What if we were more comfortable sharing our thoughts and wishes about what would matter to us towards the end of our lives? What if we were more informed about what to expect if we were seriously …
What if we were more comfortable sharing our thoughts and wishes about what would matter to us towards the end of our lives? What if we were more informed about what to expect if we were seriously ill or dying?
In the U.S., there is a cultural tendency to avoid the messy topics of serious illness, grief, and death. There is recent concern that the global pandemic’s daily media coverage of COVID-19 cases and hospitalizations has increased the public’s anxiety surrounding death. It may also have served as a reminder that things can change quickly and being more prepared could be a gift to our loved ones and reassuring to ourselves. To be human is to be mortal and this should not come as a surprise. However, facing our mortality, a life-limiting illness, or uncomfortable emotions is never a simple task.
Historically, death was more likely to occur in the home, sometimes along with a wake. Family and neighbors of all ages would witness this natural cycle of life. Over time, more people began spending their last days in the ICU, a nursing home or hospice facility. A person could be well into adulthood before witnessing a death, if at all. Serious illness and death have become more of a medical event, but they are also a social, emotional, cultural, and spiritual experience.
As a community, we need better language, skills, and confidence to navigate this territory and support each other along the way. It helps to talk. We may not be the one doing the talking, but we may need to be the one pulling up a chair to sit and listen.
Where are we going?
The need for more awareness and openness around death related issues is getting attention. An increasing number of organizations and initiatives such as: The End Well Project, The Conversation Project, Death Cafes, and Reimagine have formed with a mission to increase public education, engagement, and insight around death and dying. They hope to reclaim how we live until we die by promoting more discussions and a broader acceptance of death as a natural event.
Ellen Goodman, the Director of The Conversation Project https://theconversationproject.org/ emphasizes that these conversations should be about “what matters to you, not what is the matter with you”. They can help to emphasize the importance of celebrating life and clarifying what is important to each of us. There is no right or wrong way to do it. It might be one or more small chats over a cup of coffee, a family meeting, or a phone call with someone you trust.
This year an international commission of health professionals and scientists published an in-depth report in The Lancet journal titled: “The Value of Death: Bringing death back into life.” Their research revealed that death is more likely to come later in life, be related to a prolonged chronic illness, and occur in a health care setting. The commission offered recommendations about how to bring death back into life, based on five principles. One of those principles reinforces that: “Conversations and stories about everyday death, dying, and grief become common.”
Principle #3 emphasizes that along with health professionals, there should be a network of family and community members to support people who are dying, caring, and grieving. It takes a village and together we can form compassionate connections when we listen to each other’s stories.
In my own experience working in palliative care and hospice, asking open-ended questions such as: “Can you tell me what is going on with you right now?” was often helpful. It can open the door to a conversation and provide an opportunity for the patient or family caregiver to choose what to discuss.
Some respond with questions of their own, some tell amazing stories, and others offer incredible insight. There are also patients who put up their hand to indicate “I am not going there.” How much a person wants to know or how much they are ready to share about being ill or dying should be respected.
What we are not familiar with can create fear. Voicing our fears and being heard can help to demystify and normalize them. It can be healing. Humor can also find a way into these serious topics. Mark Twain offered his unique perspective, saying “I do not fear death. I had been dead for billions and billions of years before I was born and had not suffered the slightest inconvenience from it.”
Supporting each other as we deal with a serious illness, grieving, caring for a loved one, or dying can start with talking, listening, and sharing our stories. It can be a powerful way to receive as well as offer wisdom, experience, and compassion.
Bonnie Evans, RN, MS, GNP-BC lives in Bristol and is a geriatric nurse practitioner and End of Life Doula. She can be reached at: firstname.lastname@example.org.