Written by: Devin Golden

Mesothelioma Hospice Care

Mesothelioma hospice care is a support for people with end-stage mesothelioma. This cancer has a short life expectancy, and many patients and families can benefit from compassionate, comfort focused care.

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What Is Hospice Care?

Hospice care is an end-of-life support intended to make patients pain-free and more comfortable in their final months. It is focused on comfort instead of aggressive treatment to kill cancer cells.

“For hospice, yes it’s a tragic situation,” said Dr. Elizabeth Giles, medical director of palliative care at Yolo Hospice in California. “Families say they wish they weren’t losing their loved one, but hospice care helped make it the best it could be.”

The many aspects of hospice care for mesothelioma include:

  • Residence visits from nurses
  • 24/7 availability of medical professionals
  • Medication management from doctors
  • Emotional support, counseling and end-of-life advice for patients, caregivers and loved ones
  • Nondenominational spiritual care provider

Dr. Giles noted that the visits to the patient’s residence are a key element of hospice care.

“Hospice is a type of care that occurs in many places,” she said. “We try to meet the patient where they live.”

Hospice care also provides support for family members. This can provide peace of mind and comfort for loved ones, including a spouse, sibling, child or grandchild.

Support for loved ones includes:

  • Anticipatory loss or bereavement counseling
  • Advice for caregivers
  • Funeral arrangements
  • Naming beneficiaries

Palliative Care Versus Hospice Care

Palliative care and hospice care are often confused with one another. Palliative care is the most well-known form of hospice care, but it’s not one in the same. Palliative care is essentially the medical aspect of hospice care.

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 involves:

  • 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.

“Many are not eligible for curative treatment,” said Dr. Elizabeth Giles, the medical director of palliative care for Yolo Hospice in California, “but they are eligible for life-prolonging treatment.

“There is a lot of actual evidence that shows when the patient receives palliative care in their treatment course that they do better.”

Palliative care is relevant for mesothelioma, which has many severe symptoms in the final stages. Patients may experience chest or stomach pain, difficulty breathing or swallowing, fluid buildup, nausea, fatigue and more.

Palliative care is offered before or even concurrent with curative therapy like surgery. However, most people receive it after curative treatment has stopped.

Eligibility for Hospice Care

Hospice care is not an option for patients undergoing curative treatment. It’s only for patients with a prognosis of a few months.

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. This fact means many people with mesothelioma are eligible for hospice care.

“We have cared for many people with mesothelioma,” 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 exposure to asbestos

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

Military veterans, especially Navy veterans, make up around one-third of diagnosed mesothelioma 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.

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3 Things Veterans With Mesothelioma Need To Know

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By: Retired LCDR Carl Jewett, VA Claims Agent

Life Expectancy for Mesothelioma Hospice Care

The life expectancy for hospice care is low. Most patients receiving this type of support do not have a long prognosis. Hospice care is specifically for people with a prognosis of six months or less, so that’s usually the maximum life expectancy.

Studies show the mesothelioma life expectancy during hospice care is just a few months. Stage 4 life expectancy for this cancer is around 12 months. This number comes from a report in the Journal of Thoracic Oncology.

Some studies report less time. For instance, the Abramson Cancer Center reports that the life expectancy after diagnosis can be as short as four months.

Myths About Hospice Care

There are a few myths about hospice care, ranging from the idea of defeat to who is making the decision.

1

Hospice care is “giving up.” This isn’t true, as hospice care can extend a patient’s life and make the most of their remaining time. Dr. Giles fought back against the “giving up” myth in an interview with Mesothelioma Guide. “A lot of times people see hospice care as giving up or losing something,” she said. “I like to work against that perception. With palliative care, we work along with your medical team. 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.”

2

Hospice care is a selfish decision. This is untrue, even when the decision is made by a loved one or caregiver. Hospice care actually benefits the patient in numerous ways. “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.

3

Hospice care is permanent. Patients do not need to remain in hospice care for the rest of their lives. They can enroll for a brief time and conclude their hospice whenever they want. We recommend checking with insurance first before halting hospice care. “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.”

Paying for Mesothelioma Hospice Care

Patients in their end stages may wonder how they can pay for hospice care and palliative treatment. Fortunately, mesothelioma insurance usually covers this type of care.

Insurance for Mesothelioma Hospice Care

Medicare, the government-sponsored insurance provider for elderly Americans, covers most aspects of hospice care. Most private insurance plans also cover the cost of hospice.

According to the Medicare website, hospice care is meant for patients with a life expectancy of six months or less. This health plan covers:

  • All services, medical equipment and medications for pain-relief and symptom management
  • Medical, nursing and social services
  • Spiritual counseling
  • Grief counseling for you and your family

Patients may pay up to 5% of the cost for inpatient hospice care.

Types of Hospice Care

People often mistake hospice care for a place. Rather, it’s a type of care that can occur at a number of places.

Hospice care can happen at home, in a nursing or assisted living home, at a hospital, and many other locations. Patients can receive this support at any temporary or permanent residence.

The types of hospice care, by location, are:

  • Home hospice care — The most basic level of hospice care occurs at home. Hospice care providers come to the patient’s home and provide palliative treatment. Nurses visit a few times a week. In some cases, providers will come more often. Home hospice care may also involve emotional support.
  • Inpatient hospice care — Inpatient hospice care occurs at a hospital or another medical facility. This level of hospice is for patients who need more on-site care and support. Hospice providers work with the patient’s medical team to coordinate treatment. Inpatient care provides around-the-clock relief for symptoms and emotional distress.
  • Assisted living or nursing home — Many mesothelioma patients in their final stages need regular attention but don’t need to stay in a hospital. Hospice care can also be provided at an assisted living center.

There are also dedicated hospice facilities. Patients aren’t required to receive hospice care from these facilities.

Respite or “crisis” care is a short-term form of hospice care. It’s for instances when a caregiver is unable to continue caring for a patient. Respite care provides a limited amount of around-the-clock treatment and support.

When to Begin Mesothelioma Hospice Care

The decision to begin hospice care is personal. Some people want to hold off as long as possible because they are receiving aggressive treatment. Other people want to begin hospice care early to make the most out of the remaining time.

“For hospice, yes it’s a tragic situation,” Dr. Giles said. “Families say they wish they weren’t losing their loved one, but hospice care helped make it the best it could be.”

Once doctors decide to end aggressive treatment, the patient and their family should consider hospice care. This type of care is specifically for patients who cannot be helped with curative therapies.

This often occurs when patients reach stage 4, but it might be different for each case.

How to Get Mesothelioma Hospice Care

Patient advocates can help you sign up for mesothelioma hospice care. Whether it’s for you or your loved one, our staff can refer you to renowned organizations in your area. Your medical care team can also recommend a hospice care organization.

Hospice organizations are usually regional, so it’ll help to have advocates do the geographical research for you. They’ll also explain how insurance can pay for hospice care.

Sources & Author

    1. Mesothelioma Prognosis. Abramson Cancer Center. Retrieved from: https://www.pennmedicine.org/cancer/types-of-cancer/mesothelioma/prognosis. Accessed: 02/02/2021.
    2. Initial Analysis of the International Association For the Study of Lung Cancer Mesothelioma Database. Journal of Thoracic Oncology. Retrieved from: https://www.jto.org/article/S1556-0864(15)33132-4/fulltext. Accessed: 04/14/2020.
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About the Writer, Devin Golden

Devin Golden is the content writer for Mesothelioma Guide. He produces mesothelioma-related content on various mediums, including the Mesothelioma Guide website and social media channels. Devin's objective is to translate complex information regarding mesothelioma into informative, easily absorbable content to help patients and their loved ones.