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."
She has witnessed a lot of hurt and bitterness in the midst of death and dying. "Some things can not be resolved in this life," she says. "But we try and mitigate against the long lasting effects of that. Some families have such depth of conflict and are very split, but it's about not going with one side. It's about hearing everyone's voice and recognising that there are different perspectives, rather than a right or wrong."
"It is a sad building some of the time," admits Joe Mooney, a care assistant who has worked at St Francis for the past seven years. "But most of the time it is filled with laughter and joyfulness. We have an awful lot of fun with the patients. We tell a lot of jokes, so it's a happy building with a sad aspect."
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.
"We have volunteers who provide music," says Regina, "and who provide art classes. Some people bring their dogs up for the patients to pet, others cut hair and we have a few people who collect them in their cars and bring them from their homes to day care."
Yet many people are still averse to palliative care when it is prescribed for them.
"They think it means that they are immanently dying or that they are going to have a lot of pain or that they are not going to have any more active treatment," says McQuillan. "The first thing you do with patients like this is to find out what they understand about palliative care and why it is they are frightened."
The issues might have nothing to do with palliative care itself. "The first day can be emotional," says Niamh, "as the significance of actually being here – of arriving in the building, can be huge. Some people are here for end-of-life care. They have said goodbye to their home for the very last time and that can weigh heavily upon them."
"It's normal to be sad," adds McQuillan, noting that positive thinking does not make you live any longer. "You have to make sure they know that it is OK to be sad about being so sick, but you also have to figure out if it's normal sadness or depression and, if it's the latter, do they need more formal input in the form of medication or counselling?"
There is a confidential counselling service available for staff at the hospice for the times when things get too much, although Joe doesn't think it gets used that often. "I find parents who are dying and who have young children to be the most difficult cases to deal with," he says. "They know they are not going to be around for the 18th or the 21st, the first dance or the debs. The major thing is to keep talking about how you feel, not hold it in or push it to the back of your head. We (the staff) take each other off for a chat in the canteen."
While patients themselves can sometimes play down their illness, it is not unusual for family members to ask for its severity be kept secret. What happens if the wants of the patient and their family collide?
"If you have a patient and a family with different agendas," says McQuillan, "you have to remember that you are there to treat the patient. Normally if a family are saying 'don't tell Mammy', you have to figure out why it is that they don't want to tell her, what do they think might happen and how can you manage that."
"But nine times out of 10 they already know," Joe says, "and they are only putting on a brave face."
The final part of their care isn't with the patient themselves, but with their family, through the bereavement service. "It's about normalising grief," says McQuillen. "You're not counselled to be made feel different. Different members of family will grieve in different ways and the fact you and your sister and father are grieving differently does not mean that either of you are right or wrong."
"It's a huge myth that when you come to a hospice you die and that's it," concludes Joe. "We can have patients for months if not years sometimes, just trying to fill their days out with as much life and activity as they can."
- 2014 sees St Francis Hospice celebrate its silver anniversary with the opening of 24 new beds at the hospice's second site in Blanchardstown. If you would like further information about volunteering at St Francis Hospice, please contact Brenda Farrelly, co-ordinator of volunteer services on (01) 8327535 or by email: firstname.lastname@example.org.
- WillFredd Theatre presents CARE at the Project Arts Centre, until March 1, 2014, 8.15pm. Matinee March 1, 3pm; tickets €15/€12.