Enabling people to live the life they choose to live is what hospice care is all about, writes BRIAN O'CONNELL
‘ALTHOUGH WE all have our own lives outside these walls, we’re not immune to getting upset at what happens in here,” says staff nurse Marie O’Shea. Opposite her, colleague Siobhán O’Mahony, who is a physiotherapy manager, expresses admiration for the terminally ill patients she works with: “I often find that a patient gives you something before they go, like a way of looking at something differently. I admire them so much. The patients are the heroes,” she says.
When it comes to young parents facing the last stages of their illness, Mahony says their resilience is incredible.
“The patients are sometimes coping with their own loss and upset about those they will leave behind. But even in those moments, they will sometimes joke with each other and tell their family and children it is going to be okay.”
Another colleague, specialist registrar Dr Mags Clifford, reflects on the regrets patients close to the end of their battle with illness sometimes have: “I never heard anyone say they should have put in more hours at the office.”
In terms of dealing with death, an older person may say things like “they’re all done for thank God”. Or maybe that their children “are very good to their mother”. So in other words they are saying it is okay for them to go and that their job is done and they can hand over now. You hear that sometimes. I don’t expect people to talk about death all the time. People find a way of dealing with it.”
Seated next to Clifford is director of nursing Sarah McCloskey who also says that in her experience, family takes priority in the final stages of illness: “One lady said when she was in her 30s she thought if she was ever in the last stages of a terminal illness, what mattered would have been wanting to travel more. But, she realises now all that matters is family when it comes to it.”
Clifford adds that it is not so much about looking back with remorse: “It is rare you hear someone express regret about what they did or didn’t do. I think when they look back over their lives they are keener to find meaning in past events rather than to express any regrets.”
We’re seated in a meeting room in the new St Patrick’s Hospital and Marymount Hospice near Ballincollig in Cork, and I’ve asked staff to talk to me about what it is like working on a daily basis with terminally ill patients. For generations of people, the word “hospice” carried with it overwhelmingly negative and morbid associations.
A hospice was a place where you were admitted but never discharged. It was where your condition got worse, not better, and once a medical professional recommended a patient for admittance, it was time for their family to prepare for the worst.
So to be perfectly honest, perhaps having absorbed some of those negative connotations, I didn’t expect to encounter life-affirming comments and sentiments from staff and patients during my time at St Patrick’s Hospital and Marymount. I never expected either to describe a hospice setting as bright and cheery.
Consultant in palliative medicine, Dr Tony O’Brien, who has helped develop what is now considered one of the most advanced hospice environments in Ireland, says that expectations and attitudes about hospice care have changed hugely in Ireland in recent years. Much of that is down to the changes in society as a whole.
“Go back 60 or 70 years and a high proportion of homes in this country didn’t have running water or indoor sanitation,” he says. “People went into hospital a decade or so ago and the understanding was they would be in a ward with 20 or 30 people. Now people are living in homes where often there are more bathrooms than people and the expectation is that you will have an en-suite and a comfortable room.”
In many respects, hospices are the ultimate contradiction in medical terms. While palliative care is one of the newest medical specialities, taking care of the very ill and dying is one of the oldest forms of medical practice. “We have been caring for people who are dying since time began,” says O’Brien.
“Sometimes if you talk to people on the street about hospice care, often they will say that it is care of the dying and the assumption is that people on hospice wards are dying and people not in a hospice are living. That is a ludicrous kind of theory.
“It fails to recognise the fact that primarily a hospice is about life and living and enabling people to live the life they choose to live.”
One of those being assisted through their illness at St Patrick’s Hospital and Marymount Hospice is 67-year-old Joseph Holbrook, who has been cared for not just by medical staff, but also his loyal family, including brother Chris, since suffering a stroke 15 years ago.
Joseph was diagnosed with cancer in recent months, and has been in the hospice for several weeks. He has his own room, and participates in a range of activities such as art therapy and music.
Chris, who communicates on Joseph’s behalf, says: “When we were younger, the hospice was known as the hospital for the incurables. Joseph loves it here. He is comfortable. The thing I notice with all the staff, from the director down, is the way they interact with patients.
“They rub Joseph’s face and it is more than just a doctor/patient relationship. They care and give patients the space they need when they need it.”
In his many years working in palliative care, O’Brien says he has learned that the things people feel are important in everyday life may not necessarily be the things that preoccupy them in their final days.
“If you ask people who are well and healthy what they would want to do were they to become seriously ill, they’ll often say they’ll want to travel or fulfil some lifelong ambition to visit the Taj Mahal or spend a weekend in Vegas or whatever,” says O’Brien.
“When you ask people who are sick the same question, generally the priorities have changed. What they mostly want to do is spend time with those closest to them. Sometimes people can have a quite radical review of their priorities in here. People can do more living in a number of days here than they did in the previous 30 or 40 years. It is usually concerned with relationships either with themselves, their spouse, children or their God.”
In terms of the specific regrets patients may have, O’Brien says terminal illness can bring much perspective. In his experience, it can even sometimes allow patients to live fuller lives. “In general, the things people fret about mostly, like the bald tyre and the septic tank charges, are the least important and the things people most neglect are the most important things. People have regrets they didn’t spend more time with family, they didn’t put enough time and effort into sustaining friendships with school or work mates.
“The only people who say they have no regrets are those who reconstruct their lives. Believe it or not, people will sometimes say they feel quite fortunate they got an illness, as it served as a real wake-up call in their lives.”
To find out more, or to donate, see stpatricksmarymount.ie
MY ONLY REGRETS ARE NOT SPENDING MORE TIME WITH THE KIDS
Fifty-two-year-old Chris Duncan, from Dublin: on illness, life and regrets:
“In here, everyone has their own single room, their own bed, wardrobe, two-piece suite and so you can have dignity and can get family in and around to help. I came in here about a month ago. I am terminally ill. I have bowel cancer and it has spread to my stomach. When I was first diagnosed, I was flabbergasted. I was given two months to live, and that was a year ago. Now, whether I’ll be here in another two or even six months, is another thing.
I got scared and very annoyed at the same time when I was told the news. I asked myself why did I not see this coming and then I got really scared about why this was happening to me.
Now I accept it. I am no holy Joe or anything like that, but this is what God has handed me, and that is that. It is going to happen and when it happens it happens. It could be next week or next month or I might get another six months out of it.
I have three children and a wife. My kids are aged 29, 27 and 26 and this has changed relations with my wife and kids. My wife and myself are divorced a long time and this has brought the whole family together.
I now have a grandson and I want to die because I don’t want to see him die first, if that makes sense.
He is only 15 months and he is running around and having fun and to see him run is better than to see something happening to him or him being hurt.
My family are all very upset and they know what is going to happen to me and that it is going to happen sooner rather that later. They are not looking forward to it but they are prepared for it, if you can prepare a person for death. The staff here are fabulous. I couldn’t say enough about them and this place. It has been a lifesaver for me.
What advice would I offer people from my experiences? Don’t smoke and don’t drink. I was too young when I started drinking. I also think all men should get regular health check-ups.
I expect to be going home at some stage but reckon I’ll be back and when I die, I’ll die here. The pressure of it is like when you are stretching out to grab someone’s hand and they are stretching out to hold onto yours. You don’t want to let go but eventually you have to. I am not afraid to die. I think it is something that God will get me through and my deceased mother and father. I believe they will be there as well.
My only regrets were not spending more time with the kids as I was away working. I should have got a job where I could have stayed nearer to the kids, but unfortunately I had to go where the money was.
“What I am proud of most when I look back is having the kids, raising them and preparing them to look after themselves. The irony is that the roles have changed now and they are the ones looking after me.