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Suzi Johnson, RN, a Sharp-affiliated registered nurse and vice president of Sharp HospiceCare, answers questions about end-of-life-care and how to talk about it with your loved ones.
How can I approach this topic with my family?
In thinking about approaching family members about end-of-life care, first it’s important to acknowledge that this is very emotional and we don’t have a lot of practice in our culture about how to approach an uncomfortable subject such as end-of-life care.
I think a good way to approach a discussion around end-of-life care is to acknowledge the emotional bias that we have and the discomfort we feel, then try to get down to the logical matters of the progression of the disease.
Can a physician help?
If I ask myself, "What is the normal progression of this disease?" I can have a physician tell me that and then I can have a conversation with my family about the normal progression. Other questions to ask are: What are the treatments that are available? How do I manage the symptoms that I may experience with this disease? How do I manage the inconveniences that come along with this disease? And then I begin to plan better.
One of the most important things that a person can do is to have clarity about how they want to be cared for at the end of their life. It is very important that a patient collaborate with their family and articulate what they want and how they want to be treated and then identify a spokesperson to work on their behalf and that will become their durable power of health care for decision making.
How do I know what my parents would want?
Beyond that, every person who is involved with that patient really needs to ask the question, "What did my mother want? What did my father want? How would he or she want to be cared for?" And work really hard to get their personal agenda and their fear out of the equation.
What is an advanced health care directive and why would I need one?
Every person should have an advanced health care directive that identifies your health care agent when you are no longer in a state to speak for yourself. And also, that advanced health care directive serves as a document to help physicians and other health care providers understand how you want to be cared for based on your specific medical condition or disease. This document is something that could travel with you. It should be part of your permanent medical record. It should be with your primary care physician and understand that this document is flexible. It can change. You can change your mind about how you want to be cared for and you can change it at anytime you choose to. The document really serves as a tool to help health care providers and family members know how you want to be cared for.
For More Information
To learn more about Sharp's senior health services or to find a Sharp-affiliated physician, search for San Diego doctors or call 1-800-82-SHARP (1-800-827-4277), Monday through Friday, 8 am to 6 pm. To find general information about senior health, read the Senior Health News archive.