Last Rights

Much has been written about the hospice movement, which provides expert palliative and supportive care for terminally ill patients and their relatives – but what if the hospice can’t take the dying patient?

This article describes a death which should have been managed in a hospice but which occurred on a busy cancer unit.

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My brother, Bruce, died recently, aged 56.  He was diagnosed with terminal cancer and was ‘given’ three months to live.  In fact he outlasted the doctor’s prognosis by two months.  As he slowly became weaker, his wife cared for him at home, with wonderful support from the district nurses and from the Hospice at Home nurses.  Throughout his illness, my brother remained positive – regarding each fresh disability as a challenge to be overcome or, at least, accepted.  Then he spent two weeks in the hospice and was sent home, complete with hospital bed and assorted aids to living.

During his last week of life, Bruce lost the power of both arms and had to be helped in all daily living activities.  At this point he frequently requested that someone be able to relieve his suffering as he knew death was fast approaching.

His GP called when he was very distressed about the lack of power in his hands and arranged for him to be admitted to the oncology (cancer ward) in hospital.  He said he thought there might be a new tumour growing in the spinal cord at the neck which was causing the paralysis, and arranged for a scan to be performed.  I asked the GP whether the problem was not simply a result of the cancer generally – it was obvious to all of us that he could not sustain life for much longer.  But Bruce was admitted to hospital on a Friday and waited until Monday for the scan.  This showed no new growth of the cancer.  (Bruce already had cancer in the lung, bronchus, brain and liver).

On Wednesday morning a nurse telephoned my brother’s wife to say that he had deteriorated and that we should come immediately.

From 10 am until late in the evening, we – Bruce’s wife, Jean, his two sons, my sister and I  – sat by his bedside in a curtained-off space in the busy 6-bedded ward.  By now Bruce could barely speak although he tried hard to make himself understood.  Visitors to the other patients came and went; it must have been very distressing for them, and we felt great sympathy for them.  Bruce was considered too ill to be moved to the hospice – and in any case there was no bed available.  Fortunately, after asking repeatedly if he could be moved to a single room, the nurses were able to discharge a patient to allow us all some privacy in a small side ward.  Pain was controlled by diamorphine, delivered continuously via a syringe driver, but Bruce became more and more agitated.  The night passed inexorably slowly.  It was extremely painful to watch Bruce struggling to speak to us all in turn.  The nurse who had been caring for him until 9 p.m. returned in the morning and was surprised to see he was still alive.  Two nurses washed and shaved Bruce and made him as comfortable as possible; this allowed us an hour to grab some breakfast and we then returned to our vigil.

By 1.30 p.m. we had been completely alone with Bruce for 27 hours.  The nurses were very busy, but remembered to pop in from time to time to offer us cups of tea and to check on Bruce’s drug administration.  Finally a senior doctor from the hospice arrived and spoke to Jean.  The doctor said that he was aware that Bruce had been talking about euthanasia when in the hospice.   He then asked Jean if Bruce was in any pain.  She said no.  He asked if Bruce was agitated.  Suddenly Jean (and the rest of us) realised that help might be at hand.  She replied that he was very anxious when awake because he couldn’t communicate properly.  The doctor said he would arrange for a sedative drug to be given and that Bruce would be asleep in 10 minutes.  This happened exactly as he said and Bruce died at 2.30.  The final half hour was agonising, with Bruce’s breathing being like a fish gasping for air.  The last breath was the typical Cheyne-Stokes gasping of a person with heart failure or brain death.  That phenomenon, coupled with a terrible spasm which caused his whole body to rear up, was death itself. It was the most awful thing to witness and we all have this visual image to live with.

I trained as a nurse and have witnessed several deaths, but my brother’s death was an unnecessarily bad death.  It was a death without dignity.  It was not the way an expected death should occur in today’s society.  We are all left wondering how it would have been managed in the hospice.  What if we had asked earlier for the magic sedative?  Where were the doctors/experts when we needed them?  Why did the GP request further tests when there was no hope of treatment?  Perhaps most importantly: why could we not have had a hospice nurse – or a nurse trained in terminal care – present with us?  If Bruce had stayed at home, he could have had a Hospice at Home nurse with him.

All these questions remain unanswered.  We do not blame the nurses on the ward.  They had a busy routine caring for people at various stages of cancer therapy.  They simply did not have the appropriate resources to cope with such a protracted death.  I feel strongly that our ‘last rights’ were violated – as well as my brother’s rights to a comfortable, dignified death.

I have detailed this experience in order to highlight the problems which can occur when care of the dying is inappropriate and inadequate. There has been no contact from any of the nurses involved in caring for my brother in the community, although the hospice has provided bereavement group sessions for Jean.

How many others have similar experiences?  And what can be done to ensure that others do not have to endure such an ordeal?