This week many of us have been shocked at the lack of compassion shown by our political leaders to those fleeing terror in the Middle East. However, it is worth remembering that the mark of a compassionate society is not just how we treat those outside our borders but also those who are the most vulnerable within them.
In the following piece, intensive care specialist Ken Hillman describes how he and other hospital staff fought to enable the son of a patient to spend time with her as she was dying. Because the son happened to be in prison, this involved negotiating with inflexible prison authorities who did not believe that this family had the right to be together with their mother as she died. It is a powerful piece that challenges our health system and other societal institutions to show more compassion and understanding towards those marginalised and isolated from mainstream society.
Ken Hillman writes:
As an intensive care specialist I deal with seriously ill patients, many of whom spend the last few days of their life with us. We are faced on a daily basis with the challenge of ensuring patients do not suffer while they are dying. Part of our role is to also acknowledge the suffering of friends and relatives of the dying and to provide honest explanations and comfort while they sit with their dying loved ones. We constantly deal with relatives and friends who are grief stricken, angry, crying and even hysterical as they try to come to terms with the death of their loved one.
In all my time of over 30 years working in intensive care I cannot remember witnessing such distress amongst staff and relatives as our patient, Maureen, died.
She was admitted with a sudden brain haemorrhage which was controlled by clipping the vessel that caused the bleeding. Maureen was sedated and ventilated after the procedure and unfortunately the arteries in her legs became blocked. With no blood flowing to her legs she was taken to theatre and the clots removed.
However, Maureen was a heavy smoker and, as a result, the arteries in her body had become narrowed. Despite the operation, blood flow to her legs was not restored. The muscles became irreversibly damaged releasing toxic substances which were gradually killing her. No further procedures were possible.
Her relatives were asked to come in. The practice of withholding and withdrawing active treatment is common when further active treatment is deemed to be futile. It is a distressing time for those close to the patient. We reassure the relatives that the patient will remain pain free and will not suffer.
Our management includes close support of the relatives. The rules around the numbers of relatives visiting and at what times are ignored. Many of our patients are from non-English speaking backgrounds and we try to orchestrate the withdrawal of support around cultural and individual needs.
Often, relatives from interstate or overseas would like to be there to share the grieving with their relatives and friends. Within reason, we try to keep the patient alive until all the relatives and friends are around the bedside in order for them to say their farewells in their own way.
The dying process is sacred and needs to be conducted in a sensitive way. The gradual withdrawal of active treatment often helps the relatives accept the inevitable death. It brings the relatives closer together and facilitates gradual acceptance and encourages sharing of the tragedy.
However, the story that unfolded had its own tragedy and was different to any that we have experienced. Maureen’s son was in jail. Because his mother was dying he was allowed compassionate leave to be with her. James was accompanied by three officers from the Correction Centre.
I talked to James and explained the course of his mother’s illness; that nothing more could be done and that we would remove the life support when all the family were there. He was, naturally, devastated. James wept uncontrollably and sat next to his mother putting his arms around her.
I explained the terminal nature of the illness to the guards and our management plan. They said he only had until 10.30 and then he would be returned to prison. It was now 09.45. I explained that it would not be possible to withdraw treatment and let her die with dignity with such a time pressure. They seemed to be acutely aware of James’s distress and the need to be with his mother in the last few hours of her life. However they stated that rules were rules and that if a reprieve was to be offered I would have to speak to their boss.
I finally got through to him and explained the situation. His first words were that he had been through all of this before and that it could take days for her to die.
The certainty of his medical knowledge hinted that the conversation was not going well. It was obvious that he had his own rules and he would construct ‘facts’ to support his decision. I explained her medical condition and that this was not my understanding, adding that I would be surprised if she would last more than several hours after the life support was removed.
I explained that it was important the withdrawal process should respect the dignity of the dying woman and the need to acknowledge the grief of the relatives. I stated that we had many years of experience with managing dying as sensitively as possible as the memories of those moments would remain forever.
He insisted that the prisoner had to be returned to the jail at 1030, whether his mother was alive or dead. I explained that the daughter was on her way but hadn’t arrived as yet.
That would not influence his decision. I asked what were the rules and policies around this issue. Incredulously he said there weren’t any. It was his discretion and in view of the crimes he committed he wasn’t prepared to allow him any more time.
I tried unsuccessfully to explore his right to deliver gratuitous punishment in the form of refusing to allow James to be with his mother while she died. This cut no ice. It was pointless discussing the issue any further with him. He had decided the nature of Maureen’s last few hours on earth and whether her son was able to be with her.
I urgently contacted the daughter and asked her to come in to the hospital as soon as possible. This in itself has the potential danger of her having a road traffic accident. We quickly prepared the necessary procedures to withdraw our life support. While this was occurring one of the guards told us that his boss had allowed James an extra 15 minutes! Presumably, he would then be extricated from his dying mother and dragged away.
I explained to James that his sister was coming as quickly as she could and as soon as she arrived we would stop treatment. His crying hadn’t stopped. He held me and begged to know if the fact that he was in jail was the cause of his mother’s death.
I reassured him that there was no relationship between her disease and any anxiety she may have felt about him. I also explained that she may be able to hear him. Hearing is probably the last sense to go and that he should quietly talk to her and reassure her that you were well.
The daughter arrived at 10.15. We withdrew treatment. None of us would have liked to witness James being dragged from his mother’s arms before she died. Maureen died at 10.43, 2 minutes before James was taken back to prison.
The three guards witnessed James’s despair. Being there was different to being on the end of a telephone and administering justice based on your own beliefs.
I would have liked to think that if it were the decision of the attending guards, they would have allowed us to handle the process with more dignity and compassion. Instead a man at the end of the telephone, using his own flawed judgement determined how a woman spent her last moments on earth and how her son was to express his grief.
There are times you are ashamed of the brutal systems within which we sometimes live.
James was on so-called “compassionate leave”. I would have liked any Australian who believes we are not tough enough on criminals to have witnessed this man’s despair in the arms of his dying mother.
Ken Hillman AO is Professor of Intensive Care, Liverpool Hospital, University of New South Wales