Editor’s Note: This is the final part of a five-part series for caregivers. To read previous installments, please visit dailyitem.com.
When someone says, “The family called the hospice,” everyone gets quiet and sad.
“I wish I could change everyone’s perception of hospice,” said Kathy Paul, RN, director of Hospice of Evangelical. “People seem to be giving up, but our focus is on doing everything we can to make every day the best it can be.”
“When people hear the word ‘hospice,’ it’s an emotional term in that it usually reflects that someone is nearing the end of life,” said Dr. Glen Digwood, Hospice and Palliative Care of Geisinger. “But patient and family satisfaction with the hospice service has been consistently high over the decades because these are people who are willing to talk about the difficult stuff and support people through it.”
Hospice is often associated with people who choose to stop receiving chemotherapy for cancer, or certain drugs for congestive heart failure or end-stage lung disease, Digwood said.
“But the philosophy of hospice is to really focus on optimizing symptom relief for patients who have an incurable disease and supporting their family and loved ones,” he said.
Hospice makes the last days as bright and fulfilling as possible.
“One of the most common things people bring up is, ‘Oh, I wish I had gotten to hospice with my dad sooner.’ We didn’t come in until two weeks before he died, and if we had had this help beforehand, it would have been a lot easier,’” said Dr. Alexander Nesbitt, Hospice and Palliative Care, UPMC in North Central Pa. .
Hospice provides and pays for three main benefits, Digroot said. One is the medicine for the individual’s disease. Second, because most people want to stay at home for their last days, hospice provides whatever a person needs – a hospital bed, wheelchair, oxygen, etc. Third is any team member who would be helpful to the patient or family.
The team consists of everyone from a medical director and nurses and aides to social workers, dieticians, pharmacists, therapists, chaplains and office support, Paul said.
“The sooner families choose their services, the sooner they will be educated and supported and the better quality of life the patient will have,” she said. “It definitely helps the family release some of the stress and anxiety. You are not alone in this.”
“The team is really central to everything hospice does,” Nesbitt said. “It’s not like it’s this doctor or that nurse. No, it’s a whole team of people.”
The hospice physician oversees the care. A specific nurse is usually assigned to the patient. An assistant helps if someone needs an extra set of hands for personal care. A social worker helps the family discover various avenues 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 someone. Hospice provides bereavement support to the family for over a year after the patient’s death.
“So anybody on the team who feels the person or their family, well, we’d like them to come, hospice makes sure that happens,” Nesbitt said.
For family members who are the primary caregivers, hospice social workers can guide them through the paperwork involved in applying for family leave. Hospice workers are available by phone 24/7 to answer questions.
“You know that at any time of the day, you have someone there to support you,” Paul said. “It’s as much about the family as it is about the patient.”
The team’s holistic approach allows hospital workers to facilitate helpful conversations that most people instinctively avoid.
“Death is something hospice programs are comfortable talking about,” Digroot said. “I think doctors and nurses don’t get a lot of education to have 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 who are often a little more comfortable with the conversation. Not to infer that that conversation is ever easy. But there are team members who are willing and experienced in having these kinds 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’s not like the hospice team is a bunch of sad-faced people who come in and just kind of sulk,” he said. “Most families, boy, do they really end up liking it. They say, “My nurse, she’s great, we’re falling apart. My help is coming here, I’m raving about that game last night’… That’s the focus of hospice, trying to make life better until the day you die.’
In some cases, hospice can improve a patient’s final days by providing equipment and comfortable care that can make patients feel better than they did with strong, curative drugs.
“We’ve had families take 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 quality of life benefits.”
Dealing with death affects his attitude towards it.
“For me, death is a lot like birth. You come into the world and everyone is happy. With death you leave life, but look at the legacy you have left. Look at the memories you made with your family,” she said. “You should be able to leave life with the same dignity you had when you entered it.”
Cindy O. Herman lives in Snyder County. Email her comments at [email protected]