Palliative and hospice care teams offer a variety of comforts for patients and families facing life-limiting illnesses
Written by Jennifer Brunnemer Slaton
“We enjoyed so many good moments together, laughing and being silly,” says Kristy Schou of her husband’s final months. “He was quite the jokester.” At age 49, Hans Schou had received a grim diagnosis: stage four metastatic prostate cancer. Over the next three years, the father of two underwent a battery of treatments, from immunotherapy to chemotherapy. “He fought and fought and fought,” recalls his wife of 18 years. By February of this year, however, unbearable pain had left him housebound, unable to even attend his sons’ basketball games and swim meets. That’s when his Roper St. Francis Healthcare doctors introduced the family to palliative care.
Like 71 percent of American adults, the Schous were unfamiliar with this relatively new field of supportive medicine. Developed over the past two decades, palliative care focuses on improving quality of life in body, mind and spirit for patients with chronic advanced illnesses. Most people are more familiar with hospice, a similar resource for patients nearing the end of life. Both palliative care and hospice offer solace from the physical and emotional toll that life-limiting illnesses take on patients and their loved ones, but these branches of comfort care are distinct. Roper St. Francis Healthcare affiliated physician Dr. Joseph Ritchie helps us understand the similarities and differences between each model.
“Whether hospice or palliative care, the focus of our work is to relieve suffering,” says Dr. Ritchie. “We lean into the patient as a whole and incorporate their caregivers into that equation.”
Both palliative care and hospice care provide comfort, but palliative care can begin at diagnosis and be received along with treatment. Hospice care starts when treatment is stopped and it is clear the patient won’t survive the illness.
Both palliative care and hospice care provide comfort, but palliative care can begin at diagnosis and be received along with treatment. Hospice care starts when treatment is stopped and it is clear the patient won’t survive the illness.
Life Line
“What we needed most was pain management,” remembers Kristy. “Hans was on a full page of prescriptions.” The Schous explained to palliative care coordinator and nurse practitioner Amy Emslie that their goal was to make Hans as comfortable as possible while remaining coherent and present for his family. “Amy talked with us in depth about our routines and day-to-day struggles, offering emotional support while also helping with pain medication adjustments. His doctors and physician assistants were certainly involved as well, but you can’t call the PA every day,” says Kristy.
Dr. Ritchie explains that palliative care is appropriate at any age and any stage of a life-threatening illness and often coincides with curative treatment. An interdisciplinary team, including the doctor, nurse practitioner, social worker, chaplain and other needed experts such as physical therapists, helps manage symptoms like pain, nausea, fatigue, anxiety and shortness of breath. Whether the diagnosis is advanced dementia, advanced heart disease, liver failure, metastatic cancer, Parkinson’s disease or another long-term disease, these healthcare providers create a plan to ease suffering and improve daily life. Since much of the team’s work involves determining patients’ individual goals and wishes, it’s important to involve palliative care early in a diagnosis, while patients still have the capacity to make complex medical decisions and navigate what may be ahead. (See “What’s an Advance Directive?” below.)
“We’re at the bedside, at eye level, and we’re okay with not being okay. Allowing silence and emotion to be a part of our work is of utmost importance.” —Dr. Joseph Ritchie
after losing her husband to cancer. (Photograph by Sarah Westmoreland)
Light in the Dark
After three months on palliative care, Hans could no longer walk and doctors understood that his body was shutting down. Whereas palliative care patients may have many years of life ahead, patients who qualify for hospice have been given a six-month prognosis and are no longer pursuing a cure for an end-stage disease. “The hospice philosophy prioritizes quality of life and comfort, being with loved ones and not pursuing further disease-directed therapies,” says Dr. Ritchie.
Hans wanted to remain at home with his family while with hospice. At Roper St. Francis, patients have the option of either in-home or on-site care. Those needing around-the-clock attention for pain, anxiety, breathing issues or other symptoms can receive inpatient care at Roper Hospice Cottage in Mount Pleasant, an intimate 20-bed facility designed to feel like a private home. Like palliative care, hospice engages an integrated team, including doctors, nurse practitioners, nutritionists and grief counselors, to make a patient’s remaining days as comfortable and meaningful as possible.
As Hans’s care shifted from a palliative approach to hospice, Emslie connected the Schous with a number of useful resources, including a videography group that created for the family a chronicle of special moments. “Hans was able to say all the things he wanted us to know and remember,” Kristy says. He passed away two days after filming that keepsake.
“A big component of both palliative care and hospice is social work—counseling patients on how to process their emotions and experiences. We ask a lot of open-ended questions to explore how people feel,” says Dr. Ritchie. Simply being present with patients and families may be the defining characteristic of comfort care. “Bearing witness to someone’s burden can be quite powerful,” he continues. “We’re at the bedside, at eye level, and we’re okay with not being okay. Allowing silence and emotion to be a part of our work is of utmost importance.” Equally as essential is a dialogue with a patient’s loved ones. “We spend a lot of time with caregivers, sometimes just as much as we do with patients.”
Since her husband’s death, Kristy has stayed in touch with their palliative care coordinator. “Right before Hans passed, Amy held a phone meeting [due to COVID-19] with us to answer the kids’ questions and offer words of wisdom. Since then, she checks on us all the time and has given me resources for counselors and groups that fit.” Kristy encourages any family struggling with a long-term illness to inquire about palliative care. “Don’t wait to call,” she advises, “and be open. The palliative care team is full of knowledge. The more candid you are, the more help they can offer.”
What’s an Advance Directive?
An advance directive consists of two elements, explains Dr. Ritchie. “The first part identifies your medical surrogate. We ask patients, ‘Who in this world do you trust and do you feel would speak for you and be your voice if you couldn’t tell us what you’re telling us now?’ The second part is identifying your treatment preferences, or how you want to be cared for.” The process helps patients explore scenarios they may have never considered and allows them to prioritize what is most important. “Our team does everything we can to preserve a patient’s autonomy as long as possible. With a life-limiting illness, patients must do some serious soul searching and planning. Having these conversations and getting your wishes in writing as early as possible are always the goals. It’s about doing things upstream when a patient is well.”
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