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Advance Directives

A Robert Wood Johnson Foundation study found that the vast majority of Americans would prefer to die at home rather than in a hospital or institutional setting, yet only about 30% actually do so. And a national survey by The Conversation Project found that 90% of people know they should discuss their end-of-life care preferences with family and loved ones, but again, only about 30% actually do.

HFA recently coordinated a nationwide community education project, called Being Mortal, to raise awareness of the importance of advance care planning which reached over 60,000. Audience members viewed the Frontline documentary, Being Mortal, and participated in a discussion to learn about prioritizing their end-of-life care wishes and communicating them to loved ones and healthcare providers. Feedback from thousands of people indicate that 97% will now, for the first time, think about and communicate their wishes, and 92% will complete their advanced directives.

There is no simple explanation for the great disparity between what people say they want and what they will actually do. But one thing is certain: if you neither discuss nor document your health care preferences, there is at best, only a 50% chance that any choice made on your behalf will reflect your preference if you were unable to communicate your wishes.

Becoming adequately prepared for the time when you may not be able to communicate your wishes for end-of-life care isn’t easy. But it’s the only way to ensure your wishes are carried out. Preparing someone else to make choices on your behalf will not only give you assurance and peace of mind, but also your loved ones and healthcare providers. We hope the information below will help you will feel more informed about and comfortable with advance care planning and will take the steps to ensure your wishes are carried out, if and when it’s needed.
 
What is advance care planning?
 
Advance care planning is the process of ensuring your end-of-life care wishes are honored if you’re unable to communicate them yourself. Thinking about this type of care isn’t easy, but it’s the first step in securing the peace of mind that comes with knowing your wishes will be carried out by the people you choose.
 
Here are three main steps to help you navigate the process:
 
  1. Think carefully about the type of end-of-life care you want and who you would like to carry out your wishes.
  2. Discuss your preferences with those who are important to you and will honor your choices, including your healthcare provider.
  3. Document your wishes and provide copies to anyone who needs them.

We believe that each step is important, but even if you don't get to Step 3 to complete the documents, we encourage you to at least discuss your end-of-life care preferences with your loved ones and healthcare professionals. Though it may be difficult, we have yet to hear from anyone who regrets having had these discussions. Perhaps the toughest part is actually starting the conversation.

We know the conversation can be hard, so we’ve compiled some resources below that you may find helpful as you navigate the process. HFA does not endorse any of these resources, as each person is unique in their beliefs, wishes, and circumstance. We are providing them to you as information that you may or may not decide to use. These links will redirect you from our website:
 
The Conversation Project http://theconversationproject.org/
Five Wishes https://www.agingwithdignity.org/
Prepare for Your Care https://www.prepareforyourcare.org/#/pamphlet
Being Mortal documentary http://www.pbs.org/wgbh/frontline/film/being-mortal/

What are Advance Directives?
 
Advance directives are documents known as a living will (different than a last will and testament) and a healthcare proxy. Together, they make up "advance directives" in which you:
 
  • Clearly state your preferences for the health care you wish to receive, or not receive.
  • Give someone of your choosing the authority to make decisions on your behalf if you are unable to communicate your preferences on your own when decisions must be made. 
 
Why do you need Advance Directives?
 
Completing advanced directive forms allows your family, loved ones, and healthcare team to share the same understanding of your wishes. It provides you with the reassurance that your wishes are heard, understood, and will be carried out if you are unable to communicate them yourself.
 
How do you access Advance Directives documents?

Advance directives are intended to provide documentation of your healthcare wishes and preferences regardless of where you reside, but the actual documents often differ from state to state. The links to the right are intended to provide you with impartial resources, such as state governments, bar associations, universities, etc., and most provide additional information as well as access to their state-specific forms.

Some states now offer the ability to create or modify advance directives online and some also have an option to store the documents in an online registry. No matter how you create your advance directives, please remember that the documents can be updated at any time and as often as you choose.
 
What should you do with your completed Advance Directives?
 
Once your advance directives are complete, we recommend that you:
 
  1. Provide a copy to whomever you chose to make decisions on your behalf.
  2. Provide a copy to those important to you; loved ones, friends, and physician.
  3. Place the documents somewhere easily accessible if needed in an emergency, not locked away somewhere. Consider keeping a copy in the car along with your automobile registration.
 

(Please note that links to the right redirect you from hospicefoundation.org,
therefore HFA cannot control their content. On some sites, you must scroll down to find the information.)