Daily we learn more about the COVID-19 virus. We hear about outbreaks, number of cases and number of deaths on a global and local level. The topic of death is on the table in a very real way. Death due to COVID19 is a reality for those who are very frail and vulnerable. People living with multiple serious illnesses AKA co-morbid conditions are at high risk. And to share what seems like a secret, whether we die from COVID19 or something else, now or later, we all will die.
So…. if you have the luxury of hibernating and reflecting and are looking for a most meaningful project, I highly recommend that you:
- Read Dr Atul Gawande’s book, “Being Mortal”
- Review the Serious Illness Conversation Guide
- Engage in Advance Care Planning, and
- Engage in conversations!
Read “On Being Mortal” by Dr Atul Gawande
Dr. Gawande will help you understand the challenges of dying in a health care system that aims to cure all.
In his book, Dr. Gawande clearly identifies the challenges of dying in a death-denying society. Move this incredible, engaging, easy to read book to the top of your list. It may help you to shift your thinking and see all health care decisions from a different perspective. Consider your health, consider the health of those you care for and care about. What questions does this bring forward for you?
Review the Serious Illness Conversation Guide
Dr. Gawande and team at Ariadne Labs developed the “Serious Illness Conversation Guide” to assist health care professionals to talk with patients and family members about the individual, their illnesses, what to expect, and prepare them to make informed decisions. Read through the guide, consider your own health, the health of those you care for. What questions do you want to ask of the health care team? What do you feel inspired to do/say/consider?
This may lead you to consider, “If I were suddenly to become critically ill, what would my priorities be? My goals? What are my fears about death? What is most important to me”
Engage in Advance Care Planning
Advance Care Planning will help you develop a clearer understanding of what you might want as your health declines, and will help you assign a Substitute Decision Maker who will speak for you and advocate for you, if and when you are no longer able to speak for yourself. Going through the process of your own Advance Care Planning will help you develop a deeper understanding of the challenges and decisions that the person and family must address.
If you are caring for a friend or loved one, work with them to engage in these conversation, to help them to identify determine the care they want and do not want. You may want to bring in member of the health care team to help facilitate the conversation.
Know that Advance Care Planning conversations are not optional; they are essential. With current technology, it is possible to record the conversations in an audio format as well as written record.
There are many excellent resources to help with Advance Care Planning discussions. Of course, there are the fun “Care Planning Cookies” available through Life and Death Matters ? to stimulate conversations about care giving preferences.
Michelle Pante and Reena Lazar are cofounders of WILLOW, and offer resources for exploring your Offer a workbook to help you explore death and what it means to you.
The SPEAK-Up resources from the CHPCA, are part of their Advance Care Planning program. In the US, one of the favorite resources is Five Wishes. The Chinese American Coalition for Compassionate Care created a card game based on the “Five Wishes” go to “Heart to Heart Care Deck” The card game, like the Care Planning Cookies, stimulates discussion while having fun.
Engage in conversation
Social hibernation does not mean social isolation. As you read, review and reflect, engage with friends, family and community in conversation. Use technology to connect and record your thoughts.
Speaking up now will help you know what you want, will help others know what you want, and will help the health care team to provide care that best honours who you are.
Do you have a favorite resource that you use? Please share!
Do you have a related experience or story? Please share!
Sharing – my birthday surprise from friends who figured that I needed to engage in conversation!!