Holding Secrets While Living With Life-Threatening Illness: Normalizing Patients’ Decisions to Reveal or Conceal

Abstract

Communicating openly and directly about illness comes easily for some patients, whereas for others fear of disclosure keeps them silent. In this article, we discuss findings about the role of keeping secrets regarding health and illness. These findings were part of a larger project on how people with life-threatening illnesses re-story their lives. A narrative approach drawing on Frank’s dialogical narrative analysis and Riesman’s inductive approach was used. Interviews were conducted with 32 participants from three populations: chronic kidney disease, HIV/AIDS, and cancer. Findings include case exemplars which suggest keeping secrets is a social practice that acts along continuums of connecting–isolating, protecting–harming, and empowering–imprisoning. Keeping secrets about illness is a normative practice that is negotiated with each encounter. Findings call health-care providers to rethink the role of secrets for patients by considering patient privilege, a person’s right to take the lead in revealing or concealing their health and illness experience.

Barriers to home exercise for patients with Parkinson’s disease: a qualitative study

“…The majority of the population believes that it is not healthy for patients to know much about their conditions. 64 In the Chinese context, peace of mind of elders is considered a critical social good. 65 What is considered honourable truth-telling in other cultures may be considered dishonourable in China, which negatively affects the autonomy and motivation of patients to participate in treatment decisions.…”

“…In China, children often choose to conceal disease information from elderly patients, which deprives disease cognition and rehabilitation opportunity of PwPDs. The majority of the population believes that it is not healthy for patients to know much about their conditions 64. In the Chinese context, peace of mind of elders is considered a critical social good 65.…”

Importance of temporality and context in relation to life habit restrictions among patients with systemic lupus erythematosus: A psychosocial qualitative study

“…Intending to hide information about an illness is a social practice that is "a conscious decision based on perceived consequences that could be positive/ beneficial and negative/harmful or both at the same time". 36 An individual's decision to reveal or mask their illness should be normalized, 36 especially when this decision has such an important role on LH. While respecting each individual's choice, the recommendations proposed by Poritz et al 35 in the traumatic brain injury context seem to be transferable and relevant to SLE.…”

“…Interventions must address intrapersonal, interpersonal and structural levels. 36 At the intrapersonal level, education and counseling interventions could be developed to help individuals cope with stigma and could be integrated into therapeutic interventions. 37,38 It could therefore be relevant to consider more closely the issues associated with illness stigma and discrimination during “shared educational assessments”, and to offer a therapeutic education session of these issues.…”

Canadian family members’ experiences with guilt, judgment and secrecy during medical assistance in dying: a qualitative descriptive study

“…7,8,[21][22][23][24] However, keeping it secret may also protect them from judgment and objections. 5,25 Family members' prolonged guilt and trauma tend to be underrecognized by professionals and MAiD programs because their involvement with relatives often ends at death. [7][8][9]21 Health care professionals may also not know that MAiD is kept secret 7,11,12,[17][18][19] and unintentionally overlook relatives' unique needs, which may undermine family-centric care.…”