Personal family experiences with my parents and grandparents and a four-decade-long career as a bedside nurse and an administrator in oncology, hospice and intensive care has given me an appreciation for the complexities of end-of-life decision-making.
As a 24-year-old nurse working in my hometown hospital in Wisconsin, I had just finished helping to bathe my 94-year-old great grandmother when she died. I calmly walked to the desk and told the physician sitting there what had happened. He said, “Shouldn’t we try to resuscitate her?” To which I responded, “Heavens…NO”. There was no DNR order in place. Today, she would have been subjected to a CPR attempt. Instead, I went back in and sat with her body until other family members arrived. I was 8 months pregnant at the time, and a few days earlier, she had pointed out to her doctor that I was carrying her first great-grandchild. We didn’t talk about it directly but she knew that she would not live to see the child born. Had she been subjected to CPR, I would have regretted not talking directly about her wishes.
Serving as an ethics consultant at Boulder Community Hospital has allowed me to be with patients, family members and members of the care team when the decisions being made are difficult. Many factors play into a challenging situation, including a complex medical picture with an unclear outcome, family dynamics and a patient who has not written or spoken about his or her wishes and is now unable to communicate.
My husband and I wish to avoid being the subject of an ethics consult. We have created MDPOA (Medical Durable Power of Attorney) documents and, using the Starter Kit this past Thanksgiving, we have had a family conversation, attended by his adult son and daughter and my two daughters. It is our hope to lighten the inherent burden of decision-making.
Constance Holden, RN, MSN is recently retired from Boulder Community Hospital. She served as the Executive Director of Hospice of Boulder County (now known as TRU Community Care) from 1994-2001. During her career she worked at six hospitals and four hospice programs in three states.
My family and I have lived in Boulder since 1975. I have worked in various Emergency Departments in Boulder County, but have been an Emergency Medicine physician and faculty member at the CU Health Sciences Center for the past 28 years. For the past 20 years, I have been a member and the lead ethics consultant for the Ethics Committee at University of Colorado Hospital, as well as a community member of the Boulder Community Hospital ethics committee. My passion is not only being with families, but also teaching health professional students and resident physicians that part of good health care is listening, being empathetic, staying curious and being humble about what they can offer families at these critical turns in their life stories. Dying is a part of life for all of us, and one that we need to become more comfortable sharing with each other.
In my roles as physician, ethics consultant, teacher and daughter, I have shared in the distress it causes families and medical providers when people haven’t made their wishes and values clear. For some people, dying is best on machines, for others it is in a home or hospice setting. Some choose to embrace, and some to refrain from, medical technology as death approaches — expectedly or without warning.
For me, the exciting part of The Conversation Project is the way it encourages people to talk before they face critical and urgent choices of the Emergency Department or the ICU. More than deciding about procedures and technicalities, the project is about talking — sharing values, fears, and what is important. It is a way to nurture community and family.
I, too, come to this project with personal stories of good and of difficult deaths in my family. In my family, we have used the Starter Kit to nurture talk about subjects that we used to avoid as too difficult or “asking for trouble.” The Conversation Project is a wonderful way for me to give back to the community and encourage people to have this important chance to share and honor each other.
A litigation attorney by training, Phyllis brings a compelling passion to The Conversation Project in Boulder County based on personal experience, service as a chaplain and hospice volunteer. Phyllis is also a certified teacher, a professional freelance writer and ordained Zen Buddhist chaplain. She worked as an EMT for ten years, both in the field and as an ER tech in Steamboat Springs, CO. Phyllis also has experience as a Risk Manager for a community hospital, giving her a broad understanding of the healthcare system. In 2011 she participated with Centura Global Health Initiatives in a medical mission to Nepal. Phyllis also serves as a Regional Consultant for The Schwartz Center for Compassionate Healthcare.
As a chaplain, Phyllis worked for three months in a medical ICU in a large teaching hospital, giving her a deep understanding of how miscommunication and lack of advance care planning can create much suffering at the end of life. It was this experience that compelled her to focus on helping families have important conversations early, well before anyone is admitted to an ICU.
Phyllis received her BA in theology and English from Boston College and her JD from Rutgers University. An avid adventurer, Phyllis loves all things outdoors from running, mountain biking and cross-country skiing to swimming and rowing crew. Her three sons and their families live in Steamboat, Seattle and Panama, giving her great excuses to visit beautiful places.
Fran Myers found her work in hospice to have been the most profoundly rewarding in her healthcare career. A dietitian, ethical issues around tube feeding and “force feeding” informed her belief in the importance of timely, well considered decisions around end-of-life. Fran has presented Advanced Directives programs to groups of healthcare providers, community gatherings, families, and individuals. She is passionate about the need for these important conversations to take place in the living room, not the Intensive Care Unit.