knowledge and background, to help reach an acceptable treatment choice. For the physician, the knowledge and background are principally related to diagnostic certainty and appropriateness of various treatment choices. For the patient, these are principally related to personal acceptability and tolerance of particular treatment options, as well as how any particular option supports or detracts from personal functional/life goals. In many ways, the physician educates the patient about the disease, its likely outcome and potential options for treatment, while the patient makes the ultimate decision with regard to his or her values in life and outcome goals from treatment. Ultimately, a “good option is one that is based on a joint decision made by the doctor and the patient and that gives the best therapeutic result with the least harm (1).”

Medical Paternalism
When a patient comes to a physician, the patient is seeking expertise and answers. They wish to know what is wrong with them, whether they have come to the correct doctor and if they are likely to get better with treatment. In addition, they want to know options for treatment as well as the likely outcomes for various treatments and for no intervention. Generally, patients desire a physician who is knowledgeable, up-to-date on evidence-based medicine and dedicated to being a guardian of their best interest. 

Historically, it was socially accepted that the physician made decisions on behalf of the patient’s best interest, while the patient remained as a passive player in the decision-making process. The patient was granted the “sick role” and thus was excused from work or family responsibilities while simultaneously being assigned the duty of trying to get better (2). Interestingly, even with the maturation of contemporary medical practice, this delineation of the “sick role” and the “duty to recover” parallels the Family Medical Leave Act (FMLA) policies which remain in place today.

Completing the standard FMLA paperwork reveals that – in exchange for being lifted from his work duties due to illness (date that illness commenced, injury happened or has the patient spent an overnight stay in the hospital), the worker is obligated to try to get well, seek expert help and comply with the medical regimen (has the patient been referred to any other medical provider, have treatments other than over-the-counter medication been prescribed and what is the expected follow up regimen for the patient, when is the patient expected to be released back to work).

Paternalism is defined as,“the policy or practice on the part of people in positions of authority of restricting the freedom and responsibilities of those subordinate to them in the subordinate’s supposed best interest (3).” Beneficence was felt to be the driving ethical principle during the time of primarily paternalistic medical decision making. The knowledgeable doctor interviewed and examined the patient to arrive at a diagnosis and then used professional judgment to prescribe a treatment that was thought to be a best fit for a given individual patient. The paternalistic physician dominated the medical encounter by using skills to diagnose and recommend tests and treatments for the patient – who likely participated in decision making only to the extent of providing consent for treatment. 

Why Paternalism is Bad, But Full Autonomy Isn’t Good
Critics of paternalism often argue that physicians cannot know the hopes, fears and desires of their patients. Each patient has personal, cultural and social values that coalesce and guide their beliefs regarding what burdens in life are worth bearing. While patients value the opportunity to decide whether the risks, benefits and side effects are worth the chance for relief/improvement of symptoms or increased survival, they know clear information is essential to make a wise decision. As such, they look to the physician for this. 

More often than not, diseases or ailments have multiple reasonable treatment options with, “different possible outcomes, and substantial uncertainty…[and as such] there is often no clear-cut right or wrong answer…[and differing treatment choices] will vary in their potential impact on the patient’s physical and psychological well-being (4).” These types of treatment choices (think of the myriad options for back pain treatment – medical and surgical alike) constitute a tough decision for the patient to make alone.

It is important to acknowledge that patients will have their own personal beliefs about treatment options based on their prior experiences or readings. While some of these beliefs may be inaccurate, they are the foundation that the patient starts with in trying to understand his or her illness and subsequently in trying to decide upon treatment. For a physician to simply communicate a series of options and leave the decision entirely up to the patient does not provide him or her with the means to empower autonomy. At least one purpose of seeking the help of a physician is to be guided in choosing an option that works both toward the intended improvement and is in alliance with the patient’s goals (1).

Shared Decision Making 
The concept of shared decision making rests on the desire for interaction from both parties in the doctor-patient relationship to work collaboratively to find a treatment option that is best able to provide the intended medical benefit while simultaneously protecting and enhancing the patient’s perception of self and right for self-determination. Within the shared decision making framework, one aspect of the physician’s role is to provide the patient with medical information regarding diagnosis, testing and treatment options. The patient takes the information provided and, in conjunction with premorbid beliefs, works to understand the disease, testing and treatments that might be appropriate moving forward.

Further iterations of information gathering, dissemination and internalization/understanding may be required prior to formulating the ultimate treatment plan. As the process of information exchange and understanding from both the medical and the personal standpoints proceeds, the patient and the physician collectively analyze the potential available treatment options and then within the context of the patient’s personal values and goals – they together strive to determine the best treatment choice for the individual patient. 

This type of shared decision making requires that the physician and the patient have active discussions about the patient’s understanding of the disease, what the patient values as a good quality of life and what the patient desires from treatment. The doctor and the patient must mutually agree on the plan of care after both have worked together to form a consensus about the preferred treatment. Both the physician and the patient play active roles in shared decision making. It has been suggested that shared decision making may be linked with improving positive patient outcomes; these might include patient satisfaction and improvement in functional status (4) and reduced risk of alienating the patient.

In medicine and surgery, choosing the “right” treatment option is often an extremely difficult task. This difficulty is amplified when different treatment options each come with uncertainty of outcome, sometimes favorable, while other times unfavorable.  For difficult decisions with multifaceted considerations regarding the burdens and benefit of treatment options, simply “[p]resenting a series of options without indicating which (in the doctor’s opinion) might be the best for the patient’s condition is to evade professional responsibility… Recommendation is not paternalism as long as it is sincere, is based on reasonable knowledge, and is in the best health benefit of the patient (1).” 

Patients should expect not only sound diagnostic acumen but also the physician’s expert recommendations. In situations where clear-cut answers are not readily available, shared decision making becomes most valuable to both the patient and the physician. Working together to improve the balance of information and understanding in both directions (from physician to patient and from patient to physician) provides the foundation for sound shared decision making in the doctor-patient relationship and enhances the potential for best outcomes. Sharing of information, understanding and deciding appropriately balances the goals of improving the patient’s health and respecting the patient’s personhood.

References
1. Hekmat-panah, J. (2013). Communication with and on behalf of patients: essentials for informed doctor-patient decision making. North Charleston, S.C.: CreateSpace Independent Publishing Platform.

2. Parsons, T. (1951). The Social System. Glencoe, IL: The Free Press.

3. “Paternalism, n.” OED Online. Oxford University Press, March 2017. Web. 16 May 2017.

4. Charles, C., Gafni, A., & Whelan, T. (1997). Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango). Social Science & Medicine, 44(5), 681-692. 

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