Keeping Frank at home

When Frank was diagnosed with lung cancer, Macmillan Nurse Christine Reddall was called to his care home to offer support. She was impressed by how home manager Lisa Quinlan and her team managed to care for him. Here, she tells Frank’s story: an example of outstanding care.

I recently worked with a small team of untrained nurses who found themselves in a very unusual situation for their service. Used normally to promoting, as far as possible, ‘normal living’ for their clients, they suddenly found themselves caring for someone who was going to die from a cancer diagnosis.

Frank

Frank (not his real name) was a 42 year old man with severe learning difficulties. He lived in a care home with six other people with similar disabilities, supported by carers 24 hours round the clock. Frank had been in institutional living most of his life and he was settled, comfortable and much loved by all the carers and the other clients.

Cancer diagnosis

Leading up to Frank’s diagnosis, his carers noted that he seemed unwell. He was losing weight, seemed breathless at times and had a cough that was not responding to antibiotics and cough medicine. Not content with how Frank was, thye badgered his GP with their concerns. Eventually, following tests Frank was found to have lung cancer. A decision was taken between the medical professionals, his next of kin and his carers that it would not be in Frank’s best interests to do further investigations or to give active treatment such as radiotherapy or chemotherapy, as he became very distressed with anything or anyone medical. Frank’s carers very quickly decided that they were going to do everything possible to enable Frank to remain in his home, in the surroundings he knew with the people who he looked upon as ‘his family’.

Coping with pain

They decided that as well as keeping his routine as normal as possible, they needed to be observant to any changes that may indicate he was uncomfortable or in distress. Frank did not often complain of pain, and when asked about his health he would often become quite defensive, saying ‘I’m alright—there’s nothing wrong with me.’ They were concerned that he would be in pain and they would not know, so together, they discussed the use of a pain/distress tool, and had a look at some of the well known charts. However, they felt that such a chart might be difficult for the carers to interpret, so they decided to talk together and come up with something that would work for all of them.

Frank’s Book

After discussion, they came up with a ‘Frank’s Book’ and each of them wrote in
it as and when they wanted if they had any concerns, or if they felt something was not quite right. Because the carers knew Frank so well, they were by far the best people to detect any changes in him. Frank trusted them, whereas he had a real fear of anybody medical. Together, led by Lisa, the carers developed a ‘palliative care resource file’ that included details such as contact numbers, his end of life wishes, and information on symptoms. I got very used to one of them phoning me just to check something out, and often an answer over the phone was all that was needed. I was amazed at how quickly this team of carers adapted to the situation in front of them, whilst still allowing time to care for their other ‘healthy clients’.

Becoming more ill

Over the 18 months Frank lived following his diagnosis, his needs gradually became more complex. He developed haemoptysis (vomiting blood) and was at risk of a large bleed; his pain and breathlessness escalated requiring bigger doses of morphine; he lost a large amount of weight and subsequently developed pressure sores despite the very best efforts of all concerned. Towards the end of his life, Frank had a syringe driver set up (continuous infusion of drugs through a needle under the skin). Though the care of the syringe driver was managed by district nurses, Frank’s carers were indispensable—being with Frank whenever it was changed to ensure that his needle phobia was not an issue for him or the nurses. They developed brilliant strategies!

Supporting Frank’s friends

Frank defied all predictions as to when he was likely to die, and though incredibly frail and ill, he continued to surprise us all with his strength of mind. As well as caring for Frank, the carers had the added burden of helping to support one of their other clients who was very close to Frank. Doreen and Frank had known one another for years and she would mother him, and spend a lot of time sitting with him.

Coping with an uncertain future

From Frank’s diagnosis through to his death, and beyond, Frank’s carers, led by their manager Lisa, provided exemplary care for Frank, his family and each other. They attended group sessions to listen and learn about what was happening to, and what was likely to happen to Frank. Though scared, they prepared themselves for the event of a major bleed and wrote out an end of life plan based on Frank’s best interests, knowing that he would not want to be moved away from his home.

Dying

On the night of Frank’s death, all his main carers were with him. Again, I was amazed (and I think they were to) at how well they coped. They decribed to me afterwards how it seemed so natural and right for them all to be there and how they were able to make sure he was clean and ‘comfortable’ before the funeral directors came. They woke Doreen and supported her as she said goodbye.

Sharing experiences

Since Frank’s death, Lisa has helped me in my role as by accompanying me to other homes who find themselves in a similar situation—caring for one of their clients with a life limiting disease. She also provides support and advice over the phone, and shares her paperwork with others. As a Macmillan Nurse with many years’ experience in palliative care and none in learning disability, I believe that Lisa and her team have demonstrated an excellent level of care for Frank. The impact of their caring is already beginning to impact on others who are caring for people in similar circumstances to Frank.