Facts about the end of life that everyone should know
Dr Kathryn Mannix is a palliative care pioneer who understands the importance of a good death, and she believes that everyone living with a terminal illness deserves the support to have one.
Dying is a process, in the same way as giving birth.
For people living with a terminal illness, dying happens in a series of stages. Those stages become more and more predictable the closer a person gets to the end of life.
For the most part it’s a slow, gradual process of waxing and waning. They may need a nap but that doesn’t mean they’re going to stop breathing as soon as they close their eyes.
In most cases, there’s no sudden rush of pain and panic.
Talking families through what actually happens
When I’m talking the process through to my patients and the people who will be there by their side, I explain that at the end they will be unconscious but they’ll look like they’re asleep.
I’ll explain that the irregular breathing that the person exhibits is normal, and it’s what the brain does when your body is shutting down.
In the moment, their breathing will become very gentle, and then finally they simply won’t breathe in again after their final breath out.
Not common knowledge
I worked for some time in a teaching hospital in Northern England, where medical students receive basic orientation before their ward placements start.
During one class, I described the dying process. In the middle of the description, a young woman got up and left in tears. I found her afterwards, and unexpectedly she was perfectly alright.
The student told me that that summer she’d been working in Africa and her Gran died when she was away. Her family had told her about how gentle and peaceful her Gran’s death had been.
She had thought they were lying about the gentleness and were only saying that to make her feel better – until the moment she’d heard me describing the very same typical process.
She had become tearful because at that moment, she knew that her Gran truly did have that gentle experience that her family had described.
It showed me that if even med students don’t know about the dying process, most of the public are unlikely to be aware of it either.
It’s often as simple as helping families to relax, and emphasising that it’s possible to be safe while you’re dying.
“Right at this moment, your brother is OK”
I remember caring for a man who was dying, and he was making the death rattle sound, which is a very common phenomenon.
However, I also remember the subsequent agony of the man’s brother, who thought that the sound meant that the man was in pain.
I described the process to the man’s brother then; the sound was being made because of the mucus in the back of his throat. Normally he would cough to clear it, but because he’s so deeply unconscious, he’s no longer noticing it.
I reassured the man’s brother that if he’s tolerating that sensation, it means he’s completely comfortable. The sound means that right at this moment, your brother is OK.
A kind of midwifery
Marie Curie offer people the benefit of a workforce that’s wise in the ways of the dying process.
I consider it like midwifery for the process of dying; allowing people to benefit from the expertise of those familiar with the process.
It’s often as simple as helping families to relax, telling them it’s OK, and emphasising that it’s possible to be safe while you’re dying.
At the end of life, if we’re being honest, you don’t really have much control! Just as a pregnant woman must give birth, the last breath must eventually be taken.
Understanding the process allows us to see the way through.
The importance of being reassured
Marie Curie is a leader when it comes to celebrating and championing good palliative care.
Marie Curie Nurses are there to translate all of the things people are hearing and seeing. They make sure that the family is not misunderstanding anything, so they don’t begin their bereavement with the wrong idea of what happened.
At the end of life, wise palliative care staff can recognise distress and respond to manage symptoms. However, most dying is gentle and our role then is assuring families that “This is normal dying: there is no distress here, all is going as it should.”
What a vital gift.