Q: My husband and I finally got around to writing our wills. Then our attorney encouraged us to fill out a living will, or advance care directive. It made me think of my parents, and how neither of them have living wills. How do I broach the subject without them thinking that I am just standing around waiting for them to die?
A: Your attorney has offered you an opportunity to begin the conversation with your husband as well as your parents. It might be easiest to start by bringing up the work you have been doing in your own advance care directive. This is an intimate and sometimes intimidating discussion. Here are some pointers that may help you work through this process with compassion, direction, and knowledge.
Start with you. Share what your wishes will be when/if you find yourself in a medical crisis with your parents, significant other and grown children. Acknowledge that your choices may change over time, and assure them that you will document these changes and keep them informed. Perhaps this won’t result in an open dialogue right away, but it may encourage your parents to think about what they would want.
Explain that your advance care directive is a detailed outline of the care that you will want when you are unable to self-advocate. It also designates a proxy who will speak for you in the event that you cannot speak for yourself. Luckily, attorneys and medical facilities now acknowledge the value of advance care directives. They are beginning to help people to prepare for what can be the most difficult time for both the person in medical crisis and their loved ones. However, statistics show that fewer than half of all directives are followed. There are several reasons for this. Directives are very limited in the information that they provide. They cannot predict the circumstances or the medical options that will be available in a time of crisis. Keep in mind that doctors are far more likely to take direction from the people surrounding the patient when they cannot speak for themselves than from a document.
It is vital to have ongoing conversations with the people who will be advocating for you in a medical crisis. Conversations like these, although they can be difficult, are very important. Having clearly defined wishes will result in you receiving the best care possible according to your desires. Here are some questions to consider:
• Would you want a proxy to err on the side of prolonging your life or reducing suffering?
• What daily activities would be a priority for you to continue as treatment choices are made?
• At what point would you choose comfort care over aggressive treatment?
• How long should aggressive or invasive treatments be maintained without signs of improvement?
• Who should make these decisions?
• Should the decision-maker be someone who would find it very difficult to let you go, or someone who would find it hard to see you suffer?
• How do you feel about the financial burden of your medical care on others at the end of your life?
The conversations are not about how you want to die, but rather they are about how you want to live until you die. Medicine has made strides in prolonging life and providing options as our bodies begin to fail us. What are your priorities as you begin the last journey of your life?
The truth is that none of us have any idea how or when we will die, only that it is inevitable. Oftentimes, we lean on our medical community to help us through this process. However, doctors are trained in finding ways to extend life, and for this reason they may see death as a failure on their part. Medical schools are just starting to transition from teaching extending life exclusively to addressing the mental and spiritual needs of patients at the end of life.
As a society, we are reluctant to talk about death. Opening ourselves to the reality that life in this world is finite can help us to appreciate each day. Such appreciation can motivate us to prioritize that which is truly important to us in all phases of life.
Using this opportunity that your attorney has provided to you will help you become both an advocate for your parents and for yourself. It’s never too early or too late to start the conversation.
To explore more issues regarding the end of life join us at Community Conversations on Death and Dying sponsored by Hospice of Missoula this Thursday, Jan. 17. This event will begin at 6 p.m. at the Loft of Missoula, 119 W. Main St. Kathy and Brian Derry will lead these conversations. They will be joined by retired cardiologist Hal Braun and hospitalist and physician assistant Aaron Derry.
Brian and Kathy Derry are community volunteers who advocate for advance care planning in workshops called “Kitchen Table Conversations about End of Life” and can be reached at firstname.lastname@example.org.