Example Idealized Conversation
Celia is a 62-year-old woman who has had insulin-dependent diabetes for most of her adult life. Due to the diabetes, she also has kidney disease, reduced blood flow to her legs, heart disease and shortness of breath. In recent years she has had several small strokes. Her lower leg was amputated four years ago because of an infection, but she has learned to walk relatively well with a prosthesis.
Cecilia has always been strong and fiercely independent. She earned her law degree despite living with chronic illness and raised her children as a single parent after losing her husband many years ago. However, after she suffered a stroke two years ago, she can no longer work. She needs help to maintain a home, shop, prepare meals and bathe, so she now lives with her daughter. While she is financially secure and is generally in a good mood, she has grown increasingly unhappy with her overall quality of life.
Her physician initiated advance care planning with Cecilia several years ago, and she completed an advance directive naming her daughter as her health care agent. She indicated that she wanted treatment options that would help her achieve her goals to remain independent and prevent any further decline in health. But after her most recent stroke, Cecilia feels that the medical treatments are becoming too much of a burden for her. She also hates being dependent on others. Her goals are changing, and she would prefer to focus on treatments that provide comfort and relieve her pain.
With her kidney disease worsening, Cecilia will soon need dialysis treatment; kidney transplant is not an option. During a routine visit, her physician explains what is happening with her kidneys, how dialysis works, and its benefits and burdens. Because she and her physician have been having regular conversations about her goals of care over the last serval years, her physician is comfortable in making an observation:
“As you know your kidneys are not working well enough to clean your blood and this is why you feel more tired, have nausea and your blood tests are 'off.' Dialysis can help, and will likely make you feel better, but you will need to be transported to and from the dialysis unit three times per week. Each dialysis procedure will take a couple of hours and may be hard on you. Without dialysis, you will die. If you make that choice, your health will continue to deteriorate probably over several weeks to months, but we can make sure you are comfortable during that time. You might tell me that I am wrong, but based on what I know about you, I think that you will not want to begin dialysis. If that’s true, you might also decide not to receive medical treatments like resuscitation if your heart stopped or maybe choose not to go into the hospital at all, unless it is needed to make sure you are comfortable. I would suggest that you talk with someone from hospice. Is this what you would want, or did I get this wrong?”
The physician translated Cecilia’s goals and values into treatment options. If Cecilia agrees, this plan will be discussed with her family (especially her daughter) and she would be encouraged to complete a POLST reflecting the discussion.