Family carers deserve to be involved in discussions between oncologists and patients, and new guidelines show how this can be done while tackling challenging issues such as withholding information and consent that families may bring into a consultation.
Launched by COSA president Professor Phyllis Butow at COSA 2018, the guidelines developed by her TRIO team at the Chris O’Brien Lifehouse, University of Sydney, aim to create a supportive consultation environment for family carers who say they often feel excluded or unwanted by clinicians.
“Some family carers censor their own involvement for fear of ‘intruding’ on the consultation and may therefore not ask important questions or share information,” say the authors, including Associate Professor Ilona Juraskova and Dr Rebekah Laidsaar-Powell (PhD), from the School of Psychology.
The new guidelines also address the often unmet emotional and social needs of carers in order to help them avoid becoming impaired and therefore unable to provide optimum care for patients, the authors say.
However the guidelines also recognise that interactions with family carers can be complex and difficult for clinicians, such as when there are many family members wanting to attend a consultation, or when family members appear to be too “controlling” or coercive with the patient.
The guidelines therefore include sections to cover challenging situations such as families wanting to withhold information from the patient, opposing the patient’s treatment preferences, or when there appears to be family conflict or abuse.
Speaking at a COSA 2018 session, co-author Dr Laidsaar-Powell said these are common situations that clinicians face and are not easy to manage.
“These challenging interactions can take the focus off the patient and reduce their autonomy. They can also just derail a consultation when time is precious and really impede the delivery of effective clinical care,” she said.
“As well, these stressful and emotive situations can be very stressful for clinicians themselves, and contribute to professional burnout.”
Until now there has been very limited guidance available on how to manage communications with family carers, she said, and the new guidelines had developed based on literature review and evaluated via the Delphi consensus process.
The guidelines can be obtained from: [email protected]