Dying without dignity

Poor communicaton

Almost all the cases we looked at highlighted failings in communication: between clinician and patient, clinicians and families, clinicians and their team, clinicians and other teams, and between hospitals and care providers in the community. 

Poor communication with the person who is dying, and those close to them, means there are uncertainties, unrealistic expectations, indecision about preferences, and missed opportunities for better care and involvement of loved ones, which leads to them being unable to grieve. Failings in communication within and between clinical teams, and poor co-ordination of care, contribute to inadequate palliative and general care. 

Doctors can be in no doubt about what is expected of them in terms of communication. The General Medical Council guidance makes it very clear that patients must be given the information they want or need in a way they understand, that doctors must show consideration to those close to the patient, and that doctors must work collaboratively with colleagues. 

GP Practice failed to tell older woman she was dying from cancer

What happened

Mrs W was an 89-year-old deaf woman who had been diagnosed with incurable bladder cancer. She visited her GP because she had been coughing up blood, and was sent for a chest X-ray. At a follow-up appointment with her GP, Mrs W was told that the X-ray had found the cancer had spread to her lungs. That same day, Mrs W’s GP called the hospital and was told that Mrs W only had a short time to live. It was agreed that the GP would break the news to Mrs W and arrange for her to receive palliative care.  

The following day Mrs W’s GP Practice referred her to the Macmillan nursing team and wrote to her explaining that her GP would like to see her. Mrs W did not respond to that request and the Practice did not follow this up. Almost two weeks later, Mrs W’s son, Mr W, visited her GP Practice and at this point, the Practice manager told Mr W that his mother was dying. Mr W was extremely upset that his mother had not been made aware of the seriousness of her condition sooner. The following month, Mrs W’s GP Practice referred her to the district nursing team for support. She died a month later. Her son said that ‘the GP Practice had marginalised her as a profoundly deaf person’.

What we found

As Mrs W was deaf, rather than call her, the GP Practice wrote to her explaining that her GP would like to see her to discuss her prognosis. This was understandable. However, given how important it was to let Mrs W know that she was dying, we concluded that her GP Practice should have followed up on its letter when Mrs W did not respond. We agreed with her son that it was inappropriate for the Practice manager to break the news that his mother was dying, and we could appreciate how distressing it must have been for him to have found out in this way that his mother was dying.

Although the GP Practice had taken relevant steps to involve the Macmillan and district nursing teams in Mrs W’s care, its delay in telling her she was dying meant that a plan for Mrs W’s palliative care was not made as soon as it could have been. We felt that the Macmillan nursing team would have been able to provide more effective care and support for Mrs W, if she had known that she did not have long to live.    

Woman’s family left without explanation of her genetic disorder months after she died

What happened

Mrs E was 69 years old and had been suffering with severe mental health problems for many years. She was admitted to hospital as an emergency patient because she was no longer able to swallow. Her husband, Mr E, who was her main carer, explained that this was preventing her from taking the medication she needed to manage her mental health condition. After several weeks in hospital, a junior doctor told Mr E that a blood test result showed that she had Huntingdon’s disease, a hereditary disorder of the nervous system characterised by the development, in middle life, of jerking movements and progressive dementia. 

There is no specific treatment for Huntingdon’s disease. The children of someone who has the condition have a 50% chance of developing it themselves.

The doctor gave Mr E some printed information about Huntingdon’s disease but was not able to answer his specific questions about what the diagnosis meant for Mrs E and her children and grandchildren. Mr E said that the news of his wife’s illness came as a complete shock. Feeling very concerned, he contacted the specialist to discuss the diagnosis, and the likely progression of his wife’s disease, and to find out how it might affect his family.

The specialist was away. When he returned, staff made an outpatient appointment for three months’ time without contacting Mr E to find out what he wanted. Mrs E died before the date of the appointment. 

Mr E complained about the delay in providing an appointment and was told that the specialist was not responsible for his wife’s care. The specialist offered to arrange for a second opinion but that did not happen. In the end, three months after the death of his wife, Mr E had to ask his GP for a referral to another specialist to answer his concerns. Mr E said that the hospital did not treat him and his family as people with concerns and feelings: 

This “not knowing” caused us considerable distress… knowing that my children and grandchildren may have inherited the disease. This was totally unnecessary.’ 

What we found

We said that the Trust had not treated Mrs E and her family in a patient-focused way, and that the problems they experienced could have been sorted out many months earlier with a quick telephone call to establish what Mr E wanted to talk about. We also found that there were significant communication failings in this case between different parts of the Trust, as well as the Trust and Mrs E’s family. 

Mr J discovered he had cancer after reading his hospital discharge note

What happened

Mr J, 67, had been experiencing chest pain and was referred for an X-ray. The radiologist noted that one side of his diaphragm was elevated but put this down to a high-placed liver. As the radiologist felt the X-ray did not raise any concerns, no further investigations were carried out. Over the next year, Mr J had two more X-rays because of chest pain and breathlessness. Then, almost 12 months after the first X-ray, he had a scan that indicated he had lung cancer. Despite further tests and specialist appointments, Mr J was not told about this before he was discharged from hospital.  

Details of Mr J’s diagnosis were included on the discharge note to his GP and he was given a copy, which was when he learnt of his likely cancer. His daughter wrote ‘it was I who read the discharge note first and I was devastated. I had to decipher the medical terms… before daring to tell the rest of the family including my father this awful news’. Further tests confirmed lung cancer, and that it had spread to Mr J’s bones and brain. Mr J was treated with radiotherapy, but his health continued to deteriorate.  

Two months later, Mr J was admitted to hospital because he was struggling to breathe. Once he was on a ward, his pain relief was stopped because it was thought he was becoming too dependent on it. He was started on pain relief again the next day, but by that point Mr J was severely agitated and in pain. He died in the early hours of the following morning.  

The way that Mr J and his family learnt of his diagnosis was appalling.'

What we found

The way that Mr J and his family learnt of his diagnosis was appalling, and failed every principle of established good practice in breaking bad news. There was an avoidable delay in making a diagnosis: an earlier diagnosis would have meant opportunities for better palliative care. Mr J’s pain relief was inappropriately stopped and staff did not help to address his family’s concerns about his pain relief and agitated confusion. 

In addition, we found that the clinicians treating Mr J recognised that he was at the end of his life but did not explain this to his family in a way they could understand. All of these failures meant that Mr J and his family’s experience of his care in the last few days of his life was significantly more distressing than it should have been.