When San Jose, Calif. residents Shirley and Eddie Jones wanted to discuss their end-of-life wishes, they encountered resistance from an unexpected source. As detailed in the video above, their beloved children refused to participate in the conversation.
As with the Jones, the people who love you the most may not be willing to help you because they care too much - and your doctors may be largely silent as they're uncomfortable broaching this sensitive topic for fear of offending you. So, when it comes to end-of-life planning, you're largely on your own. And it's important that you take the first step and break this wall of silence.
Even as you're reading this, you may be thinking that the topic of end-of-life decision making is not relevant to you right now – that it’s too early. Or it may be that you’re uncomfortable thinking about death. You may even be waiting for your doctor to broach this subject with you and lead the way. After all, as long as you do what the doctor tells you to do, you can get pretty good results with your health care. But, this ‘wait-for-your-doctor’ strategy isn't going to serve you well when it comes to end-of-life decision making and planning.
Don’t believe me? Then just take a moment to review the evidence (link to .pdf): Eighty percent of people say that it's important to have end-of-life wishes in writing, but only 23 percent say they have have done so. Eighty percent wish to have end-of-life conversations with their doctor but only 7 percent get to do this. Research also shows that most doctors have neither the training nor the time to skillfully conduct end-of-life conversations with their patients.
These end-of-life conversations are the goalposts that guide the care that you'll receive at a point in your life when you may be too ill to speak for yourself. If your wishes, beliefs, and preferences are unknown, your family will be burdened by making these tough decisions on your behalf. In the absence of your documented wishes, your doctors will likely just continue invasive high-intensity treatments, which may be ineffective and burdensome and erode your quality of life without prolonging lifespan.
Today is National Healthcare Decisions Day and a good trigger to help you think about what matters most to you at life’s end. Do you want to spend the last days in a hospital or a nursing home? Do you want to be at home? What are your beliefs and faith, and how are they going to shape your decisions? Who do you want making decisions on your behalf if and when you are too sick to think clearly? Now is the time to be thinking about these important issues and to talk them over with your family. Don’t be surprised if your loved ones are reluctant to talk to you as they can't bear the thought of losing you.
Once you have coaxed your family see the wisdom of your ways, use a simple letter format to reflect on your values and preferences and document them. Finally, to seal the deal, be sure to talk to your doctor about what matters most to you at life’s end and have it documented in your medical record.
VJ Periyakoil, MD, is director of palliative care education and training at Stanford.
Previously: Study: Doctors would choose less aggressive end-of-life care for themselves, Asking the hardest questions: Talking with doctors while terminally ill, On a mission to transform end-of-life care, The importance of patient/doctor end-of-life discussions, Talking about a loved one's end-of-life wishes and A Stanford nurse shares her experience in talking to her aging mother about end-of-life decisions