A homecare team in the Midlands and the patients they attend offer a profound insight into palliative care
When I came in John was sitting on a tired couch by the wall, his body bent over his knees and he was shaking. Clare Baxter had her arms around him. The room was sparse with a bed under the window opposite. Baxter whispered into his ear and enveloped him for some time in a secure hug, before leaving the room.
“Well,” I said, “you’re very good to see me. I know you’re not well and I hope I’m not disturbing you.”
“Not at all,” he wheezed. “You’re welcome. Sit down.”
A small fire burned in the grate, competing with the draught from under the constantly opening and closing doors. There were children and grandchildren around, bicycles in the hall, or thrown in the front garden.
“I want to give up,” he said. “I want to die off in my sleep and I don’t want any more treatment. Everybody is hoping that I will put up a fight. Don’t give up, they say. They don’t know what they are talking about.
“Clare Baxter knows what she’s talking about. She knows when I am down. She accepts me totally.”
Clare Baxter is one of the palliative homecare team in Mullingar. There is no inpatient hospice in the Midlands, the southeast or the northeast, even though the numbers requiring hospice services nationally will increase, because of a growing and ageing population and life-prolonging treatments.
It is the unmatched hospice homecare teams – the angels of life – who keep heart and hope alive here.
“She knows what she’s talking about. She got everything for me,” assures John, “and she is always here.”
Acceptance
John is a fine-looking man of stocky build, with a head of curvy hair, swept back from his forehead. I am silent. I sit nearer him. I am so frightened by the reality that John is facing, and I have few resources to handle it.
I stare at the mountains of medication on the small table. I am startled by his acceptance and he must see it on my face, because he reaches out and puts his arms around me.
“You have to die, Marie Louise. You cannot get out of this world alive. I want to die in my own house at the fire, with my family and my neighbours around.
“The palliative homecare team are going to help me to do that.”
I am starting to see what palliative care is all about.
Later that day, sitting at a meeting at the South Westmeath Day Hospice unit in Athlone, I am privileged to be around the Midland homecare team’s discussion of patients, their living lives, and their future.
“Of all the cares in the world,” clinical nurse manager Margaret Wilkie says, “palliative care is the one that is truly patient focused and needs focused.
“Individual needs and the right care is prioritised when living with a life-threatening disease.
“Helping people to live well and enjoy a quality of life, the support of family and friends, and to learn about acceptance and comfort, despite what they have. We have no hospice in the Midlands but our homecare teams are very developed.”
Perceptive thinker
She is certainly right about that. Michael Cushen is the only palliative medicine consultant for Laois, Offaly, Westmeath and Longford. He is young, determined and a highly motivated, perceptive thinker and speaker.
“Patients are our priority, and their needs come first,” he says. “We are constantly pushing for resources and education, and we try to do what we do within very limited resources.
“We are surrounded by newly titled ‘centres of excellence’. But the greatest ‘centres of excellence’ are people’s own homes, where they should be able to die with no pain, spiritual, emotional or physical and, most importantly, with no fear.”
What strikes me at this meeting is the team’s attention to the fragility and the strength of the human condition.
I have had a fear of death since I was a child. I am in one sense more terrified than ever, and yet more uplifted by what I am learning.
“There is no point in worrying about death,” Paul tells me when I meet him. “When I heard that I had cancer it stopped me enjoying my life. I was terrified. Palliative care changed that. It gave me comfort, took the pain away, gave me hope back, and gave it to my family.”
According to Margaret Wilkie, “Paul is a great example.
“He comes in and out of the system as his needs dictate. Patients don’t have any difficulty about dying. They just don’t want to die outside care. Patients can guide their own palliative care. No matter what issues come to the surface, we deal with the person we have in front of us. We do not judge.”
Nicky McCormack and Iris Murray are specialist palliative care nurses who work in the four-bed day unit in Athlone.
“Patients have taught me much about my life,” Murray tells me.
“They have taught me about family, time, life balance, and that you must look after yourself. The recession might have done us a favour, and brought us back to our families and to our health.
“My sister died from cancer at 30, and it had a huge impact on me. It is the reason I do this job.”
I ask McCormack is it makes her sad to be around the terminal nature of her job.
“Yes, there are days you are very sad. Palliative care does not mean that life is over. It is quite the opposite.
“One of the most important aspects of our lives is how we die.
“Palliative care is about living well and being happy with what you have. A quality of life that is about hope. Our aim is that patients continue their lives as they know them. There is nothing to fear about it,” McCormack assures me.
Fear of death
But I am afraid, and later when I am talking to Margaret and Dolores, both in receipt of palliative care from the homecare team, I cannot help asking them about the fear.
“What is there to be afraid of?” asks Margaret. “The team took all my fear away. It is my family that I want to keep from the fear, not myself. The nurses are my best friends. I can talk to them about anything, especially since death is very lonely.”
Dolores says, “I didn’t know how to react to my cancer. I had no language for it. I put myself in the hands of the team. No pain. No suffering. They understand all the medication including anti-depressants which are great.
“It is enough to have the disease without having to suffer the anxiety and the stress. We all have health, but none of us knows what is ahead.”
And that, of course, is the main point. None of us knows what lies ahead.
On my way home I call into Patrick (now deceased). “The homecare teams are fabulous,” he says, putting another briquette on the fire. “I don’t know what tablets I’m taking. They do. Dying doesn’t worry me. They take the worry away. Anyway I won’t know I’m dead. Neither will you, Marie Louise.”
It is good advice.
I leave with such an insight into the profound and generous world of what these homecare teams do as a job. They don’t see it that way. They told me so. They are professionals with an interest, a passion and a love for their work.
They know they have one chance to get it right. Get it right and it will always be remembered. Get it wrong and it will never be forgotten.
But my greatest lesson is the one learned from the dignified John (now deceased) when he sat with his aching arms wrapped around my personal startled fear, on his couch, by his fireplace, in his small house, on a treeless estate of a midlands town.
The names of patients have been changed
MarieLouise.ODonnell@Oireachtas.ie
