After presenting my first lecture the other morning I fielded some live questions from the audience. The last question asked what had happened to hospice. “You started off well, were highly active and looked after patients well. Nowadays it’s as if hospice has lost its way. What’s going on?”
What’s going on? A question I had been asking myself about the hospice sector at least since 2016. Our founding mother Dame Cecily Saunders was a change agent, she was a disruptor. She identified a population with great need, cancer patients for who all treatment avenues had been exhausted. In the 1950s these patients would often die with great suffering. Dr Saunders would not let this happen on her watch and did something about it. This was an act of activism which led to the modern hospice movement spreading across the whole world, as the needs of patients are present globally. Lots of actions were taken by passionate people who wanted to bring relief to the suffering.
In recent years I think the hospice movement has ground to a halt. They have become protectors not just of the status quo but of the stasis quo not wanting anything to change. If they had their way we’d still be in the 1950s, doing what we could with the small number of skills and knowledge that were present in those times. It is now 2023 and a lot has changed. The Covid-19 Pandemic we are coming out of was a stark reminder. The current Global Financial Strain 2023 that we are going through makes for tough times. We can’t just sit still on our throne as if we were King Canute trying to turn back the tide.
What would Dame Cecily think if she was still alive? I think she would be shocked that some organisations which call themselves hospices are not practising patient-centred care. Instead, they are providing staff-centric care or organisation-centric care to the detriment of individual patients and their families. They cling to the seven most dangerous words in the English language as if it was their holy mantra to be repeated if there is even the slightest hint of change. “That’s the way we’ve always done it.” As if intoning the phrase provides them absolution from all sins, including the sin of neglect. Dame Cecily would be disgusted that hospice staff are putting their own needs in front of those of patients and their families.
I often say to my patients that when it comes to what may be their final journey, I am not the driver, they are. I am their GPS, I am there to guide them, there to identify what obstacles may lie ahead. To warn them of dangers and of any possible detours. My job is to try to make their journey as smooth as possible. I am not here to judge the for the choices they make. They might want to pursue treatments that I think would make their tenuous situations worse. They have to do the right thing for themselves and their family. We need to show them we still care because in some instances it’s not clear to the patient or their family. We can do better than that. It’s time for us to grow up and show up. It’s time for us to get over ourselves and become activists again. The 1950s were good in their day but that was over 70 years ago.