Still Restricting Ice Cream?

When you're nearing the end of life, it's OK to eat dessert first!

Join SevenPonds each month as Tani Bahti, RN, CT, CHPN, offers practical on-hand guidance to demystify the dying process. As an RN since 1976, Tani has been working to empower families and healthcare professionals to have the best end-of-life experience possible both through education and the development of helpful tools and resources. As the current Director of Pathways, Tani is also the author of “Dying to Know, Straight Talk About Death and Dying,” considered by SevenPonds to be one of the most practical books on the topic. Founder Suzette Sherman says this is, “the book I will have at the bedside of my dying parents some day, hopefully a very long time from now.”

An ice cream cone in the hand of a person nearing the end of life

Credit: pixabay.com

When asked what she wanted for lunch, Shirley quickly replied, “Ice cream!” She winced when her daughter reprimanded her. “Mom, you know you have to watch your sweets. You have to eat something healthy.” At age 92, Shirley was dying of heart failure. For the past eight years, her daughter had provided meticulous caregiving and a carefully monitored diet.

When a person has had to manage their diet a certain way in order to control their blood sugar, cholesterol and the like, it feels unnatural, even like hastening a death, to be told those old ways can now be discarded.

But here is what I often saw in my years in hospice: As the body begins to shut down over time, insulin and many heart medicines are often no longer needed — almost as if the dying person is given a final gift in the last months and weeks of life. And as the need for medication wanes, many tasty dietary choices become available again.

The intention of indulging in these previously forbidden foods is not to hasten death, but to respond to the body’s changes and focus on quality of life as defined by the person who is ill.  Favorite foods also play a role in nourishing the spirit.

""Forbidden" sweets become an option again as death approaches

Credit: pixabay.com

I put myself in their place.  I don’t want anyone telling me what I can and cannot eat. I love sweets. I love chocolate. I get that from my mom. As she declines into her Alzheimer’s disease, her taste buds crave the stimulation of that which is either very salty or very sweet. All I have to do is mention chocolate and her eyes light up, accompanied by a big grin and smacking lips through which pass the happy noise of “Num!”

The owners of the adult care home where she resides pride themselves on providing a healthy diet. Lots of fresh veggies, free range chicken, no pre-packaged or processed foods, and only low fat, low salt sauces. Desserts are often fruit or something of the low fat and low sugar variety. An approach to be admired and appreciated, for sure! But not as one approaches her final months or weeks.

Two hands holding ice cream enjoying life until the end

Credit: pixabay.com

The staff removed the bags of chocolate I had placed in my mother’s room because “she would leave the table and go into her room to eat them”.  I say, “Good for her! I would do the same!” and they step back in surprise. Her appetite is now limited and nothing makes her happier than tasty desserts or salty nuts. Her blood sugar is fine, and the minimal swelling she gets in her feet is relieved by elevating her feet. Benefit certainly trumps burden when considering her desires and quality of life.

If I do have the rare patient whose blood sugar still spikes after eating “forbidden” foods, (creating other risks) the medical team works with the family to adjust the person’s medicines to match their intake, making sure they have a choice of what to eat and enjoy their food.  It promotes their sense of empowerment and decreases depressive episodes.

So when I am on my own death bed, nobody better take away MY ice cream!

If you want to enhance my of quality of life, let me eat dessert first!  Better yet, enjoy some with me and we will both be smiling.

Take a look at a copy of Tani’s book “Dying to Know — Straight talk about Death and Dying” to help demystify the process and find words of wisdom on many aspects of dying. 

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Monday Hearts for Madalene

Page Hodel creates beautiful hearts as an ongoing celebration of love
Handmade hearts are a tribute to lasting love

Summer Blossoms Fill My Heart With Love

It’s an honor for SevenPonds to share with our readers the story of the Monday Hearts for Madalene project, a true account of the power of love in the midst of death.

The project’s origins take us to 2005: the moment Page Hodel encountered Madalene Rodriguez and fell “instantly, dizzyingly in love with her.” The couple’s first meeting was electric, and Page felt inspired to do something unique for the woman who captured her heart. So, she began leaving handmade hearts – made from flowers, leaves, and other materials – on Madalene’s doorstep.  The hearts became a ritual, and they were there to greet Madalene as she left for work every Monday.

“To start her week with a visual reminder of our beautiful love.” Page Hodel

Just seven months later, Madalene was diagnosed with ovarian cancer and passed away on June 20th, 2006. But Page’s love for her hasn’t ceased, and she continues to make a heart for her every Monday in celebration of her life.

If you would like, you can also receive Page’s “Monday Hearts for Madalene” by emailing her at page.hodel@gmail.com with “subscribe” written as the subject. Images of the hearts can also be purchased  in her beautifully compiled book, Monday Hearts for Madelene. Please also visit her website and Facebook  page. A portion of all sales will go to the Women’s Cancer Resource Center in Oakland, California (www.wcrc.org). See more Monday Hearts for Madalene here.

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“Minimum Monument” Has Massive Impact

Brazilian artist's melting people resonate across the globe

Since 2005, Brazilian artist Nele Azevedo has been creating installation works in public spaces involving  20 centimeter tall human figures that are left to melt in the sun. These installations comprise the Minimum Monument project. While Azevedo began her exploration in time-based sculpture with just one or two figures during her Master’s work, the project soon expanded in number and scope.

Mimumum impact monument invokes collective grief

Minimum Monument in Birmingham, UK to commemorate WWI victims (Credit: boredpanda.com)

Minimum Monument has appeared in Chamberlain Square in Birmingham, U.K. as 5000 figures commemorating both the English soldiers and civilians killed during World War I. The installation also appeared in Gendarmenmarkt, Berlin, Germany, where it was intended as a comment on global warming. These tiny “melting men” have also appeared in public spaces in Italy, Norway, Cuba, Brazil, Ireland and Japan, sparking conversations on topics such as the meaning and function of memorials, ephemerality, and the preciousness of life. Indeed, we might read our own faces onto one of the many melting figures united in their shared fate.

Minimum Monument in Belfast, Ireland to commemorates Titanic victims

Minimum Monument in Belfast, Ireland to commemorate Titanic victims
(Credit: titien.net)

While traditional monuments are often made of stone and are meant to withstand climate and the ravages of time, Azevedo offers us a chance to reconsider memory as something that is alive in each moment, continually enlivened with each recollection, and carried in living bodies rather than the inert world. The temporality of the ice figures recalls our personal and collective myths, calling us into an urgent awareness of the past’s influence upon our present reality. In the instance of the Birmingham and Belfast monuments, the historic disasters of human error they commemorate are brought roaring into the present by the deep emotions they still evoke. By bearing witness to the grief of those who still feel the repercussions of these historic events, we can all be humbled for a moment at the way our actions have profound effects upon one another, often beyond the scope of our awareness. We remember that the past lives in us and through us, and that we are the transformers of our destiny.

Brazillian-born artist Néle Azevedo

Brazilian-born artist Néle Azevedo
(Credit:forensicgenealogy.info)

In the “Melting Men” installation commenting on global warming, we are called to mourn our collective failure, which is actively contributing to changing lifestyles because of the earth-harming practices of ecological manipulation and resource extraction. The memorial functions as a mirror in which we see our present-day selves reflected by the past. Witnessing g the past dissolving like ice figures in the sun calls us to action going forward, tasked not simply with carrying our memories, but with becoming transformed by them, and having our choices influenced by this new perspective.

Grief is always transformative. But unlike the dark night of the soul to which it is often likened, it functions like the sun’s heat to burn away anything which does not last, and reminds us of what truly can withstand the test of time.

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What Are Some Implications of the California End of Life Options Act? An Interview with Sarah Hooper: Part One

An expert on medical-legal issues weighs in on the new physician-aid-in-dying law

Today SevenPonds speaks with Sarah Hooper, the Executive Director of the UCSF/UC Hastings Consortium on Law, Science & Health Policy and Adjunct Professor of Law at UC Hastings College of the Law in San Francisco, California. A recognized expert in medical-legal issues in the area of end-of-life decision making, Sarah has been instrumental in providing clarity around California’s recently implemented End of Life Options Act for both medical professionals and the public at large. Today, she offers us her insights into the new law and its anticipated impact in the state.

A photo of Sarah Hooper in front of law books

Sarah Hooper
Credit UCSF

Kathleen: Thanks so much for speaking with me today, Sarah. I’d like to start out by asking you a little bit about your involvement with the End of Life Options Act. Were you instrumental in drafting the law?

Sarah: No, not at all. I and my colleagues at the Consortium of Law, Science & Health policy have followed the law closely as it moved through the legislative process, but we were not directly involved in drafting the law or lobbying for or against it. As public educators, our responsibility is to provide information and guidance on the End of Life Options Act now that it has been signed into law by Gov. Brown.

Kathleen: So your role is primarily public education and interpreting public policy?

Sarah: Primarily, yes. The consortium was formed initially as a means of integrating the various disciplines involved in research, policy-making and policy implementation in the areas of elder care, health-care decision making and end of life. Early in my career, I realized that these issues transcend professional boundaries, and I wanted to help facilitate a more integrated approach to the extraordinarily complex bioethical issues involved. I worked closely with Rebecca Sudore, who has been a pioneer in promoting Advance Health Care Directives and end-of-life planning. This has evolved into a greater emphasis on outreach and public education.

Kathleen: The End of Life Options Act, which gives terminally ill patients in California the right to end their own lives with the help of a physician, was a very hotly debated piece of legislation. Some disability advocacy groups, in particular, objected strongly to the law. What were some of their objections, and do you think there is validity to their concerns?

Sarah: The main concern articulated by those who object to the law is the fear that the process could be abused — that the elderly and the disabled could be pressured into choosing to end their own lives. However, the statute clearly addresses that issue with many built in safeguards, including a very precise definition of who is eligible to take advantage of the law.

Kathleen: The law only allows persons with a life expectancy of under six months to request aid in dying, is that correct?

Sarah: Yes. The person must have a terminal illness and the prognosis must be certified by two physicians, both of whom must be experts in the patient’s disease. So, for example, if the person requesting aid in dying has cancer, two oncologists must state that his disease is terminal and his life expectancy is six months or less.

Gov. Brown signs the End of Life Options Act (Credit: vice.com)

Gov. Brown signs the End of Life Options Act
(Credit: vice.com)

Kathleen: Are there other safeguards in place that protect patients who may feel that they are being pressured by others to end their own lives?

Sarah: Yes, there are quite a few. First, patients who wish to request aid in dying must make the the request verbally to their attending physician. At that time, the physician is required to ask them if anyone has tried to influence their decision and counsel them on other options that are available, such as hospice and palliative care, social services, and options for managing physical pain. Then the patient must wait at least 15 days and make the verbal request again. After that, they are required to put the request in writing. It’s a long process that requires a great deal of documentation by the patient and the physician, all of which is intended to ensure that the patient is fully informed about their options and is making the request voluntarily. 

Kathleen: Some who object to the law believe that it sends the message that life is not worth living if you have a terminal illness. How would you respond to this?

Sarah: In my opinion, that’s a misguided view. People who choose aid in dying want to live, but that option has been taken away from them. They are not choosing whether to live or die: They are choosing the timing and manner of their deaths.

With that said, I also believe that we as a society do not protect vulnerable populations as well as we can or should. We are making progress with things like hospice, palliative care, and long term care, but we are still a long way from providing the full spectrum of support services that is needed to help those who are nearing the end of life live in a manner that’s consistent with their wishes and their needs. 

Please come back next week for Part Two of Sarah’s interview.

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Our Weekly Tip: Remember Your Loved One With Their Favorite Food

Connect to shared moments with a belly-and-soul-nourishing meditation
Food nourishes the soul during grief

Credit: foodandwine.com

Our Tip of the Week: We often connect with our loved ones over necessary, daily things such as food. Sharing a meal together is one of the oldest and most profound ways of bonding, because it creates the space for us to nourish ourselves and each other through sharing food, time and our presence. Some people choose to share food in sacred silence, while others like to share their words, songs and laughter along with the main dish. However you choose to tap into this primal way of connecting, you can continue that relationship with a loved one whose body has died. Ask yourself: What was their favorite food? What foods did we both enjoy? What kind of food did we create special memories around?

Large amily gathering over food at a memorial

Credit: normancarrsafaris.com

How-to Suggestion: From the inquiry above, choose one food that helps you feel close to your loved one. Whether it is a dish that requires careful, time-intensive preparation or something quick and easy, make the process slow and mindful, thinking of all the nourishing memories associated with that food. You may also use this time to speak with your loved one or pray for them in your own way. Even if the food requires a simple wash and chop (like an apple) or is something ordered from a restaurant, you can make the process your own by choosing to connect with your loved one and bring them into the experience with you.

For a beautiful way of sharing memories, prepare the food with others who are also grieving or remembering at this time. This food meditation can be done at any time, but may prove especially potent when preparing vittles for a funeral or memorial, a one-year anniversary of your loved one’s passing, or on their birthday. Just before you eat, put aside a little bit of the meal on a piece of bark or a leaf and leave it outside as an offering to your loved one’s memory or spirit — as a way of inviting them to sit with you at the great banquet table of the earth, where birth and death dance together to bring forth the soul-nourishing stuff of our lives.

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Book Review: Gentle Willow: A Story for Children About Dying

Amanda the squirrel and Little Tree learn a hard lesson when their beloved friend Gentle Willow falls ill

Cover of book Gentle Willow shows squirrel climbing in a tree that later becomes terminally ill“Gentle Willow: A Story For Children About Dying” is a beautifully conceived little book written for children dealing with terminal illness. There are a number of wonderful books out there to help explain the dying process to children. But “Gentle Willow” is unique in that it’s specifically written for children who have terminal illnesses and for the children close to them.

Author Joyce C. Mills spins a sensitive story about three friends: Amanda the squirrel and her two tree friends, Little Tree and Gentle Willow. One day, Amanda is climbing up Gentle Willow’s trunk and notices that Gentle Willow has fallen ill.  Amanda assures Gentle Willow that Gentle Willow will feel better tomorrow. But, Mills writes, “many tomorrows came and Gentle Willow did not feel better.” 

Little Tree and Amanda grow concerned about their friend and call on the tree wizards, Fixump and Imageen, to help Gentle Willow. Fixump and Imageen assess Gentle Willow’s condition and recognize that Gentle Willow has developed a disease that cannot be cured. The two tree wizards explain to an indignant and distraught Amanda that they can administer tree sap to help Gentle Willow feel stronger and herbs to help her feel better, but they cannot make her all better.

When Amanda asks what will happen to Gentle Willow, Fixump and Imageen explain that Gentle Willow will start to look different as time passes. Preparing children for the progression of a terminal illness requires preparing them for the physical changes they’ll witness as the person with the illness begins to deteriorate physically. Fixump and Imageen appear to be well versed in the art of explaining the journey of terminal illness.  They explain that there are things each of Gentle Willow’s friends can do for Gentle Willow: They can sing songs and tell stories, and each of these will “help her feel a special medicine called love.” The tree wizards comfort Amanda and Little Tree, telling them that while they won’t be able to see Gentle Willow the way they see her now, they have been given special gifts called memories that will help them continue to recognize her in things like songs and the wind as time goes on.

Child getting breathing treatment for terminal illness

“Gentle Willow” explains serious illness in language children can understand
(Credit: essentialkids.com.au)

One day, Gentle Willow tells Amanda that she is scared—she doesn’t want to change form; she wants to stay a tree. Amanda, at first at a loss for words, notices the yellow butterflies flying through the air. She comforts Gentle Willow with the story of the caterpillars changing form to become the yellow butterflies who have flown to Gentle Willow’s branches when they needed a rest.

This wonderfully illustrated, simple, and sensitive story touches on the range of emotions children (like adults) experience when confronting death:  anger, fear, sadness, compassion, acceptance. It teaches children simple, loving ways they can show up for their terminally ill friend.  It teaches about the comforting power of love and songs and stories, and about the ways our loved ones live on through memories.

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