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Exclusive Content | Amy Pelegrin: What to ask when choosing a home health or hospice provider
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Exclusive Content

Amy Pelegrin: What to ask when choosing a home health or hospice provider

Written by Amy Pelegrin | Edited By Walter Pacheco | Last Update: March 5, 2024

When to Consider Hospice Care

Patients and their families may consider hospice care once doctors assess the patient likely has six months to live. Hospice is a type of health care that aims to relieve symptoms and improve quality of life for people with terminal conditions. 

Hospice offers levels of service that range from basic care provided at home to complete care provided at inpatient medical facilities. While these services are not intended to improve a mesothelioma prognosis, some patients outlive their initial prognosis thanks to the high-quality care that hospice provides.

Hospice care benefits for mesothelioma patients

The typical life expectancy for mesothelioma is about one year. Many families facing mesothelioma come to rely on hospice care to access excellent health care and supportive services.As a patient, choosing this type of care doesn’t mean you’re giving up.

As a caregiver, it doesn’t mean you’re abandoning a loved one. Hospice is about providing comfort and preserving quality of life.

Hospice Care Options for Mesothelioma Patients

Hospice care for mesothelioma patients may include assistance to improve breathing, pain control and diet plans. Hospice professionals also offer services that extend beyond the physical, incorporating emotional, social and spiritual support when requested. 

Hospice professionals can also help with end-of-life arrangements, such as wills and advance directives. Nondenominational spiritual counsel and support groups for patients who wish to participate are also offered. After a patient dies, these programs continue to offer support groups, counseling and bereavement services to the family for an extended period of time.

Hospice Care Team Professionals
  • Doctors
  • Medical specialists
  • Nurses
  • Home health aides
  • Occupational or physical therapists
  • Mental health counselors
  • Bereavement specialists
  • Social workers
  • Chaplain, clergy members or spiritual leaders

Hospice workers may administer additional medications to help reduce late-stage mesothelioma pain. Because of its ability to reduce breathing stress for patients with lung diseases like mesothelioma, morphine is commonly prescribed to pleural mesothelioma patients. Hospice can also offer alternative painkillers to reduce related discomfort. 

Mesothelioma cancer can weaken several major bodily systems. Pleural mesothelioma patients can benefit from breathing techniques and specific positioning techniques that can help a patient position themselves to optimize airflow. A compromised digestive system is a primary concern for peritoneal mesothelioma patients. Hospice teams can create customized nutrition plans to ensure patients are nourished and hydrated.

4 Levels of Hospice Care for Mesothelioma Patients

The 4 levels of hospice care are tailored to meet the unique needs of mesothelioma patients and their families. Each level provides increasing levels of comfort and support.

  1. Routine Home Care: The most common level, hospice teams provide support to manage cancer pain and symptoms at the mesothelioma patient’s residence.
  2. Continuous Care: This level provides around-the-clock home nursing services in a crisis to address acute symptoms and stabilize the patient’s condition.
  3. Inpatient Respite Care: This care offers short-term inpatient care at a facility with professional care and support to provide temporary relief to family caregivers.
  4. General Inpatient Care: If symptom management becomes challenging at home, families may consider inpatient 24-hour skilled nursing care to control severe symptoms and improve comfort.

Every level of hospice care aims to deliver holistic and compassionate care. Mesothelioma patients may experience some or all these levels at different stages of their hospice journey. Hospice provides a team of healthcare professionals, including nurses, aides and social workers, at each level of care. 

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Choosing a Hospice Program for Mesothelioma

Speaking with your doctor about the kind of care you may need can help you make decisions about the level of hospice care that would work best for you and your family. Depending on your location, you may have multiple choices for where to receive hospice care. 

You can ask your doctor for a referral and a hospice representative is often on staff at hospitals and cancer centers to answer questions. Hospitals and treatment centers also have local hospice contacts for patients and family members to reach out to about end-of-life care. 

Hospice nurse and mesothelioma patient

With more than 4,700 hospice programs in the U.S., many of which Medicare has certified, choosing a facility can feel overwhelming. Speaking with a Patient Advocate or using sites such as Hospice Compare can help.

Be sure to ask about the facility’s experience specifically with the complex aspects of caring for someone with mesothelioma.

Once you’ve officially decided to proceed with hospice care, your oncologist can approve the paperwork confirming your eligibility for this type of care.

Learn More About Mesothelioma Support

Support for Mesothelioma Caregivers

Hospice can relieve some caregiving stress while ensuring patients receive optimal end-of-life care. In addition to routine or continuous at home or inpatient care that offers specialized mesothelioma care, respite care also benefits caregivers, giving them a true break from the challenges of caregiving.

In addition to physical care, hospice workers can help with other end-of-life services. These services help caregivers ensure their loved one’s wishes are respected and plans are in place for the future. Bereavement services also support caregivers through the grieving process.

End-of-Life Hospice Services
  • Completing paperwork for advance directives, including the patient’s medical wishes and do-not-resuscitate orders
  • Choosing a loved one to serve as health care proxy
  • Designating power of attorney, delegating financial decision making to a loved one or someone else the patient trusts
  • Developing a will for distribution of the patient’s estate as they wish
  • Making decisions about arranging burial and funeral services

It may be difficult for some caregivers to suggest hospice to their loved one with mesothelioma. Some doctors will suggest hospice to the patients themselves when their clinical symptoms and progress indicate that it would be the most beneficial mode of care.

Paying for Hospice Care

Medicare Part A covers the vast majority of people who enter hospice care. The Medicare Hospice Benefit covers care related to the terminal illness but doesn’t cover all aspects of care.

For example, patients can expect copays for prescriptions and can expect to pay a portion of fees related to respite care. Any type of complementary care a patient elects on their own that the hospice care team doesn’t recommend won’t be eligible for Medicare coverage.

Quick Fact
There were 1.71 million Medicare beneficiaries enrolled in hospice care for one day or more in 2021, according to the National Hospice and Palliative Care Organization.

Statistics about hospice care show that Medicare paid $23.1 billion for hospice care services in 2021. Mesothelioma patients are eligible for financial aid, such as medical grants and Social Security Disability, to help cover the costs of health care not covered by hospice.

Hospice Care Resources

These resources can help your family access hospice care in your community. Learning more about how hospice works and your options can help ease families’ concerns.

Hospice Foundation of America

This foundation offers information about hospice and its services, grief resources and educational resources. It also offers a message board to discuss hospice topics.

National Hospice and Palliative Care Organization

This organization provides information about hospice care. It can help families locate and choose a provider.

National Association for Home Care and Hospice

This association advocates, promotes and protects high-quality health care for the terminally ill. It educates hospice workers and lobbies for the rights of the terminally ill.

Eldercare Locator

This is a public service the U.S. Administration on Aging provides. It helps families find services for older adults, including hospice care.

Stories from Mesothelioma Survivors Entering Hospice

Many mesothelioma survivors have benefitted from hospice care and recommend it to other families facing the same diagnosis. Some of them entered hospice care and left it soon after because their cancer stopped progressing.

Virginia Beach

Virginia Beach was diagnosed with pleural mesothelioma in 2005 and underwent eight rounds of chemotherapy that put her cancer into remission for nearly 10 years. In 2014, she developed shortness of breath and her oncologist recommended hospice care.

A hospice nurse and social worker began visiting her regularly. Her primary care physician and the hospice chaplain also came by, but her health began to improve suddenly and she was able to leave hospice care.

“After a while, the doctor told me my lungs were clear. I didn’t need them to do much, but the nurse did help me understand my iPad, and how to use it better,” Beach said. “That was a big help to me.”

Rich DeLisle

Rich DeLisle was diagnosed with pleural mesothelioma in 2012 and underwent aggressive surgery and other mesothelioma treatments, which put his cancer in remission for several years. When the cancer returned in 2017, DeLisle tried several treatments before deciding he wanted hospice care.

“My body is gone. I was tired of being sick,” DeLisle said. “I couldn’t take any more of those treatments. We’ve cried together enough. It was just time for something else.”

DeLisle and his wife informed their family and friends of the decision. They invited everyone to visit and spend quality time together.
“We didn’t invite anyone here to sit around and mope over me,” Rich said. “I have to get ready for the party tonight.”

Randy Sloan

Randy Sloan was diagnosed with late-stage pleural mesothelioma in 2016. He underwent chemotherapy and radiation therapy, but the side effects were difficult to live with. Within six weeks of his diagnosis, his condition was rapidly declining.

Sloan decided against further treatment and chose to enter a hospice care facility called the Zen Hospice Project in San Francisco. Sloan chose Zen because he had a personal relationship with the former director.

“I knew he needed much more care than we could provide him and much more care than he wanted a family member to give him,” said his mother, Melany Baldwin. “Going to a place like he did, he felt unburdened, and it was unburdening for everyone.”

Another reason Sloan chose Zen was they take a unique approach to carrying out the dying wishes of the people under their care. The day before he died, Zen organized a sailing trip across San Francisco Bay for Sloan, his friends and family.

“He was himself until the end,” Baldwin said. “And that was how he wanted it. He had the best possible medical care, and the best possible dying care. At the end, he opted for a shorter, better life.”

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