"Communication between teams could have been improved"

My dad was diagnosed with lung cancer in August 2023 in his 50s. His treatment and care he received from August from the respiratory team and Macmillan centre in NHS Borders & NHS Lothian was excellent from each professional.

However, in the December after his follow up CT scan he received a phone call from a consultant late on a Friday evening to tell him the tumour had grown into his heart and it was now end of life care. The words used to my dad (via phone call) were “a sudden catastrophic event.” As a family we are fully aware of the severity and possible urgency of the phone call; however, the phone call was made to my dad who was on his own at the time (the consultant was aware of this). The GP then arrived with a DNR form and medication for family to administer for said catastrophic event. Both myself and my mother are healthcare professionals but in this circumstance we were a daughter and a wife. We were also told to have dark towels ready for a major haemorrhage. As a family we were left terrified but most of all my dad.

We then went into a weekend where we have never felt so isolated, we did not know who to contact if something did happen or even if we could contact anyone. We lived each hour in fear of this event happening, he was terrified to leave the house, terrified to go to sleep and terrified of leaving us all with the trauma of this happening. We then had the palliative care nurse arrive the following week who was unaware of the phone call made on the Friday night to which we had to explain. Over the weeks the DNs reassured us they would be able to administer the medication or we could contact OOHs.

My dad never had the “sudden catastrophic event” we had all waited for hour by hour and he lived for 3 months following that awful phone call which we are extremely grateful we got that time with him despite living in absolute fear.

But during those three months I do feel communication between teams could have been improved and someone to take the lead in meeting my father's needs. As a healthcare professional I prompted many aspects of his end of life care such as pain management, enquiring about other medications, prompting the need for a nebuliser, requesting various pieces of equipment, asking the palliative care nurse for referrals to the lavender touch due to carer stress, enquiring about palliative radiotherapy (that was forgotten for three weeks before I asked again), as well as my mother being completely unaware of different benefits he was entitled to until a friend prompted this. All of these things were dealt with promptly when requested but I feel these should have been suggestions to us instead of us having to ask or prompt as again I was in this situation as a daughter not a staff member.

I do fear for families that have no medical family members and do not know what is available for them at such a traumatic time. I feel there should be a biopsychosocial holistic approach to a patient's care at any stage of their journey.

We do want to thank the DNs for their input through the last 3 months of my dad's life and particularly Michelle for doing absolutely everything possible in my dad's last day, she treated us all with kindness, compassion and dignity and helped us through a very difficult day.

I hope for the professionals involved this can be a learning opportunity for future families as I’m aware it is someone’s job to give difficult information but the language used and the circumstances it was done under are a lifelong memory for this family. We watched the strongest man we knew become the most frightened and vulnerable, contributed to by poor communication.