November 1 – Dia De Los Muertos

Time to resume blogging!     Last night our wonderful Brattleboro Area Hospice (BAH) held it’s 11th annual Dia De Los Muertos Celebration.  I have no idea why I never attended before – it was such a blessing to be there.  Hallowell, the Hospice Singing Group gathered and sang — candles flickered and Spirit was definitely present.  Below you will find the write up that accompanied the  BAH announcement  so you can read about a very different way of viewing death – a happier one.

Dia De Los Muertos is one of Mexico’s traditional holidays reuniting and honoring beloved ancestors, family and friends.  The historical roots of this celebration date back more than 3,000 years to the pre-Hispanic cultures of indigenous people native to Mexico and Meso-America.  Life was seen as a dream. It was believed that only in dying was a human being truly awake and the soul set free.  Death seems to hold no terror and is always with the people in their art, their legends, and their religion.  Death was not a mysterious and fearful presence but a realistic recognizable character as much a part of life as life itself.

Dia De Los Muertos is important for the family to maintain good relationships with the dead for it is they who intercede and bring good fortune to the living.  It is a time to come to terms with our mortality and become aware of the cycle of life and death. It is a day for honoring our beloved ones.

Traditionally, it is a time when family members share stories remembering their lives together.  A special altar is made and adorned with pictures of the deceased to remind the younger generation of their family roots.  They picnic with their loved ones offering food and drink to strengthen spirits enough to return to their other world.  The skeleton figures and pictures displayed during this fiesta represent the spirit still living after leaving its flesh on this earth.

The altar is the focal point to observing the Dia De Los Muertos.  It is constructed in the home and/or at the gravesite or business establishment.  Entire families construct altars as an annual commitment. Beginning in mid-October, children and adults prepare to welcome the souls of their dead relatives and loved ones, who return home at this time each year to make sure all is well and that they have not been forgotten.   From http://www.olvera-street.com/ 

Common Misconceptions About the
Day of the Dead
Celebrations excerpted from May Herz

The Day of the Dead honors our relatives who have died, not death per se. We welcome the opportunity to reflect upon our lives, our heritage, our ancestors and the meaning and purpose of our own existence.  Altars or ofrendas are not for worshiping but for offering our love and remembering departed family members.

Mexicans have celebrated the Day of the Dead since 1800 B.C., so this is not the Mexican version of Halloween. It is a family time and is not scary or morbid.

It is generally not a sad ritual, but a day of introspective happiness as we remember our loved ones. Because it’s unfamiliar it may seem a “strange” ritual, yet it’s very similar to visiting a grave and leaving flowers or stuffed animals, or lighting a candle to remember our deceased loved ones.

Time to Grieve…

I had been having a hard time and a few weeks ago came to the conclusion with my therapist that it would be wise to take some time off  to grieve…  to mourn a series of  recent deaths in my own life.

The next day I was thinking how in the past two and a half  years  I had been  reading, thinking and talking   about good end- of- life choices  but knew  little about how to mourn!  Several years back I’d done  Bereavement volunteer training but what would I actually DO now –  for myself ???   I phoned our local Hospice  asking for  Connie Baxter,  the Bereavement coordinator.   Connie made time to see me right away!  She listened carefully and we evolved a plan which I have started on. (Yay!)

Also, Hilary has a new job.  Thus,  for a while, not much new will be happening with Sustainable Aging. There’s always plenty of work that should be done ona website however but we won’t remove ours in the meantime.   There are  good resources here  and we don’t think you should have to do all that footwork from scratch.

We are wishing you a good and gentle Spring,

p.s.   If you haven’t, do  sign up for  The Conversation Project newsletter <conversationproject@ihi.org>.  It comes out monthly and is an excellent way to keep up to date on the  progress in end-of-life conversations.

One of the thought-provoking articles in the March edition is   “The Top Five Regrets of the Dying”   The Guardian, February 1  by Susie Steine  r” Bronnie Ware, an Australian palliative care nurse, takes care of patients during the final weeks of their lives. Over her career, she has documented some of the things that people say they regret most at the end of their lives and put it into a book called, “The Top Five Regrets of the Dying.”

Read the rest of the article here.

END OF LIFE NEWS continues…

At the moment it appears that I can’t insert a link to a Health Affairs article without having a subscription. For now   I will just alert you to the article which is  noted in the  Institute for Healthcare Improvement NEWSLETTER.   (See below)  It tells about  about ten organizations that are now working on getting the conversation happening internally – something Hilary and I believe is essential to changing the cultural attitude toward end of life…

Meanwhile – We are  working on a breakout session for the SLOW LIVING SUMMIT  in June plus plan to make some needed changes on this website. We’d love to hear what you are thinking and doing.

Conversations on End-of-Life Care in Health Affairs

Health Affairs devotes its February edition to the importance of engaging patients in their health and health care. Leading off this special issue is an article by Maureen Bisognano, IHI President and CEO, and Ellen Goodman, Co-Founder and Director of The Conversation Project. In “Engaging Patients and Their Loved Ones in the Ultimate Conversation,” Bisognano and Goodman describe the alarming disconnect between patients’ wishes for end-of-life care and what actually transpires. Two complementary initiatives —- The Conversation Project and Conversation Ready —- aim to bridge this gap, sharing the goal that everyone’s end-of-life care wishes be expressed and respected. The Conversation Project is a public campaign that encourages everyone to discuss their wishes with loved ones “at the kitchen table,” and to take advantage of newly created practical tools and resources to help initiate these crucial conversations. IHI’s “Conversation Ready” initiative comprises 10 pioneering organizations committed to designing a set of changes that will enable them and other health care organizations to become ready to receive, record, and respect patients’ unique and specific end-of-life wishes.

 

A Ground Swell of Sanity!

I won’t write much here — have to head out in minutes but I just followed a link from an article in the most recent newsletter from   The Conversation Project. org   to  http://www.considertheconversation.org   It’s a breathtaking journey!

Incredible!  Spend time at either conversation website – spend time poking around ours! With 100% respect for your personal values  these sites  give you the opportunity to look at information from many sources and explore it in the crucible of your own beliefs.    It  could  make a HUGE difference in the lives of everyone you love!

Welcome this conversation into your life ! 

Playing God?!?

When  yet another conversation included the phrase “Playing God” I decided I needed to write this now!

RI Dec 29

In the arena of death-  what exactly is playing God?  It seems to me that it’s a form of  blindness to say that allowing a natural death is playing God while preventing a death using multiple high-tech solutions is NOT. Maybe we need to accept that that is what we humans do these days no matter what .. and then figure out how to be as kind and wise as possible.

This is not a simple either/or matter.  What is clear to me is that it is crucial to talk LOTS and LOTS about your beliefs, values and goals for living. It’s complex.  I’ve discovered  nuances that  I never imagined.

On November 5th, 2012 I drove to the hospital 3 hours away where my  nearly 96 year old Dad had become a patient.  He’d gone to the ER  to check on pain in his hip from a fall the prior Wednesday.  The X-rays didn’t show any breaks but checking him over the ER doctor said ” You have pneumonia and we need to put you in the hospital immediately.” Even though Dad was experiencing no chest pain or shortness of breath here was something that could be treated! No one stopped to look at the whole picture and talk with Dad about what his quality of life was like in general, what choices he had and their possible consequences. Read the full article…

Birth and Death … What is possible?

I’ve been away from writing for a bit because I was lucky enough to be a support person during the hours of labor before my first grandchild was born and her first days at home.   Puttering in the background-washing dishes, answering the phone, doing whatever  I could do… it was lovely to be able to help as much as possible and be out of the way the rest of the time! I found myself thinking how this is definitely what I hope for when I am dying – to be at home with the people I love around me.

Here I am with granddaughter Iris Marie! The new family  thankfully lives close enough for me to able to get a weekly grandmother fix.   And I have returned to the world of Sustainable Aging.  On Monday, the 29th, Hilary and I are giving the first session of  our  Hospice sponsored world cafe’ on Advance Care Directives.  We’ve made some changes in the format and are looking forward to this next step.

But before any more time passes I want to mention two excellent books.  One is entitled The Long Road Called Goodbye: Tracing the Course of Alzheimer’s by Charlotte Akin 2000 Creighton University Press.  It’s the personal story of a daughter who also had a job, a husband and two daughters, and how she managed the care of her mother.  It gives a clear picture of coping with a parent’s Alzheimer’s and includes  a lot of factual information. Very readable, it gives a valuable perspective when you are thinking about your own wishes for the end-of-life.

The other is  Dr. Ira Byock’s excellent book entitled  THE BEST CARE POSSIBLE: A Physician’s Quest to Transform Care Through End of Life! 2012 Avery. There isn’t one page of the 295 that doesn’t handle the issues respectfully and thoughtfully. There ARE solutions out there.

The very best care possible! Isn’t that what we truly want — for ourselves and for our loved ones?  Isn’t that the bottom line? What the best care looks  like will be different for different individuals and families but the way to get even in the ball park of what you would hope for is to think about it, talk about it, write it down and talk about it again and again.

I hope the past month has gone well  for you.   I’m glad to be back in touch.

 

 

 

 

Speaking YOUR Truth about Death

In just one night a moonflower goes from being a bud to a wide open flower. By morning it has completed its life —

Having just written “my story” on the CONVERSATION PROJECT form, I want to recommend that you take a moment sometime soon to share yours -whatever it may be.  Hopefully with all the current attention to the issues of possible medical intervention at the end of life you will take the opportunity to consider your personal truth and to talk about it and document it.

If you live in or near Brattleboro you are warmly invited to visit the website of the Brattleboro Area Hospice  and sign up for their inservice – if there is still room. Priority is being given to  Hospice volunteers.

Another way to sign up is to let us know you want to attend via this form:

 

A Conversation Worth Having!

 

We are very excited about a new initiative that was launched just two weeks ago, The Conversation Project!   With a stellar board and personal stories as well as statistics, they are focused on changing the culture at large – about having it become customary for  folks to think and talk about their end-of-life goals.  On their website you will find a well designed “starter kit” that helps you think about your personal priorities. We are thrilled to discover their nationwide project and  are looking forward to further conversations with them about our success using the World Café model. Read the full article…

Advance Care Planning: It’s About Goals

An important series of articles regarding advance care planning was recently published in Nursing Economics. This is an important collection…rich in discussion and references. Just the kind of thoughtful insight that is needed to understand the challenges and opportunities we face in end-of- life issues.

One of the articles, “Community discussions: a vision for cutting the costs of end-of-life care”, by Dorothy Wholihan and James Pace makes a bold point; effective advance care planning can serve to improve care and also save a health system money. I consider this to be an important article because it goes where few wish to tread; associating cost savings as a product of advance care planning.

There is ample peer reviewed evidence that demonstrates we can achieve improved care and cost savings with thoughtful advanced care planning.  The challenge is to separate the two – Joanna and I have solved this dilemma with our facilitated conversations.

The article reminds us that effective practices in advance care planning have come a long way from the early days of the Patient Self Determination Act; a time when those being admitted to the hospital were offered a perfunctory discussion about ones wishes should something go wrong. I think we can all agree, there has got to be a better time and place to have this conversation.

Wholihan and Pace see the bigger picture as they emphasize goals for care and not just a discussion about specific interventions. This is completely aligned with our work at Sustainable Aging®. Our open-ended community discussions using the World Café format is the perfect vehicle for people to explore for themselves their goals for end-of-life care.   As the authors suggest and we agree, we should “explore end-of-life choices long before the end of life.”™

Note: The hyperlink above will direct you to an abstract of the article. If you wish to receive the entire article please contact me and I will seek permission to post it on SustainableAging.org.

The best and most loving care possible

August Full Moon

A  full-moon middle of the night insomnia (without having ANY of the delicious looking chocolate that was served last night – darn- I might as well have indulged) got me poking around the Internet.  One of the best  finds was a PBS OPEN MIND interview about palliative care.  It’s about half an hour long so you may not have the time to watch now – but if you or anyone you know wants a greater understanding of the role of palliative care here’s the link :  http://video.pbs.org/video/1824648879 .

There is no lack of good information out there!

However, the question remains, ” how do we  increase the number of folks who take the time to think ahead and map out their end-of-life wishes?”   As Dr Meier states,  our culture is one where  despite the reality that some form of dying  is the only event that is absolutely inevitable we avoid discussing it as much as possible. Meanwhile we  spend tons of  time figuring out and planning what we want  for just about everything else.  Perhaps there’s some sense that if we don’t think about dying we won’t really have to do it.   Many of us spend far more time thinking about a one week vacation than exploring the posible paths  for the journey we are sure to take sooner or later.

Palliative and hospice care have been proven to  make the quality of  life and death so much better.  It has been shown that those who have palliative care generally live longer and better.   Hopefully more people will begin to explore the possible options ahead of time.  Thanks full moon for getting me to  this particular video.