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Do Doctors Desert the Dying? Treating the aching heart…

By Rosalie Shaw, Consultant in Palliative Care Medicine and Executive Director of the Asia Pacific Hospice Palliative Care Network, Singapore

Editor’s note: These are excerpts and highlights gleaned from Dr Shaw’s speech given at the recent Hospis Malaysia Annual Dinner on 11 Dec 2005 and for which every physician should pay heed to. Dr Shaw’s sharing of her experience should help us all in the health care profession refocus and change our attitudes in the provision of medical care.

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The Changing Concept of Hospice

2005 has been a year that demanded courage, endurance and the hope that there were better days ahead. The world is changing very rapidly and we find ourselves struggling to find the energy to meet these challenges.

Last week when I was in China I was thinking about how the concept of hospice is changing and about the basic values that underlie what we do. Hospice (also called palliative care) has finally been accepted as a medical specialty in Australia. This is the end of a long struggle for recognition. In Australia as in other countries there is now much talk about providing hospice, not only to cancer patients but to all patients who need end-of-life care. This means patients with end-stage heart or lung disease and even children with life-threatening congenital disease. In Australia more than half of the children cared for by paediatric palliative care services do not have cancer.

Too Many Patients Still Do Not Receive Good Palliative Care

There are now more than 1,000 hospice services throughout the region (if we include Australia and New Zealand). More that 1,200 people attended the Asia Pacific Hospice Conference in Seoul, Korea, in March of the year. However, despite this remarkable expansion over the past decade, there are still many patients who do not receive good palliative care.

Even within the services we are sometimes criticised for focusing on the physical symptoms and neglecting to comfort the aching heart - to ease the pain caused by the fear, anxiety, sadness, guilt, shame and disappointment felt by our patients and their family members.

Learning to Be Kind

On the way back from China I bought a book to read on the plane. In this book there was a story about Aldous Huxley. Aldous Huxley was an English writer who died in 1963 on the same day that John F Kennedy, the American president was assassinated. Aldous Huxley was famous for his book Brave New World. I wondered what he would think of our world in 2005. Throughout his life Aldous Huxley was interested in, and wrote about religions and religious experience. At the time of his death one of his friends asked him what he had learned after meeting so many spiritual teachers and gurus. His answer was surprising. He said, “It is embarrassing to tell you this, but it seems to come down mostly to just learning to be kind.”

This is such a simple answer that we almost dismiss it as not saying anything important. However, as I returned to Changi airport, the words of Aldous Huxley came back to me. It was peak hour and several planes had landed almost at the same time. There must have been more than one hundred people waiting in a queue for a taxi. Poles and tapes had been set up to make us walk back and forth across the room in an orderly manner. Men in uniform were guiding us into this maze. They must have seen the man with the crutches. He had a splint on his right leg and was unable to put his foot to the ground. Back and forth he struggled. At one point he took out a handkerchief and wiped the sweat from his face. We were not sweating in the air-conditioned terminal. This was the sweat of pain and effort. No one seemed to notice. I wondered what to do. Should I offer to let him sit on my suitcase? But I was not sure that I could push my trolley with a 70 kg man as well as my 25 kg of luggage. So like everyone else I did nothing but watch him hobble row after row towards the door leading out to the taxis.

But I kept asking myself, what has happened to us all. Where is the kindness? Why have we become so blunted that we cannot see or do not respond to another person’s pain?

Doctors Who Desert the Dying

In July of this year Dame Cicely Saunders, founder of the hospice movement, died at the age of 87. We all know her story – nurse, medical social worker, doctor. But it is interesting to remember why she decided to become a doctor. She gave up nursing and became a social worker after she injured her back. Some years later, after an operation, her back was much better and she was planning to return to nursing to care for terminally ill patients. However, a senior surgeon at St Thomas’ Hospital where she was working, said to her, “If you want to work with the dying, go read medicine. It is the doctors who desert the dying.”

Do doctors and nurses still desert the patients? Yes, unfortunately I think they do – in many countries, in many hospitals, even in some hospice home care programs. Only a few weeks ago one of the palliative care nurses rang me at midnight. A dying child who was being cared for at home was very breathless. The parents were becoming increasingly anxious and had rung the nurse several times. The doctor had been called but had said that there was no point in him going to the house because there was nothing more he could do.

This is unacceptable. It is not about what can be done. It is about being kind – getting out of bed, driving to the house and sharing in the inconsolable tragedy of this child’s impending death.

Another Example of Doctors and Nurses Deserting the Dying

In many other countries, I have seen doctors and nurses desert the dying. I remember one of the patients in a hospital. She was only 27 years old. She had cancer of the cervix that had spread to invade her bones. Her left leg was in a plaster cast and her right arm was grossly swollen. The skin was hot, red and shiny stretched over a rapidly expanding tumor. She lay with a piece of wet cloth on her forehead, her eyes shut but her face tight with pain.

Her husband sat with her day and night. Their two small children, one 6, the other 8 were being cared for by his mother. “What can you do”, the husband pleaded. “I cannot bear to see her suffer like this.”

We could not bear it either. We made suggestions for a change in the medication. Morphine was being given by a pump that gave a continuous injection under the skin. We came back in the afternoon. The pump had not been changed. Again we asked staff of the ward to change the pump. Next morning when I went to the bedside the patient looked a little more comfortable. “Did she get any rest?” I asked the husband. “No”, he said. “So much pain until they changed the pump this morning.” I was so frustrated. How could the doctors and nurses be so unkind. They had the drugs, they knew what dose to prescribe but they did not care enough about this person to do something to ease her pain. They were indifferent to her suffering. She was just another case of advanced cancer in bed 17.

This story reminds us that palliative care is not just about knowledge and skills. Of course skills are important and can be taught. Competent assessment is important. Knowing about appropriate medications is important. Being able to communicate clearly and kindly is important. But attitudes are even more important than knowledge and skills.

Impact of Hospis Malaysia

During the past year Hospis Malaysia has cared for over 900 patients. This has been important for these patients and their families. But it has also been important for the community. People talk to each other about the service. Family members tell friends and neighbours about the care they have received. What matters most to them is usually the kindness they have received from staff and volunteers. This is what they remember.

But Hospis Malaysia has also contributed to the wider community. This year 270 doctors and nurses have come together in 6 training courses. In these courses the goal has been to nurture attitudes of kindness, compassion and caring, as well as to teach knowledge and skills of symptom management. These doctors and nurses go back into hospitals and services throughout Malaysia. They will carry with them a different model. It was Gandhi who said, “You must be the change you want to see in the world.” I believe that this is what Hospis Malaysia has been doing in the clinical work and the teaching. It is offering a new model of caring in which it is possible to be compassionate as well as competent.

So often we hear doctors say, “But it is very well for you palliative care people. You can take all day. But we have to run busy clinics. We don’t have the time to listen to people’s problems.”

Another Hospice Ward Experience…

I was asked if I would like to meet some of the patients. I always like to meet patients. They took me to the bedside of a man with paraplegia. I already knew his story. He was in his 50s. He and his wife had two children, both still at school. The patient had cancer that had spread to the bones. Following an episode of severe pain he had become paralysed from the waist down. Even though he had been given a course of radiotherapy there had been no recovery.

I sat at the bedside and through the interpreter I told the man that I was very sorry that he was having these problems but that I was pleased that his pain was so much better. His wife was sitting on the other side of the bed. I said that it must be very difficult for both of them. I asked him if he thought that he would be able to go home again. He told me that he hoped that he could go home. I asked how he would manage now that he could not move his legs. He told me that his wife was able to manage these problems in hospital so he thought that she could manage just as well at home.

Later that evening the doctors took me out to dinner. I was shocked when they told me that I should not have asked the man if he could go home. “You do not understand our custom,” they said. “This man is dying and once dying patients come to our hospice they cannot go home again. We do not talk about these things because we do not want to make our patients upset.”

“But was he upset?” I asked. “No, that was the strange thing,” they said. “He did not seem upset when you asked him that question. And we did not know that he wanted to go home again.”

Then they told me that, after I had left the ward, the nurses noticed that he was crying. They had never seen him cry before.

I was concerned that I had made the patient cry. “Why do you think he was crying?” I asked. They then gave me the most astonishing reply. “I think it was because you touched him. At first he was uncomfortable with it but then he liked it. And you made eye contact.”

What could I say! Did they never touch the patients? Did they never make eye contact? How can they express kindness and concern without contact?

The senior doctor then said something that touched me deeply. He said “I learned something from you today.” “And what was that?” I asked. “I learned that making a deep relationship has nothing to do with time,” he replied.

That is true. The other day I found a quotation that reminds us of this: "Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.” Leo Buscaglia

Are We Kind To Each Other?

This brings me to my final point. I have talked a great deal about caring for our patients. In hospice we also talk about team work, working together to produce the best possible care for our patients.

But are we kind to each other? I think we are often so focused on our work that we do not see the pain and suffering around us. Palliative care is very difficult work. Day after day we see people with disfigurement and pain. We grow to love our patients and they die. We are faced with making decisions that may hasten death or prolong life. We work long hours often at the expense of our family life. We are expected to be cool and detached even when faced with angry and distressed family members.

Do we care for each other? Do we give the sincere compliment when things have gone well? Do we give a listening ear, a gentle touch and make eye contact when things are not going well?

Another quotation, this time from Winnie the Pooh. You may remember this story from childhood. Winnie the Pooh is a bear who has adventures with his friends Tigger, Eeyore, Piglet and Kanga. Kanga is a stuffed toy kangaroo who has a baby called Roo. The quotation from A A Milne’s book: “Just because an animal is large, it doesn’t mean that he doesn’t need kindness; however big Tigger seems to be, remember that he wants as much kindness as Roo.”

I think that this is a reminder for all of us that, no matter how senior or how important people are, they still need our kindness and concern.

Final Words of Encouragement for the Hospis Malaysia Effort

There have been outstanding developments in palliative care throughout the region. However, despite the fact that there are over 500 hospice services in Asia, there are still countries such as Bangladesh, Cambodia and Laos where there are almost no palliative care services. And there are still many wards where there is very little kindness and where the patients are still seen as just the cancer patient in bed 17. We need to continue this work. Palliative is not only demonstrating that competent nurses and doctors can also be caring. It is also providing innovative education programs that encourage others to follow this model of service.

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Last Updated:
Tuesday, 01 January 2008