Helping Our Patients Travel 1st Class to Their Journey’s End
My name is Lorraine and I am the Lead for the North Brent Specialist Community Palliative Care Team across Harrow and North Brent where our nurses provide daily specialist care in over 560 homes every year.
The best way for me to tell you more about what we do is to take you on a journey with me to meet a patient and family we cared for at home.
When we first met George, he was 67 and living with his wife Jane. They had been married for 46 years. They had a 27 year old daughter who was planning to get married in 6 months’ time and both described her as their precious miracle because they had waited so long for her.
He was in a wheelchair because of a recent fall and told us that he had been given a prognosis of 9 months to live. He was also waiting for what he called ‘D Day’. He had marked the day on a calendar with a big red cross and told us he was hoping to die before then so that he wouldn’t have to deal with what he referred to as the ‘wedding issue’. He was aware of how upsetting this was for his wife and daughter and as a result they had stopped discussing the wedding around him.
George described himself as a stoic, private, proud man who believed that pain was part of his disease and ‘something he had to live with’. He was a retired military man & had always been very proud of his profession but had severed contact with his friends and colleagues of the regiment when he was diagnosed. His wife told us that some of his friends had stopped calling now. She had kept contact but was now ‘pulling back’ as she did not want to betray his feelings.
George had always been an avid football fan. However he had lost interest in watching or discussing football & had not left the house for 3 months since his last hospital appointment when it was decided he was no longer well enough for any further treatment.
George said he did not want to attend his daughter’s wedding as he had always envisaged he would walk her down the aisle but as he could no longer walk, he refused to attend. He had said to me, “I mean, Lorraine, what’s the point?” “That’s how she’ll remember me” and “Everyone will be looking at me, not her”.
We worked with George and involved his wife in helping manage his symptoms which started to improve his quality of life.
As George developed a greater understanding of the services we could offer he began to become interested in the Wellbeing Centre and requested a referral. Through services available we were able to provide physiotherapy and complementary therapies to help build his confidence and improve his mobility.
Fundraising managed to source football tickets and supported George to attend a football match with his future son in law. He used the wheelchair on this occasion which was a huge step for him. He reported a “thoroughly enjoyable if not somewhat exhausting day” – made even better by the fact that his team won.
After this, his wife started to notice that he would take more of an interest in things around the home. He gave permission for his wife to make contact with some of his old friends and colleagues.
George unfortunately then experienced a further deterioration and although he wanted to die at home, requested an admission to St Luke’s Inpatient Unit to see if we could help improve his symptoms.
Every pin on this map is a patient like George.
Whilst an inpatient he continued with another course of physiotherapy and pain management and was using the wheelchair less and less. He also met with our Patient & Family Support Service on his own and later with his wife and daughter. He was able to talk about his feelings around illness and worries about the wedding and the future. George was discharged home and continued with the community team support.
I am delighted to tell you that George did walk Shelly down the aisle.
He felt this was a significant life event and was happy to ‘give her away’ to a NEW man who he could trust would take care of her after he was gone.
A few weeks after the wedding Jane organised a tea for some of the regiment and reported that George really enjoyed ‘catching up’.
Soon after this George’s condition deteriorated further referral to H&H meant George and Jane were able to get the extra support they needed to stay at home. George died a week later at home with his wife and daughter by his side.
We did a home visit following his death where Jane informed me that George had talked about this cancer journey when looking through a holiday album one day. He had told her “Jane, we are all on a journey, only, for some of us, we know that the time is limited until we reach our destination”. George had wanted us to know that he felt we were the “best travel agents he had ever dealt with and that St Luke’s ensured he travelled 1st Class”.
I remember Jane’s words well. She said, “Remember Lorraine, you cannot change the final destination but you can have a positive impact on the journey. You all helped guide George and all of us on how to live until he died and we will never forget the impact this had”.