It was a sunny day at the beach in Southern California. Allana and Trent were paddling out to enjoy their first wave of the day. In an instant everything changed. A wave knocked Allana off her surfboard. The board hit her on the back of her head. She was unconscious. She began breathing in salt water. As her lungs filled, she sank. Trent picked her up. Her pulse was weak. She stopped breathing. He began CPR as he rushed her to the sand. Lifeguards and paramedics intervened to stabilize her. She was rushed to the hospital where she was connected to a ventilator, a feeding tube, a Foley catheter, and an IV line for medications. In those tense moments the emergency room physician explained Allana’s options to Trent. She could die very quickly; live a long time in a vegetative state; or have a full recovery. This situation demonstrates the importance of preparing for any kind of unexpected medical crisis by completing an Advance Health Care Directive (AHCD). A legal document, created in advance of an emergency or end-of-life crisis, with healthcare instructions. Clearly, Allana was not able to discuss her medical options. Trent called her parents. As her chosen healthcare agents, they spoke with the medical team by phone and let her wishes be known.
Kidney patients also need to think about their advance care decisions. No one is ever comfortable thinking or talking about the end of his or her life. The reality is everyone is going to die. Life is unpredictable. Preparing for events in our lives that are out of our control may be comforting. All age groups should discuss their advance care and appoint a healthcare agent. Even though Allana is only 28, she completed her AHCD and discussed it with her family when she began living independently.
Some barriers may prevent completion of your AHCD. Medical terms and life-prolonging procedures can be confusing. Approaching family or friends about this topic is not easy. They may dismiss your attempts because they are uncomfortable with the conversation. These are normal experiences for everyone. Social workers at dialysis units are trained to assist you with your feelings about end-of-life care. They can suggest methods to initiate a conversation, or help with understanding medical terminology. This support helps you complete your AHCD to ensure your wishes are known and followed.
Completing your AHCD is not complicated. It provides a clear statement of wishes about your choice to prolong your life; or, to withhold or withdraw treatment. A standard AHCD form provides room to include additional needs and directions. It allows you to leave instructions about organ donation. You can use simple words about what you want done, or not done. Your choice of healthcare agent (your spokesperson or proxy) should be someone you trust; someone who understands your values and beliefs. Talk to your agent about this responsibility.
Advance directives are recognized as legal in every state. Allana’s AHCD, from Massachusetts, was recognized by her doctors in California. These documents may also be called a Power of Attorney for Health or a Health Care Proxy . Some states may require a notary. In many cases two non-family members, such as friends or neighbors, can witness the document to make it legal. When you have completed your AHCD be sure to provide copies to your agent, family members, clergy, physicians, attorney, dialysis clinic or healthcare institution. In doing this, everyone who cares for and about you knows what you want. If you change your mind at any time you can revoke or replace your AHCD.
I am happy to report that Allana made a full recovery.
Mary Heisick, MSW, is a transplant recipient. She is a also member of the AAKP Harbor-South Bay-Orange County Chapter.
This article originally appeared in the November 2006 issue of aakpRENALIFE.