Dr. Elizabeth Giles recognizes the “perception” around hospice care. She’s the medical director of palliative care at Yolo Hospice in Davis, California.
“A lot of times people see hospice care as giving up or losing something,” she said.
However, hospice care isn’t that at all. In fact, it’s benefited quite a lot of mesothelioma patients.
Dr. Giles discussed the role of hospice care and palliative care for people with cancers like mesothelioma. She explained how hospice care is not giving up — in fact, it often prolongs survival — and significantly improves the patient’s comfort in their end-stages.
“For hospice, yes it’s a tragic situation,” she said. “Families say they wish they weren’t losing their loved one, but hospice care helped make it the best it could be.”
Hospice Care Versus Palliative Care
Hospice care and palliative care are often confused with one another. While they overlap regularly, they are not one in the same.
Hospice care is a type of medical care that focuses on quality of life in a patient’s end-stages. It is an umbrella term that includes palliative (pain-relief) care, along with emotional and spiritual support.
For instance, hospice care from Yolo Hospice includes:
- Visits from nurses at the patient’s residence (home, assisted living or other location)
- Medical professionals available 24/7 by phone
- Medication management from doctors
- Support for families and caregivers
- Nondenominational spiritual care provider
- Social workers offering counseling to patients, caregivers and loved ones
- End-of-life advice for patients and families
- Anticipatory loss group counseling for loved ones
- Bereavement and grief counseling after the patient passes away
The home visits are important to note. Dr. Giles said people often mistake hospice as a place where you receive care. It’s not that at all.
“Hospice is a type of care that occurs in many places,” she said. “We try to meet the patient where they live.”
What Is Palliative Care?
Palliative care is a specific type of medical care to improve quality of life. It focuses on relieving patient discomfort.
Palliative care for mesothelioma may involve:
- Pain medications
- Noninvasive surgeries to drain fluid
- Moderate doses of chemotherapy
- Psychosocial and spiritual support
This is all part of the effort to increase comfort. Palliative care is essentially the medical aspect of hospice care.
“There is a lot of actual evidence that shows when the patient receives palliative care in their treatment course that they do better,” Dr. Giles said.
Eligibility for Hospice Care
Eligibility for hospice care and eligibility for palliative care are different.
Mesothelioma patients can receive palliative care before, during or after curative treatment. For instance, patients can receive fluid-draining therapy in addition to aggressive chemotherapy or immunotherapy. They can receive pain-relief care before undergoing lung-removal surgery.
Hospice care is not an option for patients undergoing curative treatment. It’s only for patients with a prognosis of a few months. Yolo Hospice, for instance, requires a prognosis of six months or less with the focus of care on “comfort.”
For mesothelioma, many patients aren’t able to receive curative treatment. Their disease is too advanced by the time they know about it, which leads to a discouraging prognosis.
“We have cared for many people with mesothelioma and are happy to do so,” Dr. Giles said.
Mesothelioma patients often experience quality of life issues: shortness of breath, difficulty breathing and swallowing, severe chest or stomach pain, anxiety and depression, feeling of injustice from their asbestos exposure, and much more.
There’s a feeling that this cancer is “out of the person’s control.” That feeling is accurate. Asbestos exposure is the only proven cause of mesothelioma, and there’s no way to tell who was exposed or when they were exposed.
Hospice Care for Veterans With Mesothelioma
This fact is especially true for veterans, who face disproportionate and alarming rates of mesothelioma. Military veterans, especially Navy veterans, make up around one-third of cases. They often need hospice care and resources for mesothelioma support in their final months.
“We offer our staff training on how to address veterans issues,” Dr. Giles said. “We know from our education we received from advocacy groups that we should be sensitive to those issues.”
The support includes making sure veteran patients have access to benefits and nonprofit resources. Yolo Hospice received a four-star rating from the We Honor Veterans program.
The Effect of Hospice Care
Above all else, Dr. Giles hopes patients feel their needs are met. Yolo Hospice’s service area includes parts of all of:
- Yolo County
- Colusa County
- Sacramento County
- Solano County
- Sutter County
If a patient outside of these areas inquires about care — even someone on the other side of the United States — they can refer them to another hospice service.
“We’ve had patients start with us and their circumstances changed and they moved. We worked to link them up to an organization there,” Dr. Giles said.
A major challenge is awareness, and it’s not only true for Yolo Hospice. Community outreach is important. Another is word-of-mouth marketing. Dr. Giles hopes more people spread the benefits of hospice care as they experience them.
“What we hear from patients and families is that they wish they knew about us sooner,” Dr. Giles said. “They say we are so helpful. Having mesothelioma or any cancer is extremely stressful and scary. There is a lot of energy patients must put to their treatment. It must be a relief that there’s a team to improve their quality of life, and that team will stay there until the end.”
Yolo Hospice is a nonprofit, community-based organization that accepts “almost any insurance plan.” The staff focuses on treating patients at their residence, cutting down time to and from the hospital for palliative care. This provides more bonding time and positive interactions with family and friends.
“We focus on living as well as you can as long as you can,” Dr. Giles said. “For hospice, it’s the right care at the right time. We don’t want to pressure anyone. We want to be there at the right time for the patient.
“It’s very personal, and we’re just here to support and help.”
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