The Curious Autodidact

August 1, 2017

Modern Death: a Listen and a Read

Filed under: book related,end of life,Word Related — Honilima @ 2:47 pm

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Dr Haider Warraich is interviewed by Terry Gross about how ignorant we are about the modern ways of dying and the great toll this lack of experience costs our culture daily in so many ways.

How much is too much CPR?  What age is CPR not recommended because a patient will have no quality of life afterwards? How do doctor’s cope with the various wishes of patients in crisis situations? How can we as a culture be more aware of death as a fact of life and the great cost of hope that is not matched my realism?

This is a terrific interview and may take you to an independent bookstore to buy his book.

A great listen with family and friends to elicit a profound discussion about end of life care and your wishes for just the end you most hope to have.

 

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June 17, 2016

Do we have Compassion?

Filed under: end of life,women heroes,Word Related — Honilima @ 11:56 pm

“The question, finally, is simply this: is a state sufficiently compassionate to allow the choice of aid in dying to terminally ill, competent patients who are receiving state-of-the-art end-of-life care but are still suffering?”    ~  Kathryn Tucker 

November 22, 2015

The “Double Effect”

Filed under: end of life,women heroes — Honilima @ 9:38 pm

People familiar with the end of life choice movement may be familiar with the term “double effect” and all it entails. For those who are not educated in the more subtle areas of this Barbara Coombs Lee, the Executive Director of Compassion and Choices, has written an accessible article to explain it.

October 14, 2015

What is an Advance Directive?

Filed under: end of life,helpful hints — Honilima @ 7:12 am

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Advance directive is a general term for oral or written instructions about future medical care if a person becomes incapable of stating his or her wishes. In these documents, both wanted and unwanted treatment may be specified. In Washington State, there are three types of advance directives: the Health Care Directive (also known as a Living Will or Directive to Physician), the Durable Power of Attorney for Health Care, and the Physician Orders for Life-Sustaining Treatment.

Advance directives are only part of the process. Protecting your health care choices is a three-step process:

  1. deciding what you want;
  2. communicating your intentions so that others understand them;
  3. and committing your providers, family, and health care agent(s) to the acceptance (and sometimes defense) of your choices.

September 27, 2015

Leaning Into Sharp Points

Filed under: book related,end of life,helpful hints — Honilima @ 11:51 am

Leaning into Sharp Points by Stan Goldberg is a brilliant book full of insights and practical advice about what it is to be a caregiver and what ways one can properly care for someone with intention, compassion, and love.

There were several lines that I made notes of including: “The decision to die in a hospital has the underlying premise that the length of time left to live in more important than the quality of time remaining”

Reading the book cover-to-cover in order is an option but it is also a book that can be sampled and dipped in and out of. Clearly Stan Goldberg knows of what he writes and cares about the various people he has seen to as a hospice carer. His willingness to share his experience and wisdom is a gift to all readers.

I have read many books of this ilk and this one stands out as one of the best

July 18, 2015

Mary Jo Kopechne, a Young Woman Never to be Forgotten

Filed under: end of life,media related,social justice — Honilima @ 1:04 am

Mary Jo Kopechne
gone but not forgotten…

July 8, 2015

VSED: Peace at Life’s End —-Anywhere

Filed under: end of life,social justice — Honilima @ 11:38 am

One end of life option you may not be fully aware of is Voluntary Stopping Eating and Drinking, referred to as VSED.

It’s unlikely medical people will talk to you about this option to end your life if you are suffering but it is available to all and legal nationally. It takes end of life choice out of the medical setting and will result in your end days being spent among people of your choosing instead of surrounded by strangers and machines.

Compassion and Choices has launched a new campaign to make people aware of this peaceful end of life option called Peace at Life’s End Anywhere and offers a pamphlet explaining this options and a frequently asked questions sheet to clarify for those who still have questions.

June 15, 2015

Ten Tips for Saving Money on a Funeral

Filed under: end of life,helpful hints,money saving ideas,nonprofit — Honilima @ 12:21 am

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Ten Tips for Saving Money on a Funeral from the Funeral Consumer’s Alliance

1. Talk about funerals with family members ahead of time so they all will know your wishes and you will know theirs. If your plans are mentioned only in a will, the will may not be read until long after other ar-rangements have been made. If Mom had always said she wanted something “simple” and you aren’t sure what she meant, you may end up purchasing a great deal more than something truly “simple.” Or perhaps Mom told everyone what kind of funeral she wanted, but she had no idea that it would cost far more than anyone could afford.

2. Price shop by phone or in person. Price-shopping can save you thousands of dollars. The funeral home in your neighborhood may be three times as expensive as one across town. Many of these price lists are now available on-line. By law, funeral homes have to give you prices over the phone, or hand you a General Price List (GPL) when you start talking about prices at the funeral home. If the GPL shows that caskets begin at $595, did you ask to see one if it was not on display?

3. Only buy what you want. If you are shopping for a funeral at the time of death take a friend with you, someone who will help you be sure you buy only what you want. Don’t buy more than you intended out of guilt. People often think that how much they spend is a demonstration of how much they love someone. Don’t buy more because of fears of being “different” or “cheap” or worries about “What people will think?” Funeral sales literature today commonly refers to a “traditional” funeral package (meaning elaborate and a good profit margin for the mortician), with one funeral often looking just like the next. Enjoy making your own traditions. A unique and personalized memorial observance is what others will remember. Don’t feel obligated to put on a big “show” when the deceased has been prominent dur-ing his or her lif etime. For the cremation of the author of The American Way of Death, Jessica Mitford’s family spent just under $500. Shortly thereafter, they hosted a grand memorial gathering. It was very much in keeping with Jessica’s disdain of lavish funeral merchandise but love of a good party

4. Make your own or buy online. You can find caskets or kits on-line for a fraction of the retail price. It is illegal for a mortuary to charge a “handling fee” for using a casket obtained elsewhere. Or, choose a “minimum container” from the mortuary and drape it with attractive material, a handmade quilt, or a flag. Most people know what’s involved in growing a head of lettuce or a few tomatoes and would think $10 each was an outrageous price; they probably would stop buying them. Few consumers realize that caskets may be marked up 300500% or more. A casket that is listed for $1,295 at the funeral home might wholesale for only $325. That same casket is probably available from a casket retailer for $650. 5.

5. Consider the “direct burial” or “immediate cremation” packages. These plans do not necessitate buying grand caskets, embalming, cosmetic touchups, or funeral services and processions. Cemetery space for cremated remains is generally – but not always – less expensive than the space needed for a body burial. Cremated remains can be buried/scattered almost wherever you choose. Also, if you choose one of these options, you don’t need to use a local funeral home which might cost twice as much as the one in the next town.

6. Plan a memorial service without the body present. In that case, there would be no need for embalming, a fancy casket, or expensive transporting of the body back and forth. Private family visitation and “goodbyes” can occur in the hospital or home, before you call a funeral director. Use a church, park, or community center for the memorial service without attending funeral home staff. Again, with this option, you do not have to use a local funeral home. .

7. Skip embalming. Embalming is not routinely required by law. Some circumstances may precipitate the need for embalming, but in no state is it necessary when burial or cremation is planned within a day or so.

8. Consider body donation to a medical school. In some areas, there may be no cost to the family whatsoever. In other circumstances, the cost of transporting the body may be the only cost. Generally cremated remains are returned to the family within a year or two.

9. Some cemeteries may require a grave liner or vault, but not all. There is no state law that does. If you prefer body burial, ask for a “grave liner” rather than a “coffin vault” at a fraction of the price. And again, be sure to shop around. The “outer burial container” is a way for morticians to increase their income and is an added burden on your funeral finances. With prices as much or more than caskets, remember that it is just a boxforthebox which gets quickly covered by the cemetery lawn.

10. Consider handling all arrangements without using a mortuary. Most people also don’t know that in the majority of states a family or church group may handle a death without the use of a funeral home and many families have found it loving and therapeutic. The book, Caring for the Dead: Your Final Act of Love, gives a great deal of state specific practical information, and the PBS documentary, A Family Undertaking follows the stories of several families. Both are invaluable resources for anyone choosing this meaningful way to say goodbye.

And, a bonus tip: Join your local Funeral Consumers Alliance. Some have contracts with local funeral homes for services at a reduced price for members. Some have done a price survey and have done the priceshopping for you already. Most will refer you to an ethical funeral home. There are reciprocal benefits if you move to or die in another state. Supporting an Alliance will help to keep this consumer information available for future generations, and the membership contribution is modest. Remember: Funeral directors are business people who deserve to be paid for what they do. However, it is your job, as a funeral consumer, to be well educated about your funeral choices, to determine the kind of funeral or memorial service that meets the needs of your family, and to locate an ethically priced facility that will honor your choices with dignity.

May 22, 2015

End of Life Wishes

Filed under: end of life,helpful hints — Honilima @ 7:13 am

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Even if you have done everything to communicate your own end-of-life wishes, you may find need to take the initiative and have the discussion loved ones who have not shared their end-of-life wishes with you. Here are pointers to keep in mind:

Select an Appropriate Setting
Find a comfortable place that is free from distraction to hold a one-on-one discussion.

Ask Permission to Begin this often Tender Conversation
People cope with end-of-life issues in different styles. Ask permission to discuss the topic, this assures your loved one that you will respect and honor all of his or her wishes. Here are a few suggestions:

  • “I would like to talk about how you would like to be cared for if you got very sick. Is that okay?”
  • “If you ever got sick, I would be afraid of not knowing the kind of care you would like. Could we talk about this now? I would feel better if we had the conversation in advance.”

What To Expect
Keep in mind that you have initiated this conversation because you care about your loved one’s wellbeing – especially during difficult times. Allow your loved one to set the pace. Focus on maintaining a caring manner throughout the conversation, show your love and concern:

  • Nod your head in agreement, acknowledge them with kindness
  • If appropriate hold your loved one’s hand
  • Offer a hug or comforting touch

A few questions you may want to ask about end-of-life care include:

  • If you were diagnosed with a life-limiting illness, what types of treatment would you prefer?
  • Have you named someone to make decisions on your behalf if you become unable to do so?
  • How would you like your choices honored at the end of life?
  • What can I do to best support you and your choices?

You may well encounter resistance the first time you bring up this topic, sadly death and dying is not spoken about in our culture. Don’t be discouraged; instead try again at another time.

Be a Good Listener
Be sure to make an effort to hear and understand what the person is saying. These moments, although difficult, are important and special to both of you. Some important things you can do are:

  • Listen for the wants and needs that your loved one expresses.
  • Make clear that what your loved one is sharing with you is important to you.
  • Show empathy and respect by addressing these wants and needs in a truthful and open way.
  • Verbally acknowledge your loved one’s rights to make life choices – even if you do not agree with those choices.

Having conversations with your loved ones about their end-of-life wishes can be a sensitive discussion. These conversations matter and are needed to learn about your loved one’s wishes so that those wishes can be honored at the end of life.

May 15, 2015

Pancreatic Cancer: the Silent Killer

Filed under: end of life,nonprofit — Honilima @ 12:19 am

 

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Raising Awareness of a Silent Killer: Pancreatic Cancer

What do Margaret Mead, Count Basie, Rex Harrison, Henry Mancini, Irving Wallace, Marvin Beli,  Patrick Swayze, Michael Landon, Donna Reed, Dorothy Dunnett, Joan Crawford, Steve Jobs, Phillip Levine, Jack Benny, Dizzie Gillespie, and Frank Zappa all have in common? They all died of Pancreatic Cancer, as did former President Jimmy Carter’s brother Billy, and their mother “Miss Lillian.”

Pancreatic Cancer is the #4 cancer killed in the United States amongst both men and women. It is often referred to as the “silent killer” as it is rarely diagnosed in time for treatment. It has the #1 fatality rate of all cancers. Only 4% of the patients will survive beyond five years.

According to the Pancreatic Cancer Action Network  approximately 32,180 people will be diagnosed with Pancreatic Cancer this year. Yet, “despite the especially lethal nature of pancreatic cancer, the research spending per pancreatic cancer patient is only $1145, the lowest of any leading cancer.”

Why is this? Perhaps because most people don’t even know where their pancreas is located or what role it plays on our body’s good health. It works in the production of enzymes for digestion and the production of hormones that regulate blood sugar levels. It is a gland located deep in the abdomen between the stomach and the spine.

Every 17-minutes someone in the country dies of this lesser known disease that has a 99% fatality rate.

Although it is the fourth cancer killer in the country most people do not know the risk factors or the symptoms of this type of cancer. Hence, November has been designated as Pancreatic Cancer Awareness Month.

Symptoms of Pancreatic Cancer include:

Pain in abdomen or back

Jaundice (yellowing of skin and eyes)

Dark Urine

Itching

Fatigue or Weakness

Digestive Problems

Nausea and Vomiting

Significant Weight Loss

Risk factors include:

Smoking: 2-3 times increased risk for smokers vs. nonsmokers

Chronic pancreatitis

Family history: 2-3 times increased risk if first degree relative diagnosed with PC

Diabetes

Only a small percentage of people who are diagnosed with pancreatic cancer are able to have the tumor surgically removed. More often than not, by the time the diagnosis comes, the cancer has spread and there are not at this time many treatment options.

The NW is home to one of the country’s highly-respected Pancreatic Cancer researchers, the UW’s Dr. Teri Brentnall whose work has been nationally recognized.

Thank you for reading this article and for taking a moment to be aware of some of the symptoms of these lesser-known but grave forms of cancer.

If you know someone with pancreatic cancer, or a friend who is caring for someone who has this form of cancer, I urge you to lend a hand —it is a horrible disease. This posting is meant to raise awareness and urge you to support the quest for additional research dollars to help find a cure.

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