All of us could face serious illness or injury at any age. An advance directive can ease the stress on family members and loved ones if they are faced with critical decisions about your care.
We know that sometimes family members have to make medical decisions for spouses, parents and adult children when they are unable to make them for themselves. Providence Health & Services believes everyone 18 and older should have an advance directive, which legally states who can make decisions for you if you are unable to make them yourself and what types of medical treatments you would want or not want.
We talked with two people with experience on this subject from different perspectives.
Ira Byock, M.D., chief medical officer of the Providence Institute for Human Caring, has been a leader in the effort to help families plan ahead for difficult circumstances. And actress Shar Jackson recently faced this issue when she and her family were forced to make care decisions for her ailing mother who did not have an advance directive.
We start with Shar, whose family had the added stress of not knowing what her mother might have wanted.
Question: What did you know about advance directives before your mom became ill?
Shar: I honestly didn't know much. We'd had some conversations about it, but nothing formal and nothing that was solid.
Q: What happened with your mother’s illness? Did you and other family members disagree on what she would want for her care?
Shar: My mom's illness was quite sudden. One day she was getting ready for work and felt a sharp pain in her chest. She thought she was having a heart attack, so we rushed her to the hospital only to find out we were facing an aortic dissection. When it all hit the fan with my mom, we were very lucky that our family was a united front. Everybody agreed we just needed to get her better. But that’s not always the case, that’s why it’s important that people have it written down ahead of time.
Q: Did anyone talk to you while your mother was in ICU about how to get an advance directive for her and others in your family?
Shar: While my mom was in ICU preparing for surgery the doctors did talk to us about an advance directive for her. They wanted us to all be clear on what it was and how important it was to actually know what she wanted. They told us that knowing her wishes was critical. That conversation really sparked something in me—I realized that I needed to talk to the family and make sure we all have an advance directive. I knew I wanted to make sure they know what I want in case anything happens to me.
Q: This wasn’t your first time dealing with a sudden illness and loss. How have these incidents impacted your view of preparing for serious illness or injury?
Shar: No, this wasn't the first time we were faced with big decisions. My family acted as a hospice for my cousin when he passed from cancer. Fortunately, we had discussed his wishes, but we didn’t have an official advance directive. Nothing was in writing and some of the choices that were made weren't necessarily agreed upon by the whole family. It’s the worst time to be disagreeing about decisions when you’re losing someone you love, I really wished that he'd had an advance directive.
Q: How have you begun having the conversation about advance directives with others in your family?
Shar: Sadly, we’ve been faced with enough crises that now, myself, my children, my parents and my siblings have all put our wishes in writing and have had group discussions so everybody is clear on what each of us wants. It’s not always an easy conversation, but it’s so important – so vital!
Q: Do you think it’s safe to say that you owe it to your family to be prepared?
Shar: I definitely feel like it's only fair to have an advance directive for your family and your loved ones. That way, nobody is backed into a corner to make a hard decision, or certain things aren't argued about when what's most important is your family being a unified front and dealing with the hardship.
Q: Research shows that less than a third of Americans have completed an advance directive. Why do you think that is?
Shar: I know a lot of people think it's creepy to discuss our demise or our end. However, the one thing in life that is guaranteed, is that it does end! So, as a way to relieve a lot of stress and let people process and grieve properly is to be prepared. So I think everybody should have an advance directive.
Q: Thank you, Shar.
Next we sought advice from our clinical expert, Dr. Ira Byock. We asked Dr. Byock what information he could provide for those wanting to learn more about why advance directives are important, how to make the most out of your advance directive, and where to get a copy.
Dr. Byock responded:
I encourage everyone over the age of 18 to have an advance directive.
I have one, because like Shar, I have a family. If I were to become seriously ill and unable to speak for myself, I want my family to have clear authority to help honor my wishes for care, and to know what I think I would want, not to tie their hands, but rather to lift a little bit of the burden from them as they work with my doctors to decide what would be in my best interests.
Talk to your loved ones
Your family members and close friends can help in your decision-making process. Remember, you are the expert about what matters most to you, and it’s best to share this information with your loved ones in advance of any unforeseen need.
Talk to your doctor
Have a conversation with your doctor to make sure he/she understands your preferences and future goals for care. It’s often easiest to start with the basics. Bring this up at one of your next visits.
Your doctor and other health care providers can make sure your wishes are known and followed, but only if you have made that information known.
Record what matters most to you
Once you have chosen your health care representative, and you’ve decided on your preferences and priorities for future care, fill out an advance directive. Depending on the state in which you live and receive care, the requirements for witnessing and/or notary differ.
Return your completed advance directive, witnessed or notarized
The most important step now is to have your wishes recorded in your hospital’s medical record system. Be sure to make copies of your signed advanced directive. Give a copy to your primary doctor and to your health care representative.
If you are admitted to a hospital for the first time, make sure you or your health care representative gives a copy to your health care team.
Send only a copy of your advance directive. Keep your original in a safe, yet easily accessible place.
Another prudent step is to scan a copy of your completed and signed advance directive and share the scanned document with your health care representative and close family who are likely to be notified if you were injured or suddenly became seriously ill.
Continue the dialogue
You may have several conversations with your doctor, and over time your wishes and goals may change.
Continuing the dialogue ensures that everyone who will be involved in decisions about your care understands your current preferences. You can change your choice of health care representative and preferences any time. If your wishes change, simply fill out a new advance directive and tell your health care representative, your family and give a copy to your doctor.
Review your wishes regularly
Review your health care wishes whenever any of the “Five Ds” occur:
- Decade – when you start each new decade of your life, or experience a significant life change, such as your child turning 18.
- Death – whenever you experience the death of a loved one.
- Divorce – when you experience a divorce or other major family change.
- Diagnosis – when you are diagnosed with a serious health condition.
- Decline – when you experience a significant decline or deterioration of an existing health condition, especially when you are unable to live on your own.
Remember, having a conversation about serious illness always seems too early – until it’s too late.
To get a toolkit for preparing your own advance directive, click here.
For deeper reading:
The Providence Institute for Human Caring »
6 tips for creating an advance directive »
Talk about what matters: One man’s story of honoring his wife’s last wishes »
Advance care planning: Give your loved ones the gift of knowledge »
Providence St. Joseph would like to thank Shar for being a paid partner with us on this important topic.
Providence is pleased to share the stories of great people who have overcome health conditions. As part of our population health program, we want to share insights and stories that help bring awareness to common health conditions. Not all the people featured in our stories are Providence patients.