The needs of terminally ill cancer patients versus those of caregivers for information regarding prognosis and end-of-life issues

Josephine M Clayton, Phyllis N Butow, Martin H N Tattersall
Cancer 2005 May 1, 103 (9): 1957-64

BACKGROUND: The difficulty of negotiating the concerns of family members while also respecting the needs of the patient adds complexity to the task of discussing prognosis and end-of-life (EOL) issues with terminally ill cancer patients. The informational needs of caregivers may be different from those of the patients themselves with regard to these topics. However, to the authors' knowledge, this issue has received relatively little research attention.

METHODS: The authors conducted focus groups and individual interviews with 19 patients with far advanced cancer and 24 caregivers from 3 palliative care (PC) services in Sydney and 22 PC health professionals (HPs) from around Australia. The focus groups and individual interviews were audiotaped and fully transcribed. Additional focus groups or individual interviews were conducted until no additional topics were raised. The participants' narratives were analyzed using qualitative methodology.

RESULTS: The participants had varying views regarding whether patients and caregivers should be told different information concerning prognosis and EOL issues. Three themes were identified from the transcripts regarding meeting the informational needs of both the patients and caregivers: 1) the importance of consistency and openness, 2) the specific information needed to care for the patient, and 3) the value of having separate discussions with the patient and caregiver. A desire to restrict the patient's access to information by the caregiver or vice versa was reported by the HPs to be one of the most challenging issues when discussing prognosis and EOL issues. Three themes were identified with regard to this issue: 1) autonomy versus protection, 2) negotiating family dynamics, and 3) difficulty using interpreters.

CONCLUSIONS: The results of the current study emphasized the importance of considering the distinct informational needs of caregivers, as well as those of the patient, when discussing prognosis and EOL issues.

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