You may call me an oddball, writes SINEAD HOGAN, but I’ve always found stories of death compelling - the emotional and spiritual accounts, not how many died in such-and-such a disaster, or what the crazyman did with his wife’s body after. I want to know more about death insofar as it’ll shed light on life and how precious each breath is. A mention of a book in a newspaper a couple of months ago got me thinking. ‘The Top Five Regrets of the Dying’ is by an Australian former palliative care nurse called Bronnie Ware. The author summarises her findings on her website in the following ‘top five’: I wish I’d had the courage to live a life true to myself, not the life others expected of me; I wish I didn’t work so hard; I wish I’d had the courage to express my feelings; I wish I had stayed in touch with my friends; and I wish that I had let myself be happier. A few weeks later I’m in the Hotel Kilmore meeting Moya Carroll, team leader of Specialist Palliative Care Team Cavan/Monaghan.
Moya shows a strong and pure respect for life, for people and for people’s feelings. She speaks carefully without overstating or understating. She doesn’t presume to know things about other people or how they feel about whatever situation they’re in. Nor does she oversimplify or pretend to have all the answers.
She knows that saying our farewells to this life and our loved ones is as massive as it gets, an overwhelming loss and sadness for the one departing and those being left behind.
The interview is guided from the outset by her sensitivity to this.
She tells me that what we once called ‘terminal’ is now called a ‘life-limiting’ illness, and palliative care is all about living not dying.
Patients are referred to the palliative care team when curative treatment for their illness or condition is no longer possible, but treatment continues, and life may often go on for many years.
‘Palliative care accompanies other specialities to enable the patient to continue living for as long as possible, as comfortably as possible, with the best quality of life possible,’ explains Moya.
She refers to statistics showing that people who have been diagnosed with a life-limiting illness outlive a large percentage of the population who haven’t, but die unexpectedly before them.
‘We would have patients on our books for years. Then we also have patients on our books for days,’ she says gently.
But no doubt the clock ticks more loudly for someone who has been told they have an illness that will take them.
It’s at this point, when a patient and his or her loved ones have been given the shock of a lifetime, that Moya and team come in.
And at a time like this, what can anyone do?
‘Level one palliative care is about caring, that’s really all it is, but it’s about caring in the minute detail,’ says Moya, explaining that you may have this, that and the other diagnosis, but if, today, it’s an itchy eye that’s annoying your happiness, then that’s what the nurses seek to relieve.
‘It’s getting into the deep end of “how are you?” - that simple question, but meaning it.
‘Level two palliative care is where you need to have a little more knowledge about symptom control. Level three is where you have all the medications and all the different modalities of treatment.’
With a seasoned sensitivity, Moya talks of ‘holding the space’ for patients and loved ones as they come to terms with their diagnosis.
‘We have very much a listening role.
That’s all about creating a space for them, and allowing them to be.’
‘It reminds me of a drawstring bag. You pull the string a little bit and allow them look in a little bit at what’s happening in their lives... Then open another little bit the next day and see can they deal with that little bit, until the bag is fully opened.’
Naturally enough this is often a time when help is needed to calm the initial shock.
“In situations where there are huge anxieties we would use medications just to bring them down - not to suppress, just to bring them down from the ceiling into the chair. If they’re overwhelmed, the emotion takes over and then they can’t cope. That’s not fair to them or their families, so you try to bring that to a level where you can deal with it,’ says Moya.
Ultimately the goal is some level of acceptance, but after two to three decades in the job, Moya is as aware as Buddha himself that acceptance (whether of impending death, or any crisis) is aspirational and a life’s work.
“People get there, and then they come back, then get there again, then back again. I don’t know if there is such a thing as saying ‘I totally accept everything that’s happening to me and I’m ok with this’,” she says. To this interviewer, it seems like the kindest and gentlest possible way of relieving patients and family of any pressure to deal with their situation any better than they can.
It’s often this pressure that you should be handling your struggle better than you are, that you are somehow inadequate in how you are reacting to it, or that the feelings you have in response to it are unacceptable, that makes your suffering really unbearable. Moya gives an example:
“People are afraid to express their feelings in front of a loved one. The person who is sick feels guilty that they’re hurting their loved one; the person who is well doesn’t want to ask questions in front of their loved one in case they upset or annoy them or make them cry. People don’t want to cry in front of each other.’
Yet, crying together can be the most honest and best therapy.
Says Moya: “It’s like a huge waterfall of emotions when people can just let go and it’s all out in the open. When people can just allow that to happen - the family allows the sick person to talk and the sick person can allow the family to talk - you have this big explosion of emotions. It’s very healing. It’s like running cold, clean water on a wound.”
Part of nature
Society has us believing that death should be preventable, but whether we have a known illness hanging over us or not, we’re delusional in thinking that man’s plans are stronger than nature.
“Death has become so medicalised that it’s almost like when somebody dies, it’s failure, medicine has failed them,” says Moya. “Sure, we’re meant to die.”
As a nature-lover, she speaks of the life cycles of nature. Most of us learn at some stage of our lives, that the Earth has a big plan, which our small minds don’t comprehend; our choice is to resist or surrender.
“We’re all part of the great big plan that is life. Every season begins and ends, every flower begins and ends, every human begins and ends. We’re no different to any other part of nature. We’re part of it,’ says Moya.
A lesson in acceptance came to her in her personal life.
She recalls bringing her mother to her father’s grave after he died.
“Ah dad, I’ll be there with you very soon,” said Moya’s mum.
“Does that worry you?” Moya asked her mum.
“Good God, sure it’s the most natural thing in the world. That’s what I was born for,” was the reply.
Moya’s mum wasn’t sick at the time, although it wasn’t long till her time came to join her husband.
It seems that during times of crisis spirituality and religion can become more important, and I ask Moya if she finds this. First, she distinguishes between religion and spirituality, defining the latter as a search for meaning, a ‘why’.
“I can’t remember who it was who said that a person with a ‘why’ can face an ‘any how’,” says Moya.
“There definitely is research to say that people who have a religion probably do better because they have something to hold onto.
“People have said to me “I don’t believe in a god but I’m not foolish enough to think that I am the be all and end all. I am part of something bigger than me. Therefore, maybe I have this disease for a reason, I don’t know.”
She adds that a German consultant on the team believes it takes much less medication to symptom-control Irish patients than it does Germans because of our Celtic culture and spirituality.
“At a wake all the neighbours and friends come along and ask what happened, and the family member tells the story so often about how this person died and what it was like, until such a time as the family member comes to the realisation that it actually has happened,” explains Moya.
“People are carried, literally carried, through the days when they die, but for those two to three days in Ireland the family is carried by the others coming and going, the tea and talking. You couldn’t buy it; it’s so therapeutic. People pay thousands for counselling, for that type of holding, support, carrying, listening.”
But while on the one hand the palliative care staff help you to get your head around your diagnosis, the focus is very much on enabling you to milk life for as long as the breaths keep being given.
Moya explains that it’s a gradual process of loss.
“I think all of us are houses, and we’re made of bricks, each brick representing some one part of us. The foundations would probably be whether you’re a mother or father, husband, wife, daughter, son. Other bricks are your work, your friends, your colleagues, your place in society, religion, beliefs, values. ‘They’re all your bricks. If you get sick you’re no longer able to be that house. A brick falls, another brick falls, then another... And it’s trying to put the bricks back up for people, but you can’t put them all back,” she says.
“And the world gets smaller as we become sicker. It becomes maybe the house and the hospital, then when you’re no longer fit to go the hospital, if you want to be at home, it becomes the house and garden, then the house, then maybe it becomes the sitting room and the bedroom, then maybe it becomes the bedroom. It shrinks.
“People accept that. I think a tiredness prevents people from wanting… there’s no need for the outside world.’
Drugs are used for pain control so that the important things in life can shine through.
“If you’re totally focused on the pain you can’t do any kind of work, your family can’t communicate with you or you with them… you’re cranky. Pain control is important for comfort and to allow the space to be filled with family, friends, good times, films, journeys, sleeping, whatever.”
We all know about goals and how the same ones emerge and re-emerge in life only to be relegated back to the ‘some fine day’ section in our minds. When you’re on a deadline, the content might or might not change, but goals will surely become more essential and urgent.
“People set themselves little goals, and goals work. It might be what we would consider a very small goal like sitting up and watching the match on the telly,” says Moya.
“‘When they’re less sick, a huge thing is ‘I’d love to see my son or daughter getting married’. And you do see people struggle and live to see it. That does happen, it’s not pie in the sky like a lot of things. When the event is over, it’s like a big letting out of breath and they’re reconciled more with leaving… It’s a huge, huge sadness for people leaving their loved ones,” she says.
The things in life that we’ve stuffed away into a corner of ourselves, but which really matters to us, come up when we know we’re on our way out of this life.
Moya has learnt that ‘keeping the floor swept’ as we go along, i.e. dealing with our emotional stuff, whatever it is for us, will pave the way for an easier life – and death.
“One of the things that always amazes me is when people are diagnosed with a life-limiting illness and as the illness progresses and they become weaker, the losses in their lives become huge. So many women remember the miscarriage that was not recognised. It’s not an unresolved issue - nobody could resolve it - but it’s a pain that wasn’t recognised. You would see 60 or 70 years later they talk about the child that they lost.
It comes up to the surface like a volcano erupting, so do unresolved things and all the sadness.
“Sometimes when someone gets to the point of death, it’s ‘why can’t they die?’
“And we go over whether there’s anyone away, lost, missing, anything done that needs to be undone, or anything that needs to be unsaid.
“It’s amazing how we use a wide variety of medications in a wide span of doses for patients, but if someone is very troubled spiritually - the why - there is no pill.’
She says the team asked themselves during a discussion before this interview if and why ‘dying well’ is important.
“Everybody would have a different answer. It’s important for them, it’s important for us that we achieved getting that for this person and it’s important for the family because they remember. How somebody dies remains in the mind of the people who live on.
“Is it important for the person who has died, in the next life? We don’t know…
“But,” she adds thoughtfully, ‘maybe sometimes it’s not achievable, so that’s going back the whole circle to us having to accept.’
Moya tells me that her work hasn’t changed her attitude to death, but it has affected her attitude to life.
“I think so, in not frying the small fish. Also, life is very important, now is very important. It’s about the quality of your presence as you do the small things. We can’t get back yesterday and we can’t reach tomorrow. I know we all say that but it’s very difficult, for all of us, to live now. We try, but it’s difficult to decide ‘I’m going to be quite happy with where I am now’.
Palliative care sounds like it would be an addition to any of us, even long before there’s a deathbed in the scene.
I ask if it’s an aspect of our healthcare system that is holistic, and Moya affirms that, by necessity, it is so.
“When I go to an orthopaedic surgeon about my hip I want the surgeon to know his or her job and fix my hip so I can walk again in a month or whatever. Likewise for cardiac, neurosurgeons and so on,” she says.
So, when you reach the stage of palliative care, there isn’t one particular problem to resolve? Moya sums up in agreement.
LESSONS FOR LIFE
We could all do with some palliative-style care in our lives, and we can all give it.
“It’s when you sit with somebody at the side of the bed, or in the chair in their own kitchen or wherever it is and you say to that person, ‘how are you today?’ and you mean it. You’re not looking at your watch and thinking ‘oh my God I’ve to get somewhere at half past 12’. You ‘open a space’ as it were and you wait for them to fill this space with how it is that they’re feeling - whether it’s good, bad, angry, sad, whatever it is. That’s really level one palliative care and we can all deliver it, all of us; it’s just being.
Everybody deserves it and everybody can deliver it.
“People will say there isn’t time... If I am present to you for five minutes, that’s extremely important.”
Work out your priorities and strive to live accordingly.
Moya refers to a popular fable about priorities, where golf balls represent what matters to you, so you put them in the jar first or else it fills up with pebbles or sand, which represent lesser or unimportant stuff.
“I suppose palliative care would teach you that the ‘golf balls in the jar’ are important - the children, family, home, your colleagues and so on. You can let go of the other things. They’re not really worth it.
“There really is very little time to fry small fish, because it takes too much time to prepare them for nothing.
The small things in life are important, it’s not that they aren’t, it’s insignificant things.”
Don’t leave important issues unresolved especially in relationships.
‘There’s so much hurt and anger in families, all of our families. A lot would have started out of something terribly trivial, a comment, a visit that wasn’t made, something that wasn’t done. And then it grows and festers. Then someone is diagnosed with an illness and you’re trying to repair and make up for lost ground. They’re running and we’re running with them to try and see if it’s possible to heal a rift. Because once somebody has died, the time is gone; you can’t get it back and say, “I’m sorry”. You carry it with you and you pass it to the next generation.
“We need to resolve issues because no amount of medication will calm a frightened mind or a mind that feels there’s work undone. Keep the floor swept as you go along.”
Life - now - is important.
“Every last hour or minute is important, because there’s work to be done, not necessarily physical work, it might be work with family, sitting with someone reading or having time with them, but every single, solitary minute of life is important, to the last minute.”
We all have to let go.
Are you someone who holds on to the annoyance of missing a bus for hours after it’s gone?
“Every day we go through losses – an earring, loss of self esteem, broken relationships, falling out with a family member, losing a job.
“We can practice letting go as we go through life. Dealing with small losses helps us to deal with our big losses.”
Make your contribution.
“I would think if I died tomorrow, what have I left, would my presence in the world have made any difference?
“I think for me, I would like to say it was worth my while being born and living, that the earth is a little bit better because I was around.
“If I’ve made a difference to my family, that’s a big thing, and if I’ve made a difference to my patients that’s great and my colleagues, better again.
“I would like to think that when I go, not necessarily that I’ll be remembered by anyone other than my family, but it will have been worth the earth’s while to have had me here, even if I’m only for compost.”
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