Forty health care and community stakeholders from Contra Costa County, California, met in April 2013 to strategize ways to promote and support end-of-life conversations, with the goal of getting more people to express their wishes and empowering the medical community to honor patient preferences. The meeting was co-led by CHCF and The Conversation Project, a national initiative created to encourage and make it easy for people to talk with their families as well as with their doctors about the care they would want if they became seriously ill.
Improving end-of-life care in Contra Costa County is a shared goal of the local medical association, area hospitals and hospice organizations, and community and faith groups, all of whom gathered to:
- Hear why our culture needs to change from one that does not talk about end of life to one that does
- Learn from the parallels between social movements of the past (for example, civil rights) and the current movement to ensure that people receive the kind of care they want at the end of life
- Learn about grassroots community organizing and how to leverage local organizations’ spheres of influence to spur change
Speakers included Judy Citco, executive director of the Coalition for Compassionate Care of California, and Ellen Goodman, Pulitzer Prize-winning writer and cofounder of The Conversation Project. Read the meeting summary to learn why personal stories are vital to cultural change, and why now is the time to have “the conversation.”
The meeting summary is available as a Document Download.
Scary, right? I would just like to add my two cents worth in as a nurse, a mother, a child of God. My mind immediately harkens back to the first days of the HIV crisis. I am not sure why particularly HIV, but I think of the strength and beauty of Ryan White and his mother, the absolute ugliness of human fear and lack of knowledge and compassion that they were met with in the face of their personal tragedy.
Please reach down inside yourself and approach this newest issue with courage, compassion and realize that these are fellow HUMAN BEINGS who are being struck with this horrific disease. Yes, hate the disease, even fear it – but use these emotions to propel you to find out how to actually protect yourself and those you love and do not ostracize those unfortunate enough to contract it. They need intellect, compassion and love. Humanity is uplifted when we approach the unknown with our eyes and hearts open. This is not the first, nor will it be the last frightening unknown thing to enter our world. God’s got it. We will make it.
I have looked directly into the eyes of so many people about to step over this threshold into the next – from heart attacks, massive infections that I sometimes have to completely glove and gown for to care for them (yes, throughout the US), various end stage diseases They are you and me at the end of life. I have comforted their loved ones, caregivers during this time, trying to smooth the transition. What has proven to be the most important thing during this time is pain control, education of process, LOVE!!!!! Is this not what you and I both hope for at the end of our days?
Imagine you are the one struck with Ebola, or MRSA or ESL or VRE or the mirage of infectious diseases that require everyone that you come in contact with the leave wear yellow gowns, gloves and masks each time they enter your room. That is how you now experience the world. The communication you would experience at that time is the expression in your loved ones’s eyes, are they willing to hold your hand? You didn’t not ask for this, but here it is. Pulease, please educate yourself on the disease, take every possible precaution, and empathize – not ostracize – those stricken. Thank you.