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Shared experience

30 November, 1999

Margaret Winters shares her experience as a palliative care nurse in Dublin.

I became interested in hospice and palliative care when I was working on a busy medical ward in 1995.I was caring for patients who were acutely ill and those who were dying, and supporting their families. There was not enough time or privacy to give the care I wanted.

I completed a hospice course in Belfast and this led to my working in the hospice in Jersey in the Channel Islands. I could not have asked for a better place to nurture and develop my knowledge and skills. I then studied for my Diploma in Palliative Care with the Royal Marsden Hospital in London.

I returned home to Ireland and began work at St. Francis Hospice in 1998. I have worked in palliative care for ten years and have spent time in a Hospice In-Patient Unit, Home Care Team and I am currently working in St. Francis Hospice Day Care in Raheny in Dublin. I really enjoy my job and no two days are ever the same.

Holistic approach
Palliative Care is the control of symptoms when a cure is no longer possible. There is no mystery to palliative care; it is an approach to care which looks at the person as a whole, not just a diagnosis. This approach involves the patient, family, friends and community. The psycho-social and spiritual needs are given as much attention as physical symptoms.

The approach used in palliative care is one of the reasons why I became a nurse. It is giving time and the best of care and attention to the patient and his or her family. This approach to care should be the norm for any patient within our health care system.

I meet people when they are ill but this time is only a small part of who they are. Hospice Day Care can be life-affirming. It is about knowing that the patient matters; they are not defined by their illness. It’s about trying to focus on maintaining some sort of hope and finding meaning or trying to make sense of what is happening.

Every person has his or her own story, own place and role within the family and community. A terminal illness affects not only the patient but his or her family, friends and colleagues; it is like a heavy stone dropped unexpectedly into a still pond: the ripples can be far reaching.

Working in a hospice is a very ‘real’ experience: you get to know people very well and this may happen very quickly. You only get one chance to try and get things right for the person and family; there is no opportunity for a rerun.

Part of my role involves supporting families and friends in providing care, guiding them through their journey whether it is emotional, spiritual or bereavement support. I cannot fix the situation, but perhaps I can make the journey a little less difficult through explanation, support or negotiating the health system.

Priveleged position
People are on a journey and the future may be uncertain; I cannot find a cure and I don’t have the answer as to why this person has a terminal illness. The longer I work in hospice care, the more I realize that there are no answers or that there are not the answers people want.

As a nurse, I like to be organized, have things sorted out and problems solved, but in my work the hardest thing can often be to do nothing, to stay with people and their distress and to be with them emotionally or spiritually. I sometimes feel I am holding a person’s heart in my hands: their hopes, dreams, fears and uncertainties. It is a very privileged position to be in when someone shares this experience with you.

Conversation stopper
I am able to continue in this job because of the support I receive from family, colleagues and friends. Some days can be hard, and it is most definitely a team effort: we know we need to support each other. I believe I need to have a sense of balance, self-awareness and common sense. An appropriate sense of humour definitely helps!

I really love what I do even if my job is a guaranteed conversation stopper when out socially and someone asks me what do I do. Knowing I can sometimes make a difference to a person to his or her family and their experience and memory of a terminal illness is a huge reward and this is my motivation to continue in palliative care. A quote by Dame Cecily Saunders illustrates for me the essence of Palliative Care.

‘You matter because you are you. You matter to the last moment of your life and we will do all we can not only to help you die peacefully but to live until you die….’

This article first appeared in The Messenger (March 2007), a publication of the Irish Jesuits.