Our system does not provide for people to die in the dignity they deserve, Gabriel Byrne tells Kate Holmquist
'WHY DO we put up with it?" That's what Gabriel Byrne has asked himself, after spending time at the bedsides of five dying people at various times in crowded hospital wards in Dublin that took away the dignity and privacy of both the dying and their families.
"I found it quite upsetting. But the attitude was that this is an inevitable atmosphere that could not be changed."
He paraphrases George Orwell, who said that to understand the health of a nation, you have to look at its hospitals and social welfare systems.
"I watched somebody with locked-in syndrome dying in a ward that smelled of piss and cabbage and disinfectant. She was in a ward with five other people. She couldn't communicate, even though she sensed everything that was going on.
"It was extremely upsetting to us. You can only imagine what it was like for her, being helpless and unable to ask 'please turn down the TV'.
"The family, in these situations, is victimised too. If they need a place to talk privately and comfort one another, there is one room for an entire ward with three chairs and a low table. Grief and suffering are hard enough to deal with without essential things like light, privacy, audio-visual stimulation such as a view of nature and music, without grief counselling.
"Hospitals are depressing places and yet we don't protest. We relegate it to the unimportant and the inevitable. Maybe we think that 'dying is something that happens to other people, and not to me'.
"The conditions are not the fault of individual doctors and nurses, who do their best, but somebody has to take responsibility. Somebody has to raise awareness.
"It's not about the hospital services per se. There are so many complaints about the health services. It's a broader cultural question about where and how people die."
For people dying on wards, surrounded by other patients and other patients' visitors chatting away on mobile phones, there is no sense of individual privacy, apart from the curtain round the bed, he says. People who are dying and their families have important, confidential things to say to one another that should remain private, and yet being on a ward "forces people to make everything public - even something like writing a will - when this should be a private thing".
Dehumanising conditions strip the patient of all identity and value, making the patient no more than a "piece of meat on a slab".
"There's the total lack of privacy - I don't want the person in the next bed to know my business. There's the lack of facilities for visitors, the ugly, cheap aesthetic of the environment and, sometimes, the lack of a common language between the dying person and the nurses who are caring for them so that cultural references aren't understood."
Byrne questions why we put up with conditions in hospital that we wouldn't countenance in a relatively inexpensive hotel room. Walls are painted in colours we'd never choose for our own homes, the foam cushions around the bed and the curtains meant to provide scanty privacy are of the cheapest materials.
"When we are healthy, we expect certain facilities and services. If we go to a spa, we pay a fortune to be healed in some way. So when we are suffering and ill in hospital, why can't we have an environment that encourages healing and preserves dignity?
"When we need it the most, we are caught between knowing that we are dignified human beings and the reality that we're being treated like a piece of meat on a slab."
He thinks that first-class single-room accommodation in hospitals should be available to everyone, not just those who can afford it. "The Blackrock Clinic should be available to everybody."
The woman with locked-in syndrome, by whose bed he sat in a public ward, was stripped of her individuality, sometimes in small ways. There was one uncomfortable chair by the bed for all the visitors to share and no privacy, apart from curtains around the bed.
"Here was a woman who couldn't use her lipstick or her eyeshadow. I watched this woman have no access to the most basic facilities. In another bed in the room, there was a man caring for his wife who could not speak, and yet he was massaging her hands and doing her nails. This is the physical reality."
Around this time, Byrne saw the film, The Diving Bell and the Butterfly. What impressed him was the stark contrast between this cinematic depiction of locked-in syndrome and the reality on a Dublin hospital ward.
"In the ward where my friend was dying, there was no beautiful view out the window, no nurses with their breasts partially exposed, no gorgeous speech therapist, no children playing by the bedside, no scene of sitting in a chair in the ocean - no poetry. The fictional view isn't real. It's like we're in total shut-down about the reality of suffering."
The reality for Byrne's friend with locked-in syndrome was that her visitors - including Byrne - had to wear goggles and hospital galoshes to keep infection away from her.
"Yet there were other patients four beds down on the ward whose visitors wore no such infection-prevention garb. So here was this woman, in her last hours, needing to communicate, surrounded by people in 'space suits' who didn't seem to make sense.
"Taking dignity away is not the fault of individual nurses - nurses are overworked and, like teachers, they're doing the most important jobs while being paid the least," says Byrne.
"Taking away dignity has something to do with our winners-and-losers culture. If you're a winner, you get the best and if you're a loser, you don't.
"Yet death is the ultimate reality of life. We all lose everything. The acceptance of loss is what life is about.
"What you realise, when you've been in the presence of death, is that we are going to lose everything. You have to live life all the more because you know that, inevitably, you will lose everything."
Coming to terms with death, Byrne thinks, is a challenge we've failed at not just in Ireland, but also in the US, where he has seen friends die in undignified circumstances and knows of people dying at hospital doorsteps because they didn't have health insurance. "I'm not saying this is just about Dublin - it's everywhere."
Ireland could take the lead on this, he suggests.
A government that could get rid of smoking in public places and place a tax on plastic bags - both measures that caused a shift in attitudes - must surely be able to create hospitals where death is dignified, he says.
"I remember coming out of this hospital into beautiful sunlight, thinking 'do hospitals really have to be that depressing?' Then I saw photos of hospitals done by architects and designers who had a vision - privacy, a little balcony, flowers, comfortable chairs - and I thought 'if they can imagine such a place, why can't we all make it happen?'"
He thinks of the John Lennon song, Imagine, which was banned on some radio stations in the US.
"Imagine . . . Asking the dying person what they need. Imagine us believing that we have a right to tell it like it is and say what we need. Imagine light and privacy and a balcony overlooking a view of nature. Dare to imagine a place where a dying person has dignity. Why can't we demand a better health service as a right for all our taxes?"
Imagining is a radical position, which may be why the song was banned, Byrne thinks. He wants people to imagine how we want our hospitals to be and then dare to make it reality.
"If the people in power can't make this happen, then we need to get them out and get people in who can make it happen. Then maybe 10 years from now we'll have the hospitals we deserve."