The Curious Autodidact

March 6, 2015

Vancouver Courier: Dead of Winter

Filed under: end of life — Honilima @ 11:40 am

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Death and taxes, what else do we have in common, putting our pants on one leg at a time? Why can we talk so easily about pants and taxes and not about death?

A newspaper series, from our neighbors to the north, tackles just this topic. Pat Johnson, writing in the Vancouver Courier has begun a series called “Dead of Winter:  Death Mourning and Rituals.”  I found these to be the most interesting Viewing Death the Traditional Way and Burial or Cremation to be particularly of interest. The more we as a cultural can normalize death as a part of life the healthier we will all be.

March 2, 2015

Wonder Mom: Debbie Ziegler

Filed under: end of life,social justice — Honilima @ 1:16 pm

Shouldn’t Debbie Zielger the mother of Brittany Maynard have a cape? She is a super hero.

If you think that one person can’t make a difference you haven’t read about how Brittany Maynard.  Her willingness to speak out, about her quest for a peaceful death before brain cancer took away all quality of life, raised the country’s awareness of a decent death. She garnered attention because she was so smart, young, attractive and articulate.

Amid the grief, of losing her only daughter, Debbie Ziegler has stood up to continue her daughter’s campaign to bring right to die legislation to other states. She is now working on the campaign in California where they were living before Brittany’s diagnosis made them decide to establish residency in Oregon. They moved to where palliative care and hospice were so strong as a result from the ongoing quest for end of life choice. Oregon has lead the way for more end of life conversation with their Death with Dignity law that was established there in 1994 with Measure 16.

Brittany is a hero but it’s not hard to see where she got her passion and intelligence if you have seen her mother Debbie. Here she is recently talking about her daughter with Dr. Oz.

 

“My dream is that every terminally ill American has access to the choice to die
on their own terms with dignity. Please take an active role to make this a reality.”
Brittany Maynard, October 24, 2014

March 1, 2015

Knocking on Heaven’s Door

Filed under: book related,end of life,media related,women heroes — Honilima @ 11:26 pm

Read the book Knocking on Heaven’s Door by Katy Butler, or listen to the interview on WAMU’s Diane Rehm show, or read the review of the book in the New York Times. Butler’s parents were educated determined people that were independent thinkers and involved in their community. When her father fell ill she found that the doctors were paid to do things to expand not enhance his days. Her story is a personal and well-told tale of a nightmare too many people fall into when the medical system takes over with end of life care. This is an important book about medical over-treatment and end of life choices that will serve as a cautionary tale for most and make people pause before the pace maker choice is made in haste.

February 24, 2015

Who Gets to Decide When to End Life Support?

Filed under: end of life,media related — Honilima @ 11:13 am

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Although I am generally not a fan of Huffpost Live or of celebrity stories but this is a great discussion of who gets to decide when to end life support. The case is that of Bobbi Kristina Brown, who is 21 years old and the daughter of Whitney Houston. She has been in an induced coma for weeks. The experts tapped for this segment are excellent and features Seattle’s own UW Medical Center’s Dr. Randall Curtis.

You can also read more here in a piece written by Candi K. Cann entitled “Letting Someone You Love Die.” This is an important discussion to have with your loved ones, beyond just the decision maker, in case you are unable to make your own choices at the end.

February 23, 2015

Women Hero: Barbara Mancini, Daughter, Nurse, Advocate

Filed under: end of life,social justice,women heroes — Honilima @ 12:19 pm

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Barbara Mancini is a former Pennsylvania Emergency Room nurse who was caught up in a legal tangle for over a year after caring for her elderly father at the end of his life.

It is everyone’s worst nightmare to see a loved one suffering without relief and ending up in court for a year costing over $100,000 in legal frees and losing one’s livelihood as the result of what you saw as the most loving of care. Fortunately in February 2013 charges against her were dismissed and she is now a national spokesperson for Compassion and Choices.

Here is an interview about her case on the Diane Rehm show from 2013, a link to her case’s details on the Compassion and Choices website, and an article about Brittany Maynard reaching out to her at the very end of her life. Here is the segment that the CBS show 60 Minutes did on her too.

February 18, 2015

DWD in Good Housekeeping? Wow, Watch out for Flying Pigs!

Filed under: end of life,media related,women heroes — Honilima @ 2:13 pm

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Let me first say I had no idea that Good Housekeeping Magazine was still being published. For someone my age who grew up with the Good Housekeeping seal of approval it came as a surprise. Then let me say I thought I’d see flying pigs before I’d see this type of story featured there but indeed it was a pleasant surprise someone who had worked in the decent death movement as I have. This is the story of Jennifer Glass and her activism to make Death with Dignity the law in California and beyond. Then today the same day this story about John Jay Hooker, a Tennessee man with similar convictions. This on the heels of this terrific segment on the Diane Rehm show yesterday featuring one of my heroes Barbara Coombs Lee who is not only a trained nurse practitioner but also a lawyer. She is one of the crafters of the 18-year-old Oregon Death with Dignity Law. For those that don’t know Diane’s husband died after stopping eating and drinking this past fall after finding his days with Parkinson’s Disease were not worth it any longer. He had sought help from his doctor who told him there wasn’t much to be done, this incensed both John and his wife Diane and she is working to continue this dialogue. The point was brought up should these decisions be the patients or left in the hands of the medical profession? I found Dr. Byock’s comments interesting but I wondered if he has ever sat at the bedside of someone with pancreatic cancer as I have. It is a brutal way to go and the ability to quell the suffering and pain lack efficacy. Here is another older article from the New York Review of Books that also may edify you further. I think we have gained traction in our quest to make end of life choice a part of the national dialogue, many thanks to Brittany Maynard and her family for their many appearances that helped bring this forward.

February 17, 2015

End of Life Behind Bars: Serving Life

Filed under: end of life,media related,social justice — Honilima @ 2:31 pm

Serving Life (2011) Poster

Few of us have stopped to think what it would be like to end your life behind bars, but for many in our prisons this is the reality of where their last breaths will be taken. Serving Life is a movie that looks at the inmates that serve as hospice workers behind bars in Angola Prison in Louisiana where the average sentence is 90 years. NPR did a segment when the movie first came out that may peek your interest in seeing this film that has been streaming on Netflix off and on.

In a country that is in denial about death this is an amazing look at how one person can make a huge difference in people’s end of life journey even in the most difficult of circumstances. After watching this movie you will have a different viewpoint on the compassion. You will see that even the most hardened prisoners are capable of great decency and you will begin to think differently about what kind of a contribution anyone can make to another’s journey.

January 7, 2015

Cost of Hope: Amanda Bennett’s Book Should be Required Reading

Filed under: book related,end of life,media related,women heroes,Word Related — Honilima @ 3:01 pm

 

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How can you not consider Amanda Bennett a hero after listening to her fifteen minute Ted Talk? She is a Pulitzer Prize winning journalist who has worked for the Wall Street Journal and the Oregonian.

Her talk follows her book entitled “The Cost of Hope” about her journey with her husband in the last chapter of his life and the ridiculousness that surrounds end of life over treatment in America. She urges everyone to come to grips with the fact we are all going to die and the cost to everyone for the over treatment that often doesn’t add to one’s quality of life at the end.

If you want to listen more here she is on the Diane Rehm Show out of Washington DC, in 2012, talking to Diane whose husband soon would have his own end-of-life struggle in 2014.

My friend Maryanne made this book the last one she read and thanked me for sending it along to her. She asked me to “keep up the good fight”, and I indeed have tried to keep the dialogue about death a natural part of life not something hidden. Indeed it is one of the few commonalities we will all share no matter what your education, background, or home address.

December 10, 2013

Einstein’s Words Live On…

Filed under: end of life,helpful hints,Word Related — Honilima @ 10:08 am

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Our death is not an end if we can live on in our children and the younger generation. For they are us, our bodies are only wilted leaves on the tree of life.

~Albert Einstein

November 24, 2012

What to Say to Someone Who is Sick

Filed under: end of life,helpful hints — Honilima @ 11:43 am

Often we struggle with what to do or say when someone is sick and instead of risking saying the wrong thing we say nothing — leaving the impression we don’t care.

Offering to give a family caregiver an hour off away from the house is a gift that is not easily forgotten. Sending the mate of someone who is ill a card saying how much you are thinking of them and their struggles is also very kind. Generally they are equally as scared and unrested, stressed and trying to put on a happy face for all involved.

Sending a small hand-written note gets attention.

Sometimes instead of putting on a smile and giving a “buck up” type talk it’s best to just say “This stinks.. doesn’t it?” and letting the person talk instead of jabbering.

Bruce Feiler, writing in the New York Times, offers some hints in an article called ” ‘You Look Great’ and Other Lies

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