By guest editor Brendan O’Hara, Programme Manager at All Ireland Institute of Hospice and Palliative Care
When I began working with All Ireland Institute of Hospice and Palliative Care in 2012 my knowledge of palliative care was informed by an awareness of hospices and related charities; and by limited reading including the writings of Dr Sheila Cassidy.
It’s risky to reflect on what my understanding was back in early 2012, with the benefit of the experience gained in the years in between. However, I thought then that palliative care was only for the last days of life, was for people living with cancer and was delivered in hospices.
It is not unusual for someone not to have heard of palliative care at all. Nor should it be surprising that when someone is told by a friend that they are receiving palliative care that the friend asks, does that mean they are dying? Working in this area, I was asked this question.
A key work area of All Ireland Institute of Hospice and Palliative Care (AIIHPC) is to increase awareness and understanding of palliative care, primarily through our annual Palliative Care Week campaign. Institute Director Karen Charnley explains more in an article in this edition of VIEW.
To coincide with this year’s Palliative Care Week, we decided to sponsor an edition of VIEW magazine. VIEW’s examination of the issues affecting society is aimed at getting readers to talk about them, which resonates very strongly with AIIHPC’s aim of creating conversations around palliative care.
These conversations need to take place across the palliative care sector, across the wider health and social care system, and across the whole of society.
While serious illness, death and dying are universal, it will be a new experience for each person facing their circumstances of a life-limiting illness or condition and increasing frailty. The goal of palliative care is to improve the quality of life for both the person and those important to them. While not denying the reality of death, palliative care offers a positive approach which holds space for living life to the full to the very last days of life.
To support this quality of life, palliative care focuses on the whole person – physical, psychological, social and spiritual. As each person is unique and complex, a one size fits all response to each person and their family’s situation will not meet their palliative care needs.
A multi-faceted response not only involves health and social care professionals, whether they are specialist palliative care professionals often associated with hospices and hospitals, or those providing generalist palliative care.
Much of the care is provided by family carers and communities. Many people are supported by their GPs, community nurses and other health and social care professionals in their communities. I know from personal experience where family members received this support where they lived, without it ever having been described as palliative care.
For people who may have more complicated symptoms, insights into some of which are provided in this edition of VIEW, more complex support is required. This may include support through hospice and/or hospital services, as an inpatient or through day services. Complexity could be around physical, psychological, social or spiritual issues, or a combination of these.
I hope that this edition of VIEW will stimulate further conversations and equip all of us to give a considered response when faced with the question I referred to above: Palliative care, does that mean they are dying?