Last act of love: Approaching the end of life

In 1997, 10 years after hospice services were established in the United States, there were 490,000 patients. In 2013, 1.6 million families received service from a hospice program.
To mark November as National Hospice Month, and to help families who have a loved one nearing the end of life, Visiting Nurse & Hospice of Fairfield County will present a free program on how to care for someone near death Monday, Nov. 21, at 7 p.m. in the Brubeck Room at Wilton Library.
Peace and Compassion on the Final Journey will begin with a 25-minute film called New Rules for End of Life Care, followed by an open and how to help a loved one face death at peace and in comfort.

The film, developed by Barbara Karnes, a registered nurse who has cared for hundreds of people near to death, addresses the behavior changes people experience as they pertain to food, sleep and withdrawal as well as pain management.
During her career, Karnes discovered each person she cared for went through the stages leading to death in almost the same manner and most families had the same questions.
“I’ve shown this film to 200 people so far,” Pfeffer said, including seniors and physicians. “There’s one word that comes back, whether it’s physicians or lay people, and that is that the film is very relatable.
“Always offer food but never force, always offer fluids but never force,” she said of some of the information that will be relayed. “If there is pain, we will manage it till the last moment of life.
“Death is a process. If it is connected to a disease that brings pain, we’ll manage it. If it’s a disease with no pain, people can take an Advil or a Tylenol,” she said, adding she wants to dispel the myth that hospice patients are always on morphine.
This medication does have its benefits, she continued, and if it is used it is given orally in very small doses under the tongue. “There are no shots, no needles,” she said, adding that for some illnesses morphine can keep people very comfortable.
Pfeffer, who has spent her career caring for people in Wilton and neighboring towns, said it is her hope that people come to hospice “sooner than later. In this area, in the 21st Century, [people] sometimes take it to the last minute, and then there’s not enough time for goodbyes or to walk the last journey.”
Hospice is a six-month program, meaning patients must have a prognosis of no more than six months to live. “I would love to get people a month or two months away,” she said, but the reality is most people wait until there are only a few days or weeks left.
Sometimes, she said, patients are ready to go into hospice care, where only palliative care is administered, but their family members are not ready to let go. And so, a patient may continue fighting for them. Others may keep searching for a clinical trial.
Some just can’t face the prognosis. “There are cultural, social and religious overlays that don’t allow people to talk,” Pfeffer said, and thus, conversations about how someone wants to face their final days often take place in a hospital. “That’s not where they belong.”
Most hospice patients are cared for at home, Pfeffer said, but it takes a team of devoted family and friends. “It’s the last act of love you can do for a loved one, but it is not for the weak,” she said.
“Death is a part of life,” Pfeffer said. “There is no cure for grief … the only thing is time. Time heals. And I’d like to think the way someone manages their grief is a testimony to the love they had for that person. Just move forward in the memory of your mom or your sister or your best friend.”
For information or to register to attend Peace and Compassion on the Final Journey, call Wilton Library at 203762-3950 or visit wiltonlibrary. org and click on Events.