'I didn't feel alone:' Debunking the misconception of hospice care

Of all the obstacles preventing families from initiating hospice care for their loved ones, perhaps the most common is perception.

The word "hospice" is often accompanied by thoughts of end-of-life plans, if not a synonym for dying itself. Misconceptions of what the service entails, however, can prevent both patients and their families from reaping its benefits at a critical time in their lives.

While hospice is, by definition, a coordinated program of services designed to meet the needs of patients and their families in the final days of life, it's anything but "giving up." With a guiding philosophy that's focused on enabling individuals with comfort, dignity and fulfillment in the time they do have left, hospice affirms life in the highest regard.

Dr. Donna Lake, a clinical associate professor at East Carolina University's College of Nursing, admits that even her lifelong career as a nurse didn't equip her for what her mother's stroke was to bring.

"I found my experience as a nurse did not provide me with the knowledge or skills to care for my mother, who appeared to be at the end of her life," Lake recalled.

Lake found herself knee-deep after the stroke, providing care 24/7 care for nearly two weeks. Exhausted and sick with pneumonia, she contacted hospice for support.

"When I saw how grave mom's health was growing, I contacted the hospice specialist nurse immediately," Lake said. "They conducted a home visit within hours and their team, including a doctor, assisted with mom's care plan."

With in-home hospice care, Lake's mother received personalized medical attention and support in a familiar, quiet room in Lake's home, rather than an unfamiliar medical facility. Not to be overlooked, however, is the equal, if not greater, benefit hospice provided to Lake and her family.

"Hospice allowed flexibility versus rigid visiting hours. Everyone had the opportunity to be with her peacefully without all the noise of a sterile medical environment," Lake said. "The hospice benefits I experienced provided a familiar environment, a complete care plan, personalized care and support by an experienced hospice-trained nurse."

Lake also felt an unexpected sense of camaraderie from the team, almost like the nurses were an extension of her family.

"During the two intense weeks and the emotional ups and downs of my mother going in and out of consciousness, I found nursing care to be personalized and very supportive of me and my family," Lake said. "I truly didn't feel alone, and I felt safe and less stressed about my mother's care."

Her mother was eventually transitioned to the 3HC Kitty Askins Hospice Center for continued care, demonstrating that hospice services can be carried out anywhere, including patients' homes, rest homes, assisted living facilities, and inpatient facilities.

Much like hospice care isn't married to a location, it's not a one-size-fits-all in how care is approached, either. Plans are completely customized to the needs of individuals and their families and may involve pain management, counseling, spiritual care, medications, equipment, supplies and bereavement services.

Among the most touching benefits of hospice is its elimination of the need for family members to play double duty as loved ones and care providers, which can create guilt in both the caregiver and the patient.

"Hospice staff allowed me to be the daughter and not the sole caretaker nurse," Lake shared.

While Lake considers her story a "happy ending," with her mother transitioning in good health out of the Kitty Askins Hospice Center after six weeks, hospice teams and inpatient centers aim to provide all of their patients with happy endings, regardless of whether that means returning home or peacefully saying goodbye.

Lake reflects on the experience with positivity and is an avid believer in the team of caregivers that were united in the common experience of caring for one of the most valuable people in her life.

"I tell people, don't hesitate to connect with a hospice team."