One of the most heart-breaking aspects of COVID-19 is that people who are seriously ill are separated from their family and friends. If they're on a ventilator they may not be able to tell the healthcare team how they wish to be treated.
During this pandemic, it is a very good idea for us all to think about our preferences, and to document those in an Advance Care Directive.
The information in these webpages is all relevant during the pandemic. To help people think about their wishes if they get seriously ill with COVID-19, the Conversation Project has these quick information documents:
Be sure to discuss information gathered from these resources with your health care providers to see if it is relevant to your individual situation. Health and medical information accessed through these websites is not intended to substitute for or to replace the advice or instruction of a health care professional.
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NHDD Speak Up Video from NHDD on Vimeo.
Why bother with an Advance Care Directive?
Ever wonder what it might be like if we were sick or injured or unconscious and couldn't talk to the people taking care of us, to tell them what matters most? While it may be uncomfortable to think about, unfortunately there is no guarantee that we won't encounter that scenario. Thinking ahead about your wishes and preferences, deciding what's most important to you when facing those hard decisions, lets you work though those situations before they ever happen. It can also relieve your loved ones from worry or guilt.
Writing down what you want in an Advance Care Directive, choosing a Healthcare Agent and sharing with them what's most important to you, is how we make it possible for emergency personnel, medical staff, and your loved ones to act in an emergency according to your wishes.
It's a very good idea for every adult to have an Advance Health Care Directive and to choose a Healthcare Agent. These are not just for seniors - adventurous 18-year-olds, parents of young children, middle-aged people in the "sandwich generation", and the rest of us need them too.
There are many ways to explore people's preferences for care when they become seriously ill, or face a medical emergency. Sometimes all it takes is to begin a conversation (even if that feels difficult or awkward).
"Go Wish" is a light-hearted interactive game from the Coda Alliance. It can be played online for free:
Printable / downloadable conversation starter kits are available from both the Conversation Project and the Institute for Healthcare Improvement are available in many languages (including Spanish, Portuguese, Chinese, Korean, Vietnamese, Japanese, Hindi, Arabic, Russian, Hebrew, Kreyol, French and German).
Health Translations offers guides for advance care planning in many languages, including Croatian, Greek, Italian, Macedonian, Polish, Serbian and Tagalog. Those are written for Australia - while the laws and regulations are different in the U.S., the questions to ask and things to consider are universal.
Sometimes a group conversation can be the easiest place to start. The Coalition for Compassionate Care of California's multi-page "Talking it Over" Guide is particularly useful for congregations, senior centers, or other organizations that want to support each other with advance care planning..
Even if you have clarified what's important to you, it can still be difficult to talk about the end of life with family and friends. These resources from the National Hospice and Palliative Care Organization may help overcome awkwardness or tension:
And this may help to open the conversation with your health care team:
A Psychiatric Advance Care Directive performs similar services for people whose mental illness might, at times, get in the way of making informed decisions about their care. It can cover issues like psychiatric medications and/or hospitalization for a psychological crisis, as well as inform your health care team on how you wish to be treated in an emergency situation.
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