Editor’s Note: This is the final part in the five-part series for caregivers. To read previous portions, please visit dailyitem.com.
When someone says, “The family has called in hospice,” everyone gets hushed and sad.
“I wish I could change everyone’s perception about hospice,” said Kathy Paul, RN, director of Hospice of Evangelical. “It sounds like people are giving up, but our focus is, let’s do everything we can to make every day as good as it can be.”
“When people hear the word ‘hospice,’ it is an emotional term in the sense that it does typically reflect that someone may be approaching the end of their life,” said Dr. Glen Digwood, Hospice and Palliative Care of Geisinger. “But the patient and family satisfaction of the hospice service has been consistently high through decades because these are people who are willing to talk about the difficult things and support people through them.”
Hospice is often associated with people who choose to stop getting chemotherapy for cancer, or certain medications for congestive heart failure, or end stage pulmonary disease, Digwood said.
“But the philosophy of hospice really is to focus on optimizing symptom relief for patients who have an incurable illness and to support their family and loved ones,” he said.
Hospice actually makes the last days as bright and fulfilling as possible.
“One of the most common things that people bring up is, ‘Oh I wish I would have gotten in hospice sooner with my dad. We didn’t get in until two weeks before he died, and if only we would have had this help beforehand it would have made it so much easier,’” said Dr. Alexander Nesbitt, Hospice and Palliative Care, UPMC in North Central Pa.
Hospice provides and pays for three main benefits, Digwood said. One is medicine for the individual’s illness. Second, because most people want to stay home for their last days, hospice provides anything the person needs — a hospital bed, wheelchair, oxygen, etc. Third is any member of the team that would be helpful to the patient or family.
The team consists of everyone from a medical director and hospice nurses and aides to social workers, dieticians, pharmacists, therapists, chaplains and office support, Paul said.
“The sooner families elect their services, the sooner they’ll be educated and supported, and the patient’s going to have a better quality of life,” she said. “It definitely assists the family in relieving some of the stress and anxiety. You’re not in it alone.”
“Team is really central to everything that hospice does,” Nesbitt said. “It’s not like it’s this doctor or that nurse. Nope, it’s a whole team of people.”
The hospice doctor oversees care. One specific nurse typically is assigned to the patient. An aide helps if somebody needs an extra set of hands for personal care. A social worker helps the family figure out various paths and programs. A chaplain can pray with them and be with them, volunteers can sit and play checkers, watch a TV show or just hang out with somebody. Hospice provides bereavement support for the family for over a year after the patient’s death.
“So anybody on the team that the person or their family feels like, well we’d like them to come, hospice makes sure that happens,” Nesbitt said.
For family members who are primary caregivers, hospice social workers can walk them through the paperwork involved in applying for family leave time. Hospice workers are available by phone 24/7 to answer questions.
“You know that at any time of day, you have someone to back you up,” Paul said. “It is as much about the family as it is about the patient.”
The holistic approach of the team allows hospice workers to facilitate the helpful conversations that most people instinctively avoid.
“Death is something that hospice programs are comfortable talking about,” Digwood said. “I think physicians and nurses don’t get a lot of education on having these emotional, sometimes spiritual conversations, and that’s why I think the interdisciplinary approach of hospice is so important because they have chaplains, they have social workers, they have a variety of team members that often are a little more comfortable with the conversation. Not to infer that that conversation is ever easy. But they are team members who are willing and experienced in having those types of supportive conversations.”
Death is part of life
Most people enrolled in hospice end up finding their circumstances less sad and scary, Nesbitt said.
“It isn’t like the hospice team are a bunch of sad-faced people who come in and just kind of mope around,” he said. “Most families, boy, they really get to like them. They say, ‘My nurse, she’s great, we crack up. My aide comes in here, he was busting on me about that game last night’ … That’s the focus with hospice, trying to make living better until whenever the dying day comes.”
In some cases, hospice can improve a patient’s final days by providing equipment and comfort care that can make patients feel better than they did on strong, curative medicines.
“We’ve had families that have taken their loved one to the beach for the last time,” Paul said. “The biggest hurdle is getting people in early so they can reap the benefit of quality of life.”
Working with death affects her attitude toward it.
“To me, death is very much like birth. You come into the world, and everyone is joyous. With death, you’re leaving life, but look at the legacy you’ve left. Look at the memories you’ve made with your family,” she said. “You should be able to leave life with the same dignity that you had coming into it.”
Cindy O. Herman lives in Snyder County. Email comments to her at CindyOHerman@gmail.com