Coda Alliance

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Empowering easier, early, end of life conversations

Coda Alliance is a community-based not-for-profit organization helping individuals and their families choose their own way – in life and at the end-of-life.

GoWish Fills Medical Care Gap Hispanics' mistrust of the medical industry ballooned in the pandemic as light shone on in...
02/08/2022

GoWish Fills Medical Care Gap
Hispanics' mistrust of the medical industry ballooned in the pandemic as light shone on inferior treatment & high death stats—due to massive communications gaps. With 52% of U.S. overall growth Hispanic, just 5.8% of doctors are Latino & only 62 for every 100,000 Hispanics speak Spanish. Efforts to close the gap come from nonprofits like Coda Alliance, with its new online GoWish Hispanic End Of Life card sorting game. “GoWish cards provide an easy way to discuss what’s important to individuals and families about illness and EOL,” said Siobhan Greene, CEO of Hospice Giving Foundation.
https//www.Codaalliance.org. bit.ly/3ouE8iu

·1mCODA International: Go Wish Builds Bridges Between People  “End-of-Life (EOL) preparation is a thread that ties us al...
02/23/2020

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1m
CODA International: Go Wish Builds Bridges Between People
“End-of-Life (EOL) preparation is a thread that ties us all together, no matter where you’re from; even when approaches might vary from country to country,

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Share what matters to you over great conversations, enjoy family-friendly activities and crafts, explore free informatio...
01/08/2020

Share what matters to you over great conversations, enjoy family-friendly activities and crafts, explore free information and resources, and learn about end-of-life care from local doctors.

Register today at http://bit.ly/2FyFD8e

Hospital Chaplain Larry Wildemuth on Living life to the fullest Life is dynamic. Anything can happen. Isn’t it best to b...
11/30/2019

Hospital Chaplain Larry Wildemuth on Living life to the fullest
Life is dynamic. Anything can happen. Isn’t it best to be prepared for that anything? Everyone who comes through those emergency room doors has other plans for their day. http://bit.ly/35yyksb

FROM THE EXPERTS: Larry Wildemuth, Minister and former Chaplain, Santa Clara Valley Medical Center, San Jose, CA talks a...
11/26/2019

FROM THE EXPERTS: Larry Wildemuth, Minister and former Chaplain, Santa Clara Valley Medical Center, San Jose, CA talks about living life to the fullest – because anything can happen.

Life is dynamic. Anything can happen at any time. So isn’t it best to be prepared for that anything? Knowing what you want at end of life; before you no longer have a chance to express what your choices are, is important for life as well as death. We, at Coda, found that when people prepare their wishes for end of life, they actually find their choice is what’s most important throughout life. It makes it easier to ‘Live their life to the fullest.”
As a Chaplain for over 22 years, I’ve seen families struggle when they have no idea what their loved one wants; then all of a sudden, they’re placed in the position of having to make difficult medical decision for another person. Most often, these families haven’t taken the time to talk about what’s important to each of them, nor do they leave information about their choices for a time when they can’t speak for themselves.

We seem to go through life as if we’re going to live forever. So, many feel why even think about dying. In fact, some believe talking about death will “jinx” them and actually lead to their deaths. I’ve learned first-hand that everyone who comes through those emergency room doors has other plans for their day.

People who are given a bad diagnosis of, say Cancer, when they visit their doctor, suddenly realize they’re mortal and will die. And, when death and dying is right in front of them, then they begin to put it in perspective. But what if death is sudden, or you can’t speak for yourself after an accident, for example? The sad thing is that most people don’t take the time to think about what would be important to them when they’re reaching end-of-life – and then, of course, it’s too late!

Many of you may have heard about the mass shooting at the well-known Garlic Festival in Gilroy, CA this year. Gilroy’s very close to San Jose. So, some of the shooting victims were brought to the hospital I work at. At the same time, many of our staff had loved ones who’d attended the event as well; they too needed to
talk.

About a week after this disaster, I was called over to a clinic to help with a family member who’d initially brought their parent in for a regular checkup. All of a sudden, this person had burst out crying. Luckily the staff realized she’d been at the shooting and was suffering from PTSD. As I sat with her, she revealed that she’d been so close to the shooter that she saw him reload his gun. She and her children felt the dirt fly up and hit them from the stray bullets. One of her family members was injured. She’d also witnessed others being shot. Over the last week, she’d been the strong one, the one everyone else could depend on. Now she was suffering. She was the one who needed help. For many, a mass shooting, or a disaster is a wake-up call as to just how quickly life can change. Quite a few find themselves playing the “what if” game, reliving the events of that day. They keep thinking what if, it had been me or my child, or my spouse or ______! You fill in that blank.

The reality is that no one knows what might happen next, especially now with all the recent shootings, plane crashes, fires and disasters. You could be driving home today, and a car comes out of nowhere and hits you and you’re not be able to speak for yourself. You’re not able to tell your family or your medical team what you want.

In the aftermath of the shooting, for example, many medical decisions needed to be made for those injured or dying. The question quickly became: Who’s going to make those decisions for those who can’t speak for themselves?

We, at CODA understand that End of Life choices are as much about life, as what one wants surrounding their death.
Read the rest of Larry Wildemuth’s post at http://bit.ly/2DhjVEF

Study Reveals How Game Changing Tool Helps You Zero in on What’s Important in Life and Death    A sneak peek at a recent...
10/11/2019

Study Reveals How Game Changing Tool Helps You Zero in on What’s Important in Life and Death
A sneak peek at a recent, yet to be published Swedish study reveals that end-of-life (EOL) conversation powered by an easy, prompting playing cards tool is a game changer. In fact, multiple countries, scrambling to obtain and translate the cards to fit their cultures and languages, are finding that they enable people to zero in on what’s important to them in life, as well as in dying.
Even in countries where discussions of death have long been taboo, there’s a growing push to allow people to make their own choices. Local governments have seen a decrease in their budget costs based on patients making their own choices – especially with options to die at home, or to not be placed on life-saving equipment, or not to continue painful, expensive, fruitless medical care. Families find that understanding loved ones’ choices makes dealing with life and death easier, calmer and more manageable. And, individuals find great relief knowing their wishes will be met.
“At end-of-life, it’s very different if it’s the MD guiding what happens. I was interested in conversations that made sure I do what the patient wants, not what I want,” emphasized Dr. Elizabeth Menkin, M.D., a geriatrician and palliative care physician. She attended a going-away party for a registered nurse from the Visiting Nurse Association and spoke with others at that gathering about the idea of creating a coalition that focused on energizing the public “to demand better EOL care”. Thus, Coda Alliance was founded, now in its 18th year. “My goal is to create a practice as they did in Obstetrics, where consumers drove the birthing experience to be reflected as a family event, not medical. We can do the same thing for end-of-life. It really is a life cycle event, a significant family experience.”
Coda Alliance and other support groups grew from grassroots efforts to help community members deal with EOL – at first with advance planning documents, which they found had value, but didn’t solve the problem. With legal document-driven, advance life planning efforts not accomplishing the expected objectives, experts began seeking methods that completely engage patients, family, care takers and medical personnel in discussions about hopes, wishes, values and goals.
According to both U.S. research and the new Swedish studies, choices printed on the 36 cards are proven to enable people to talk about death and life much more comfortably, even in cases where the subject may be somewhat forbidden. English language card choices include the following – some of the most popular to-date:
“To have those that I am close to around me.”
“To maintain my dignity.”
“To be free of pain”
“To live my life to the fullest.”

Science is Important, But Ultimately, it’s About Humanity
But, Dr. Menkin notes that while scientific proof is extremely important, the focus for GoWish is about humanity. “It’s about how we use the cards that enable people to find what matters most” in life and death. She points to Dawn Gross, MD, PhD, a former hematologist, presently a hospice and palliative care, physician, as “leading the parade” to help people find GoWish. “She’ll even pull out a GoWish pack on a plane flight,” she laughs. “Dawn uses the kind of language that really encourages a person to get down to what it is they really want.”
Dr. Gross has found a second way to benefit from the cards, besides just focusing on the individual. It’s proven highly valuable to families .
“ My mother, brother and I were introduced to Go Wish at a funeral planning workshop. Because we were family, we were invited to use the cards in a particular way. We sorted the cards for each other instead of for ourselves. What an eye opener! We thought we knew what each of us wanted, but we didn’t even choose each other’s number one card. It was like an anvil dropped on my head, just like in the ‘Road Runner’ cartoons.”
Several months later when Dr. Gross began practicing hospice and palliative medicine, she held onto the cards because she saw them as an “incredible tool” to discovering what really matters to people Asking probing questions about the cards can help people share stories that offer insight into how that person is interpreting the meaning of a card. So, Dr. Gross asks questions such as:
• Tell me what these words mean to you?
• How do I go about making that happen for you?
• These questions become especially important with cards such as “To maintain my dignity”
Dr. Gross encourages everyone to use the cards on a regular basis. She and her husband play Go Wish every year on their anniversary. And since she's played with her children, they now proactively support this annual activity. "Because life is dynamic," Dr. Gross says. “Now my kids tell me it makes a difference to the whole family to know what matters to each person.”
And, she has no problem pulling out GoWish wherever she is, even on a plane. When …http://bit.ly/2owWROy

China: Overcoming Cultural Barriers to End of Life Care. Dr. Gary Lee, specialist in Palliative Care gives us his insigh...
09/19/2019

China: Overcoming Cultural Barriers to End of Life Care. Dr. Gary Lee, specialist in Palliative Care gives us his insights into Chinese cultural influence on healthcare decisions and approaches to Palliative Care and end-of-life delivery there. For those of you who saw the movie “The Farewell,” some of this will sound familiar.

INTERVIEWER: Dr. Lee, what were the most striking differences you found in the approach to end-of-life conversations between here and China?

DR. LEE: The nurses we talked with struggle about how to do end-of-life conversations – when to tell patients – and what to tell colleagues (medical staff), who are focused on the treatment, not the person....Read the full interview at https://codaalliance.org/china-overcoming-cultural-barriers-to-end-of-life-care/

For 140 Years, A Family Has Prepared for End of Life Early. Because Stuff Happens.PHOTO: Anna Reinstein, Beatrice Kavino...
07/13/2019

For 140 Years, A Family Has Prepared for End of Life Early. Because Stuff Happens.
PHOTO: Anna Reinstein, Beatrice Kavinoky

Who better prepared to understand how to be ready for end of life at any age? Who better to appreciate that anything can happen at any time?

Families, like Larry Kavinoky’s, Coda Alliance Treasurer and Board Member, do. His family roots are packed with physician ancestors way back to 1880. Even then they recognized death as a part of life that warrants early preparation. The result: succeeding generations now carry a built-in comprehension of the importance of “Choosing Your Own Way” before end-of-life. They see it as a way to embrace life -- a great example for those of us who don’t have generations of medical personnel to learn from.
The family took to heart stories about great grandmother, Anna Reinstein, M.D the first woman physician in Western New York in 1880. Dr. Reinstein was followed by Larry’s grandparents who also made a name in the healthcare industry. Grandfather Nahum Kavinoky was one of The City of Hope founders in 1920, receiving a medal for his contribution in 1950. At the same time, grandmother, Nadina Kavinoky, M.D was almost thrown out of the American Medical Association (AMA) for practicing social medicine to benefit her patients. Luckily, one of her patients complained to her own husband who just happened to be the AMA’s Medical Director.
It’s no wonder Larry’s family is so solid in dealing with death and dying that they calmly and comfortably accept the fact that no one lives forever – best to be prepared. It’s no surprise that Larry’s mother, Beatrice Elaine Kavinoky, a former elementary and Sunday school teacher, bright and sharp at age 85, was asked to beta test Coda’s new online Go-Wish card game. And, it’s no surprise that she became one of the key people to ensure that the pioneering game met Coda’s goals to make end-of-life conversations comfortable and valuable enough to ease death and dying.
Now, each Kavinoky generation continues to follow the idea of embracing life by choosing their own way in preparation for end-of- life. Most, according to Larry, find comfort and security in knowing their wishes will be met.
For more on end-of-life conversations, and/or the GoWish card game visit the Coda Alliance Website, Before Stuff Happens: Larry Kavinoky feels a need to plan early for end of life. His physician ancestors, way back to 1880, saw death as part of life we should prepare for. So, it’s now intuitive that his family “Chooses Their Own Way” before stuff happens. See Larry’s story: http://bit.ly/30Ac6U3

PODCAST: Choose Your Own WayWhy End of Life Conversation Makes Life Itself Easier – for you, your family and your medica...
06/25/2019

PODCAST: Choose Your Own Way
Why End of Life Conversation Makes Life Itself Easier – for you, your family and your medical team
In this interview with Larry Wildemuth, Minister, former Chaplain, and Chairman of the Board for Coda Alliance, a nonprofit that deals with end of life choice, NPIQ’s Ellen Rudy explores Why End of Life Conversation Makes Life Itself Easier – for you, your family and your medical team. Even though 80% of people, have as one of their wishes, the desire to spend their last days at home with their loved ones – only 20% get that experience – those that had the opportunity to make that choice. Listen here: http:// bit.ly/CodaPodcast1

France: An Intercontinental GoWish PartnerThe close bond of France’s end-of-life organizations empowers a strong influen...
06/14/2019

France: An Intercontinental GoWish Partner
The close bond of France’s end-of-life organizations empowers a strong influence that led to some of the most comprehensive patient laws in the world. Those rules regarding dignity, respect for life and the right to choose are now being enhanced by Coda’s GoWish card “game”.
Partnering with Coda is France’s prominent nonprofit, Jusqu a La mort Accompanier La Vie (which means accompanying life until death) (JaLMaLV). The established group’s motto “Until Death, Care for Life” is closely connected to Coda Alliance. The two organizations have much in common. Run by volunteers, both groups acknowledge that their major goals are:
- To change attitudes about death by spreading the word regarding the importance of “End of Life” discussion.
o In France this is known as “Solidarity” – a dedication to changing societies attitudes about illness, aging and death
- To ease end-of-life family conversations and support the right to choose, by admitting a bit of fun into the process -- knowing that this makes a tough talk easier

JaLMaLV launched the French version of Coda’s GoWish card game with partners at their annual Congressional Conference. The cards named "À VOS SOUHAITS " meaning “In line with your wishes” were then distributed to all local groups in the country to for use in palliative care.

But benefits go far beyond palliative care. JaLMaLV promotes research and education about end-of-life preparation for all adults and children.

“We’re doing a sort of public outreach for youth and adolescents,” said JaLMaLV president Jean-Marie Schwertz. "It's a reason to discuss, to talk about anticipated directions. There is no age barrier for this conversation.”

Read more at Codaalliance.org http://bit.ly/2wLGdv9

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950 S. Bascom Avenue , Suite 1113
San Jose, CA
95128

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