An exploratory study of end-of-life prognostic communication needs as reported by widowed fathers due to cancer

Abstract

Objective Effective physician communication about prognosis is a critical aspect of quality care for families affected by terminal illness. This is particularly important for spousal caregivers of terminally ill parents of dependent children, who may have unique needs for communication about anticipated death. The objective of this study was to explore end-of-life prognostic communication experiences reported by bereaved fathers whose wives died from cancer. Methods From October 2012 to November 2013 we surveyed widowed fathers whose wives died from cancer through an open-access educational website. The survey included the following open-ended questions regarding prognostic communication: “What is the most important thing you would like us to know about whether/how your wife's doctors communicated with you about her anticipated death? What do you wish had been different, if anything?” We performed traditional content analysis of responses. Two researchers coded and categorized the data. Results Two hundred forty-four men responded to the survey questions on prognostic communication. Major themes addressed by respondents were the importance of clear and honest communication and physician bedside manner. They also identified unmet information needs, including wanting to know prognosis sooner. Relevant sub-themes included death coming as a surprise, avoidance, and caregiver regret. Conclusions Surviving spouses due to cancer can provide important insights for health care providers about optimum prognostic communication at the end of life. Increased physician attention to the communication preferences of both patients and their partners may improve bereavement outcomes for family members.

Communication in palliative care: talking about the end of life, before the end of life

“…The impact of early discussions can also extend to those close to patients prior to death, and into bereavement. In a recent US qualitative study, family members stated that timely end-of-life care discussions enabled them to make the most of the time they had with the patient, and make use of hospice and palliative care services sooner 21. In addition, having such conversations before the patient becomes too unwell can be crucial in allowing relatives to prepare for death while also maintaining hope 22.…”

“…Research suggests that information must be honest, while maintaining hope,21 34 38 45 but not so much hope that it gives unrealistic expectations 21 34. Information should be delivered in a way that shows empathy, but not pity,45 in a manner that is candid but not blunt 21 35 46. With regard to terminology, research has suggested that explicit phrasing can lead to distress for some family members, while for others more figurative or indirect phrasing can lead to miscommunication 47.…”

“…While these are important considerations to be cognisant of in preparing for end-of-life care discussions, we argue that of equal importance are the core, non-specialist, communication qualities that continue to be cited by patients and relatives as crucial to achieving positive communication experiences. Overwhelmingly, and unsurprisingly, patients desire to be treated as individuals, according to their preferences,35 38 46 by clinicians that are able to show compassion 21 46. They want to be listened to,42 build relationships with their clinicians38 and receive holistic care34 35 in an appropriate environment with opportunities for privacy 35.…”

End-of-life parental communication priorities among bereaved fathers due to cancer

“…Such conversations can help meet the dying parent’s goals of care,[19] identify areas of parenting concern, help the surviving parent with parenting,[27] and facilitate children’s adjustment. [27, 28] Pre-death conversations that anticipate future challenges may reduce the surviving parent’s psychological distress in bereavement.…”

“…[16–18] Findings from our previous studies on bereaved fathers suggest there is inadequate communication between terminally ill mothers and their families. [19, 20] A majority of widowed fathers with dependent children reported that their wife did not say goodbye to their children prior to death. [20] Given the importance of parenting roles and parenting responsibilities for dying parents, it is imperative to understand parents’ communication priorities at the EOL.…”