“I’m not sure I’d say much at all, not at first. I would just try to listen.”
This in response to the question of how a hospice nurse should respond if patients or family members make demands that seem unreasonable, unwise, or downright impossible.
“Patients and family members in end-of-life situations need to be heard. Sometimes they just need to have their anger and frustrations acknowledged. Sometimes they have an important request. Active listening, including empathetic silence, goes a long way.”
Laura Ptucha-Skoog should know; she has been an R.N. for decades and a nurse at Hospice of the Foothills for the last nine years. She loves her job, including the challenge of facilitating communication. Her ability to talk frankly with terminally ill hospital patients and families drew her to a career in hospice.
“Often,” Laura explains, “the human elements are as challenging as the medical ones. Things like asking the right questions and listening to responses; making sure your patient and their caregivers understand what you are doing and why; verifying that everyone understands where you are in the process; listening to their responses with patience and empathy.”
Unless they suffer from dementia, patients are usually aware of their prognosis, and what it means when a hospice nurse arrives on the scene. Even so, a typical first question of a patient is to ask them what their understanding is of their condition. Local clinicians refer terminally ill patients to Foothills Compassionate Care when they have six months or less to live. The referral is evaluated by an admissions team; an intake coordinator then matches the nurses to the patients. Even if there seems to be an understanding about the end-of-life care being offered, Laura asks the patient what they would like to see happen in the weeks or months ahead.
“Again,” says Laura, “you just listen. A few are still in denial. A few locked in anger. Most have reached a stage of acceptance. They might even express gratitude when you describe what they can expect in the days and weeks to come. “‘Finally,’ one patient told me, ‘someone is acknowledging that I’m dying and is actually talking about it. Thank you.’”
Laura says she is grateful for the support Hospice of the Foothills receives in Nevada County. “We cover a 50-mile radius, so I’ve served patients from humble shacks in the woods to expensive mansions on Banner Mountain. Mostly, wherever I go, I am met with a warm welcome. By now, most people know hospice is dedicated to helping people maintain their quality of life right to the end.”
Terminal patients who display a sense of humor or humility with hospice workers are therefore not uncommon. When asked if they have a special wish, a hospice nurse might share a laugh with a patient who asks to see the sunrise from atop Mt. Everest or experience the Northern Lights in Iceland.
Generally, patients have modest requests, like Laura’s patient, Jackie, who just wanted to have a birthday party in her backyard after months of being bedridden indoors. With a specific request such as Jackie’s, Laura might reach out for support. In this case, the Fire Department was called in and several firefighters carried her down her steep, narrow steps to her back yard. They even presented her with a cake and balloons. Thanks to Laura and other kind people, Jackie was able to celebrate her special day with her family of friends in the warm sun and fresh air just one week before her peaceful death.
Barbara, another of Laura’s patients, had a more elaborate request. She asked that “Full Circle of Living and Dying” be brought in, a non-profit group with trained end-of-life Doulas who organize ritualistic celebrations. Barbara’s friends and family gathered round her bed in a caring circle accompanied by music, incense, fragrant oils, and flowers. Laura had previously witnessed a Full Circle event and described it to Barbara: a large family with grandchildren and adult children had decorated a coffin with drawings and handwritten messages and flowers while everyone, young and old, sang and held hands and said their individual goodbyes. Barbara opted for a similar celebration, but with just a handful of friends and family who witnessed her peaceful, dignified death.
Full Circle encourages everyone to stay for prayers and chants after a death as the body is anointed and wrapped, placed in a casket, and carried from the house, essentially an in-home funeral ceremony.
Few patients or families opt for such extravagant closure. My mother, Margaret May, died five years ago at the age of 99 in a nursing home in Salt Lake City. The hospice nurses and the nursing home staff, some of the kindest, sweetest people imaginable, kept my mother out of pain as she drifted in and out of consciousness for a full week. My sister, my brother, and I kept a simple bedside vigil, as Mom would have wanted.
I softly sang or hummed her beloved “Moon River” over and over. Mom’s hospice nurse, Emma, quipped that my singing was quite enough to do anyone in. Emma encouraged us to give my mother permission to let go, which we did gently, softly. I repeatedly read to her a passage from my mother’s favorite novel, My Antonia. She cherished Willa Cather’s story, set in late 19th Century rural Nebraska. Blind from Macular Degeneration the last 10 years of her life, Mom often asked me to read to her a few chapters from the novel during my frequent visits to see her. On her deathbed, did my mother understand and follow the passage I read to her? I have good reason to believe she did…
When Father Norman, a Catholic priest, began administering the last rites, she suddenly opened her eyes and said, “I’m not afraid, Father. I want you to know I’m not afraid.” She then drifted off again shortly after he left. Days later, at 1:30 in the morning of February 29, 2020, a nurse’s aide moistened her morphine-dried lips and softly told her, “We love you, Margaret.”
“Oh, I love you, too,” Mom whispered with her last faint breath, the final moment of a long and beautiful life. We sent flowers to the staff and the hospice nurses the next day. The card read: “‘I love you, too’ –Margaret.”
In the passage I read to Mom from My Antonia, the narrator, Jim Burden, recalls a moment from his childhood when he encounters his grandmother’s teeming garden for the first time one fine September morning and—as boys are wont to do—promptly stretches out between the rows, the better to touch and feel and savor an experience with nature.
“The earth was warm under me, and warm as I crumbled it through my fingers. I kept as still as I could. Nothing happened. I did not expect anything to happen. I was something that lay under the sun and felt it, like the pumpkins, and I did not want to be anything more. I was entirely happy. Perhaps we feel like that when we die and become a part of something entire, whether it is sun and air, or goodness and knowledge. At any rate, that is happiness; to be dissolved into something complete and great. When it comes to one, it comes as naturally as sleep.”
Laura Ptucha-Skoog says she always feels privileged to be present at the end of her patients’ lives. A deathbed vigil can indeed be a privilege. Also, a joyous embrace of sorrow. We are witnessing something both human and transcendent: our loved one becoming a part of something entire, something complete and great.
Here’s to you, Laura. Here’s to end-of-life caregivers everywhere.