It’s not dying that frightens us most, is it? It’s how we die. And that fear is magnified among many people with brain tumours who are too often denied a dignified death.
We all have a primal desire to die at home, surrounded by love and cared for with tenderness.
Sadly, we often hear from families that their loved ones were not afforded that privilege. Bit by bit, their brain tumours took away part of them until, at the end, they did not even have the death they would have wanted.
According to a study in The Oncologist, 25% of relatives said their loved ones dying from high grade brain tumours had no dignity, compared with 7% in general palliative care.
At our All-Parliamentary Party Group (APPG) meeting on end of life care, people living with brain tumours and their families argued they should have a choice about how and where they die.
Leading palliative care consultant Dr Jane Bywater suggested that people with high grade gliomas would be more prepared if they were referred to palliative care as soon as they were diagnosed.
But should patients be urged to think about the manner of their death as soon as they are given a terminal diagnosis?
Inevitably, opinion is split.
One man who spoke at the APPG meeting on end of life care said he wanted to discuss his last days straight away, while he was capable of making decisions. It made him feel he had some control.
But another patient told how he was shaken to receive a letter from a hospice just four days after his diagnosis. It dented his positive thinking. For him it was too much, too early.
But whichever side of the argument they are on, patients and their families want more than anything to be treated as people and not a collection of symptoms.
Many relatives tell us they – and their loved ones – were only given the full truth about their prognosis in the last few weeks of life.
This left them feeling woefully unprepared and unable to express their wishes when it really mattered about what mattered most.
Of course, it can be difficult for doctors to get the balance right between giving hope and being realistic.
Only by achieving an integrated health and social care system will more people with brain tumours have a better chance of dying at home, surrounded by their families.
Who has the right to deny them passing away in that loving and dignified embrace?
Carol Dyce