Controversial new regulations in hospice care are expected to come before the legislature this fall.
Some officials believe the new regulations will expand the opportunities for hospice care in this part of the state, while others believe the change could water down the requirements in place now and potentially affect the quality of service patients and their families receive.
“I am hoping the legislature will contact us and have dialogue so they can proceed with the legislation with a very knowledgeable basis and focus,” said Nancy Petrosky, supervisor of hospice clinical services at Masonicare in Newtown. “I hope they take the patients into account. Hospice is the last thing we can offer patients. We help the patients live while they are dying and die while they are living.”
t is a big moment for Connecticut hospice care as legislators are preparing to scrutinize regulations around this issue, which affects everyone with aging parents or a loved one with a terminal illness.
While hospice care can be provided in people’s homes or at a nursing home, Branford-based Connecticut Hospice runs one of the only large-scale residential facilities in the state.
“That means people in Western Connecticut have few options if they wish to be close to their family in their last days,” Cynthia Roy-Squitieri, executive director of the Danbury-based Regional Hospice of Western Connecticut, said.
Newly proposed regulations, which are expected to come before the General Assembly in the fall, could open up the field for new facilities, including for Regional Hospice, officials said.
Roy-Squitieri said the need is there.
“We have a 46-year-old mom and she either has to stay in her home or go an hour a day to visit their dying mother," Roy-Squitieri said. "Sometimes people really want or need professional care,”
While changes to the law will potentially allow for more of a choice for residents of western Connecticut, it may not be in the best interest of patients and families, according to Marcel Blanchet, a spokesman for Connecticut Hospice.
The problem, according to Blanchet, is that many of the current hospice requirements will be dropped under the proposed new regulations. The ratio of patients to nurses could increase from 6 to 1, to 10, or even 12, to 1, the spokesman said. The new regulations may not require a staff doctor, or an in-house pharmacy, all of which Connecticut Hospice provides, officials said.
While providers may disagree about the impact regulation change will have, they all agree hospice care is an important service.
“Hospice is not about death and dying, it's about the journey, about making new memories all the way to the end of their life,” Roy-Squitieri said.
For instance, a woman said her last wish before dying was to see her daughter graduate from college. However, as the day of the graduation approached, it became clear the mother did not have the strength to attend.
“She was 50-years-old, and she had three children who were all college age,” Roy-Squitieri said. “Her oldest was graduating so we made arrangements with the college, and they brought the cap and gown and presented it in a ceremony to her daughter at her mother's bedside. The woman died within days but the girl was able to give that gift to her mother and it was a memory that the daughter now could keep, and I am sure it makes her happy to be able to remember that.”
Ellen Raspitha, who lost family members throughout her life, said her experiences prepared her to volunteer for hospice work, and she has seen how it has benefited others.
“The elderly, they want to talk about their life experiences with me,” Raspitha said. “Poverty, war, betrayal, everyone at the end has a strong desire to be heard, they want to share a part of their life with you.”
Patty DelVecchio, Director of Community Relations of The Village at Brookfield Common, has worked in health care for many years.
“There are no tubes, no hospital,” she said of hospice care. “Everyone they love is there, holding their hand. They can wear what they want to wear and have the last meal they want to have.”
Many hospice providers said death is not so much a thing to be shrouded in darkness so much as a moment to fill with as much joy as possible.
Jane Allen Wilson, director of philanthropy and major gifts at Regional Hospice, said, “It's important for us to get the word out that going into hospice will not hasten the end of your life, but instead will improve it.”