NextAvenue.org – Lisa Cassaro and her husband were in their 40s, living in Orcutt, Calif., when they learned about advance care planning in the most difficult way possible. Jeff Cassaro had no apparent health issues when he suddenly broke his arm one day while unplugging a fan. Doctors diagnosed him with Stage 4 kidney cancer. He died 18 months later at the age of 49.
Even though both had children from a previous marriage, the Cassaros had not prepared their wills, never chosen a health care proxy (someone you choose to make health care decisions for you when you can’t do it) and never filled out an advance directive, a legal document explaining how you want medical decisions to be made if you can’t make them yourself. Read more…
It was Mother’s Day 2005, a beautiful spring day with a high blue sky. Our family had gathered in Charlottesville for the weekend, and we had a restaurant reservation for dinner that evening. I remember that my dad and mom, ages 82 and 81 respectively, went for a walk around the neighborhood before dinner. They held hands. Dinner was wonderful. Three hours later we were in the Emergency Room at UVA Medical Center, and my mother was inches from death.
Even at 81, my mother was still working, almost full time. She still got her hair done every other Saturday and a manicure on alternating Wednesdays. When she got dressed for church on Sundays, she still wore three-inch heels. She’d had diabetes for many years, and it had damaged her vision. A few times a year, she would get a urinary tract infection (UTI). But she was still an active and independent person. What we didn’t know that beautiful day was that she had one of those UTIs. Apparently without symptoms; it was raging through her body. Back home after dinner, she went from feeling slightly unwell to unconsciousness. It took minutes. A few more minutes, and she was in the Emergency Department. When they told us to leave her bedside, she was surrounded by machines. Every one of them had an alarm, and every alarm seemed to be screaming. My mother was crashing.
One of the doctors came to us in the waiting area and said Mom was having trouble breathing on her own. The doctor asked if she would want to be intubated. We had no idea. Did we want them to intubate her? They needed an answer. We sat frozen.
As a social worker, I had an understanding of the question in front of us. If we said no, then that person who had been talking and laughing with us just a short time ago, would likely die. If we said yes, she might survive, but perhaps not as the woman we knew. She might have permanent damage to her brain, or kidneys, or other organs. We might be condemning her to a life of dependency and limitations. Would she want that? Would she forgive us for that?
My father, brother, and I agreed in that moment that she should be intubated, and the doctors proceeded. We were very lucky. Mom survived, and she lived another five years. Within a month, her thought processes were clearly confused. It was the start of Alzheimer’s disease. She had a couple of years of generally pleasant confusion, a couple of years of difficulty mixed with some fear, and then one horrible last year.
But I still remember that time in 2005, sitting in the ICU room, and waiting for her to open her eyes. Eyes of recognition? Eyes of sadness and reproach? I would not wish that kind of vigil on anyone.
But our family learned from that experience. By the time that last year came for my mom, we had taken the time to think through how we would make the important decisions. And three years after that, when my father died, we were prepared for him too. It has been a great blessing for all of us to be prepared.
April 16th is National Healthcare Decisions Day; may it inspire you to start the conversation about advance care planning with your loved ones. To help you get started, the CVADC is offering FREE Zoom workshops on April 20th and April 22nd in collaboration with the Haney Conference and Honoring Choices Virginia. To register, visit honoringchoices-va.org/learn/events.
The Conversation Project – Death looms larger than usual during a global pandemic. An age-friendly community works to make sure people are connected, healthy and active throughout their lives, but it doesn’t pay as much attention to the end of life.
What might a death-friendly community ensure?
In today’s context, the suggestion to become friendly with death may sound strange. But as scholars doing research on age-friendly communities, we wonder what it would mean for a community to be friendly towards death, dying, grief and bereavement. Read more…
To recognize National Healthcare Decisions Day 2021, the Central Virginia Advance Directives Collaborative is excited to partner with Honoring Choices Virginia to offer two FREE public Zoom workshops on advance directives! Join us, April 20th (5:30 pm – 7 pm) or April 22nd (10:30 am – 12 pm) for My Care, My Choice: Tools to Help You Have a Say in Your Care if You Can’t Speak for Yourself. All Virginians are encouraged to join to learn more about how to ensure you have a say in your care, even if you can’t speak for yourself. The workshop will focus on talking about making a plan, creating an advance directive, and much more. For more information and to register visit https://honoringchoices-va.org/learn/events/
Hospice of the Piedmont – Hospice of the Piedmont will be launching a virtual series of events called Community Conversations. The first event, which takes place on March 10, at 2 p.m., focuses on how patients can take control and find their voice at the end of life. Maintaining quality of life after receiving a life-limiting diagnosis requires more than just medical treatment—it requires that patients have a voice in their care. During this one-hour live online event, Hospice of the Piedmont will dive deeper into a dialogue around this topic.
President & CEO Ron Cottrell will be joined by Chief Medical Officer and Director of the Education Institute Dr. Tim Short for a thought-provoking conversation about the trajectory of patient care after a life-limiting diagnosis. Mr. Cottrell will share a personal testimonial of how his family’s life was impacted by a terminal diagnosis, and Dr. Short will share his perspective on patient care at the end of life, backed by years of clinical and educational experience as a palliative care and family medicine doctor. Through this discussion, participants will have the chance to learn more about patient-centered options for comfort and compassionate treatments in the face of terminal illness.
Participants who tune in for the live event will have the chance to submit questions and voice their concerns about end-of-life issues during the question-and-answer segment. Medical staff and other members of Hospice of the Piedmont’s interdisciplinary team will be on hand to answer questions and address concerns. The live event will also be recorded and available for viewing after March 10.
NextAvenue.org – Deborah Carr, professor and chair of the sociology department at Boston University, has spent much of her career studying death and dying. That expertise led, in 2019, to an invitation to write an article in the Annual Review of Sociology about well-being at the end of life. Read more…
NextAvenue.org – For parents of adolescent children, the toughest talk is sitting down with the kids and discussing the facts of life. But for adult kids, the toughest talk can be sitting down with their elders and discussing their life and death decisions. COVID-19 has made that very personal talk far, far more complex — but even that much more critical.Read more…
We talk a lot about how we want to live our life. What are our goals? And yet, we often avoid a discussion about our goals for end of life. This has come more to the forefront during COVID.
Moderated by JABA CEO Marta Keane, this webinar will explain the importance of advance care planning, and how to approach it- what resources are available and who should be part of the discussion. Nathan Kottkamp and Dr. Angela Stiltner have a long history of advocating and educating on this topic. They will share their expertise and answer questions. It is time to start the conversation!
Would You Like to Make an Advance Directive or Supported Decision-making Plan? The disAbility Law Center of Virginia (dLCV) is offering FREE legal assistance to individuals with disabilities to create their own Advance Directive or Supported Decision-making Plan.