According to the 'New England Journal of Medicine', those who receive palliative care live longer than those who do not. Yet, for many, the thought of going near a hospice is akin to waving the white flag, a surrender to one's illness and an invitation for death to come claim its prize.
This week WillFredd Theatre stages CARE at the Project Arts Centre, following a fictitious patient's journey from entry to exit at the real life St Francis Hospice in Raheny, with whom they collaborated with on this show.
"We want to demystify what people perceive a hospice to be," says director Sophie Motley. "People can view it as something that is dark, depressing and sad, a place purely of death. We want to show that it's not. It is about making the most out of life until you do die."
Dr Mary Baines, one of the early pioneers of the hospice movement, said something that stuck with the company. "She said that since the advancement of medicine, doctors no longer do the most important part of their job, which is to care for people," says Sarah-Jane Shiels, who co-founded WillFredd Theatre with Motley.
"We've spoken to people during our research for this show who've told us that since they started working in palliative care they have reconnected with what got them into medicine in the first place. It may not be glamourous, but they are actually helping patients, not spending 10 minutes with them and moving on to the next case."
"I liked the idea that you were focusing on the patients' concerns, rather than focusing on their diseases," says Dr Regina McQuillan, the palliative medicine consultant at St Francis. "Much of health care is focused on how to make a person better. Our focus is not on curing them, but helping with whatever it is that is directly affecting them."
There are 180 (mostly voluntary) staff at St Francis, treating up to 250 people per year on Dublin's northside. "We cover anyone who lives between the Liffey and the county border, but we also treat people whose main family are based north of the Liffey. There are also no hospices in Louth and Meath so we admit people from those areas as well."
Along with the patients who occupy the 19 beds in their inpatient unit, they have a community palliative care team who help people suffering from long-term progressive illnesses who remain at home.
"Most people prefer to stay in their own houses," says McQuillen. "So we help facilitate that, by passing on our expertise so people can adjust to the fact that they have a serious illness."
The three primary means of support are emotional, spiritual and aiding with the management of symptoms. "Our doctors and nurses help patients treat the symptoms that they themselves have noticed. So, say they are feeling nauseous or breathless, we ask, 'is this related to their disease or is there something else that is causing it that we can fix?'
"Sometimes an ache can just be the result of badly arranged pillows, while we can organise for them to come in and see our physio or occupational therapists as outpatients if they have consistent shortness of breath or any other specific palliative medicine problems.
"We also have chaplains who help people find meaning in their life when they are struggling with questions like 'why me?' and 'what's this all about?', while our social workers lend emotional support, helping patients with a variety of issues such as how to tell young children about what's going on."
"The bit about the person facing illness, we can't take that away. But there's lots we can do to make it better," says Niamh Finucane, senior social worker at St Francis. "Whether that's physical, psychological and/or a particular goal they want to achieve, we are raising issues of legacy and memory and we know that the impact of our work can be quite significant- not just for the patient, but for the family in the future.
"There might be a family event – a birthday or an anniversary they want to mark. Something they want to do together, a place they want to visit or conversations they want to have."
In between helping the patients up in the morning, bathing them and bringing them to their different therapies, he plays cards and bingo with them and chats about their lives.
"I help manage their symptoms in a non-pharmacological way. Getting them heat packs, giving them light massages on their hands and feet. If they still aren't comfortable I can fetch the nurse who can get them medication."
Over a hundred volunteers give a half-day a week commitment to provide the hospice with different services, creating a nice atmosphere to help people feel more at home during their time in the building.
Health & Living