Dying without dignity

Poor care planning

Many of the cases that we reviewed included a failure to link up the person’s needs with the services being provided. This was especially true of cases where care was provided in more than one setting or by a combination of providers in the community and/or hospitals. 

Our cases show that when this happens, people tend to have a poorer experience than they should have at the end of their lives. In particular, the person’s wishes are not always taken into account. This, as well as a lack of resources for community palliative care, can also mean that people often do not die where they want to.  

Terminally ill woman denied her wish to die at home

What happened

Mrs G was an 82-year-old lady with advanced lung cancer that had spread. She lived alone and had limited sight because of diabetes. By the summer, she was no longer fully able to move around without help and her partner (who complained to us) said that Mrs G had been told that there was no more that could be done to treat her cancer. Mrs G told her partner that she wished to die at home surrounded by her loved ones.

Mrs G’s GP and a Macmillan nurse saw her regularly until the summer, when she saw an out-of-hours doctor because of abdominal pain, vomiting and shortness of breath. She did not want to go to hospital, so the out-of-hours doctor asked her GP to review her. Her partner also requested a GP visit but this did not happen because she was admitted to hospital later that day. 

Mrs G was discharged the next day. The discharge summary noted that Mrs G ‘was desperately keen to go home… She was deemed safe to return home with support from community palliative care’. The discharge note to the Practice asked the GP to confirm that he would call on her as planned two weeks later. This did not match the appointment scheduled by the Practice, which said the visit was due to take place three weeks later. Mrs G was not seen or reviewed by Practice staff after her return home. 

Mrs G’s illness progressed, and 12 days after her discharge from hospital she called paramedics because of chest pain. A note of her contact with the paramedics asked for the GP to review her. Mrs G had an appointment at the oncology clinic on the same day, where clinicians noted that her condition had quickly deteriorated and she admitted that she was not coping at home. She was taken to hospital to wait for a hospice place to become available. Mrs G died a few days later, shortly after moving to the hospice.

Both Mrs G and her partner had to cope with her symptoms and pain alone because there was no review of her need.'

What we found

Mrs G’s GP did not take the appropriate steps to help her plan for the inevitable progression of her illness or to discuss her wishes and needs before she died. The Practice then missed an opportunity to react when it became clear in the summer that her condition was deteriorating, and she was accessing out-of-hours care. At this point the Practice could have reviewed her to make sure that she had the support that she needed at home. 

After she returned home, Mrs G struggled to cope with the pain and other symptoms of her terminal cancer, as well as her pre-existing medical conditions. Both Mrs G and her partner had to cope with her symptoms and pain alone because there was no review of her needs. They experienced the distress of her worsening health with little support. We concluded that Mrs G would have been able to die at home as she had wished, if her GP Practice had made proper plans to support her through the end of her life.

Mental health trust failed to manage terminally ill man’s care needs while he was detained in hospital 

What happened

Mr M was a 77-year-old man with Alzheimer’s disease. He had been diagnosed with bowel cancer that had spread to his lungs. He had also been diagnosed with a brain tumour and had been told by his oncologist that he only had three months left to live.  

The following month, Mr M moved into a hospice for a period of respite care. During his stay, he became very agitated, confused and distressed, and tried to leave on a number of occasions. Hospice staff carried out a mental health assessment, and Mr M was detained under the Mental Health Act 1983. As a result of this, he was transferred to a mental health hospital.       

On the day of Mr M’s transfer to the mental health hospital, he was seen by a doctor who was unable to complete a full assessment and examination of him because there were six other patients waiting to be admitted at the time. Staff set up basic care plans to manage Mr M’s care, and nurses were asked to record daily observations of his condition. 

The following day, the nurses noted that Mr M had a high temperature so they asked a doctor to see him, but the doctor did not attend. A doctor carried out a ward round two days later, but Mr M was still not examined. It was only when Mr M’s family raised concerns about his worsening condition two days later that a doctor was called. The doctor examined Mr M, and he was taken to A&E, where staff diagnosed him with pneumonia. Mr M returned to the hospice after six days of treatment, but died the following day.

Mr M’s daughter said that she knew her father would die, but she felt that she and her family were ‘robbed of quality time with him’ because his pneumonia was not diagnosed and treated sooner.

What we found

The mental health trust failed to take appropriate action to plan and deliver Mr M’s complex end of life and palliative care needs. This included a failure to discuss those needs with him and his family, and a failure to communicate with the hospice and other specialised staff to arrange Mr M’s end of life care plan and organise his care. 

The nurses and doctors failed to carry out appropriate examinations or tests, particularly when it came to responding to Mr M’s worsening health. Staff only took action on the day he was taken to A&E because of the concerns his family raised. We said that Mr M’s family were caused unnecessary distress by having to witness these basic failings in his care.