The Register Citizen (Torrington, CT)
Hospice not just for end of life
Palliative care can be offered to seriously ill at home
BRANFORD — Peter Simoni of East Haven has fought cancer for nine years and receives regular visits from a nurse and home health aide from Connecticut Hospice.
Dr. Joseph Sacco, the hospice’s medical director, also stopped by.
The Connecticut Hospice team, by coordinating his medications with his doctors and working around his chemotherapy schedule, has even helped Simoni get out to the Mill River to enjoy his lifelong love, fly-fishing for trout.
But Simoni is not receiving end-of-life comfort measures and is not eligible for the hospice benefit from Medicare, which is available when a patient is given six months or less to live.
Instead, he’s receiving palliative care services through Connecticut Hospice’s Stand By Me program, which offers comprehensive medical services to seriously ill patients who are not ready to enter the hospice program.
Ongoing care
“I’m a big fly fisherman. I used to fish three to four times a week,” Simoni said. “It’s sort of my therapy.”
Sacco and his oncologist prescribed “a couple of different medicines taken three days in a row before I want to go. It gives me a little more energy and life,” Simoni said.
Simoni, 67, is a fighter. He was diagnosed first with kidney cancer 9½ years ago and had his left kidney removed. Since then he’s had nodules taken off his lung and out of his windpipe, lost part of his vocal cords and was hospitalized for two weeks in January because he couldn’t breathe.
“I have a buildup of fluid in a pleural cavity. I need a nurse to come every other day to drain me,” Simoni said.
That Connecticut Hospice nurse, Theresa Razmakhnin, is “excellent. I have nothing but good things to say about her,” he said. “She’s very personal, knowledgeable, excellent, the whole nine yards.” He also has a home health aide come every day.
Simoni has been part of the hospice’s palliative home care service since February 2017 because, while he faces major health challenges, he’s not ready to say “enough.” He hopes to get back to fishing the Farmington River, which he was unable to do last year. “I want to get up there this year,” he said.
“I have a close core of four or five guys I fish with. We go back many years, some of us, and it’s been kind of difficult trying to get out there, so they came up with this solution.”
Simoni also intends to see his son get married.
“That’ll be 10 years” since he first got cancer. “That will be in October,” he said.
“I’ve seen him come a long way and it’s really remarkable, that strength of spirit,” Razmakhnin said. “We meet people where they’re at. … He has control, he’s empowered.”
While hospice care includes palliative measures, Connecticut Hospice offers palliative care to any person with a serious illness, such as congestive heart failure, chronic obstructive pulmonary disease, cirrhosis or advanced dementia. The goal is to keep a patient as well and independent as possible.
While Simoni has had numerous scares, he hasn’t made the decision to stop treatment.
“He wasn’t ready for that, but he’s come close multiple times,” Razmakhnin said. “I did have a discussion with him and he said, ‘OK, I’ll know when enough is enough.’”
A bridge
Sacco said Stand By Me is a comprehensive palliative care program.
“We are much more engaged in the three main components of palliative care: an intensive counseling component in which we are really, truly helping people understand the nature of their illness, what treatment options are available to them”; “a very, very intensive symptom management process” that helps people cope with common issues such as pain, nausea, shortness of breath, anxiety and constipation; and medical management that includes the ability to be admitted to the hospice on Double Beach Road for short-term hospital care.
While a patient with advanced lung cancer is treated with chemotherapy and radiation, “someone like that might be of great risk of getting pneumonia,” Sacco said. “We offer them an alternative, which is to come to this facility in Branford,” where they can be given blood tests, intravenous antibiotics, EKGs, high-flow oxygen therapy and more, “with the intention of getting them home,” he said.
“People get sick and tired of going to the hospital,” Sacco said. “They go home better medically but exhausted.”
While Connecticut Hospice doesn’t offer advanced services such as CT scans, MRIs or life support, it is licensed as a hospital. Patients receive “really excellent nursing care and really excellent social work services. Nobody gets woken up at night,” Sacco said.
While Sacco said he does “quite a bit of trying to persuade people” to seek treatment for their illness, he added, “We are completely open to the choices people make. I’ll go into that conversation with people at home without an agenda.
“Our palliative care program is a bridge between their physicians and their life at home,” Sacco said. “Having the palliative care service from Connecticut Hospice in the home is 24/7 availability of the team.”
While some mistakenly confuse palliative care with end-of-life care, palliative care actually can lengthen a patient’s life. A 2010 paper in the New England Journal of Medicine reported on a study of patients with metastatic non-small cell lung cancer, which it called “the leading cause of death from cancer worldwide.” It found that those who received palliative care soon after their diagnosis had a better quality of life, suffered less from depression and survived longer with their disease, an average 11.6 months vs. 8.9 months.
Halley Robinson, Connecticut Hospice’s director of bereavement services, said, “I don’t see any reason why, from the first week of treatment, that they can’t get palliative care on board.”
A team and patient choices
Stephanie of Madison, who asked that her last name not be used, is a former Stand By Me patient who Sacco said “was waffling whether she wanted to go through surgery for cancer or whether she would go to hospice.” She decided on the surgery and is cancer-free.
“I guess I kind of graduated,” Stephanie said. “They offered the same services that (Connecticut) Hospice offers to people who are terminally ill.” There was a nurse available even in the middle of the night and kept in touch with “how you were mentally handling all of this. They even had a massage therapist. They had so many services.”
Stephanie had esophageal cancer. “The surgeon took out a third of my stomach and three-quarters of my esophagus,” she said. “It was pretty intense. “The one part is the physical part and the other part is the psychological part. … The psychological part is how you view your life, because it’s at a point in your life where your life could be over shortly and that’s a big deal.”
She said Sacco came to her home, talked to her oncologist and surgeon, looked at her tests and explained them to her.
A widow, Stephanie recuperated at Connecticut Hospice “because it’s such a beautiful place and they give you so much attention. … They really are a great group. I was so comfortable with all of them and they were so responsive.”
“She was afraid of the surgery and she was afraid of what she was going to have to go through to seek a cure, and when I said, ‘We’re going to be with you at your side as you go through this process,’ that’s what she needed to hear,” Sacco said. “She needed to know that she was going to get support as she was going through it.”
Soozi Flannigan, a nurse practitioner and vice president of Hospice Home Care, said that while “we’ve been providing hospice and palliative care in the home and here (in Branford) for 40 years, what was missing was the high level of service that we’re providing now.
“As a nurse, when your patient’s suffering and you say, We’re going to have our doc come out to the house or a nurse come out to the house, they’re like, ‘Wow, you can do that for me?’ ”
“Generally speaking, there’s a lot of misunderstanding of what palliative care is, both in folks out in the world and within medicine,” Sacco said. “The more people learn about this, the more people are likely to advocate for themselves in other medical settings.”
Mary Ann Fieffer, a nurse practitioner specializing in oncology, said, “We’re a really finely functioning team that works really well together and we address a myriad of needs for patient so we can … get things done really quickly.”
Fieffer described a patient with cancer that had metastasized “and she came in because she wanted pain management and she wanted to go home. In the meantime, we found there was a very severe side effect from her opioid therapy that we did not expect.” The patient was suffering major constipation. “Within 72 hours, we got her in and out,” Fieffer said.
There are patients in the program whose health declines and for whom “we’ve reached the limit of what we can do,” Sacco said. “Usually they decide at that point that they just want to stay with us.”
“It basically starts at admission,” said Rachel Green, a registered nurse. “We gather a very basic assessment — head-to-toe assessment and social assessment. We gather what the goals are from the patient and the family. We’re at the bedside the majority of the time, so we’re always updating families with regard to conditions (and) medications.”
Brian Goodrich, director of social work, said, “We are truly interdisciplinary and we have excellent communication between the team members, including nurses, doctors, social workers, chaplains, art therapists and volunteers. “We are truly patient and family centered,” Goodrich said. “We are not directive. We do not tell the patient what to do. The patient and the family are in the driver’s seat at all times. … They’re going to get a cornucopia of what their options are.”
The Rev. Warren Godbolt, administrator for pastoral care, said it’s in the evening “that the team that we have here really collaborates,” whether the patient is at the Branford hospice or at home in Bridgeport, whether they’re Catholic, Buddhist or Muslim, “it doesn’t matter. We make that connection and we try to make a safe place for the patient.”
He said Connecticut Hospice has held information sessions with area pastors. “That’s the key point, to have the information, because a lot of pastors out in the community have their pulse on 300 members, 400 members.”
“In this day and age, no one should be home suffering,” Flannigan said.