Mesothelioma patients need specialized attention during the disease’s later stages. Four levels of hospice care address these needs: Routine home care, general inpatient care, continuous home care and respite care. Understanding the services in each level helps you decide the right type for you.
The 4 different types of hospice care pinpoint the level and kinds of care needed, the stage of the disease and the patient’s location. Hospice providers supplement what primary physicians, family members or other caregivers do, promoting quality of life, offering comfort and addressing various needs.
Malignant mesothelioma is an aggressive form of cancer that typically spreads throughout the body, drastically shortening life expectancy. Hospice care for mesothelioma patients also supports their caregivers during the patient’s end-stages of life.
4 Stages of Hospice Care
Routine home care
General inpatient care
Continuous home care
Respite care
Hospices must provide all 4 levels of care to qualify for Medicare certification. Private insurance companies may have their own hospice provider eligibility requirements.
Private insurers and Medicare cover most hospice-related expenses, but check the patient’s policy specifics to see if there are any coverage exceptions. For example, Medicare only pays for room and board in certain situations.
Hospice Care vs. Palliative Care
While both palliative and hospice care help patients with serious illnesses live more comfortably, each has specific goals and parameters. Hospice care is more focused on end-of-life situations while palliative care also happens along with treatment.
Palliative care initiated soon after a mesothelioma diagnosis can help patients fare better as the disease progresses, potentially prolonging life. Hospice care typically begins when life expectancy reaches 6 months, focusing on comfort rather than curative treatments. Patients who choose to discontinue curative treatments may also qualify for hospice care.
Mesothelioma Palliative Care
Mesothelioma Hospice Care
Coverage
Private or commercial health care plans
Available to everyone through Medicare, Medicaid and private insurers
Goal
Manage symptoms and pain; may include curative intent; educating patients and families about mesothelioma
Promote quality of life, patient comfort and support for patients and their families
Location
Hospitals and cancer centers, assisted living facilities or the patient’s home
The patient’s home, dedicated hospice facilities and assisted living or nursing home facilities
Timing
At any stage after diagnosis
Life expectancy under 6 months
Process
Receive curative treatments along with palliative care
No longer undergo curative treatment, hospice care teams manage symptoms
Palliative treatment for mesothelioma patients focuses on a patient’s needs rather than their prognosis. It may include managing symptoms such as appetite loss and pain. Patients may receive palliative care alongside cancer treatments. Palliative care medical professionals coordinate with the patient’s mesothelioma doctors.
While hospice care shares similarities with palliative care such as pain and symptom relief and comfort care, there are significant differences. Hospice care typically only begins when the patient’s medical team, the patient and their family agree that further curative treatments should end. Treatments in hospice care don’t have a curative intent.
Routine Home Care
With routine home care, the most common of the 4 levels of hospice care, hospice teams travel to where the patient lives to administer care. In this stage, patient symptoms, including breathing difficulties, nausea and vomiting, are typically under control and the patient’s condition is stable.
Most people, including patients with terminal illnesses like mesothelioma, are more comfortable at home. If the spread of mesothelioma progresses, it can make providing physical care at home more challenging for family members. As home care becomes more difficult, families often partner with a hospice team for additional support.
As we began home hospice care, we invited everyone to come now and see him. It’s been wonderful. He hasn’t smiled and laughed this much in quite a while.
Aline DeLisle, wife of a pleural mesothelioma patient
Routine home care allows mesothelioma patients to stay in a comfortable space while still receiving the specialized care they need. Homemaker services and hospice aids are options for routine home care patients. Hospice teams visit the patient but don’t provide around-the-clock assistance with this stage of hospice.
The Mesothelioma Center and various organizations offer support for mesothelioma patients and their families, starting with this first level of care. This support includes support groups, financial support and lodging close to care facilities. Patient Advocates can assist mesothelioma survivors and their loved ones throughout their journeys from diagnosis to different levels of hospice care.
Rich DeLisle
Verified Asbestos.com Survivor
Mesothelioma Survivor Starts Hospice…with a Party
Rich and Aline DeLisle made the difficult decision recently to stop Rich’s pleural mesothelioma treatment and begin home hospice care. Then, something unusual happened. The party started. Sons and daughters, in-laws, grandchildren and great grandchildren, nieces and nephews, and friends he hadn’t seen in years, all began descending upon their Central Florida home.
During the general inpatient stage of hospice care, hospice teams care for patients in tandem with the facility’s staff. Mesothelioma patients often face short-term health crises beyond the scope of what home hospice care provides.
Brief inpatient stays can become necessary when acute or chronic symptoms flare up or pain is unmanageable at home. Patients need qualified medical professionals nearby 24/7 during these times to provide fast interventions.
Being brave enough to be open to accept help from all the members of the hospice care team can be very helpful at reducing emotional distress.
Dana Nolan, mental health counselor
Heightened stress often accompanies mesothelioma crises, for both patients and their families. The continuity of seeing the familiar faces of hospice workers in unfamiliar surroundings often comforts
