In the third installment of Ask a Death Doula, we will be discussing how to have The End Of Life Conversation (what you would like at the end of life) with your family and healthcare proxy and why it is important.
A few months ago, I received an email from an elderly woman in upstate New York named Jacqueline. Her email said, “I’m 85 and in good health. I live alone and am doing well. However, I worry about what will happen when I’m no longer able to care for myself. My family and I have not had a conversation about my end of life care. I do have directives, financial and health in place but… Do you have any suggestions or training for end of life conversations?”
This is an extremely common occurrence. Elderly people nearing end of life who want to discuss their wishes and plans for end of life care with their loved ones simply don’t know how to initiate that conversation. After corresponding with Jacqueline, it also became apparent that her adult children were very averse to talking about their mother’s death ahead of time. Let us talk about why this conversation is so important.
Having this conversation with your family and healthcare proxy is one of the most important things you can do to ensure a positive end of life experience. Making your loved ones and those who will be speaking on your behalf during that time aware of your wishes will ensure that they are honored. Without clearly stating your wishes to everyone while you are in good health, it will lead to unnecessary conflict between family members if they are left to make these decisions without your guidance. Families almost never unanimously agree on care decisions and this is not a time for loved ones to be arguing with one another.
Starting the conversation is not easy but being uncomfortable now will save you a lot of suffering and hardship later-on, for both you and your family. Before we dive into how to break the ice, let us consider some important facts surrounding this end of life conversation.
1) It is extremely important to have an advance directive, but you must remember that they are not legally binding. A doctor can supersede the wishes put forth in an advance directive if they feel that their opinion is what is best for the patient. Having your family and Healthcare Proxy aware of your wishes is vital to holding doctors accountable for giving you the care and treatment you desire.
2) Your Healthcare Proxy is the person you appoint to speak your wishes to medical professionals if you are unable to communicate due to incapacitation. HCPs do not make decisions for the patient, they simply speak on their behalf and verbalize the decisions that have already been made.
How to start the conversation with your family/children:
Like Jacqueline, perhaps you have family members that want to avoid having this end of life conversation with you. Maybe they are very uncomfortable speaking about the topic of death because they struggle with the thought of losing you or with their own mortality. I always believe it is easiest to have difficult conversations over coffee and cake. Set the tone with some sweets and beverages before approaching this topic. It helps lower the guard of everyone in the room and cushions the intensity of the conversation.
I feel the best way to break the ice on this conversation is by saying that you know of a family that suffered the loss of a loved one who was too ill to speak for themselves at the end of life. The person did not have an advance directive and did not have a conversation about what they would have wanted for themselves before they could not communicate any longer. The subsequent events divided the family on decisions for care and caused so much additional stress and fighting, leaving that person to linger in a horrible state of pain and discomfort for months before she eventually died.
Allow your loved ones to understand that this conversation can prevent that terrible outcome. It is crucial to allow everyone to ask questions during this conversation so that you can clarify why you are making your choices. The goal should be for everyone to leave with a sense of deep understanding and acceptance of your decisions.
How to start the Conversation with your HCP:
Having this conversation with your Healthcare Proxy is slightly different than having it with your family. It is important to remember that your HCP is not required to be a spouse or a relative. It should be someone you trust and that lives in the same geographical location as you. The person you choose should express clearly that they are comfortable and confident with communicating your wishes. If they show any signs of hesitancy or nervousness, that person is most likely not a good candidate to be your HCP. Never force someone to take this position, as it can prove to be a terrible arrangement for both of you.
Once you find someone who feels comfortable speaking to doctors in stressful situations and they have agreed to be your HCP, begin the conversation by letting them know that you have completed your Living Will. This document will have your wishes for care and comfort written down and your HCP should be made aware of your wishes and feel comfortable making them known to all medical personnel if you cannot speak for yourself any longer. Go through the document with them and allow them to ask any questions they may have.
Completing your advance directive and having the conversation is one of the greatest gifts that you can give to your family. It removes the burden of trying to decide what you would want or not want under these circumstances at end of life and can prevent so much unnecessary conflict and guilt between those who should be comforting each other rather than quarreling.