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Written By: Devin Golden

Mesothelioma Hospice Care

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

Karen Ritter, RN BSN

Medically Reviewed By

Karen Ritter, RN BSN

Registered Nurse

Karen Ritter, RN BSN

Medically Reviewed By

Karen Ritter, RN BSN

Registered Nurse

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What Is Hospice Care?

Hospice is end-of-life care intended to provide the relief of symptoms and pain to ensure that patients are safe and comfortable in their final months of their cancer journey. It is focused on comfort and quality of life, instead of aggressive treatments to kill cancer cells.

“Families say they wish they weren’t losing their loved one, but hospice care helped make it the best it could be,” said Dr. Elizabeth Giles, medical director of palliative care at Yolo Hospice in California. Dr. Giles noted that the visits to the patient’s home are a key element of hospice care.

Hospice care and support for the family can provide peace of mind for loved ones.

Here is a summary of what to expect from hospice care for mesothelioma:

  • Regular home visits by nurses
  • 24/7 availability from medical professionals
  • Nondenominational spiritual care available
  • Medication management from doctors
  • Medical equipment and supplies provided to the home
  • Emotional support, counseling and end-of-life support 

Here is an overview of hospice care support for families of mesothelioma patients:

  • Anticipatory loss or bereavement counseling
  • Support and education for families and caregivers
  • Emotional support, counseling and end-of-life support
  • Assistance with funeral arrangements
  • Help with naming beneficiaries

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

According to the Johns Hopkins website, “Research has shown that hospice care at home helps the entire family. Family members are encouraged to take an active role in providing supportive care to the patient. In doing so, the family experiences fewer feelings of helplessness and the patient is not relying solely on strangers for all of his or her care.”

Difference Between Hospice and Palliative Care

Many people are confused about the difference between hospice care and mesothelioma palliative care. Hospice provides support and comfort to patients and families in the final stages of their cancer journey. Palliative care focuses on providing medical management of symptoms and pain throughout the cancer treatment process, including during aggressive treatments. 

Hospice and palliative care are both specialized care focusing on improving quality of life. While there is some overlap between the two, there are also important differences in their goals, timing and settings. Below is a breakdown of the key differences.

Hospice Care Goals

  • Provide emotional and spiritual care
  • Managing symptoms
  • Ease pain
  • Focus on quality of life
  • Provide compassionate care in the final stages of a terminal illness
  • Psychosocial support to patients and families

Hospice Care Timing

  • Care provided when illness is no longer responding to medical treatments
  • Started when mesothelioma disease is in the advanced stages
  • Initiated when the life expectancy is six months or less

Hospice Care Setting

  • At home
  • Hospitals
  • Assisted living and nursing homes
  • Specialized hospice care facilities

Palliative Care Goals

  • Improvement for quality of life regardless of stage of illness 
  • Not limited to end-of-life care
  • Provided in conjunction with aggressive, life preserving cancer treatments
  • Managing physical symptoms, easing pain, and addressing emotional, social and spiritual needs throughout the treatment process

Palliative Care Timing

  • At any stage of an illness, starting at the time of diagnosis
  • Integrated alongside aggressive treatments
  • Help making informed decisions about care

Palliative Care Setting

  • At home
  • Hospitals
  • Outpatient clinics
  • Long-term medical care facilities

Hospice and palliative care are both designed to be flexible, adaptable to the patient’s needs, and focused on providing comfort, providing support, and improving quality of life.

Eligibility for Hospice Care

Hospice care is not an option for patients undergoing life preserving treatments, like chemotherapy. It is for patients with a life expectancy of six months or less, sometimes longer depending on the situation.

For mesothelioma patients, many are not able to receive life-extending treatments because their disease is too advanced. In cases like this, mesothelioma patients are eligible for hospice care.

People with mesothelioma often experience quality of life issues, such as:

  • Shortness of breath
  • Difficulty breathing and swallowing
  • Severe chest or abdominal pain
  • Anxiety and depression
  • Feelings of injustice from their exposure to asbestos

Helping with these quality of life issues is the main focus of hospice treatments and care.

Hospice Care for Veterans With Mesothelioma

Military veterans make up nearly 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

Myths About Hospice Care

Myths about hospice care range from ideas of defeat to who is making the decisions:

    1
  • Hospice care is “giving up” – This is not true. Hospice care can extend a patient’s life and make the most of their remaining time.
  • 2
  • Hospice care is a selfish decision – This is not true. The decision can be made by the patient, loved one or caregiver. Hospice care actually provides support, comfort and resources to the patient and family to maintain quality of life through the final stages of the disease.
  • 3
  • Hospice care is permanent – This is not true. Patients do not always remain in hospice care – there are times when the patient’s condition improves and they can be discharged from hospice care. We recommend checking with insurance first before halting hospice care.

Paying for Mesothelioma Hospice Care

Patients in the end stages of their cancer journey may have a lot of questions about hospice care and how they will pay for this service. Fortunately, insurance usually covers this type of care.

Insurance for Mesothelioma Hospice Care

Medicare, the government-sponsored insurance provider for older Americans, covers most aspects of hospice care. Most private insurance plans also cover the cost of hospice. Patients and families may be responsible for 5% of the cost for inpatient hospice care.

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

Hospice provides:

  • All medical and personal care supplies
  • Spiritual support and counseling
  • Medications for pain-relief and symptom management
  • Medical, nursing and social services assistance
  • Medical equipment, such as hospital beds, oxygen tanks, etc.
  • Grief counseling for the patient and family members

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Types of Hospice Care

People often mistake hospice as a place where a patient goes to receive care, but it is actually a type of care that can occur at a number of different places.

Hospice care is available at home, in a hospital, assisted living home, nursing home or a dedicated hospice care facility. 

The types of hospice care, by location, are:

  • In-home hospice care — The most common form of hospice care occurs at home. Hospice providers come to the patient’s home. Nurses visit a few times a week or according to the individual needs of the patient and family. Home hospice care includes patient care, emotional support and comfort.
  • Inpatient hospice care — Inpatient hospice care occurs at a hospital or other medical facility. This level of hospice care is for patients who need more skilled nursing care and support. Hospice providers work with the patient’s medical team to coordinate treatment and care. Inpatient care provides around-the-clock relief of 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 be provided at an assisted living or nursing home.
  • Hospice care facility — Patients can receive dedicated care from hospice providers outside the hospital setting. These facilities provide a more at-home feel than a hospital with the skilled nursing and comfort measures needed to care for the terminally ill patient. These facilities also provide a comfortable atmosphere for the families to visit.

Respite or “crisis” care is also available for short-term patient care. This option is for when a caregiver or family is unable to provide care for a patient for a short period of time. Respite care provides a limited amount of around-the-clock treatment and support for terminally ill patients.

When to Begin Mesothelioma Hospice Care

The decision to begin hospice care is personal and depends on the individual situation. Some patients and families want to hold off as long as possible because they are still receiving aggressive, life extending mesothelioma treatments. Other people want to initiate hospice care sooner to make the most out of the remaining time.

“Hospice is the right care at the right time,” 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 the doctor or patient decides to end aggressive life preserving treatments, the patient and family should consider hospice care. This type of care is specifically for patients who no longer will benefit from curative therapies.

How to Get Mesothelioma Hospice Care

Hospice care is provided by a team of compassionate medical professionals who work together to offer support and comfort to patients and families facing the final stages of a terminal illness or disease, like mesothelioma. 

Our patient advocates can discuss the many ways hospice care can help you and your family. Contact our registered nurse and patient advocate, Karen Ritter at karen@mesotheliomaguide.com – for more information, help starting the discussion and help finding hospice care resources in your area.

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.
  3. Hospice Care. Johns Hopkins Medicine. Retrieved from: https://www.hopkinsmedicine.org/health/caregiving/hospice-care. Accessed 5/24/2023.
Devin Golden

About the Writer, Devin Golden

Devin Golden is a 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.