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Dying without dignity

Delays in diagnosis and referrals for treatment 

Delivery and organisational problems also mean that people experience delays in diagnosis and treatment. 

Our casework shows that this often results in delays in referrals to palliative care, failure to implement important aspects of an agreed care plan, and poor needs assessment, leading to inadequate personal care and poor nutrition. The result can be a lack of dignity at the end of a person’s life. 

Delayed diagnosis meant man and his family did not get vital support at the end of his life

What happened

Mr P was 67 years old when he started to suffer from chest pain. His GP sent him for an X-ray, which showed fluid in the chest cavity. Mr P had a procedure to drain this, and a CT scan. Mr P saw a consultant a week after his CT scan who told him that no cancer cells had been found in the fluid drained from his lung and the scan had not detected a mass on his lungs. It was agreed that he would be reviewed in two months. Six weeks after this consultation, Mr P was admitted to hospital with breathlessness and pain in his right side. Clinicians drained more fluid from his chest and he was sent home a few weeks later with plans for further investigations. 

Over two months after the consultation, staff discussed Mr P’s case at a multidisciplinary team meeting, and raised the possibility of cancer. At the next multidisciplinary team meeting two weeks later, clinicians agreed to carry out a computer-guided biopsy, and this was scheduled for the following month. Between this meeting and the biopsy, Mr P was admitted to hospital again with chest pain. His GP prescribed him morphine.  

When staff discussed Mr P’s biopsy test results a few weeks after the procedure, they agreed that he had cancer, but further tests were needed to confirm what type of cancer this was. Shortly after, doctors gave Mr P his provisional diagnosis and an appointment was made for him to discuss palliative care. But when he attended the appointment, the consultant was not there. Mr P continued to deteriorate. He struggled to cope with daily tasks so his family bought a shower chair for him and arranged for him to borrow a wheelchair. Just over a month after receiving his cancer diagnosis, Mr P died at home.

Mr P’s family were concerned about the delays in diagnosing his cancer, and felt that his pain was not well managed. They explained that he had been in terrible pain, had lost a lot of weight and it was clear that he was very ill for six months before he was given a diagnosis.

His daughter said Mr P’s family felt he had been let down by the NHS in his hour of need. She said that because of the uncertainty, lack of communication and support, he and his family had suffered additional stress.

What we found

As no cancer diagnosis had been made by the time of the initial consultation, the consultant should have considered what else could be causing Mr P’s symptoms. If clinicians had explored other options at that time, it is likely that they would have diagnosed Mr P’s cancer much sooner. We said that the delay in arranging the biopsy further delayed his diagnosis. There was then a delay of four weeks in confirming his provisional diagnosis, during which time more could have been done to support Mr P and his family. 

If Mr P’s diagnosis had been made earlier, it would have meant that palliative care, pain relief and appropriate advice and support could have been put in place much sooner. Not only would this have reduced the impact of the illness on Mr P and his family, but it would have given them time to come to terms with the fact that their loved one was in the last stages of his life. 

Woman left without cancer treatment until it was too late 

What happened

Mrs D was a 63-year-old woman who had been referred to hospital by her GP because she was bleeding from her vagina. It had been more than ten years since her periods had stopped. A registrar reviewed her after a scan showed that she had an abnormality around her right ovary and fallopian tube. Following discussions with a consultant, the registrar scheduled a procedure to examine Mrs D’s womb using a camera, and to perform keyhole surgery to remove her right ovary and fallopian tube. 

A second registrar carried out the examination ten days later, but the keyhole surgery did not take place and the reasons for this were not documented. The second registrar told Mrs D her vagina and cervix were wasting away, and gave her cream to treat this. A follow-up appointment was planned for four weeks’ time, but Mrs D was not seen again until two months later. 

At the next appointment, Mrs D saw a third registrar. Even though she was experiencing ongoing heavy bleeding, the plan was for her to be reviewed in the gynaecology clinic again in two months’ time, and for blood samples to be taken the following month to test for cancer. But Mrs D’s GP had grown very concerned about her condition, particularly after she reported that she had ‘felt something coming out of her vagina’. She referred Mrs D to the hospital again and asked that she be reviewed by a consultant.  

In response to the GP’s letter, a consultant saw Mrs D the next month. The consultant arranged a further scan and a blood test for cancer. Mrs D was then referred to a third consultant, who found a solid mass of dead tissue in Mrs D’s vagina and pelvis. He suspected she might have cancer, and arranged for a biopsy to be taken for testing. Ten days later, cancer of the cervix was confirmed.  

It was at least another five hours until Mrs D received the pain relief she needed and she died hours later.'

The third consultant arranged an appointment for Mrs D to see a gynaecological oncologist, but four days before the appointment was due, Mrs D’s condition suddenly worsened. She was admitted to hospital with intense pain and vomiting.  

While she was in the hospital, Mrs D received pain relief through a syringe driver. On the day before Mrs D died it was agreed that her pain relief needed to be increased because she was anxious and in pain. At 2.15pm that day, a palliative care nurse noted that pain relief had still not arrived. It was at least another five hours until Mrs D received the pain relief she needed and she died hours later, ten days after being admitted.     

Mrs D’s sister said that had her sister known sooner, ‘she would have acted very differently in the last months of her life’.            

What we found

The hospital had let relatively junior doctors care for and treat Mrs D without making sure her care was discussed with a skilled and experienced supervising consultant. The doctors involved failed to recognise the type of bleeding Mrs D was experiencing and missed opportunities to perform relevant investigations, including a biopsy, at an earlier stage. There were also delays in follow up and review. Even though Mrs D would still have died, if her condition had been identified and treated sooner, she could potentially have been given more time. Over the final days of her life, Mrs D suffered unnecessary discomfort and agitation because of failure to assess her pain and the effectiveness of her pain relief.