Caring for someone with a terminal illness

Coming to terms with a terminal prognosis

Waiting for a diagnosis can be very stressful when you know someone is unwell but you don’t know why. Some people had to wait a long time for a diagnosis; others were told a suspected diagnosis while further tests were done before the diagnosis was confirmed. Sometimes doctors’ initial suspicions were wrong, meaning that people were given one or more inaccurate diagnoses before the correct one. Jane was initially relieved that George was not diagnosed with Motor Neurone Disease although later tests showed he did have it. Saba sought a second opinion about her mother’s symptoms, and Mary moved her husband to a private hospital to speed up the diagnostic process. A speech therapist friend suspected Dick’s wife had MND and told her that she should see her doctor. The carer sometimes realised what was wrong or found out the diagnosis before the patient had been formally told. For instance Una had researched her husband’s symptoms on the internet and sneaked a look at his notes on the consultant’s desk to confirm her suspicions.
Being told the condition was terminal was usually a harrowing experience and carers felt a wide range of emotions including fear, distress, anger and sadness. Some found the diagnosis was a complete shock that came ‘out of the blue’.
For others the diagnosis was expected and explained the symptoms. Where the patient was elderly a terminal prognosis was easier to accept. Theadora said she took her cue from her sick mother and remained calm. The diagnosis also brought a sense of relief to carers who had been frustrated by the lack of a definite diagnosis or who had been searching the internet to find out what was wrong. Most carers received the news during a medical consultation; a nurse was sometimes present. David (Interview 35) said, “I think it was delivered in quite the right way; it was fairly straight forward really”. Not everyone was happy with the way the diagnosis was delivered. While some consultants were very direct and matter of fact, others used unclear language or left carers and patients unsure of the implications of the diagnosis. English was not Saba’s mother’s first language, which may explain perceived difficulties in how best to deliver the diagnosis to her.
The diagnosis could be unexpected, so carers were not always present when the patient was given the news. Mary’s husband was admitted to A&E while she was away in France; she returned to find him in hospital. Julie‘s partner came home from a hospital appointment with his diagnosis of oesophageal cancer and said ‘read this’. It can be difficult to come to terms with a terminal prognosis and carers were often left feeling numb and were faced with telling members of their family and friends.
Deciding what to do once a terminal diagnosis has been given can be difficult. Some carers decided not to tell the patient the prognosis. Henry and Jane’s children decided it was important that Jane felt she could recover, and Saba’s family decided if her mum didn’t ask they wouldn’t tell her about the extent of her cancer.
 
When the patient knew of the prognosis the decisions about what to do next were usually shared and the time left was highly valued. Dick and Di went on a holiday they had always dreamed of to Venice, and Anne planned her 50th wedding anniversary party - she felt ‘if we don’t do it now, we never will’. Victoria and Ivan felt they would take one day at a time and used their faith to keep them strong.
 
Being told that the condition was terminal meant that certain treatments (such as a Whipple’s operation for pancreatic cancer) were no longer an option or that there was no treatment available other than palliative care. Palliative care aims to provide relief for symptoms and emotional and spiritual support to patients and carers to enable the patient to live life as fully as possible. Once the prognosis was understood some patients rejected any further treatments aimed at prolonging life, such as chemotherapy or radiotherapy, in favour of symptom control.
The term ‘palliative care’ is not always fully understood by lay people and the realisation that there are no further potentially curative treatments can be upsetting. The possibility of taking part in clinical trials was investigated by several, as were complementary therapies for symptoms. Although they had been told the condition was terminal, some carers still hoped for a cure or said that the seriousness of the situation only dawned on them slowly over time.
Although many carers still hoped for an improvement, honesty from the medical professionals was highly valued. For Georgina, honesty and openness from the consultants treating her mother’s cancer helped her to feel involved in the treatment decisions. Jane found it frustrating when some of the professionals dealing with George’s care were not totally honest with her. It can be difficult for the consultant to gauge accurately how long a patient has to live, although many wanted to know. Some carers said it was easier to cope if they knew what the life expectancy would be; one said that knowing it could be several years was helpful. Heather asked the consultant outright, ‘How long have we got?’ Sarah realised she was ‘in for the long haul’ when she started caring for her parents who both had Parkinson’s disease. Sometimes the time between diagnosis and death was very short, or shorter than expected, and carers found they had little time to adjust. Others said that it had been difficult to adjust when the ill person had lived for longer than expected due to the availability of new treatments.


Last reviewed July 2014

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