Sunday, 10 March 2013

Liverpool Care Pathway - On A Slippery Slope We Slide

To this -
Dying Wish: A Documentary About a Peaceful Death...
This comment on Facebook -
"It's just simple persuasion - using the term "peaceful death" alongside a film about someone who said he didn't want to eat or drink in what he believed to be his final days. Fine. It worked for him and he died how he wished. But this isn't to say that restricting food and fluid for everyone will result in the same death (in fact, we know it's often quite the opposite!) But this could be used to "sell" the LCP to unsuspecting people, this is my worry. The blanket-protocol, applied en masse, to achieve a "dignified death" - and look, here's proof that your requirement for food and water may diminish, you'll be comfortable... Ridiculous! We're all different, and cannot all go down this pathway in exactly the same way, as our own sad experiences have proven! The more these "good death" stories get reported (deaths that go along with what the LCP stands for regarding withdrawing nutrition and prescribing strong opiate and sedation drugs) the faster down the slippery slope we slide..."
This is Death with Dignity.Org -

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Dying Wish: A Documentary About a Peaceful Death



Retired surgeon, Dr. Michael Miller, knew he wanted to die in his own bed, at his home in Boulder, Colorado. His desire was to leave surrounded by family, and under the care of a supportive hospice team. Dr. Miller had done his homework on his end-of-life choices. He'd researched the dying process and discovered that patients who stopped eating and drinking often had an easier exit.
Yet, Dr. Miller found few studies specifically addressing Voluntary Refusal of Food and Fluids. What evidence he came across, proved largely anecdotal. He also discovered a lack of knowledge and information relating to dehydration and the dying process, not just among patients and their families, but also among professional healthcare providers. The documentary Dying Wish is the gift of a compassionate physician who laments his own past lack of skill at the bedside of the dying.  
Dr. Miller had decided when his own body began to signal his closeness to death, he'd allow nature to take its course by stopping drinking and eating. His existential pain around a prolonged dying process, and his belief that dehydration would alleviate some of his more troublesome symptoms, led to his decision to refuse food and fluids.
When filming began, Dr. Miller hadn't yet embarked upon his fast. For some time, he'd been dealing with pain, nausea, and diarrhea, for which he was being treated by his hospice care team.
When Dr. Miller called a Colorado radio station with a request for a documentary about his death, he never imagined he'd meet a journalist with end-of-life expertise. In his conversation with me, Dr. Miller first focused on the possibility of a radio feature. When he learned of my previous experience as a television producer, he suggested a film. Within days, a camera crew was assembled and standing by for daily visits to Dr. Miller's house.
Over the course of two weeks, Dying Wish followed Dr. Miller throughout his fast, to his death on the thirteenth day of not eating and drinking. We see the physical changes in him, the dizziness associated with hypotension, the muscle loss, cachexia, and the weakness. We hear about the methods of comfort care he employs to address the most common adverse symptom of dehydration in the dying: dry mouth. Those who have seen the film often express their surprise at Dr. Miller's still frequent trips to the bathroom days into his fast, emphasizing the fact that abstaining from fluids doesn't preclude urination. The body still needs to eliminate waste.
Dr. Miller wanted to highlight the common physical benefits of dehydration at the end of a terminal illness—the release of endorphins providing natural analgesia, reduced edema and pain from fluid-filled tumors, and fewer secretions, to name a few. His goal was to dispel myths of protracted pain and anguish due to thirst. At no point does Dr. Miller complain of either thirst or hunger. Indeed, it becomes clear cancer took away his hunger, months before he signed on to hospice. Reduced appetite, then, is seen as a natural part of the dying process, as the body begins to shut down.
Ultimately, Dying Wish provides a window on the dying process, demystifying it for the many whose only experience of death is as a chaotic, tragic event or as a medical emergency. Perhaps the most profoundly touching scenes are those in which he takes leave of his family, reflecting on his life and the nature of his leaving, turning the period of his dying into a meaningful rite of passage.
Dying Wish addresses far more than what it means to refuse food and fluids at the end of life. As an educational tool, it invites discussion about existential and psycho-spiritual questions such as the nature of a "good death" and what it means to be "ready to die?" I sought out bioethicists who could comment on these issues, and share their own experiences with patients who had made similar choices.
Dying Wish makes it clear patients have a right to stop eating and drinking at the end of their life. Dr. Miller's own advanced directives emphasized quality of life. He was determined to avoid the indignity his 102 year-old mother faced at the end of her life when nursing home staff cajoled her into eating against her will.
Among the general public, Dying Wish has opened hearts and minds to a subject that, in our society, still does not bear thinking about. Audiences who've seen Dying Wish are often incredulous that patients can exercise such control over the circumstances surrounding their death.  
Clearly, as a medical man, it could be said that Dr. Miller had a need to control his death. But, equally, he had a desire to approach it with a degree of consciousness that assumed acceptance of the inevitable course of nature. Physicians who've seen the film, have commented Dr. Miller made them feel more comfortable about their own deaths. End-of-life professionals have used it with patients to broach sensitive issues that may be more easily aired through the less personal medium of a documentary film.
Dying Wish was screened at film festivals around the country and featured twice at the clinical conference of the National Hospice and Palliative Care Organization.

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