OVER THE NEXT 30 years, palliative care needs in Ireland are expected to double. Our population growth to over five million, combined with people living longer with life-limiting illnesses, means that more people than ever will need palliative care.
A lack of sustained investment to fund formal (otherwise known as ‘paid’) caregiving in palliative care results in the burden of care shifting away from care provided by the State.
The projected growth of palliative care needs at our population level means that people who need that assistance in the future are likely to depend even further on family for informal care.
Family tensions
It’s not unusual or new for families to face difficult decisions about palliative care. Symptom management, advance care planning and end-of-life care are issues that families face daily.
Research published earlier this year based on decision-making among patients and their family caregivers about palliative care showed that not only do patients and family caregivers differ in their preferences for care, but they also might not necessarily be aware of each other’s preferences.
Often patients do not wish to be a burden on their families and there can be tension between family members regarding caregiving.
The research which involved a full review of studies focused on patient and family caregiver agreement or disagreement in decision-making in palliative care found that both people with life-limiting illness and their family caregivers prioritised pain and symptom management to alleviate distress. However, family caregivers may be more in favour of treatments that sustain life than patients. Patients and their family caregivers may also differ in their preferences for the timing of interventions and in their overall readiness to make decisions about care.
Facing end of life
The everyday reality of living with a life-limiting illness even when engaged with formal palliative care services is challenging. Life-limiting illness results in loss, distress, and anxiety for those affected by it. People do of course adjust to the physical, psychological, and emotional effects of life-limiting illness, but relationships within families may also suffer in the process.
In some cases, family caregiver distress and the burden they experience can come from feeling responsible for their ill family member when confronted with decisions about care.
As healthcare professionals, it’s important that we try to figure out how to foster mutual understanding between patients and their family caregivers. It is not always possible to reduce the burden of care for family caregivers, but it is feasible to help both the patient and family caregiver to manage their conflicted feelings about care.
Open communication between patients and family caregivers fundamentally aids discussions around end-of-life care, helps to accommodate each other’s preferences and helps both patients and their family caregivers cope with advancing illness.
Living well
Palliative Care Week 2022 is running this week from 11-17 September and raises awareness of the differences palliative care can make to people with life-limiting illnesses, and their families, throughout the island of Ireland. The theme this year is Living as Well as Possible.
The emphasis on ‘living well’ encompasses the well-being of the person with a life-limiting illness and their family members; we know that patient illness impacts adversely on the well-being of both the person with the illness and their family caregiver.
The rise in palliative care needs in Ireland means that more people in Ireland with life-limiting illnesses will be asked by healthcare professionals to make decisions about palliative care, including end-of-life care.
Our challenge is to minimise distress and improve the quality of life for both patients and family caregivers. We will do this by carefully considering the competing needs of patients and family caregivers and by implementing strategies that help patients and family caregivers openly communicate their preferences to one another.
After all, the focus of palliative care is to alleviate health-related suffering and improve the quality of life for people with life-limiting illness and their families.
Dr Geraldine Foley is an Assistant Professor in Occupational Therapy in the School of Medicine at Trinity College Dublin. More on Palliative Care Week can be found here.
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