"But for her power wheelchair, Jerika Bolen is every bit an active 14-year-old girl – a hopeless romantic with shiny purple hair, a love of alternative music and an addiction to Facebook. She has a maturity and wisdom that belies her age, and on a recent spring day, as other 14-year-olds were finishing their final year of middle school and making summer plans, Jerika told her mother she was ready to die."
Dr. Peter Rasmussen: retired oncologist, hospice physician and advocate for Oregon's Death with Dignity law, was given a terminal brain cancer diagnosis in Spring 2014. The Oregon Statesman Journal followed Dr. Rasmussen's end-of-life journey in articles, photos and videos, as he grappled with the same issues he once fought for on behalf of his own patients. Harper's Magazine: When I Die. [more inside]
Palliative care practitioner BJ Miller on redesigning our relationship with death. BJ Miller and the Zen Hospice Project previously.
The Economist's Quality of Death Index for 2015 was published last week. It attempts to measure the quality of palliative care in 80 countries. The top three countries (in order) are Britain, Australia, and New Zealand. And the bottom three countries? Philippines, Bangladesh, and Iraq. Here is The Economist's summary and here is the full report.
A video has emerged of a man serenading his wife of 73 years on her deathbed with a song she sang to him as he went to fight in the Second World War.
For most of US history, our relationship with death was more intimate than it is today. Americans often died at home and remained there until burial, where they were washed, wrapped in shrouds, and laid out on boards while the family made preparations for a funeral feast and an at-home funeral. In addition to family, women known as “Layers Out of the Dead,” helped take care of the immediate tasks following a death. This homespun approach to death largely persisted until the Civil War, when embalming, hospitals and eventually funeral directors changed the way we dealt with our deceased. But now, with home funerals and even green burials slowly regaining acceptance, a new generation of “Layers Out of the Dead,” are emerging.
She was determined to fulfill her father’s dearest wish, the wish so common among frail, elderly people: to die at home. But it seemed as if all the forces of the health care system were against her — hospitals, nursing homes, home health agencies, insurance companies, and the shifting crosscurrents of public health care spending. The NYT reports in depth on a single case, a snapshot of the typical end-of-life care situation in the United States. A worthwhile but disturbing long read, potentially very upsetting if you've lost a loved one in a similar managed care setting. [more inside]
Fred Phelps, longtime head of the Westboro Baptist Church previously previously previously previously previously previously previously, is "now on the edge of death" in a Topeka hospice, says his son Nate previously in a piece in the Topeka Capital-Journal. Media reaction has been, in a word, unmixed. [more inside]
The Ultimate End of Life Plan. "...Torn, I called my mother's internist. 'I know your mother well enough, and I respect her,' he said. 'She doesn't want to risk a surgery that could leave her debilitated or bound for a nursing home. I think I would advise the same decision if it was my Mom.' I called my mother and said, 'Are you sure? The surgeon said you could live to be 90.' 'I don't want to live to be 90,' she said. 'I'm going to miss you,' I said, weeping. 'You are not only my mother. You are my friend.' That day I stopped pressuring my mother to live forever and began urging her doctors to do less rather than more. A generation of middle-aged sons and daughters are facing this dilemma, in an era when advanced medical technologies hold out the illusion that death can be perfectly controlled and timed."
In 1986, Sandra Clarke was working as a staff nurse at Sacred Heart Medical Center in Eugene, OR when a dying man asked her to sit with him. She agreed but first needed to make her rounds and the man died alone in his room before she was able to return. Troubled, and feeling that she had failed a patient, she resolved to gather volunteers to stay with those who were alone and close to death. Ms. Clarke enlisted her entire hospital for a bedside vigil system to help ensure that patients would not be alone when they died. In 2001, Sacred Heart formalized the program as No One Dies Alone (NODA) and over the last decade, it has spread to hospitals across the US. "Susan Cox Is No Longer Here" offers us a glimpse into the NODA experience in Indianapolis. [more inside]
Although many people would prefer a painless, instant death—no suffering, just lights out, quickly, permanently—others would have some variation of what seems to be Tolstoy's version of the good death: a conscious one, with acceptance of whatever comes. [more inside]
She is gone. A Valentines story of love and loss.
In 2002, Doug Monroe placed his parents in assisted living. A decade later, he's looking back at "the weighty financial and emotional costs that come with a parent's immortality": The Long Goodbye.
It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little.How Doctors Die.
Phyllis Greene, who is in hospice care in Ohio, talks about why she decided to start a blog at the age of 90 and how technology has brought a new dimension to her life.
What should medicine do when it can't save your life? Atul Gawande looks at the system of final-stage treatment for terminal patients, which, despite more than 40 years of a hospice movement for better end of life care, often ensures that patients die exactly how they least want to: in a hospital, hooked up to machines. Gawande tries to envision how, "when the chemotherapy stops working, when we start needing oxygen at home, when we face high-risk surgery, when the liver failure keeps progressing, when we become unable to dress ourselves" medical care can focus on quality of life, rather than prolonging it. [more inside]
They were very resentful about people in prison for horrendous crimes getting better medical care than their families.
Christmas Caped Crusader Tis the season for heartwarming news filler, perhaps, but the video of this guy at the children's hospice makes me think he's the real deal. When the cameras stop rolling, though, do stunts like this make people give more deeply or more often to charity?
Dying for Lifesaving Drugs: Will desperate patients destroy the pharmaceutical system that produces tomorrow's treatments?Reason Magazine
Living With a Dying Baby. "Families can choreograph their child’s very brief life with their family . . . Sometimes they may have a matter of minutes, so they decide beforehand who can hold the baby, who will cut the umbilical cord, who will hold the baby when you know he is going to die."
BardoThodal the tibetian book of the dead, a way of life.This is what happens on the 49th day of our being dead. If you do not escape the Matrix, the day after you are inside a woman's womb. part one part two (Google video)
Columnist and Pulitzer Prize winning author Art Buchwald is dying. On today's The Diane Rehm Show on NPR, he was interviewed in the Washington hospice he has moved to, about many topics, including his decision to suspend treatment for his advanced kidney disease, and live out his life in hospice.[more inside]
Interesting Lead..Were George Harrison and Fred Rogers terminally sedated?The hospice movement started in this country because people were dying badly, often in pain. I have personal experience that the family is given a bottle of morphine with a eye dropper and a hint.(MetaonlineJournalism - A subsection of MetaFilter (like MetaTalk) where stories or rumors that need further investigation, research, or verification are actively worked on by webloggers, ideally working together to determine the truth of the matter.)
The spirit of hospice - from a blogger with heart.