It was the week before Thanks-giving. “I just want to die,” Elsa started the conversation. “I’m suffering way too much. I’ve had enough.”
My response, as the Palliative Care Nurse consulting with Elsa, was “Have you talked to your family about this?”
She was afraid to talk to her family. Her husband had early onset dementia, so she felt he would not understand. However, he was still listed as her primary agent on her Advance Directive for Healthcare. Her daughter would be heartsick, she explained. They had a very close relationship. Her son would understand but not like the idea, although his wife, Maria, was the one person in the family who might understand all the levels of pain that were at play here. Maria was one who understood that Palliative Care was about addressing the emotional, spiritual, and psychosocial realms of human suffering.
Elsa had a serious end-stage illness, complicated by other medical issues. Her pain had not been well managed. She had been a very strong and independent and public figure in her community all her life. She felt that she still needed to take care of everyone else before she could take care of herself. She admitted feeling “guilty” for wanted to be out of her misery.
At the end of our consultation Elsa had a “to do” list, which she had requested and was happy to read. Number one on her list was to talk to her family.
When I called after Thanksgiving, she had succeeded in having a family conversation, and of course, everyone did understand Elsa’s wishes. They loved her! They did not want to witness unnecessary suffering.
People get so afraid of writing truly specific and direct desires in their Advance Directives for Healthcare. And yet, IF your loved ones and your medical team do not know your wishes, do not understand your values, do not have the opportunity to hear you express what is most important to you–how can they possibly follow your wishes?
I have been a Palliative Care Nurse for over 25 years. I have also been a person with cancer, wondering how long I would live. I have managed an Intensive Care Unit and been the person trying to initiate conversations about end of life and treatment options with healthcare professionals who were reticent to “go there” and family members who had never had conversations with the person lying in the bed–now semi-conscious, tangled in tubes and wires, and unable to communicate any longer.
I try hard to practice what I preach, and review my Advance Directive documents regularly, with those I love–my agents and the people in my life whom I believe would show up for me in a critical situation. I have 2 pages of “addendums” to my documents that spell out things that are important to me (like not wanting to be fed if I had dementia and could not take care of myself, calling my brother before decisions are finalized, playing music that I love, bringing in the element of water wherever I am.)
This Holiday season, give your friends and family the simplest and most potent gift you can give them–to be prepared for what might happen in a critical medical situation
and to know exactly what you value about Life, so that your Death can be a reflection of who have been throughout your “one wild and precious life.” (Mary Oliver)
The world death rate IS holding steady at 100%. Would you prefer to leave this Earth without anyone knowing what it is you truly wanted, for your final gift?
My revision of the words to the Quaker song, “Simple Gifts,” that came to me standing in the snow on my Grandmother’s grave:
“T’is a gift to know the Spirit
T’is a gift to feel the Heart.
T’is a gift to know that where we end we start;
And when we understand that the truth and the light
Are inside us
to Guide us
we come round right.”