A Good Death?  The Long and the Short of it – Stephen Pearson

At my remarkable dad’s funeral in March 2024, it was “standing room only”.  We were short on seats and orders of services; but long on blessings, tributes, tears and laughter. Of the many stories shared about dad, one in particular described him as a “Rescuer” of my little sister who as a young child had a tendency to lock herself into rooms.  Dad always managed to rescue her.

50 years later, my sister became dad’s rescuer.  After a major stroke 3 years ago and a fall in February, we were fearful that dad would die alone in a large hospital.  None of us wanted this. Despite our repeated requests for him to be treated as a palliative patient (including GP support and the requisite DNR forms), he was instead treated as a surgical patient who needed fixing rather than a 92 year old man who was dying. This meant x rays, scans, antibiotics, physio and forcing him out of bed every day over a 3 week period. He was long on clinical interventions, stress and fear but short on comfort, and pain free peace of mind.

The family is convinced that he would have died in that hospital, had my sister not turned “Rescuer”.  As a palliative care specialist, she worked hard to have him referred back to his care home so he could die in comfort, with expert care, pain control, peace and his family around him, as indeed happened 3 weeks later. But even for my sister, that referral was a struggle, frustrating and very stressful.  She shouldn’t have needed to rescue him from the NHS.

The hospital doctors our family spoke to were relatively junior, well meaning but seemed to miss the evident signs of the need for palliative treatment – dad’s age and immobility prior to hospitalisation, the clear requests from the family on his behalf and GP support.  Instead they focussed on clinical interventions to reduce pain and strategies for healing and recovery.  One of the doctors even said “We’re not giving up on him yet”.  A laudable intent for most clinical situations but what they failed to see was that dad was already past the point where this was helpful.  Indeed the enforced regime of getting him out of bed everyday and sitting in chair backfired badly, when, unsupervised, he fell out of the upright and slippy chair to be found on the floor a while later.  The doctors were reluctant to sign him over to the care home for several reasons including his need for oxygen and pain relief when in fact these were relatively easy to organise in the care home.

I wonder what training the NHS doctors and nurses receive about palliative pathways and options?  And I recognise the importance of checks and balances to prevent inappropriate early discharge of patients.  On the positive side, in our case and others like it, an earlier discharge would free up a hospital bed and clinical resources for other patients. 

Surely, as the national “cradle to grave” health service, the NHS itself should provide ready access to palliative care where it is evidently needed? 

So we strongly support Marie Curie’s campaign that everyone has the right to good palliative care, whether they are being cared for at home, in a care home, hospice or in hospital.

Stephen Pearson is a former lawyer and now Chair of Castle Community Bank and the charity Leuchie.