Facilitators ease conversations with loved ones about end-of-life decisions
Judy Grussing, of Rantoul, wishes her husband had been more willing to talk about his end-of-life choices. Delmar, her husband of 52 years, was diagnosed in 2018 with amyloidosis, a rare disease that causes excessive protein to accumulate in the blood, wreaking havoc on the body’s systems. The retired farmer and deputy sheriff had swollen ankles and other symptoms, to which his physicians didn’t pay enough attention.
A stubborn and private person, Del wanted only Judy, an experienced caregiver with training in hospice care, as his primary caregiver.
“We were endlessly in and out of the hospital during the last three and a half years of his life,” Grussing says. Intensive care doctors repeatedly asked him to sign DNR (do not resuscitate) forms — he had been resuscitated dozens of times — but he always refused. “Del would not accept his demise. He loved life and maintained a strong will to live.”
In hindsight, Grussing, 76, says she wishes she’d had more support in those attempted conversations. End-of-life care discussions never start out easy.
Many people, fearing the inevitable, avoid the topic altogether. Though daunting at first, taking time to share your thoughts and goals with your loved ones can actually feel empowering.
“We always say, accidents and serious illness can happen at any time,” says Hannah Harrison, program manager for Supportive Care at OSF HealthCare. “We want to hear your voice — your wants, wishes, hopes, and fears — before you’re unable to speak for yourself.”
For Judy and Del, that conversation finally happened when Carol Amfahr, a nurse practitioner at OSF HealthCare Heart of Mary Medical Center in Urbana, entered Del’s room during his final hospitalization.
“She had a way of engaging him in that very difficult conversation, so he would understand he wasn’t giving up,” Grussing says. “He accepted it, and it was amazing.” At last, he signed a DNR and agreed to palliative care.
The goal of end-of-life talks
In end-of-life conversations, consider naming an agent and healthcare power of attorney, and putting decisions about care in writing while you’re healthy — all wonderful gifts to your loved ones. These steps spare them the burden of making difficult choices, such as whether to resuscitate or not. Choices you make ahead of time eliminate uncertainty and help prevent family squabbles.
And you don’t have to approach the conversation with a loved one alone. OSF HealthCare, for example, trains doctors and staff via digital modules and role-playing simulations, to have these delicate conversations. Advanced care planning appointments last about 30 to 60 minutes in an outpatient office setting, and patients leave with a set of papers that outline their healthcare wishes.
“It helps patients have less anxiety and less fear knowing their healthcare team and families understand their decisions,” Harrison says.
Certified in hospice and palliative care, Amfahr works in inpatient palliative care and trained with OSF to guide patients through advanced care planning and discussion of their goal of care, including whether they would want palliative and hospice care. “People don’t transition soon enough to palliative care and/or hospice,” Amfahr says. “Studies show that people who engage in hospice early actually have a better quality of life, longer than if they didn’t.”
Yet most people start hospice the last week or month of their lives because of fear. “In the past, hospice was a taboo word,” Harrison says. “We’re really trying to work toward [the notion that] this is not something scary, it’s here to make you comfortable, to help you and help your family. We want you to have that support.”
Harrison adds, “Dying is personal and includes the whole person in all aspects such as physical, spiritual, psychological, emotional, social, and cultural.”
Catherine Durkin Robinson, death educator and owner of Anitya Doula Services in Chicago, is on a mission to take the mystery out of dying and normalize conversations about death. A certified death doula, she helps people prepare for dying, just as birth doulas prepare pregnant people for childbirth.
While everyone’s journey differs, Robinson talks with people about what to expect at end-of-life and how to get their affairs in order. She often writes ethical wills, explaining the values that guided the person, as well as legacy letters, which contain words of encouragement for loved ones’ future weddings, graduations, and childbirths.
“It helps patients have less anxiety and less fear knowing their healthcare team and families understand their decisions.”
Robinson also helps people communicate what she says are the four primary things that come up at the end of life: I’m sorry, I love you, I forgive you, and goodbye.
Regardless of the way people get those messages across — video calls, text, phone or in-person — once they do, Robinson says they’re less likely to suffer emotionally or spiritually. “Sometimes they just need support or hand holding while doing this work,” she says.
Often, Robinson says she hears people say at the end of life: “‘This is so much better than I thought it would be,’ even clients who voluntarily stop eating and drinking. There is so much fear wrapped up in death, to hear clients say that this has been joyful is really what I want for everyone.”
Del didn’t have a death doula. He came home in 2021 with palliative care but within a day or two, required hospice. He said goodbye to his five living children and 33 “grands and greats,” before passing away at 85, on his fifth day of hospice.
Once Del had passed, Grussing was grateful hospice handled the medical equipment, assisted with paperwork, and offered emotional support.
“In the end, my husband passed, and I will be more prepared for palliative care when the time comes,” Grussing says, noting she was healthy prior to becoming his caregiver and now has heart problems that are being addressed.
Robinson emphasizes that the more comfortable people become talking about end-of-life, the more prepared they will be to accept it. Rather than fear and denial, they have the chance to leave in peace.