So let’s say that you’ve done your research about funeral options and you’ve decided on a specific plan for your body after you die. You’ve put aside the money to cover the expected costs. Maybe you’ve joined a memorial society and actually enrolled with a particular funeral provider and communicated your preferences. Perhaps you’ve formalized a living will and/or an advanced directive. And you’ve neatly included copies of all of these documents in your files where they will be easily found by your next of kin.
Have you done enough?
Probably not. Physicians and other health care professionals say that when they are caring for patients who can’t speak for themselves, having a person on hand who knows the patient’s wishes and is authorized to make decisions on their behalf is far more helpful than any set of documents. Even the best, most careful planning won’t necessarily cover the particular set of circumstances in which a patient may find himself or deal with every post-death decision that may be required.
Sharing your specific wishes with family or trusted friends is vitally important so that there is someone to speak and decide on your behalf if/when you are not able to. And it’s just as important to spend time talking about your general opinions, feelings, values, and attitudes. Your children may know that overall you are in favor of organ donation … but not what you think about skin and tissue donation. They may know that you want to be buried … but not whether that preference is so strong that it merits shipping your body home from an unexpected death overseas, at great expense, rather a much more economical foreign cremation. You may have indicated that you didn’t want a viewing of your body… but didn’t express how strongly you felt about that and whether you were willing for there to be a viewing if that was very important to your next of kin.
This type of candid discussion needs to be about more than just care of the body after death. It should touch on health care decisions that may be required in chronic or critical and unexpected situations before you die. These are quality-of-life topics like dementia, incapacity, and even the dying process. The questions of whether you would want to be on a ventilator or a feeding tube, receive certain types of medications, or have a Do Not Resuscitate order shouldn’t have yes or no answers. They should have “It depends on (detailed discussion)” answers. And those are not the kind of things that are easy to write down. They take give-and-take, back-and-forth discussion for your healthcare companion(s) to understand your thoughts and point of view and then be able to advocate for you when and if those circumstances arise. It will be easier on this cherished person to make decisions for you at a difficult time if they feel that they truly understand what you would want.
Most people would rather avoid these types of discussions. Yet they are so important. Starting the conversation is actually probably easier before age starts creeping up and health starts declining—when it is all more theoretical than imminent. Once you’ve had an initial discussion, it’s easier and more comfortable to revisit the conversation from time to time, expanding and fine-tuning as needed.
So how do you dive in and get the conversation started? The Conversation Project is a national initiative to encourage meaningful and important talks between the generations about end of choices and requests. This project has gotten a LOT of positive response and great media outreach, including the videos below. Check out their website at TheConversationProject.com.
Project summary: An ABC feature story (4 ½ minutes):
https://www.youtube.com/watch?v=S5nMcYFnvgo
Interview with co-founder and Ellen Goodman on the Bioethics channel (10 minutes):
https://www.youtube.com/watch?v=cSULDIC4K4s
Feature on Al Jazeera Tonight, a mix between personal stories and clinical experiences (9-1/2 minutes):
https://www.youtube.com/watch?v=eW-haEkxy6w
Conference presentation to hospice professionals by a palliative care physician (55 minutes):
https://www.youtube.com/watch?v=i4bHcho9AvU
End of Life Seminar Series hosted by Dr. Karen Wyatt with special guest Dr. Jessica McCannon, ICU physician and advisor to The Conversation Project. (44 minutes): minutes https://www.youtube.com/watch?v=4ptk5WsFwSE
US News & World Report writer interview with co-founder Ellen Goodman and Dr. Ira Byock, physician specializing in palliative care (14-1/2 minutes):
https://www.youtube.com/watch?v=-58rXioI6aw
Circle of Life Coalition BCTV interview with Dr. Dan Kimball (28-1/2 minutes):
https://www.youtube.com/watch?v=pt6oHOtCcwU
A Personal Story (4 minutes):
https://www.youtube.com/watch?v=yxNOVZk9nm0