Liverpool Care Pathway - Life Café Announces Living Matters Awareness Week 2015

Do you just give in...? If the 'black dog' should visit us, should we appease it? Or should we struggle on?



This is Life Café...

Martin Pistorious was 12 years old when, returning home from school, he complained of feeling sick. His condition progressively deteriorated, sleeping for much of the time.

His parents, Joan and Rodney, watched helplessly as his physical faculties began to shut down... 

Finally, a test came back positive. It was cryptococcal meningitis, something the doctors said that meant there was no hope for Martin.

They were told that he was a vegetable, with no more intelligence. They were advised to take Martin home, to provide him with love until his death.

This is Collective Evolution –

“My mind was trapped inside a useless body, my arms and legs weren’t mine to control, and my voice was mute. I couldn’t make a sign or a sound to let anyone know I’d become aware again. I was invisible – the ghost boy.” - Martin Pistorious

Joan and Rodney despaired as they watched their son shut down. Joan’s despair would reach a point such that she thought death would be preferable for her son than this existence that he endured.

“I was there, not from the very beginning, but about two years into my vegetative state, I began to wake up.”

“I suppose a good way to describe it is like an out-of-focus image. At first you have no idea what it is, but slowly it comes into focus until you can see it in crystal clarity.”

“I’d have conversations with myself and other people in my head.”

Somewhere along this process, Martin soon realized his immobility.

“I stared at my arm, willing it to move. Every bit of me condensed into that moment.”

Martin recalled a moment when his father was helping him undress, and how badly Martin was trying to communicate, but nothing in his body would obey.

“Everyone was so used to me not being there that they didn’t notice when I began to be present again. The stark reality hit me that I was going to spend the rest of my life like that – totally alone.”

Martin revealed how he spent countless hours wallowing in self-defeat, “You will never get out. You are pathetic, powerless, totally alone.”

Was this really how he was to spend the rest of his days alive?

By the time Martin was in his mid-20’s, something slowly began to shift. Martin was now able to squeeze someone’s hand, a remarkable advancement considering his history. Furthermore, he was getting better at holding himself upright in his wheelchair.

However, the doctors insisted that Martin still had the mind of a 3-year old. But one nurse, named Verna, was convinced that there was something there.

Verna’s belief and Joan’s dedication unlocked Martin from the confinement which had locked him in for half his life.

Today, Martin is in a wheelchair, he doesn’t speak, but his determination has forged him a life. From small beginnings, he has earned himself a degree, built himself a business and won for himself with an extraordinary personality the love of his life.

Martin’s story is indeed one of many mixed emotions -sadness, empathy, fear, agony, inspiration- yet it stands as an incredible account of the power of our will to live.

The power of our will to live!

That’s the theme for this year’s Living Matters Awareness Week…!

Because life is precious and living matters.

The Mail had this story on Wednesday -

A mother has described how she heard a doctor asking her husband about switching off her life-support as she lay in a medically-induced coma after collapsing from a rare condition.

Jenny Bone, who was feared to have catastrophic brain damage after going into cardiac arrest, lay listening to the life-or-death conversation but was paralysed and unable to intervene.

She recalls her husband John ruling out ending her life – despite a previous conversation when she said she wanted to die if incapacitated permanently. The 40-year-old later recovered and now says she is relieved he went against her wishes.

Dying Matters, along with a dodgy euthanasia ‘charity’ using entryist tactics to share Age UK’s toilet facilities, have been promoting ACDs to include DNRs and organ donation.

A culture of death and dying has been subtly sponsored such that it has insinuated itself into the mainstream.

Mrs Bone had had a previous discussion saying she would not want to be resuscitated or kept on life support.

The doctor spoke of being 'realistic'...

‘I was aware of conversations around me,’ she said. ‘The most frequent one was being turned in the bed. A familiar “ready, steady, turn” would come from the nurses.

‘The most alarming was between a doctor and my husband enquiring as to my wishes surrounding being kept alive on a ventilator and that they were unsure whether my mental ability had been impaired due to lack of oxygen while they were attempting to restart my heart.

Mrs Bone is so grateful now that her loving husband could not let her go so easily. But what if that ACD had been in place and the medics had had access to it? What then...?

The doctors had ignored a GP's referral letter that may have placed Mrs Bone in the dire situation she found herself in. A complaint is in process.

An ACD might be both convenient and welcome at such times.

An ACD might be used as a Death Warrant in such circumstances to escape awkward questions and to thwart consequences.

"Let's talk about it."

Another amazing story from The Mail this month. Sometimes, all you need is hugs...

Exhausted after a premature birth,Kate and David Ogg were given the devastating news that one of their twins had stopped breathing.

Doctors predicted that their tiny little boy would not survive, telling the first-time parents there was nothing they could do.

When a doctor says there is nothing to be done, there is nothing to be done. Medical science has advanced to such a stage that doctors, nurse practitioners, are able to diagnose dying.

But Kate Ogg was having none of that.

But his mother refused to give up on the son she had already named Jamie, and begged medics to allow her to cuddle him for his last moments.

She then asked her husband to climb into the hospital bed to embrace her and their cold, still baby.

And in the loving cradle of his parent's arms, little Jamie was brought back to life.

The most natural thing to do...

And a mother's instinct won through.

Doctors worked on Jamie for 20 minutes when the twins were born at 26 weeks on March 25, 2010. 'We looked over and everyone was crowding around him - there were about 20 people in the room. I saw him gasp but they said it was no use,' she said. 'He stopped breathing and his heart-beat was nearly gone. I took him off the doctor - he was cold and I just wanted him to be warm.'

'If we had let the doctor walk out of the room with him, Jamie would have been  dead,' said Mrs Ogg, who lives in Queensland, Australia. 'It's astounding. This whole experience makes you cherish them more.'

The Hippocratic Oath that once taught humility has fallen into disrepute.

Does Pride blind them, then, that they think they may not commit error?

Those whom the Gods offend shall be taught wrath for their hubris.

All doctors were once seen as a heroic breed who would not give up on you easily and who would fight with every ounce of their strength and purpose to preserve life. And so they were. And many still are...

The Metro had this -

Little Joeseph Flint arrived 16 weeks too soon, so eager was he to come into the world. Weighing only 1lb 5oz and with a hole in his little heart, he was given only a 40% chance of survival.

Nevertheless, the good doctors plunged in –

In a pioneering approach,doctors used paracetamol rather than life-threatening surgery to seal the hole.

'He's our little comeback kid and it is great to be celebrating his first birthday after the year we have had,' said Mrs Flint.

That is the power of our will to live!

This is the power of the will to live...

This is Pennlive –

MIFFLINBURG -- The 22-month-old boy who fell and was swept away by a swollen stream last Wednesday may have been in the 34-degree water for as much as half an hour.

Doctors know that when he was found, he had no pulse and no respiration. For one hour and 41 minutes, rescuers administered CPR in a desperate effort to revive him.

That's why those same rescuers are using words like "amazing" and "miracle" to describe young Gardell Martin's return home five days later. He is healthy and giggling and playing again with his siblings.

"I've never experienced anything like this," Dr. Richard Lambert, a pediatric critical care specialist at Geisinger's Janet Weiss Children's Hospital near Danville, said of the resuscitation efforts.

The Union County toddler suffered no apparent neurological damage and was discharged Sunday.

You don't just give in, roll over and die.