Inspirational Stories

Lucy – A Hospice Nurse Talks about her Profession

Karen McMillan also interviewed Lucy for her wonderful book "Unbreakable Spirit". Lucy's story in Karen's book is incredibly touching. Thanks to the generosity of Tandem Press we are able to make Lucy's story available to you on our website.

Lucy in the sky with diamonds. That's my friend Lucy. Probably not what the Beatles were referring to, but in this case a beautiful jewel of a person, possibly an angel in disguise.

Lucy is a hospice nurse and spends her workdays caring for the dying. She doesn't think her profession is anything out of the ordinary and shrugs off my protestations that she must be a very special person to do her work. I know without a doubt that I couldn't do what she does and I wonder how many people could.

"I love my job", Lucy says. "Right when I started at the hospice I knew this was going to work. My boss told me that you care for people the way you would care for your own. And you treat your profession as a craft and how you use or wield that craft is up to you.

"All of a sudden I got to care for people in the way I thought they really should be cared for and dying became an opportunity to celebrate life and not just prepare for death. That was a first. I've never looked back. It was like coming home and I've never been disappointed."

Personality. That's the first impression one has of Lucy. She is a warm and caring person who exudes oodles of personality, her speech punctuated by frequent ripples of laughter. She brings a wealth of experience to her role as a community hospice nurse. She has worked in the nursing profession for more than 30 years, she has life experience galore and she has a plethora of tertiary qualifications. But more than anything she is good at her job because she has The Gift - that indefinable "it" that causes someone to be exceptional in their field.

We spend time talking about the overall philosophy of the hospice movement. Lucy tells me about three key principles.

"Firstly, the hospice neither prolongs nor hastens death. Secondly, we accept that death is a natural process. And you should be able to have the support to die in the place that you want. The third thing about the hospice is that it affirms life".

Affirms life? My father believed the hospice was just a place to go and die, but it is soon apparent that the hospice is all about life and living. The hospice helps dying people squeeze every last precious moment from their lives - and patients do this on their own terms.

Out and about in the community, going into patients' homes, the first thing Lucy does with a new patient is an assessment. She talks about he importance of being culturally sensitive and 'brokering' a deal with her patients.

"I am privileged that so many people were willing to share their personal and very private stories with me,’ says Karen, author of 'Unbreakable Spirit".

"When I first go into someone's home I chat about anything and everything but not much about the illness. The illness is a small part of a person'' life. Rather, I want to know who the person is, where they come from, how they got to where they are now, and who their family is. I want to know what they believe in. These are really important things. Every single person has their own cultural beliefs and values. The way I care for them has to fit in with that. It's very personal.

"The process can't be one-way, however. My care has to fit in with what I believe in, too. So I'll go into a person's home and I'll tell them about my family, about my nursing training and a bit about who I am and what I believe. By doing this they are more likely to give something as well because then they know me as a person and not just as a nurse".

Lucy likes to give her patients time to reflect on the issues she raises. She talks about their family, who their support people are, what makes them feel better. And she wants to know what they want to do with the time they have left.

"I will also ask how they thought they would die", says Lucy. "People often say they thought they would die in their sleep, but you die of disease or an accident. You don't die of sleep. It's the funniest thing".

People respond well to Lucy's questions. She has a natural way of drawing people out and is often called for advice on some subject or another. I know this because I've often asked her advice. I've also seen her in action when she is nursing. Again, she doesn't think there is anything special about this.

"We are all the same. All we want is to be loved. We want kindness and we want some compassion. That's basically what people want in life. So I look at people, doesn't matter what their colour, creed or race, and they want pretty much the same as me and that's a good place to start off with."

By the time a person with cancer has been diagnosed as being terminally ill, they will have seen a number of different health specialists.

"We talk about a 'circle of care'. Imagine one patient and their family in the middle of a circle and around the outside of this circle there is the hospice, there could be district nurses, the Cancer Society, the GP, and specialists from the hospital. A patient might also be going into hospital to have various tests. They might have a counsellor. There are a lot of people, and I see part of my role as keeping the circle of care closed by contacting these people and having an open relationship with them. Once a week I'll contact the Doctor. If it's a specialist I'll give them a ring occasionally. I always touch base so they know this circle of care is ongoing and so people don't fall through any gaps.

"There's no specific time frame for people coming onto our books. Some people come on very soon after being diagnosed, but other people don't want us there until later on in the piece. There are no hard and fast rules. Ideally, anybody with a life-threatening illness can come onto our books at any time. It's nice for the patient to get to know the person who is going to be their guide when they are dying. The better they know me the more likely they are to take my guidance. If before today they have never met me then it's hard. The patient can be in crisis and they'll be like, "What was your name again?"

The hospice offers a number of services. There are community hospice nurses, like Lucy, who provide care for terminally ill people in their own homes. There is also an in-patient unit, for those who need extra help in stabilising their medication, or because for some other reasons they aren't able to remain in their own homes. There are also counsellors and support groups. Counselling sessions are available for both patients and families.

"We try to put together a package that keeps everyone safe."

Every hospice offers slightly different services, but I remember, when my mother was dying of cancer, the local hospice in my old home town offered me counselling. While I didn't take up their offer, my nieces took part in a children's workshop where they drew pictures and made collages and talked about their nana with other children who had also lost a family member. It was a positive way for them to work through some of their sad feelings.

A big focus for hospice is education - in private hospitals, in rest homes and in universities. As well as nursing patients, Lucy is active in teaching.

"Twice a year I teach the undergraduates. I talk to them about palliative care. And because they are undergrads and don't have a huge amount of experience, I don't talk to them about symptom management. I talk instead about the concepts of palliative care. I teach them that it's not just the patient they are caring for. It's the patient, it's the family, it's the friends and it's the pets. It is the neighbours who live next door. You can't expect a person who is sick to not affect the environment around them. And neither can you expect to treat that person when you ignore everyone else. It just doesn't happen, because people live in communities. That's how the whole system works."

The main education a hospice provides, however, is teaching families to care for a loved one who is dying.

"What we teach these families to do are the things they never thought they would be capable of doing. The death of a loved one they experience can have a positive outcome in that they can look back and think…. "I never thought I could do that - but I didn't do a bad job. Isn't it good that my mum, my dad, or my child was able to die at home? If I hadn't been able to learn how to do these things it might have been different". That's what you want people to think of. That it was a positive experience - and it can be."

I understand what Lucy is saying from my own experiences. I never thought I'd be able to care for my dying mother, but with the help from hospice nurses, I was able to do it.

Lucy tells me many stories of patients who have touched her heart, but one in particular captures my interest. She recently helped care for a lovely man in his early fifties who was dying of cancer. His wife had died of leukaemia only the year before. There were also a son and a daughter, aged in their late twenties. The man was a proud individual and initially didn't want to talk about dying.

"Then he came into the hospice because he had pain that we hadn't been able to get sorted. I remember him taking my hand and he suddenly said, …What will happen to my children?"

Lucy asked him what the most important thing was for him at that moment. It was his daughter's wedding.

"I told him that we would get him there - and we did. I even went to the wedding. It was a huge build-up. He had a lot of pain that we didn't get on top of because he didn't want too many drugs. He wanted to keep clear-headed for the wedding. Three days after his daughter got married he took my hand again and said to me that it was time to go off to the hospice. He died four days later.

"Some people might say it wasn't a good death because he had pain. But I was his choice. And he did everything he could possible do to prepare his children for his dying. He died knowing that his children would be OK. His children were strong and steadfast. They were well-motivated children who loved their mum and dad but they would be able to move on.

"We gave them opportunities to do those little things with Dad, for Dad, before he died. Even though he has died and they have lost both of their parents, the positive experience, especially for the son, was that he did things he never thought he'd be able to do. He helped shower his father, helped dress him, and if Dad had an accident, he helped clean him up. He said he'd never want to do it again but he found it a very intimate, touching experience to do these things with his father. There was absolute trust. As for the daughter, she got married and cared for her father through all of that as well. It was good that it was not just the daughter doing it all on her own. The son and the daughter provided the care together and they looked after each other. That to me is a good death. Other people might say that it wasn't - but it was good for them. "I have a belief in a good death. And most people do die a good death."

The death of a young person is difficult for Lucy, however.

"It's a struggle because it's hard for them to let go of a life they are so connected with. Leaving their husband, their children - things they have just got. Elderly people have stepped back from all that because they've been there, done that, and so have greater time for reflection.

Family dynamics are another thing that can be difficult. It seems that a terminally ill person will bring out either the best or worst in a family. Lucy tells me stories that wouldn't be out of a place on a TV soap opera. Sometimes the needs of the person with cancer are forgotten in the midst of family in-fighting and dramatics as people try to manipulate events for their own purpose.

"If the family is manipulative then that probably won't change because someone is dying."

Death and dying have long been a subject that people are uncomfortable to discuss. Even though we all know for certain that we will die one day, many people would rather not think about it. Lucy and I explore the subject together anyway. Lucy has a unique, intimate understanding of death.

"What I've learnt is that everybody finds their place in the universe in the life that they've had and in their dying. And that could be a good place or it might be a really bad place. I believe that people who have not led good lives will not necessarily be very comfortable dying. They either cope with it by being stoical… "This is what I've done and so this is what is happening to me now", - or they don't cope with it, and they scream and yell and yahoo and wail and carry on, which is awful for the families. A person who has had a good life will probably have a good experience dying. It's how they measure. It's where they find their place. Whether the place they are now is a consequence of the good things they have done, or the not so good things."

Lucy also talks about the importance of dying people 'shaking their petals down'. She doesn't enjoy seeing the sadness that some people take with them, and believes they need to talk out their issues before they die.

"When you nurse people like that it's not blatantly obvious, however. There's just a sense that something hasn't been said and they are taking something with them. Some people just can't shake their peals down and leave it all behind and drop it in this life.

"For example, I nursed one lady who had been terribly abused. She and her husband weren't very good at communicating with each other. She'd had the chance to talk about it with her husband, but she couldn't, and he couldn't. And then it was too late. She took her pain with her. I would not like to take anything with me when I go. I'd like to shake my petals down, baby, and get rid of them.

As long as I've known Lucy, I've witnessed how being a hospice nurse impacts on her family and social life. She is often on call, and invariably she is phoned in the middle of a party, or a nice dinner out, or when she had just planned to do something for herself. She never complains. She just quietly slips away to tend to the needs of someone who is dying. Her family are used to this and carry on without her. She admits to never settling into social occasions.

"But that's all I've every known in nursing. All I've known is shift work and a life that doesn't move on a regular routine".

While the hospice looks after people who are terminally ill with a wide variety of illnesses, the majority of their patients are dying of cancer. As time has gone on, Lucy says she is seeing different cancers.

"Thirty years ago when I started nursing, many cancers weren't as common like melanoma or bone cancer. Some cancers that used to be quite rare I've seen a lot lately. I believe we live in an increasingly toxic world and the implications are that people are developing cancers at a younger age or cancers which used to be quite rare.

"I don't think you can fully protect yourself against cancer. On the whole I think the moment you are born you are vulnerable and you take your chances. Cancer encompasses many different diseases, anyway. And each person with cancer does it quite differently. Several people can have the same disease, but how they manifest that disease physically, emotionally and spiritually is unique to that person."

What does she think when people are told they have only a fixed period of time left to live? Like when my father was told by the specialists that he only had six months to live - and then he defied their predictions and lived for many years.

"I would never say that! You can't predict this sort of thing at all! Often people live longer than they were told they would. Patients often say…. "the doctor said I'd be dead in six months, but here I am still." There are very few people I know who are told they are dying of cancer who just turn their face to the wall and die. It doesn't happen that often. It is a human instinct to fight against it, against nature even. And patients do, they fight with everything they have got - some more than others.

"Some say, I'm not having any treatment at all - absolutely nothing. If I have pain, I'll have something for that, but nothing else. And they'll go on for a year, quite comfortably. Then you have the person who has the same disease and chooses to have chemotherapy, radiotherapy, they go to the clinics and they have alternative treatments. They may still die at the end of the year, but their experience of the disease is different because they have to deal with the side effects of the treatments. Unfortunately, some people start seeking alternative treatments when they have been diagnosed as being terminal and at that point it is too late. And a lot of people take a lot of things they don't know enough about. But they are fighting, so that is why they will do these things.

"However, I think people should try everything. Never give up hope. I mean medical science has failed you anyway, so why not try those things. It's about hope. Hope for a longer life. Hope for a good day. That's what it all comes down to. So if unconventional treatments help, just go for it."

As undisputed expert in symptom management, the hospice uses a mixture of conventional and alternative practices themselves.

Conventional medicine?

"We often use palliative radiotherapy for little secondary cancers where patients might get some pain - a little "hot spot" we call it - we use radiotherapy to treat these and it really helps.

Alternative treatments?

"We advise people on a lot of herbal things, like teas for example, which are much better than a tablet for your bowels. We use all kinds of recipes which Mum and Dad probably used.

"The only alternative treatments I disagree with are when alternative therapists say you must stop your morphine, or you must stop this or that. You need to complement therapies and treatments with what people are already having. There is a charter out for complementary therapists which includes a code of ethics and professional standards. I always say to people - check to make sure that the person they see is on that. That way they are not going to get some wacko."

Lucy reiterates how much she enjoys working as a hospice nurse - and she credits her working environment.

"I get looked after. Our peers make a point of looking after us first. They do the nurturing. The hospice has set the environment up for us to be cared for and so in return we will go and care for other people. It works like a dream. And that's why I became a hospice nurse. I will always do palliative care. But hospice palliative care, rather than palliative care in a hospital is my preference. Hospice is the environment that suits me and suits dying people. I think dying in hospital isn't the best place to die. Of course, the best place to die, if you can, is in your own home".

Personally, I am thankful that there is such a thing as the hospice and people can get support when they are dying. Thanks to the hospice, Mum was able to die with dignity and respect, without pain and suffering, and with a bridge of love taking her from this world to the next.

I am thankful for people like Lucy. She is a dynamic, energetic woman who makes an invaluable difference in her local community. A woman of warmth and compassion, understanding and wisdom - she is truly someone to aspire to. Lucy in the sky with diamonds. She is one of the diamonds of humanity.

Karen McMillan