Stuparich, J. (ed), (1992) Euthanasia, Palliative and Hospice Care and the Terminally Ill. A seminar held at John XXIII College, Australian National University, Canberra, 26 September 1992. Sponsored by the Australian Federation of Right to Life Associations. ACT Right to Life Association, Canberra, Australia. pp17-29.
“Where do you work?” “Palliative Care.” “What’s That?” And when I tell them, “Isn’t it depressing!” “No”.
It’s my answers to these questions, and more, I wish to discuss with you this morning.
I want to talk with you about:
- what palliative care is
- the palliative care program of excellence here in the ACT, and
- how this program works
I am confident that following our discussion, you will be even more convinced that palliative care really is the way to go.
I went to a funeral in Goulburn on Wednesday with two of my colleagues. I did invite the mother of a nineteen year old girl I nursed to come and speak with you this morning, but her daughter’s death is still very fresh with her, although it is two years now, and she thought she couldn’t speak to a group and so I am going to share with you, instead, a letter from George, who is the son in law of Mary Chin, whose funeral we went to. Mary Chin, the daughter of a general, came out to Australia, aged 20 years. She couldn’t return to China because of the Mao Tse Tung regime, so she married and she had six children. She worked outside of Goulburn as a market gardener with her husband. They went through drought and the following year they were burnt out, so she really had a lot of difficulties in her life. She was a formidable lady. Her husband died 16 years after she was married and she had nursed him with a stroke for six years by that time. Mary was much loved and we loved her too.
We have that advantage of meeting people when they have lost their roles and they are no longer High Court judges, or cleaners, or nurses, or whatever they might have been. We are more in touch with who the person is and that is who we meet. We like them to meet us as whole people with our sense of humour or whatever we bring. Mary certainly had a strong will and a determination. She decided to go back to Goulburn, where she died. On the trip back the ambulance men stopped at her home and carried her in to say goodbye, which I thought was a beautiful thing for them to do. We cared for Mary Chin in George and Jenny’s home, and by reading this letter I am sharing someone else’s comments on palliative care.
“I am attempting to express what I am confident are not just my sentiments but those of all the members of the family of Mary Chin who, until a day or two ago was, from time to time under the joint care of Palliative Care and members of her family.
We have all had the experiencing of witnessing an extraordinary display of love and consideration of others, humour, wisdom, courage … and above all, a remarkable strength of mind, all of which somehow resided and radiated from the frail and slowly diminishing body of little Mary Chin.
… the efforts and standard of care from your organisation … has been way above and beyond anything that one could reasonably expect.
As individuals, all … of you have, both from Mary’s point of view, and also that of all her children, become members of her family.
Mary is now under the able care of the staff at St John of God Hospital in Goulburn.
The term of that care is now in God’s hands, although one must question that statement knowing that God may well be reluctant to override Mary Chin’s will.”
And I wouldn’t blame Him.
“Thanks to … you … all at your service for a quality of care which can never be measured in terms of costs or time, but must instead be taken as part of that dire need for human beings to care for one another.
Knowing and observing all of you has been a most rewarding experience for all of us.
May God bless you all,
With best wishes from,
for Mary Chin and all the family.” (1)
When I talk about palliative care I mean
- “caring without curing”,
- allowing the normal event of death to take place,
- neither hastening nor slowing it,
- working towards comfort, quality of life rather that quantity, and
- death with dignity.
You may have read an article that was in The Canberra Times on September 7, 1992 from Care Australia’s emergency program officer.
“Mothers of starving children in famine stricken Somalia care only that their children should die with dignity. A mother, barely able to walk herself, asked me for some scraps of material to bury her small child. Others asked for water to bathe their deceased before they bury them. Still more plead for a spade or a shovel so that they can dig a grave. All they want now is for their children to die with dignity, something they never knew in their short lifetime.”
It is that dignity which palliative care is all about. And that’s why I believe it offers people a very real choice.
In the ACT since 1985, we have had the home-based Palliative Care Program. It is a branch of the Community Nursing Service and is funded by the ACT Government (for staffing) and bydonations and fund-raising. The reason I mention this is that the next time you see me I may well be in Civic somewhere selling these badges for our Hospice Awareness Week which we have in April each year and that’s designed to raise public awareness of the palliative care program. The program has recently received three years accreditation from the Australian Council on Health Care Standards.
Home-based palliative care in the ACT is a 24 hour nursing and volunteer program aimed at caring for the total person
- emotionally and
Something we do every day, is wash people. Well a wash can be just a wash or it can encompass all of these things. It can be a really wonderful experience. People often hesitate to have a shower or a bath because it does take so much energy. Sometimes we have to convince them to have this experience. What do we do to achieve this? We can create a pleasant environment, have a lamp in the bathroom, the right temperature water, perfumed oil in the bath. Anything that makes it an experience to enjoy, not a job to be done. Sometimes patients say “I’ve never had an experience like that. It was wonderful”.
We work within a multidisciplinary team composed of:
- carer or carers
- doctors – GP and/or specialists
- ministers of religion and other spiritual carers
and many others.
Patients are generally referred by GPs, hospital doctors or community nurses. They must:
- wish to be cared for at home
- have a carer, and
- want palliative care
for us to become involved.
We work with each person, assisting them in their decision-making processes. We are always the patient’s advocate.
Three essential values to work with are truth, respect and dignity.
Truth is the essential base to work from. It must always be kind, it must be gentle, never blatant. A good guide is that it must be like good medicine – the right dose at the right time! We have a duty and a responsibility to the patient to inform and explain procedures and they must have agreed before we proceed with those procedures.
I went to a 102 year old lady – she’s 102 this coming week, and I met her last weekend. When I arrived on the Saturday morning she was fairly distressed. She had had a pattern of loss of appetite, followed by nausea. The doctor had come and given her some medication for that and then she had started vomiting. What really distressed the family was that she had got very grumpy. Well it wasn’t very long into the visit that I realised that this lady was constipated – that she had an impacted bowel. If you have a blockage anywhere between your mouth and your anus you’re in big trouble. Even at 50 years if you are going to work and you’re not sick, but this lady, at 101, was quite distressed. So I explained to her what I thought was wrong (she agreed with me because she knew), what I could do to help resolve the situation, and she said “help me, just get me well”. So in treating this lady, I did in fact treat the whole family.
Respect – we must always respect the individual’s choices. Often people, well-meaning, make decisions involving the patient without ever having discussed the issue with him or her, although this was possible and certainly desirable.
Dignity – is the patient’s fundamental right.
But above all these is love. Patients need and want to feel loved.
That was displayed by a man in hospital. He was an elderly man, he didn’t have any visitors coming to visit him. He had been in hospital for some time and he’d been in and out of consciousness. The staff were very caring, very supportive, and attended his care every two hours, turning him etc. There was a lady on the ward who would go and put flowers into his room. She’d been doing that for some time. This particular day she went and put flowers in his room and she noticed his eyes were open, which was unusual. So she went over and she asked him did he want something, thinking perhaps a sip of water since he must be dry. And he said “would you hug me please?” Now, he was lucky because she felt comfortable enough to do that.
Quite different to what happened when a lady died in hospital and her husband was present with her. He became so distressed that he got into bed with his wife and hugged her body to him. The nurses got very distressed and they didn’t know what to do and they couldn’t convince him to get out of the bed. They were so distressed that they called the minister to come to the hospital to help in the situation. It was he who was telling me this story. He knew this man for a long time and he talked to him, but this man was in shock and he couldn’t hear really what people were saying. He was distressed. The minister said “hey mate, get out of that bed, your wife’s dead, I’m going to take you home”. Which he did.
He wasn’t going to hurt his wife, he loved her. What did we do with that man’s distress? It was everybody else’s distress that was treated in that situation. He should have had support and it could have been handled so differently. He could have stayed with his wife, or if not, there is no reason why her body couldn’t have been transferred to his own home with his family’s support, where he would have, in due course, come naturally to accept that his wife had died and be ready to let her body be taken from the home.
I have a nine year old daughter, so I can relate very well to the drowning of Ebony Simpson. I thought of her in the lake with her hands tied with wire, her school bag on her back as she drowned. If her body was taken from the lake and brought to me, and that was my daughter, I certainly would want to hug that little body.
Carers can be either relatives or friends who are prepared to take the primary responsibility for the patient’s care. That is the person who we work with most intimately in the family situation. There can be more than one carer, and they can be sharing days, doing day and night shift alternatively, or whatever works in each family situation. They need total support to assist them in this role.
We are lucky enough here in Canberra to have one live-in carer since 1988, who has given her time to the palliative care program. In fact I don’t know that there is another one in Australia. She has enabled some people to have that choice to be able to die at home. There certainly are advantages in being able to die at home, to be cared for at home. It is much more personal, more person-centred. There is more control, it is a much more connected experience for that person and for the family, and they are more able to share the experience that they are going through with the people around them.
We mustn’t forget in these family situations the children and the animals. They’re all very much part of what is happening. We can learn a lot from the children because they are very accepting, very knowing and we often put protection onto children. What are we protecting them from? Things that they don’t really have any anxiety about. If they see grandfather and he is dead, they might say “Grandpa looks yuk”. But, what does that matter? It is a new experience for them, they’re used to seeing people vital and moving, but it’s a good word to explain a new experience for a child. It’s something that is, to them, strange and new.
GPs and/or specialists who are involved with each patient continue their role of providing medical care whilst their patients are on the program.
Nurses are a specially selected nursing team. They visit each palliative care patient at home according to an individualised plan of care – often working in co-ordination with the area community nurses.
Volunteers are carefully chosen by their co-ordinator who is employed by the Hospice Society. Volunteers are trained for their support role, particularly in the areas of confidentiality, acceptance, listening and awareness of the dying process and they are selected if they meet the program’s criteria. One of those is that they have not had a recent bereavement of their own. They often maintain contact with families in their bereavement.
We certainly encourage the carers to have volunteer input before they get desperate. It isn’t for them to do the chores that have to be done, paying bills or having a hair cut – an essential. It is to take time to top themselves up so they can come back refreshed to care for the person that they love, have a game of golf, or to sit out in the sun and read a book – they don’t even have to leave the home, but they need to hand over the responsibility of the patient.
Religious and spiritual support – the personal choice of each patient is always respected. We must allow this support for these patients. They often feel they will be judged wimps or hypocrites, because they are asking for support at this stage when they have not been involved in a traditional religious background that they are now asking for, and that they may have been brought up in. They have a right to that support. We are often more in tune with our spiritual needs, or may only become aware of them, in times of crisis. So we must be aware of the signals that indicate this need, and respond.
Others involved include the Mobile Rehabilitation Unit, which provides all the necessary equipment, for example, hospital beds, commodes, wheelchairs, etc., anything that helps care for this person in their home environment more comfortably. Also there are the cancer and AIDS support groups, and numerous others.
To complete our program, we need a hospice in the ACT – that is, a “resting place” to provide a non-institutionalised, peaceful and a home-like environment. That means they can take their own pictures and hang them on the wall, their own pillow, maybe their own doona cover, or their own easy chair. Sometimes an animal, so that it is as much like home as it can be. People need the hospice if they can no longer manage themselves at home, or be managed at home.
By providing occasional care for home-based patients, a hospice would also provide rest for carers in need of respite. You will have read the good news, in the recent ACT Budget, that three million dollars has been allocated for the construction of this much needed building.
We have been lobbying for that since 1986, but there is no commitment as yet to a time or a place. A hospice is not just a building. It is a philosophy of care as is palliative care.
Each palliative care patient situation is quite unique and we aim to meet the needs of each family we work with, supporting and educating them in their delivery of care and, where appropriate, sharing in the delivery of that care. Regular visits from skilled nurses are required to help relieve patient distress. There is the constant “jigsaw” of symptoms to control:
- nausea and vomiting
- bowel care
- sleep disturbance
- diet, etc
We use music, massage, relaxation techniques, meditation/ prayer, drugs and special procedures.
Special procedures are things such as central lines, which have direct access into your body, heart, bloodstream, and that is much more comfortable for some people, for their blood to be taken for testing or for giving certain drugs. We also have syringe drivers. I brought one with me today because most of you probably won’t have seen one. It is a little battery operated computer that delivers morphine via a syringe over 24 hours. There is just a very small butterfly needle that sits under the skin and it is much more comfortable as it gives people independence and a mobility. There is no need today to be giving four hourly injections.
This reminds me of a young man of 35 years who died recently. He had a syringe driver. A lovely young couple who had dreams of building a mud brick house, loved nature and they had very lovely friends who knew what their needs were. They didn’t bring chocolates or flowers. One day they arrived at the house with a hessian bag, and in it were three chooks. On the night that the chooks were settled into their new home, my patient was found sitting on a stool out near the pen in the back yard with his syringe driver and with all of his drainage tubes, patting the chooks and settling them into their new home. The syringe driver gave him the comfort to be able to really enjoy these chooks and the chooks gave him a great deal of pleasure in the latter weeks of his life.
I mentioned music, which may be a form of relaxation, or a prayerful experience. Taize music is a very gentle melody and it is like a mantra, just a few repetitive words. I went to visit a gentleman who was a lovely character. He always reminded me of Father Christmas and he was an artist, who painted and carved. The children were always attracted to him. He had a little dog Toby and his wife said, “it doesn’t matter what I do for that dog. I feed it, I walk it, but it’s his dog.”
On this particular day Toby was different. He usually sat in the sun room while I attended care, but today Toby whined and wanted to be in with us and I said that was fine. It was evident that Toby knew his master was going to die, before I did.
When I arrived he had his music on, which he often did, and I talked about the tape I had in my car and I asked if he would like to hear it. He said “yes, I would like that”, so I brought the tape in and two of the mantras were, “Come as You Are” and “Oh Lord, Remember Me When I Come Into Your Kingdom”. Simple repetitive words, musical, and gentle. It seemed that this may have created an environment in which this man could die. As did happen during this visit. His wife kept the tape there and she used it through the day when his friends all came to say their farewells. She also played it for her special thinking times and her sad times when she wanted to be thinking about him particularly.
It is often very difficult for people at this stage to pray or even to connect the words together in their mind. A man with lung cancer was really frightened about going to sleep at night. He was talking to me about this and really worried because he could no longer say the Our Father which he had said all his life. So, as we talked about it we decided we would put a golden ball into the corner of his room. That golden ball was God’s presence there. Most evenings he got very apprehensive as it became dusk, so he would just breathe in this golden light as God’s presence and God’s light in his room with him. We agreed that this was an experience of prayer and it didn’t need words.
Massage brings Rebecca to mind, who was 8 years old. I used to go out to massage Rebecca with her mother in the daytime at her home. Her little sister, who was 3 years, would put the oil on her hands and she would massage Rebecca’s feet, while her mother and I would massage her. One of the lovely things about the massage was that, in the evenings when Rebecca’s father came home from work, her mother would massage her with him. He found it so terribly difficult to accept that his 8 year old daughter was dying and he also felt that there was nothing he could do. This gave him a role, and because his wife had spent most of her energy in the daytime, she had no reserve left for him. He was feeling very left out. So together, they would massage Rebecca.
One day my colleagues said that there was a young man with AIDS who wanted a massage and I took the table out to his place. We weren’t long into the massage when I heard him sobbing, and he continued to sob throughout the entire massage. An hour later, when the massage was finished, he said to me “you know, I have never been touched like that in my life. I have always been asked for something back.” I think what he was feeling then was how people feel when they are dying. I explain it as a cocooning stage where they do withdraw into a much more private space. We can touch into that space, but we must ask for nothing back. It’s a time of “letting go”. It’s a time often of giving them permission to die. We are often in that role of facilitating and negotiating in families and it is something that we do encourage people to verbalise for the person who is dying. Its not an easy thing to do, but often it needs to be put into words and it can be that last real act of love for that person, to have permission to go for them, not to stay for you.
At each visit, we re-assess and review the plan of care with the patient and/or with the carer. The patient’s always in the driving seat, or if not able to be, the carer assumes that role. We put in extra support as demand needs.
Pain can cause isolation, depression, fatigue and the wish to die – as can other uncontrolled symptoms. Morphia has often had a bad press. As a result, people hesitate to take it when it would and should be the drug of choice. It can be tailored to equal two panadeine forte. The principle is the right dose at the right time, that dose being the right amount of morphine needed to relieve each person’s pain. There is no ceiling to the amount of morphine used. Certainly, good pain control early is more likely to provide good management through the course of the disease. The principle here is “you rule the pain or it rules you”. This can also be true of other symptoms.
No patient should suffer needless distress because we fail to use properly all available methods of symptom control.
The dying person is living through the final stage of life. This is a marvellous opportunity for growth and for becoming more human for all of us involved. When I visit carers or families after the death of someone they love, so many of them say “I wouldn’t have missed that for quids”. Quite different, often, from the first visit when they have been so unsure, so anxious and so apprehensive about the course ahead.
If somebody asked me to be present at the birth of their baby, I would feel so touched by that, so privileged to be invited to be present at such an intimate and personal event in their life. Well that’s what I feel about being present at this time, caring for someone at the other end of life.
We all experience the feeling of privilege to care and to share some of these very personal and intimate moments, when time is so precious. It is indeed a rich opportunity for growth – far from depressing!
That’s why I say … palliative care, done well, is the way to go!
* Mrs Creina Jarrett RN is a Palliative Care Nurse in the ACT Community Nursing Service with seven years experience in that specialised area.
1. This letter has been used with George’s permission. Other names have been deleted to preserve the anonymity of those involved.