Hospice care for the dying is now available at many hospitals, nursing homes and clinics. Providence TrinityCare Hospice, based in Torrance but serving families throughout Los Angeles and Orange counties including the Santa Clarita Valley, is among the leaders in a growing trend toward in-home care for terminally ill patients, especially children.
“We provide end-of-life care to patients in their own homes,” said Barbara Roberts, executive director of the Providence TrinityCare Hospice Foundation, which raises funds for the hospice’s operations.
“Generally, we provide wonderful hospice care to adults, the folks that you would expect we would be caring for, but we also have a dedicated team that cares for children,” Roberts said. “We’re the only organization providing a hospice care with pediatric specialists for children throughout our region.”
That’s good news for parents of terminally ill children in our community.
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“We’ve got children that are being cared for up in your area in their own homes, but people may not know that we’re there because we don’t have a building,” Roberts said. “There’s not a place where the children go. They’ve been cared for regionally; in Southern California, we have wonderful children’s hospitals where people travel from all over the state to receive care. So, a lot of children may go to Children’s Hospital L.A., but they may be living in Santa Clarita, and the parents have been doing a lot of driving. It’s been a tough time. But then if the family chooses for the (child) to go home, back they go to their wonderful neighborhood, where they have their friends and family and parents and everything. But we’re not as well-known in these different areas.”
Tyler, age 6 months, has congenital obstructive renal disease. He and his parents receive care from Providence TrinityCare.
TrinityCare is one of the oldest hospices on the West Coast, Roberts said. “We were awarded, back in 1977, one of the first hospice licenses from Medicare. And then 10 years later, in 1987, we started our foundation to raise funds so that anybody who requires our services is able to receive them. We also find that some of these families are impoverished. We have to make it so that their home is safe, so if they don’t have a phone or their electricity’s going to be turned off, we can step in to make sure the patient can receive hospice care in their home. So we’re in our 25th and 35th years.”
TrinityCare provides patients with a team of caregivers who work with family members to make the patient’s remaining time as comfortable as possible, given the circumstances.
“They’re cared for by a multi-disciplinary team, with a nurse, social worker, home health aide, non-denominational chaplain, of course our physician, and trained volunteers,” Roberts said. “And the team – they know what the diagnosis is, what care or critical care the patient needs, and also what the wishes of the patient and their family are – sets up a plan of care. That plan sets up how many times that the nurse will go out and visit, the home health aide will come out. So it’s anything from assisting with things like bathing or hygiene, to nursing and medicine, but also it’s developing and enhancing communication between the family members. And that’s really important, to understand what that family and that patient want for the patient’s last weeks, days, months.”
Children, especially, would rather be at home, especially if they’ve already spent a lot of time in the hospital, Roberts said. “They want to be with their family, their friends or grandparents, the parents, and this is a way that we can do that. We can support the family, providing them with all of the medications, pain and symptom management, but we also work with the entire family, particularly with the children, with the siblings. We help the siblings to cope through this incredibly difficult time.”
Karina (right) is a 9-year-old girl with a brain tumor. She lives in a small plywood house with her parents and 16-year-old brother.
The social worker on the team is a key player in helping family members, especially siblings, to cope with the impending death of a loved one.
“Children at all ages can communicate,” Roberts said. “It’s amazing how much they know what’s going on even if they haven’t been told. They will have conversations with the social workers. We have a lot of very specialized books that talk about illness and dying that are age-appropriate. And it’s not just telling them to go read a book. It’s a way of stimulating conversation between the child and the siblings and the parents if they’re reading something. Some of them are very simple storybooks for younger children, on up through for teenagers. There’s all sorts of poetry. We also do a whole set of art projects that are very prescribed. For instance, if the family is interested, one of the first ones is assisting them to create a family tree. It may sound trivial, but it’s not.”
The children’s program mirrors the services available for adults. TrinityCare follows a patient for at least 13 months, per its MediCare license. But older patients facing death have a different set of issues from children, and the TrinityCare team adjusts its team approach accordingly.
Mr. Nothern (right) died of colon cancer when he was 70, peacefully, at home, in the company of his wife, adult children and grandchildren.
“With older adults, there’s physical pain, but there’s also psycho-social pain,” Roberts said. “People may have regret or things that they wish they could somehow address, and that’s what’s causing them pain at the end of their life. Adults who have lived a long life potentially would have more of that than a younger person, and that often becomes the source of what the conversations are about. And it may be through the social worker, maybe with the volunteer, maybe with the home health aide. These folks provide care where they’re helping a person with bathing and hygiene and feeding. That’s a pretty intimate interaction you have with this person, and there’s some very strong feelings and emotions that are shared with that aide.”
Roberts knows even the best hospice care won’t replace a family member who passes away. “But what we want to do is be there to help that family through this time, help the siblings cope, and help them to grieve in ways that are healthy, and help them through this trying time.”
Find out more at Providence’s TrinityCare Hospice website.
Photos and captions courtesy Providence TrinityCare Hospice.