Dying is an uncomfortable topic of conversation. No one wants to bring it up, not even our doctors. Unfortunately, this leads to miscommunication about how a person wants to die.
In fact, about 7 in 10 Americans would prefer to die at home, but only about a quarter of them actually do.
“There is a fundamental disconnect between what happens and what we want, and that stems from a lack of communication about dying,” said Frank Bennett, MDiv., senior fellow in the University of Minnesota Center for Spirituality & Healing and former hospital chaplain and minister.
“Most care providers frame the conversation around therapeutic interventions, because that’s their focus, but patients think in terms of goals, hopes and fears,” Bennett said.
That’s why the Center for Spirituality & Healing developed a new initiative, Living Well Dying Well, to help people live as well as possible until they die. It incorporates education, resources and support for everyone around the healthcare triangle: individuals, their family and loved ones, and providers.
The hope is that talking about dying could ease grief, anger and confusion for patients and loved ones. Having end-of-life care discussions could also help health professionals provide better quality care catered to each patient’s individual needs, and reduce the significant burden of health care costs that occur near the end of one’s life.
Bennett led the first course last fall with Susan O’Conner-Von, Ph.D., R.N. O’Conner-Von is the Director of Graduate Studies in the Center, an associate professor in the University of Minnesota School of Nursing, a longtime pediatric nurse and hospice volunteer.
Bennett and O’Conner-Von gave Health Talk insight on how patients, providers and family members can have these tough, but essential, conversations about dying.
Lay out an advance care directive, and use that as a platform for the conversation. It’s ok to feel scared or emotional; take this as an opportunity to reflect on what you want for what remains of your life.
For loved ones and family members…
“A main barrier to these conversations is the grief process,” said O’Conner-Von.
An impending death can leave loved ones angry or in denial. The road to acceptance varies greatly with each person, and the emotions involved can complicate end-of-life care discussions. The best advice Bennett and O’Conner-Von have: just listen. Talk about your own fears and concerns, but respect the patient’s choices.
For care providers…
It can be emotional or uncomfortable to talk to your patients about dying, but most people want to have these discussions. And Medicare now reimburses physicians for end-of-life counseling, so these conversations will be happening more and more often.
Patient-provider discussions often focus on the next treatment, or how to stay alive at whatever cost. But how that treatment will affect the time remaining in a patient’s life, and what he or she values in life, is often overlooked. Have an honest conversation about what the patient wants, and how each treatment may impact that.
“Only the patient can define quality of life. As a provider, you are there to advocate, to give a voice to the patient,” O’Conner-Von said.
Understanding a patient’s perspective will help shape care to maximize that patient’s perceived quality of life for as long as possible.
The key, Bennett says, is having a patient-centered focus.
“We used to view the end-of-life as an important time to communicate wisdom, love and appreciation, or seek reconciliation,” Bennett said. “Now, it’s seen as a defeat in battle. But the end of our lives presents an incredible harvest of memories and life lessons, and we should encourage that.”
Visit the Center’s Taking Charge of Your Health & Wellbeing website for more resources about coping with grief and evaluating the best options for each individual at the end of life.