“I wonder how it will happen…”
That’s what Jackie Isaac said to her daughter Dory Martin as the two were having breakfast about a month before Jackie passed away. “’How will I die’ is what she meant,” said Dory.
For many of us, just the thought of a loved one dying is enough to force us to think of something else – ANYTHING else – instantly. Having a conversation with a loved one about their wishes surrounding death? Forget it. But that conversation doesn’t have to be so uncomfortable that’s it too much to bear. In fact, having that talk, and knowing what your loved one wants, will make aspects of that incredibly painful time a little bit easier. People who have experienced death firsthand shared their perspective at a critical health care decisions workshop hosted by Tucson Medical Center called Your Life, Your Plan, Your Choice.
Dory spoke about her mother’s life – a life well-lived – and about having that conversation prior to her mom’s death from a neurologically based illness at the age of 85. Before the illness consumed her, Jackie made her health care wishes known, and also wrote out an ethical will – a personal letter in which she expressed her values, experience, wisdom and end-of-life wishes. Having the conversation about end-of-life wishes and the documents that spelled things out gave her children clear cut instructions…and left few decisions up for debate.
Understanding those wishes is a big part of palliative care. The term “palliative care” is often confused with hospice care. Palliative care is family-centered care that optimizes quality of life by anticipating, preventing and treating suffering. Throughout the continuum of illness, it involves addressing physical, intellectual, emotional, social and spiritual needs and helps facilitate patient autonomy, access to information, and choice. At the base of palliative care: What are the patient’s desires and wishes?
“Quite often we get so hung up on what we can do for someone medically that we don’t ask who the people are and what they would really want. And that, I feel, is the more important question,” said Kathy Kennel, NP, a Palliative Care coordinator at Tucson Medical Center. Kathy also spoke at the workshop, opening her talk with a flashback to her mother’s dying days, and how she vowed to do whatever she could to help families at the end of life.
Dr. Larry Lincoln, TMC Hospice Medical Director, also shared a personal story about his mother, who lived in a care home with dementia and heart failure toward the end of her life. “She told me she did not want to go on living for a year prior to her death,” he said. Dr. Lincoln vividly remembers receiving a call from the care home. His mother had a medical crisis in which she could have been treated and potentially moved back to the care home. He thought about his mother’s words and made the decision not to have her treated. She was transferred to Peppi’s House where she was kept comfortable until her death. Even though he knew that he was following his mother’s wishes, he still struggled with being responsible for her death. He explained that many people have this initial reaction when faced with these important decisions. He knows that he did not kill his mother; he was simply carrying out her wishes. He took comfort in what she expressed to him before the dementia got severe.
Having a meaningful, open dialogue about end-of-life wishes is not easy, but this website gives you a good place to start: www.theconversationproject.org. Advance directives are another way to provide some direction. Formal advance directives are documents written in advance of serious illness that state your choices for health care, or name someone to make those choices, if you become unable to make decisions. Through advance directives, such as living wills and durable powers of attorney for health care, you can make legally valid decisions about your future medical treatment.
Healthy Living Connections, a TMC Senior Resource Center, is organizing many events this fall, including a conference on Positive Aging for Women, Medicare Updates, and Caring and Coping with Tremors. For more information, to register, or see what other classes are available, please click here.