The question is not if we are going to die, but how we are going to die. Too often our own fears or misconceptions keep us from having this discussion. We then run the risk of making the decisions that are not congruent with our vision and wishes for a good death. Therefore, timely, compassionate and honest education about the natural process of dying is critical to making difficult end-of-life decisions.
“How will I die?” As patient or caregiver, do you know you can and should ask this question? As healthcare provider, do you have the language and comfort to respond to this question? We all share responsibility in making sure we can navigate this difficult conversation.
It’s important to understand how an illness changes over time, and recognize the natural wisdom of the body at it approaches the final months and days. That will help promote comfort and identify when it’s appropriate for aggressive treatment that may be focused on cure or stabilizing the disease, and when it is best to focus on aggressive comfort care only. When we don’t know or ask is too often when a person ends up one of the 20-30% who die in an intensive care unit. When we don’t know we may inadvertently push interventions or even food that creates more discomfort or even hastens death. No one likes to be surprised or left with the devastating thought, “If I had only known…”.
Find out about the status of any disease, the benefit or burden of proposed treatments and the realistic goals of care, and weigh that against what the person describes as his quality of life. Illness is a transformative process, so goals and perceptions can naturally change over time. Communication over the course of illness is always the key. Making any decisions based on fear or lack of information can carry a high cost physically, emotionally and financially, so it’s not just your right, it’s your responsibility to get the information you need on which to base your decisions that match your values, beliefs and personal goals.
Please refer to my free downloadable article “The Missing Piece in End of Life Decision-making” and the lists of questions to ask both your physician and your family to help you navigate this journey. This site also contains other resources that may be of benefit.