Shared Decision Making: Patient Choice and Satisfaction
Sunny Mitchell
History
Shared decision making complements informed consent and aims to educate the patient on all evidence-based treatment options while incorporating their own preferences. This practice brings the patient into the decision-making process, encouraging active participation in the choice(s) of specific treatment they will undergo. This differs markedly from an era when the physician made the treatment choice for the patient. An era of enhanced breast cancer knowledge, advanced surgical techniques, and a more thoughtful consideration of quality of life (QOL) and satisfaction have merged to make shared decision making the standard of care within the informed consent process. This becomes even more imperative as the majority of women diagnosed and treated for breast cancer will complete their therapies and continue to live past the time of diagnosis and treatment.
Ideally, the effects of surgery and other treatment-related modalities for breast cancer, including chemotherapy and radiation therapy should leave as minimal a lasting footprint as possible and interfere as little as possible with QOL and satisfaction, allowing the individual treated for breast cancer to move on with their lives.
How is shared decision making implemented within the informed consent process? Components include a thoughtful, well-informed conversation with the patient that offers all evidence-based treatment modalities applicable for the individual and addresses patient expectations, while respecting autonomy and personal preferences. Incorporation of additional education tools in paper or electronic format, conversations with all members of the multidisciplinary breast cancer treatment team, and adequate follow-up time to answer any additional questions is imperative.
Patient Choice
Patient choice may be influenced by many factors, including unfortunately lack of choice. Various, sometimes conflicting findings are reported in the literature, highlighting the complexity and individual nature of patient thought and the decision-making process. It is important to identify and address the complexities and expectations which may help form the patient’s choice. Patients may experience a false sense of urgency, make decisions based on fear, value different opinions, and/or make choices secondary to a variety of factors.
Sense of Urgency and Insufficient Time for Decision Making
In order to adequately participate in treatment choice, time must be allotted for adequate decision making. Women may perceive a false sense of urgency while choosing type of breast surgery (1), and have inadequate time for decision making during fertility treatment consultation (2), or reconstruction options (3), within the decision-making process. It is imperative to address this head on while navigating the patient through the decision-making process by assuring patients that they have the time to learn about, discuss, consider, and actively participate in making the best choice for them.
Decisions Made From a Sense of Fear
Fear of recurrence may drive a woman’s choice toward mastectomy instead of breast conservation surgery (BCS) (4,5). Fear (6,7,8) followed by desires for symmetry (6,8), and the opinions of others (7), were the noted influencer of patients opting to undergo a contralateral prophylactic mastectomy (CPM). Even women who anticipate a “very large” financial burden compared to unilateral therapeutic mastectomy may opt for CPM (9). Women with a BRCA mutation, enrolled in an MRI-based screening program were more likely to undergo prophylactic mastectomies when a high perception of personal breast cancer risk and a history of breast cancer in a first-degree relative existed (10). Presumably fear is addressed by adequate education and support.
Whose Opinion Matters?
Whose opinion of best treatment is most valuable may vary from patient to patient. Women may value their own opinion, defer to their surgeon, value both theirs
and their surgeons, or try to perceive what their physician thinks is best. A prospective study in the Netherlands assessing predictors of patients’ surgical choices found patient’s concerns and their perception of the treatment preferences of their physicians were important factors in the patients’ decision-making process (11). Women opting for lumpectomy over mastectomy were found to place similar weight on their own and surgeon’s input (12). When opting for mastectomy, patients may value their own opinion most (12,13), or a combination of personal choice and surgeon’s advice (14). Another study (15) suggested surgeons attempt to identify the patients preferred degree of participation in decisions and tailor the decision-making process to them.
and their surgeons, or try to perceive what their physician thinks is best. A prospective study in the Netherlands assessing predictors of patients’ surgical choices found patient’s concerns and their perception of the treatment preferences of their physicians were important factors in the patients’ decision-making process (11). Women opting for lumpectomy over mastectomy were found to place similar weight on their own and surgeon’s input (12). When opting for mastectomy, patients may value their own opinion most (12,13), or a combination of personal choice and surgeon’s advice (14). Another study (15) suggested surgeons attempt to identify the patients preferred degree of participation in decisions and tailor the decision-making process to them.
A multicentered study examining how women had elected for or against immediate breast reconstruction with mastectomy revealed decision making was influenced by the perceived importance of alternatives, prevailing “norms” regarding surgical practice within each hospital system, and interactions with health professionals (16). A survey of patients who underwent bilateral prophylactic mastectomy (BPM) and reconstruction found patients were strongly influenced by their physicians and less so by other means (media, internet, etc.) (17).
A 2016 study out of Memorial Sloan Kettering Cancer Center noted that despite hours of education from surgeons on lack of survival benefit and risks associated with bilateral surgery, patients determined to pursue a CPM will sometimes change surgeons or hospitals to have the CPM (13). A study evaluating breast reconstruction noted most patients reported a desire to know “everything” regarding their reconstruction surgery and to be “very involved” (18). Potential financial concerns may influence patient decision and should be queried and addressed as actual financial burden may not equate to patient’s assumptions (19). Presumably, adequate information and communication are essential to base treatment decisions on realistic concerns, and the treatment preferences of the patient (11).
Older Patients
A study of women >70 years old found a complexity of factors influencing the decision-making process including: treatment characteristics, personal goals/beliefs, patient characteristics, physician’s recommendation, and personal/family experience (20). A study of women ≥67 years old found greater patient–physician communication to be associated with a sense of choice (21). Contrarily, women over 70 years old in the United Kingdom were noted to utilize passive information seeking and were noted to rely heavily on “expert” decision making; their main concern was not social support or age but rather QOL and independence (19). Older patient age should not correlate to an inherent bias of surgeons as to a presumption of thoughts or desires, each individual should be counseled on an individual basis regardless of age.
Patient Expectations
An important component of choice in the decision-making process is addressing patient expectations. Experiences of reconstructive surgery may fail to match patient’s presurgical expectations and the process of adjusting to the impact of surgery may continue past the postop period and throughout the following year (16). Recommendation of a routine preoperative checklist in preop consultations was the result of a literature review delineating a need for accurate and consistent measures of patient-reported expectations, and education of both of patients and health practitioners on the importance of informed discussion about treatment options, for women facing a choice about breast reconstruction, a major breast cancer survivorship decision (22).
High-risk women may be more likely to opt for prophylactic surgery secondary to the expectation of an aesthetically acceptable result from nipple-sparing mastectomy (NSM) and reconstruction (23). Patient expectations should be directly addressed within the shared decision-making process.
Reconstruction
A study performed in the United Kingdom noted lack of information and/or time, involvement in decision making, and issues relating to the evolution and organization of reconstructive services as potential explanations of inequalities noted in breast reconstruction (3). A survey of patients who had undergone BPM and reconstruction found multiple factors influenced decision making with the ultimate choice in reconstruction involving tissue availability, appearance of implant reconstructions, total amount of surgery required, and extent of visible scars (17).
The potential prevalence of cancer-related fatigue and depression may be implicated in a patient’s desire to undergo less extensive reconstructive surgery (24). Factors influencing type of, timing of, or desire for lack of reconstruction should stem from a fully informed patient.
“No Best Option”
Incorporating a shared decision-making model between patient and physician has inherent complexities in treatment of the breast. A study evaluating patient perceptions on shared decision making demonstrated a potential undermining of the patient’s interest of a guarantee of the best care available, in this era of medical authority shifting and perceived differences between decision making, participation, and information (25). Advances in breast cancer treatment have led to multiple options within and between treatment disciplines such as: type of breast surgery; reconstruction type, timing/ or lack
thereof; neoadjuvant or adjuvant chemotherapy; radiation therapy, etc. All of which are expected to be communicated to the patient. When patients are presented with treatment options where “no clear best choice based on outcome evidence” exists, this communication of “uncertainty” was found to negatively relate to decision satisfaction in breast cancer treatment, but not in preventative treatment (26). Informational needs have been reported as very important by patients in making breast cancer treatment decisions (27).
thereof; neoadjuvant or adjuvant chemotherapy; radiation therapy, etc. All of which are expected to be communicated to the patient. When patients are presented with treatment options where “no clear best choice based on outcome evidence” exists, this communication of “uncertainty” was found to negatively relate to decision satisfaction in breast cancer treatment, but not in preventative treatment (26). Informational needs have been reported as very important by patients in making breast cancer treatment decisions (27).
Limited Information
In a survey of women who underwent delayed mastectomy reconstruction, only 51% reported discussing immediate reconstruction prior to their delayed reconstruction and 41% reported no discussions regarding advantages or disadvantages of reconstructive options (28). Some women have reported no option given for immediate reconstruction (29). A large population based sample of 1,844 women diagnosed with breast cancer in metropolitan Los Angeles and Detroit between 2001 and 2003, demonstrated the majority of women had inadequate knowledge to make informed decisions about their breast cancer surgical treatment (30). Information on surgical options should be complete and thorough to allow for appropriate decision making.
Satisfaction
Patient satisfaction of breast cancer treatment has been measured utilizing a multitude of variables in a variety of ways. Many factors may influence an individual patient’s satisfaction.
Role of Decision Making and Feeling Informed
Patients who wanted and participated in an active decision-making role (15,31), or made the treatment decisions themselves (32), have reported greater satisfaction with their treatment choice. In women who made an informed choice of either BCS or mastectomy after making an informed choice of surgical options reported satisfaction with their choice when queried prior to and 6 months after surgery (33). Many women who had surgery for breast cancer reported not feeling completely informed about their surgical options (1,30). The role of decision making, and feeling informed can correlate directly with satisfaction and stems from a fully informed patient.