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In recent decades, patient participation in healthcare decisions has been increasingly encouraged as it gives a sense of empowerment and autonomy. However, such responsibility may induce stress for infertile patients who experienced more than one cycle of in vitrofertilization (IVF) treatment, especially in the patrilineal field of medicine where attending doctors are male-dominated. Given the unfulfilled wish of childbearing, lack of definite cut-off point, and calculation of cost in treatment discontinuation, patients often encounter a decisional crossroad to choose whether to pursue further or discontinue IVF cycles after experiencing failure.
To date, little is known about women’s preferred role in treatment decision making in the context of infertility, decisional dilemmas and complexity of factors such as physical, psychosocial, religious and cultural influence.
This study examined the impact of decision role preference, prospective treatment experience and decisional regret on a longitudinal scale to inform clinicians in their facilitation of infertile patient in treatment decision making.
Methods
130 women who experienced IVF treatment failure by indication of negative pregnancy test were recruited at a university-affiliated reproductive medicine clinic. With consent, they completed questionnaires asking their history of infertility treatment, preferred roles in treatment decision-making, perception of treatment outcome and mood at three time-points: announcement of treatment failure (T0), when they made a subsequent treatment decision (T1) and three months afterwards (T2). The study spanned 18 months.
Results
On average, participants were aged 37.0 (SD=3.5), married for 7.4 years (SD=3.7), and being diagnosed of subfertility for 4.1 years (SD=2.45). Majority received tertiary education and had a full-time job.
Most women were classified as passive decision makers, preferred minimal shared responsibility (41.9%), or a totally passive role (40.4%). 89.4% of them regarded doctors are best to decide subsequent treatments, only 10.1% preferred shared responsibility. No respondents preferred an autonomous role. Regarding treatment discontinuation, most participants preferred minimal involvement and highly dependent on physicians for final decisions (84.3%); only a small proportion preferred shared responsibility (7.1%), or uphold autonomy (8.6%) in the process.
Nonetheless, regression analysis identified a subgroup of women (N=41) who believed doctors, not patients, should make decisions in general at T0, but nonetheless wanted a bigger role in deciding their IVF treatments at T1. These women experienced significantly higher treatment regret (β=.076, p <.001) and depressed mood at T2 (β=.152, p <.05), even after controlling for depressed mood at T1 .
Implications
Results showed when conflict arises between the belief that doctors know best and the desire to have a more active role in IVF treatment planning, women experience greater regret and become more depressed. Hence, identification with traditional beliefs of childbearing, which emphasizes the patrilineal culture, will be associated with worse psychological outcome among patients.
The study underline the importance of cultural sensitivity in addressing fertility-related issues in order to better facilitate psychosocial support at the clinic, as well as to empower these women to express their patients’ concerns and decisional preferences throughout the course of medical treatment.
This study was generously funded by the University Grant Council – General Research Fund HKU740613.