TOPS CARES: A FOCUS ON CARING

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The company’s name has long been synonymous with extraordinary care. With their rebranding this spring, Hosparus Health puts a new emphasis on caring for those who are living with chronic conditions—a group that is only going to increase dramatically over the next decade. “We have ten thousand baby boomers a day turning sixty-five,” says Senior Vice President and Chief Marketing Officer Gwen Cooper. “There will be 58 million seniors by 2040. The average family is supporting four chronic diseases.” These families need help—not just in the late stages of disease, but during the earlier years—years that can be enjoyed and lived to the fullest with the right support systems in place.

“The care that we provide is social and psychological and spiritual and medical,” says Cooper. “It not only helps the patient live more comfortably, it helps the family function better. It makes daily life less of a struggle so they can treasure every day.”

Adding “health” is more than just a change in name, it’s a shift in focus. “When you add ‘health’ to ‘Hosparus,’ it suddenly says that we can help you sooner,” says Cooper. “We open the door to advanced illness care.” That care isn’t limited by a patient’s life expectancy. It can be provided at any stage of acute or chronic illness and can also be provided as part of curative treatments. People living with COPD, congestive heart failure, cancer, dementia, diabetes and neurological conditions can all be served. The expanded mission is to improve the quality of life by providing the same kinds of compassionate services that their caregivers and medical experts have traditionally provided through Hosparus during the last six months of a patient’s life. However, to receive the hospice care provided by Hosparus, patients had to be diagnosed with a terminal illness with a life expectancy of no more than six months. “We were constantly turning patients away,” says Cooper. “And, often, we would only be with patients for six weeks. Families were constantly saying that they wished they’d called earlier.”
The short-term nature of their care and the increasing need for long-term advanced illness care caused the company to rethink its mission and add palliative or advanced care to its services. In a sense, they’ve already tested the idea with a cutting-edge pediatric program called Kourageous Kids that they launched in 1980. Through that program, their care teams serve seriously ill children who may still continue to seek curative care. Kourageous Kids helps families celebrate their time together-- planning group social outings, navigating medical options and providing counseling and support with sometimes unthinkable circumstances. After a year of shuttling their newborn daughter, Lexi, in and out of the Vanderbilt hospital for surgeries to correct unspecified congenital abnormalities, Jeff and Shayla Forgys decided with the help of their doctor to take her home and forgo future surgeries. That was when they called Hosparus for help. “While it was the most difficult decision to make, it was the right one for Lexi as she would no longer have to suffer,” says Shayla. “When we called Hosparus, Greta (Hays, Lexi’s nurse) let us know that we just needed to continue to love her and spend time with her.” With help from Hosparus, the Forgys were able to take a family trip to Gatlinburg. “We were able to enjoy our baby girl and our time as a family on that trip,” says Shayla. After six months in Hosparus care, Lexi died at home surrounded by her family on May 15, 2015. Since then, Hosparus has been involved in helping the Forgys commemorate her short life and remember their little girl.
With the rebranding, Hosparus Health is now offering the same kind of safety net and support system to families of patients of any age. For one local family coping with ALS, those services have restored joy and harmony to their home life. Carrey Dewey, 45, mother of three children ages 8, 10 and 12, is mostly confined to her bed. Her husband, Eric, is her primary caregiver. She originally called for hospice services, but was surprised and pleased when they directed her to their pilot palliative program. “I think it’s great that people who don’t qualify for hospice still have an option,” she says. While Carrey is still receiving treatments for ALS, she and her family are also receiving nursing, social work, counseling and volunteer services from Hosparus Health. Counseling has been especially helpful to her children who “have normal people problems like arguing and not following directions, while living in extraordinary circumstances,” she says. “It’s so nice that we don’t have to go out and look for somebody with that type of experience and that she will come to our home. It’s been a huge help.” Another huge help has been the volunteer who weeds her garden twice a week. “It was depressing to see my garden looking so pathetic and not being able to do anything about it,” she says. They have also provided anticipatory grief counseling, scholarship research for the children, advanced care planning and a DNR. In big and little ways, they’ve made it possible for Carrey and Eric to live life with their children to the fullest. “I don’t feel like I am dying even though, with my diagnosis, it’s clear that I am,” says Carrey. “I have three kids and I feel like I have an active life.”
While the opportunities for providing improved quality of life are tremendous, the challenges are also real. There is no standard benefit available for advanced illness care through medicare or private insurance—although some services are covered by some companies. “Every patient and every insurance company we are piloting with is different,” says Cooper. “There are a few pilot programs around the country and we have our own pilot that we’re funding. We are working with Congress to get advanced care covered. And I’m an eternal optimist.” After all, optimism is part of the gift that Hosparus Health and its extensive network of compassionate doctors, counselors, psychologists, nurses, chaplains and caregivers brings to those it serves.

MYTHS AND TRUTHS ABOUT ADVANCED ILLNESS CARE
MYTH:

  • Advanced (or palliative) care is the same as hospice.
  • If you accept palliative care, you must stop other treatments.

  • Palliative care shortens life expectancy.

FACT:

  • Hospice care is limited to the last 6 months of life, but palliative care can be offered at any age and any stage of a serious illness.
  • You can receive palliative and curative treatments at the same time.

  • Palliative care alongside standard care can extend life expectancy.

 



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