Helping people live until they die

In our fortnightly series highlighting the contribution of individuals to our health service, we feature Geraldine Tracey, advanced nurse practitioner in palliative care with Our Lady's Hospice in Harolds Cross in Dublin, writes JUNE SHANNON

You matter because you are you, and you matter to the end of your life.

We will do all we can not only to help you die peacefully, but also to live until you die.”

THIS QUOTE from Dame Cicely Saunders (1918-2005), founder of the modern hospice movement, expresses what those working in palliative care in Ireland aspire to do every day of their working lives.

Whether in a person’s own home, a hospital or hospice, the people some of us will inevitably entrust our last moments to, do an incredibly special job, and all deserve to be celebrated.

One such person is Geraldine Tracey, advanced nurse practitioner in palliative care with Our Lady’s Hospice in Harold’s Cross in Dublin.

Our Lady’s Hospice and care services comprises two facilities at Harold’s Cross and Blackrock, and provides services from rehabilitation to end-of-life care across inpatient units, day hospices and the community.

Tracey has worked in Harold’s Cross for 16 years, and has recently established the hospice’s first outpatient clinic, which provides patients with specialist multidisciplinary, palliative care input on an outpatient basis.

Tracey’s patients range in age from 20-89, and in essence the outpatient clinic enables them to live as normal a life as possible at home, or to keep “their homes home until absolutely necessary”, she says.

If someone is doing well they might attend the clinic once every three weeks for a range of issues including the management of pain or nausea or psychosocial support.

However, if they are not doing well and it is becoming burdensome to attend, Tracey can arrange for them to be seen by the hospice’s home care team. If they need inpatient care, she can organise that as well.

According to the 2001 report of the National Advisory Committee on Palliative care, “palliative care is the continuing active total care of patients and their families, at a time when the medical expectation is no longer cure. Palliative care responds to physical, psychological, social and spiritual needs, and extends to support in bereavement. The goal of palliative care is the highest possible quality of life for both.”

Explaining the reasons behind her career choice, Tracey says: “I thought medicine and healthcare was very much focused on illnesses and parts of a person. Palliative care was focused on the whole person and how that person not only felt physically, but the psychosocial and spiritual elements. That is what made sense to me. I thought that was how I would like to be looked after.

“The aim is to achieve the greatest quality of life for that person and their family,” she adds.

It is this philosophy of holistic care which has guided Tracey’s entire career to date and it is something she believes should be available to all patients, not just those in palliative care.

Despite the many misconceptions, palliative care is not all about death and dying. In fact, it is about so much more. It is about symptom management, pain control and psychological and spiritual support.

Palliative care professionals like Tracey are also there for people and their families at the end of life.

“You are there at a time in their lives where they share an awful lot with you, so you are quite privileged to support somebody on this journey.”

Preparing somebody to die is therefore an important part of Tracey’s role. This, she explains, is very much guided by the willingness of the individual patient to “go there”, and supporting and guiding them in that. It can include very practical issues such as planning a funeral to discussing the person’s preferred options around the time of their death.

Tracey paid tribute to her colleagues in the hospice as well as the many families who she says provide “a huge amount of care” at home for their loved ones.

While every case is different, some of the common themes that Tracey supports patients through include fear of the unknown and she says that for younger patients leaving family and children behind is extremely difficult.

“People don’t like to lose control, none of us do. So it is about knowing that they can feel safe and . . . be involved in their care and that we will be listening to them.”

Tracey believes that Ireland has increasingly become a “death-denying” society, one that is focused on staying “as young as possible, as beautiful as possible, for as long as possible”.

“We focus on curative treatments and I think we forget that death is part of life,” she says.

Despite the huge strides made by medicine over the past 50 years, Tracey says it is important to understand that it too has its limitations.

According to Tracey, “making people better doesn’t have to be cure . . . it is about improving quality of life, comfort . . . to a certain extent it is about affirming life”.

A 2006 Baseline Study on the Provision of Hospice/Specialist Palliative Care Services in Ireland, which was carried out by the Irish Hospice Foundation with the support of the HSE and Atlantic Philanthropies, found there was “wide regional variances in the provision of hospice/specialist palliative care” and that “patient and family access to comprehensive services largely depends on the region of the country in which the patient resides”.

While there have been some improvements since then, Tracey believes that equity of access is still an issue for many patients and their families today.

She also strongly believes that access to palliative care is a human right.

“I think it would be very nice when people heard the words palliative care that they saw it as a great support, something that is offered that is positive, at a time that is very difficult,” she says.