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.
Amanda joined TRU Community Care in partnership with The Conversation Project in Boulder County as project coordinator.
She is a social worker and gerontologist with a history of more than five years working in both long-term care and rehabilitation. In these settings, Amanda has gained experience with chronic illness case management, end-of-life issues, and advance care planning.
The end-of-life process and death are avoided topics in our culture. She truly believes that encouraging people to think about personal values and to communicate them to their loved ones opens the door to changing perceptions about end-of-life. She looks forward to getting out in the community to empower people to take charge of their own decision-making journey!
Scott has worked with co-founder Constance Holden off and on as a graphic designer since Constance was the director of the Boulder Hospice in the late 1990s. While working for the Boulder Hospice, Scott wrote and produced a music CD entitled “Passages” dedicated to hospice, as a way of honoring life coming into the world and life passing on.
Hospice had cared for both of his parents during their decline, when his father was dying from cancer in 1999, and with his mother who recently died from dementia.
Scott is the founder and executive director of World Singing Day, a global sing-along on the third Saturday in October each year, which brings communities together through the international language of music. Scott is also a songwriter and photographer, and co-founded the Positive Music Association.
Scott and his wife Myriam have lived in Boulder since 1993 and have two grown daughters, Sarah and Eva.
Claire holds a Master’s Degree in Psychiatric Nursing from the University of New York at Buffalo. Her main focus in her 50 years in Health Care has been on the psycho/social aspects of wellness/illness and on the systems of delivery of care .
Coming to Boulder in 1980, Claire joined the team of Boulder County Hospice (now TRU Community Care) as their Director of Nursing. She participated in the Medicare Demonstration Project which after 3 years of research resulted in the Medicare Benefit for Hospice Care. In 1986, she was recruited by Boulder Community Health to create the Behavioral Health Inpatient Unit. Claire became a mediator in 1991 having studied and interned with the Center for Dispute Resolution in Boulder. In 1993, Claire accepted a position at the hospital to enhance their Patient Representative Program which she did until her retirement in 2014. She served on the Clinical Ethics Committee there for 16 years.
Claire currently serves on the Board of Directors at TRU Community Care and is a long-standing member of their Clinical Ethics Committee as well as volunteering as a coach with The Conversation Project. Claire continues to practice as a private Health Care Mediator in the community
Eben Carsey, MD, is a retired pediatrician. He is currently doing some work as a spiritual director following up on the Masters of Divinity degree that he secured prior to medical school. He serves as a member of the Boulder Community Health ethics committee.