Most of us have ideas about the kinds of care we'd want when dealing with a serious illness. Having our wishes respected is especially important if we were unable to speak for ourselves.
Completing an advance directive document, sometimes called a living will, is just one part of planning end-of-life care. Sharing your thoughts with family—before, during and after the legal paperwork—is a critical step to reaching a shared understanding about how you want to live your life.
The Conversation Project has a starter kit to help families talk openly about care preferences, before a medical crisis happens. It includes guides for choosing a health care proxy and completing an advance directive.
I remember a patient who had end-stage COPD and was in the emergency room in respiratory distress. She had an advance directive instructing no intubation, yet her distressed family requested the procedure.
Medical personnel gathered the family and explained the patient’s wishes and how she had relieved them from the burden of that decision by signing an advance directive document. Intubating would have denied the patient’s wishes, so the family agreed to abide by them.
A 68-year-old in a nursing home had completed a POST (Physician Orders for Scope of Treatment) document indicating he didn’t ever want a feeding tube, given his advanced Alzheimer’s Disease. It also indicated that he didn’t want to be intubated, but did want CPR. Unfortunately, his document was not signed by a doctor, so when he experienced respiratory arrest in the emergency room, he was intubated.
Without the physician’s signature on his POST document, it was deemed invalid and because no family members were present, his wishes were not honored. Ensuring advance directive are signed and in your medical record is an important step to receiving care that honors your wishes.
A national survey by The Conversation Project reported that 92 percent of people said it was important to share end-of-life preferences, yet only 32 percent have had the conversation. For most people, it's the fear of upsetting loved ones with talk about illness or death that keeps them silent.
A few ideas to start the conversation
- End-of-life care a serious subject, but a little humor may help diffuse the tension.
- Share a copy of your advance care documents with family members. Some people prefer to start with the legal documents as a starting point for conversations.
It's OK to start slowly. Sometimes small talk leads to important conversations. A Conversation Project survey showed that 53 percent of family members would be relieved if a loved one started the end-of-life conversation.
A healthcare proxy, also called healthcare power of attorney or medical power of attorney, is a person you choose to make health care decisions, if you're unable to make them for yourself. Each state has its own healthcare proxy forms and instructions. Most advance directive forms also include your health proxy preferences.
Search your state name and healthcare power of attorney for links. You do not need a lawyer to complete a medical POA, but may need the signature of a witness.
- Fully understanding your medical condition and potential complications.
- Talk with your doctor and family members about your wishes for care, should you be unable to speak for yourself.
- Understanding life-sustaining emergency treatments, including the benefits and risks with CPR, mechanical ventilation or tube feeding.
- Goals for treatment (comfort care, trial treatments, full intervention) or any associated fears and worries.
- Send documents to your primary care doctor to add them to your medical record.