Advance care planning is not just about old age. At any age, a medical crisis could leave you too ill to make your own healthcare decisions. Even if you are not sick now, making healthcare plans for the future is an important step toward making sure you get the medical care you would want, even when you may no longer be able to voice your opinions. It is an opportunity to begin documenting your wishes as part of routine care before a stressful health crisis arises.
Advance care planning involves learning about the types of decisions that might need to be made, considering those decisions ahead of time, and then letting others know about your preferences, often by putting them into an advance directive. An advance directive is a legal document that goes into effect only if you are incapacitated and unable to speak for yourself. It also allows you to express your values and desires related to end-of-life care. You might think of an advance directive as a living document—one that you can adjust as your situation changes because of new information or a change in your health.
According to a survey by the National Hospice and Palliative Care organization, more than 90% of people think it is important to talk about their wishes for end-of-life care, but fewer than 30% have actually had the conversation. Why would such a critical conversation be left unspoken? Often one cannot find the appropriate time, setting or willing participants with whom to even initiate the conversation. Starting the conversation can be awkward, but powerful conversations with family members today can ensure your preferences for care now are honored in the future. While there may be no ideal time or place to have this discussion, one of the worst times to have it is during a crisis, in the ER, or while being wheeled off to the ICU. It is during those confusing and stressful times, that you might not be thinking clearly and emotions and fear take precedence.
A great way to start is by thinking about what would be most important to you if you were diagnosed with a serious, life-limiting illness. What are your greatest fears, hopes and goals? If time were limited, what is important to you, what do you want to accomplish? What trade-offs are you willing to make to accomplish your goals in the end of life? Do you want a natural death process?
Whatever you decide, it is vitally important to share your preferences with someone close to you who can speak on your behalf. You want to choose someone who will adhere to your wishes and understands your desires. Most importantly, you need to tell them what you want. They only come in handy if there comes a time when you are not able to speak on your own behalf and make your wishes known.
I have seen family members struggle with having to make a decision for a loved one when they have no idea what the loved one wanted; they never had that conversation. Advance care planning is about making sure that you and your decision maker are prepared for the future. It is all about making your own choices now so you feel like you have a say in the outcome. Advanced care planning is the enduring gift that you can give to your family. Burdening your loved ones with having to make decisions for you when you have not given them the knowledge of what you would desire can leave them feeling uncertain and wondering if they are making the “right” choice. There is often guilt that lingers if a family member feels like the weight of the decisions are left to them, don’t place your loved ones in this predicament. Talk to them, empower yourself, empower your loved ones, take control now.
Once you have had made decisions and have voiced your desires to your family members, make it official. Designate a medical power of attorney – someone you trust to act on your behalf if you are unable to make decisions or communicate your wishes. Describe your wishes in a Directive to Physicians or a Living Will, where you can specify what treatments you want or may not want when the end of life is near. If a natural death process is important to you, sign an Out-of-Hospital Do Not Resuscitate form and place a copy on your freezer door and distribute to your loved ones.
This is a process, and it does take some time, but it is well worth it. The peace of mind you will have knowing that your goals and wishes will be adhered to is priceless. By making these decisions now, you successfully unburden your family and allow them the calm to know that they are acting in your best interest by voicing your wishes when the time is right. Advance care plans are empowering, have the conversation now, you will not regret it.
If you want to learn more about what you can do to start the conversation, visit the non-profit website www.theconversationproject.org.