Monday, March 16, 2020


Deciding How You Want to Live in the Time of COVID19

People don’t like to talk about politics, religion or money. To that we would add advance care planning. And to that we would add there’s been no time in recent memory when it was more important to name someone to speak for you if you can’t speak for yourself…which is what happens when you’re on a ventilator!

Advance care planning is the process of clarifying your life goals and values and making sure your healthcare preferences are known and honored.

Most Americans today will die from complications of chronic illness, with slow and uncertain disease paths, affected by dementia, and 85% will die without capacity to make decisions.

So why are two-thirds of Americans still leaving it up to their doctors and ill-prepared family members to make decisions about care and life-prolonging treatments? Maybe you’re familiar with some of these mistaken beliefs that lead people to avoid advance care planning:
·      I’ll always be able to make my own decisions.
·      My family already knows my wishes.
·      My doctor will know what’s right.
·      I’ve written it down so I don’t need to talk about it.

Solutions Offered

The Center pioneered advance care planning in the 1980s and continues trailblazing work to make the patient voice heard.

·      Counseling – Responding to calls for guidance in a personal or family healthcare crisis. Call us at 816-221-1100 if you need help.
·      Resources – Providing Caring ConversationsÒ workbooks in English and Spanish.
·      Employee Benefits – Offering advance care planning education and support through corporate employee benefit programs.
·      Cultural Competence – Developing curricula and holding workshops to encourage advance care planning in African American faith communities.
·      Seriously Ill Patients – Training Missouri and Kansas providers to document seriously ill patients’ goals of care as physician orders.
· – Enabling family and providers to easily access advance care planning documents and video testimonies online.

Three Lessons Learned

1.     Advance care planning is for everyone. A medical crisis could leave you too ill to make your own healthcare decisions at any age.
2.     Start with the conversation. Share your wishes with someone you trust to speak for you if you can’t speak for yourself.
3.     This is not a one-and-done process. Wishes change through various life stages. Revisit your plan.

Things happen. People have accidents. Get chronic illnesses. Receive life-threatening diagnoses. And, now, pandemics.

Advance care planning is not about death and dying. It’s about how you want to live.

April 16, 2020
National Healthcare Decisions Day

Founded in 2008, National Healthcare Decisions Day is a collaborative effort of national, state and community organizations to inspire, educate and empower the public and providers about the importance of advance care planning.

Labels: , , ,

A Family’s Journey to Peace of Mind

Jama’s mom had been living in a long-term acute care facility on dialysis and a ventilator for nearly five months. Dad was by her side 24/7.

“One day, as my sister and I were walking out, I looked at her and said, ‘I think mom is dying,’” said Jama. “We started crying. Of course mom was dying, but no one had told us…or Mom.”

Call the Center

Jama and her siblings began insisting that the doctors at least be honest with their dad about Mom’s failing condition. Dad thought he had to seek heroic efforts because of religious beliefs. All along Mom thought she was going to get well enough to go home.  

“There wasn’t anyone to guide us through it,” said Jama, “so I called the Center.

“The staff there helped us understand who we needed to ask for what and how to talk honestly with Dad about Mom’s situation. When the doctors finally told Mom that she would live on a vent for the rest of her life, she said take it out. She died peacefully within hours. 

“The work and wisdom of the Center helped move us from anguish to grief and finally peace of mind.”

Monthly Giving

That was five years ago. Today, Jama and her husband Carl are monthly donors to the Center because they want to ensure that the resources that helped them are there for others.

“The Center helps people in so many personal ways,” said Jama. “They focus on education and policy issues that aren’t trendy or glamorous but that we, and everybody we know, will eventually face.”