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Pediatric palliative care: living with hope and quality throughout illness

by Amanda Alladin, Miami Herald, 24 April 2018

Pediatric palliative care is a specialty that aims primarily to relieve the burden of suffering for children and families living with any chronic, complex or critical illness. Although we tend to equate suffering only with physical pain, suffering can take many different forms.

Pediatric palliative specialists seek to provide an extra layer of support for these families struggling to cope with their child’s illness by addressing the many different forms that coping can take, assisting them through the difficult decision making and, at the same time, focusing on symptom management to improve quality of life.

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When it comes to ageism, are we fighting a losing battle?

by Catherine Foot, Centre for Ageing Better, 1 May 2017

Ageism is the last socially normal, socially acceptable form of prejudice. It’s been internalised, ingrained in us. It’s the last taboo.

People tend to think of ageing in terms of loss: whether it’s of loved ones; physical and mental capability; or independence, identity and sense of purpose.

Ultimately, we can’t prevent these losses, but I believe our response to longer lives needs to do six things to manage them and prevent ‘internalised ageism’ from taking root…

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I am a disabled person and I don’t back the right to die for one very important reason

by James Moore, Independent, 5 October 2017

I am aware that even the late Professor Stephen Hawking shifted his position on assisted suicide, arguing in a BBC interview that “to keep someone alive against their wishes is the ultimate indignity” and stating that he would consider assisted suicide were he in “great pain or felt I had nothing more to contribute but was just a burden to those around me”. 

But that comment about being a burden troubles me. It’s very possible that an otherwise more or less happy disabled person could suddenly find themselves in a difficult situation with family or carers, and could, as a result, start to become so convinced that they were a “burden” that they might feel the same way when with the proper support they wouldn’t dream of it. 

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Euthanasia Bill risks are too great – expert

by Emma Jolliff, Newshub, 27 April 2018

Anyone who claims assisted dying already happens in New Zealand is peddling fake news, a palliative care expert says.

A panel of specialists says the End of Life Bill going through Parliament is dangerous and the burden on doctors to assist a patient to die is too great.

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Commentary: Shortening life to end suffering is troubling

by Thomas J. Madejski, Times Union, 28 April 2018

Compelling arguments have not been made for medicine to change its footing and to incorporate the active shortening of life into the norms of medical practice. Although relief of suffering has always been a fundamental duty in medical practice, relief of suffering through shortening of life has not.

They have great apprehension that such a measure would negatively impact health care among racial and ethnic minorities and the physically disabled.

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Euthanasia bill ‘dangerous’ – Palliative care workers

by Emma Hatton, Radio New Zealand, 27 April 2018

The Netherlands, Belgium and Canada are some of the countries where euthanasia has been legalised.

But, Professor MacLeod said there was no place yet, where the law provided absolute safety to those who were vulnerable.

“There is no jurisdiction anywhere across the world that has produced a law that is safe – there have been cracks in all of them.”

Te Omanga Hospice medical director, Ian Gwynne-Robson, said one issue for the sector was ensuring it had enough experienced doctors.

He said if euthanasia was an option, inexperienced doctors may offer it as the best option, when this might not be the case.

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How do the Dutch respond to euthanasia requests from the intellectually disabled?

by Michael Cook, Bioedge, 14 April 2018

Despite the fact that assessing the capacity of intellectually disabled people is very difficult and a task for specialists, the authors found that only in one of the nine cases was a specialist consulted.

“The Dutch cases raise the possibility that the bar for assessment of intractable suffering is set lower for people with an intellectual disability or autism spectrum disorder than for the general population, by considering their long term disability as a medical rather than a social condition. We found no evidence of safeguards against the influence of the physicians’ own subjective value judgements when considering EAS decision, nor of processes designed to guard against transference of the physicians’ own values and prejudices.”

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Comfort care, palliative care, hospice care explained after Barbara Bush’s death

by Nicole Villalpando, austin360, 18 April 2018

Choosing comfort care means that you are choosing treatment for comfort instead of a cure. If you had a disease like cancer, you would be deciding that you are no longer going to pursue chemotherapy or radiation treatments.

Instead of curative treatments, doctors focus on treatments to provide a good quality of life. “You’re forgoing life-extending treatments,” she says. 

People often confuse comfort care with hospice care or palliative care.

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She spent her working life caring for patients who were dying. Now she’s one of them

by Jessica Long, Stuff, 30 March 2018

She says talking about her journey through Mary Potter Hospice is a final service to her community. Without palliative care, she expects she would have been “completely lost”.

“To me, hospice care is about very holistic care. It’s not a number or person in front of you that gets diagnosed. It’s an entire family and their community. 

“I felt very ready to cope with things because of that [support]. To accept death and dying as a part of life.

“It’s really uplifting.”

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‘Glimpse from heaven’: Nurses reveal what people say before they die

The New Zealand Herald, 20 March 2018

Lead author Kurt Gray said: “When we imagine our emotions as we approach death, we think mostly of sadness and terror.

“But it turns out, dying is less sad and terrifying – and happier – than you think.

“In our imagination, dying is lonely and meaningless, but the final blog posts of terminally ill patients and the last words of death row inmates are filled with love, social connection and meaning.”

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