The group that gathered online, including “regulars” and some first-timers, had a range of interests including logistics associated with natural burial, one’s agency as it relates to end-of-life decision making, the balance of medicine and a person’s wishes, “being” there for others, and communicating with someone recently diagnosed with breast cancer who has chosen no surgery or radiation
· Numerous people shared experiences related to talking with people who had been diagnosed with cancer – not everyone around the person may agree with their treatment choices (or non-treatment choices). Common views revolved around respecting and trusting their wishes, walking the walk with them, and being present for them. It was noted that it may be easier to do this with someone who is not a close friend or family member. The “balancing act” between use of medicine (which is amazing and can keep us going “forever”) and ”letting things be” is a challenge. Supporting people to die on their own terms and respecting their wishes for their life, and how they die, can be difficult – but is very important. A comment was made to “respect the beliefs of others, take what you like of those thoughts, and leave the rest” and support the person. Medicine and treatments may impede living. Again, that balance….
· The “C-word” was described as often a shock – is that the other side of hope? Is when it happens a mark of being a grown-up – the “end of innocence”?
· We chatted about personal agency in hospital settings where the environment is highly structured and may seem like “a machine” – is the death process about losing agency?
· Natural burial – must one hire the services of a Funeral Director? In Nova Scotia, if you are paying someone for services related to body care and preparation, that person must be a licensed funeral director. On the other hand, if family and friends are comfortable with the tasks, they can handle the whole process – an end-of-life doula can provide guidance and support as well.
· Louisa was in Mexico for the chat and noted that images of death were everywhere (lots of touristy items with dancing skeletons, and Day of the Dead items, etc.), and comfort with death was so much greater there. This resulted in a comment about someone taking their grandchildren to visit the cemetery where natural burial graves had been purchased – it was a positive experience with the grandchildren (aged 9-14) – and we had further discussion about the importance of making death part of the life cycle – a normal topic that helps children accept it. Death is not an option.
· It can be a challenge when parents or caregivers have different perspectives about communicating with children about death. Some people may not want to use the word “death” while others speak openly. Communication is critical – what words and language you use are important – e.g., “put to sleep” for pets can be damaging language as children may end up fearing sleep!
· Not all groups want to engage in conversation about death – it may not align with their faith or focus – they are just busy living.
· Some people who are approaching end of life know it, and may be ok with it – and are more concerned about those they will leave behind.
· Spending time with someone after their death is important – we are often too quick to call a funeral home and have the body taken away. The permission of time is helpful for the grief process – we are a long time dead – take time to be ready before having a body removed.
· When you know you are going to die, time matters! Be more aware of how we live and the choices we make – don’t waste time!
· Great topics that could come up again – language around death, how we feel about getting older, communicating with children…
Several books and resources were suggested by participants:
Documentary: Her Last Project – the story of Nova Scotian physician, Dr. Shelley Sarwal, first person in Canada to have chosen M.A.I.D. to also have organ donation – read about it here and watch the 44 minute documentary on Gem or on Youtube
Podcast: The Thrilling New Science of Awe – from Keltner and his Greater Good Science Center at Berkeley
Netflix Series: Good Omens - A tale of the bungling of Armageddon features an angel, a demon, an 11-year-old Antichrist, and a doom-saying witch.
Movie: A Man Called Otto - Otto (Tom Hanks) is a grump who's given up on life following the loss of his wife and wants to end it all. When a young family moves in nearby, he meets his match in quick-witted Marisol, leading to a friendship that will turn his world around.
A matter of death and life– by Irvin D. Yalom and Marilyn Yalom
Internationally acclaimed psychiatrist and author Irvin Yalom devoted his career to counseling those suffering from anxiety and grief. But never had he faced the need to counsel himself until his wife, esteemed feminist author Marilyn Yalom, was diagnosed with cancer. In A Matter of Death and Life, Marilyn and Irv share how they took on profound new struggles: Marilyn to die a good death, Irv to live on without her.
Awe: the new science of everyday wonder and how it can transform your life– by Dacher Keltner
Awe is mysterious. How do we begin to quantify the goose bumps we feel when we see the Grand Canyon, or the utter amazement when we watch a child walk for the first time? How do you put into words the collective effervescence of standing in a crowd and singing in unison, or the wonder you feel while gazing at centuries-old works of art? Up until fifteen years ago, there was no science of awe, the feeling we experience when we encounter vast mysteries that transcend our understanding of the world. Scientists were studying emotions like fear and disgust, emotions that seemed essential to human survival. Revolutionary thinking, though, has brought into focus how, through the span of evolution, we’ve met our most basic needs socially. We’ve survived thanks to our capacities to cooperate, form communities, and create culture that strengthens our sense of shared identity—actions that are sparked and spurred by awe.
Picture your life after cancer – by The New York Times
The wide-ranging impact that cancer can have on a life in the months and years after the last doctor’s appointment is documented in photos in this meaningful collection. In 2010, the New York Times asked readers who had survived cancer to send in their photos and answer the question, “How is your life different after cancer?” and the resulting images and essays are displayed in this book. The photos depict not only the new adventures and overjoyed faces of survivors but also the honest pictures of loss, confusion, and sadness that reveal the “not always happy” life after survival. The words that complement the images contain stories of hope, trepidation, concern, and renewal, as well as sage advice on living a normal life as the specter of cancer recedes. Also included in the book are entries from relatives and spouses who cared for loved ones who received a cancer diagnosis, some of whom did not survive their battle with the disease. This moving look at life after cancer will help other survivors and patients realize that they are not alone.
What To Do After "I'm sorry, it's cancer." – by Wanda St. Hilaire
An exceptional guidebook for navigating your way to health and happiness - You can never comprehend the severe and sudden impact of the words, “I’m sorry, it’s cancer” unless they are directed at you. Wanda St. Hilaire personally and profoundly knows the effects of those four words—twice over. With her first diagnosis at the age of 29, Wanda was an anomaly. Today, cancer is epidemic—one in three people will be diagnosed—and age does not exempt anyone. Many people given the diagnosis either panic and make knee-jerk decisions under duress or check out and allow others to dictate their cancer journey. What can you do instead?