As executive director for the National Consumer Voice for Quality Long-Term Care, Lori oversees and contributes to the organization’s policy, advocacy and program activities; leads the organization’s fundraising efforts; establishes strategic partnerships with organizations and federal agencies working on issues related to the provision of long-term services and supports; and establishes the strategic direction of the organization.
What is one thing we, as a society, can do to improve end-of-life care?
Communicate with our loved ones what we want our experience to be at the end of life. It’s uncomfortable to talk about dying. But unless we learn to feel comfortable talking about what we want for ourselves, and are open to listening to our friends and family express their preferences, we’re giving up the power of self-directing our own experience. Too often it’s one family member’s ideologies or inability to let go of a loved one that get in the way, sometimes resulting in treatments when we are unable to speak for ourselves that we would never have wanted!
How could it work?
Decide that you’re not going to be afraid to talk about it again, and then look for opportunity. For example, I’ve started raising the issue with my own family when I hear someone else’s story on the news. By starting it as a simple conversation at dinner, “Did you hear the story today about ___,” I find it easier to then talk about what I would want for myself if I were in that situation. About a year ago, an elderly family member with late-stage dementia was hospitalized due to an illness. I found it was a good opportunity to talk to my family about what quality of life means to me and what kinds of treatment I would have wanted — and not wanted — if I were in a similar situation. And my family members were able to share their thoughts and wishes with me. By taking advantage of the openings that come up in everyday life, over time you can ensure your loved ones understand what your end-of-life wishes will be.
How would it benefit people?
I’ve had the privilege of observing the end-of-life care provided to several family members and professionally hearing numerous stories from the loved ones of others, as well as from caregivers and advocates, that relate positive and negative end-of-life experiences. As a result, I’ve learned that anything we can do to open communication and make discussions about end-of-life care and death less scary would benefit our own personal experience as well as those around us. It would prevent some unwanted medical treatments and greatly increase the likelihood that we will have more control over our own end-of-life experience.