Early integrated palliative care to improve family caregivers outcomes
Dr Areej El-Jawahri - Massachusetts General Hospital, Boston, USA
I will be presenting a couple of things but one of the main abstracts that we’re presenting is the effect of palliative care on family caregivers of patients with cancer. We know that family caregivers play a critical role in caring for patients with advanced cancer and we do know that that caregiving role leads to a significant caregiving burden as well as psychological distress for family caregivers.
There have been multiple randomised trials showing that palliative care can help patients with advanced cancer, primarily improve their quality of life, mood and the quality of end of life care that they receive. However, the impact of palliative care on the family caregivers has not been really well established. So we did a randomised trial of a palliative care intervention for patients with newly diagnosed lung and gastrointestinal cancer. Patients were randomised, either receiving palliative care in addition to their oncology care or oncology care alone and they could have palliative care upon their request or their clinician’s request.
Patients that were randomised to the intervention met with palliative care clinicians on a monthly basis from the time of their diagnosis, essentially, of advanced cancer throughout their illness trajectory. We also enrolled their family caregivers in the study and family caregivers were allowed to be at those visits with the palliative care clinicians but they didn’t have to be there. What we notice, actually, is that family caregivers of patients that were randomised to the intervention experience improvements in certain aspects of their quality of life, specifically their vitality, their social functioning, as well as a decrease in their depression symptoms at twelve weeks after the intervention.
So we now can say definitively that palliative care improves patient outcomes but it also leads to an improvement in family caregiver outcomes.
Can we get some more details about the schedule of that care and were there any costs associated with it?
Yes, we have not done the cost analysis yet, although we do have cost data in this trial and will be able to look at those numbers. We do know that the visits entailed basically monthly palliative care visits with the patients throughout the continuum of their care and we know that the palliative care clinicians focussed on certain aspects during these visits, specifically they focussed on symptom management for patients, coping strategies for both patients and family caregivers as well as illness understanding and prognostic understanding and how to establish a good rapport with the patients and caregivers as well.
Very important lessons for the patient and for their providers. Has there been any feedback from that going to the practitioners, the providers of that care, about having the families involved?
Absolutely. So a huge aspect of providing care for this patient population is trying to take care of the whole family that are dealing with this illness that is impacting their care. We do know that palliative care clinicians when they’re meeting with patients they’re also encouraging patients to bring their family caregivers to these meetings. In this study particularly about 30% of patients actually went to their palliative care clinician appointment or 30% of the palliative care visits, I should say, were attended by patients alone but the majority were actually attended by patients and family caregivers. What’s interesting is that what we are noticing in terms of the effect of the intervention on family caregiver outcomes seems to be at least partially mediated by an improvement in patient quality of life. So as we are making patients feel better with the introduction of palliative care, we’re also impacting the care of their family caregivers.