Dying from Mesothelioma
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Due to the aggressive nature of mesothelioma, it is fatal for most patients. Patients and families should be aware of supportive care treatment options and other resources to prioritize symptom management and offer some relief. Knowing what to expect at the end of life can help relief anxiety and fear.
What to Expect When Mesothelioma Is Terminal
Mesothelioma is an aggressive cancer that typically spreads rapidly and is mainly considered incurable. This means that for most patients, it is terminal. Some people may live with cancer for a few years, and some may even go into remission, but the general prognosis is poor.
What Is the Life Expectancy of Someone with Mesothelioma?
The average mesothelioma life expectancy across the board is just 15 months.[1] This includes all types of mesothelioma, diagnosed at any stage and for patients of all ages. Most will face dying from mesothelioma.
What Happens in the Final Stages of Mesothelioma?
By stage IV, advanced metastatic has a greater effect on organs, leading to more symptoms, such as fatigue, pain, and weight loss. The symptoms of this late-stage mesothelioma include:[2]
- Difficulty swallowing
- Shortness of breath
- Chest pains
- Coughing with blood
- Fever and night sweats
- Fatigue
- Weight loss
- Pain at sites of metastasis
- General discomfort and malaise
Is Mesothelioma Death Painful?
End-stage cancer can be very painful, but palliative care relieves most of this pain. When death is close at hand, most cancer patients experience certain symptoms in addition to those characteristics of the specific cancer type:[3]
- Extreme fatigue, sleeping more often
- Delirium and confusion
- Worsening pain
- Difficulty swallowing pills
- Decreased appetite
- Shortness of breath, rattling breath
- Constipation
- Hemorrhaging
In the final days and hours of life, many patients stop eating or drinking. They often become withdrawn and unresponsive. They may be sleeping most of the time, finding it difficult to stay awake.
How Does Mesothelioma Cause Death?
Most patients die from mesothelioma in stage 4, when the cancer has spread to other parts of the body and caused extensive damage.
Late-stage cancer causes organs to fail, impairs the immune system, causes malnutrition and wasting, and can even result in a coma. The actual cause of death at the end of mesothelioma is likely several factors, such as infections and organ failure.
How Palliative Care Can Help
Palliative care was once thought to be the same as hospice and “giving up.” It is not the same as hospice, and palliative care now has a vital role along with the oncology team during treatment.
More people are now aware of the benefits of incorporating palliative care at the time of diagnosis and continue through the treatment course. The primary role of palliative care is to focus on complex symptom management and ensure treatment decisions align with the patients’ goals for therapy.
Palliative care is any treatment that helps to improve the patient’s quality of life. A patient’s preference should always be prioritized in decisions regarding palliative care. Sometimes that even includes no treatment and focusing on symptom management alone.
Some options for end-stage mesothelioma patients include:
- Pain medication. Late-stage cancer can be painful, and combination of opiates, non-steroidal medication, and even other drugs in the anticonvulsant/ antidepressant category can help provide relief.
- Surgical procedures. Minor surgical procedures, such as a thoracentesis to drain fluid from the chest cavity, may help mesothelioma patients rest more comfortably.
- Chemotherapy or radiation. Many patients choose to stop treatments at this stage, but they may help improve quality of life by shrinking the sizes of tumors. Radiation therapy can be particularly helpful with relieving pain from bone metastasis.
- Complementary and alternative therapies. Many patients benefit from alternative practices, such as acupuncture, gentle massage therapy, aromatherapy, and others. They may provide relief from physical symptoms as well as anxiety, stress, and fear.
Non-Medical Support for Patients
Medical care at the end of life is important, but so are other types of care. Therapy and counseling, and spiritual guidance bring comfort to many patients as they are dying. It is important to ask patients what kind of support they want and what they do not want.
How Can I Help My Dying Loved One?
Loved ones can support the patient in important ways. Simply being there is often comforting. Talk to the patient, touch them, read to them, watch movies, or sit together.
If they can still talk, let them express their feelings and any fears they have about dying. Don’t avoid difficult subjects. Talk about memories and happy times, but be prepared to talk about tough things too.[4]
It is also important to help your loved one make decisions during this time. You can bring them some relief by helping with practical things, like money or legal decisions. Work with financial counselors or a trusted lawyer to make this easier for both of you.
Designate a Medical Power of Attorney (MPOA) who can make medical decisions on behalf of the patient if they are unable to do so.
Support for Families
As a loved one is dying from mesothelioma, the family needs support as well. One of the best things you can do for your own mental health is to be there for your loved one. Provide the support and comfort they need as they choose it.
Family and loved ones can also benefit from therapy. Grief begins before your loved one passes away, and talking about it to a mental health professional is helpful. You may also find comfort in a support group for grieving. Listening to and sharing with people going through similar experiences helps you feel less alone and less afraid.
What Is Hospice Care?
Technically speaking, hospice care provides palliative treatments for those with a terminal illness thought to have less than six months to live. The focus is on making patients feel better, so things such as chemotherapy and radiation will stop. It is possible to enroll and unenroll should that be the choice.
Home Hospice vs Inpatient Hospice
Your loved one may choose to receive care at home, known as home hospice care, or stay in a hospice facility with 24-hour care and supervision. At home, the primary caregiver is usually a family member with support from the medical staff.
Hospice care tries to meet all the needs of the patients through a team of professionals:
- Medical doctors and nurses
- Health aides and nursing assistants
- Social workers and counselors
- Spiritual counselors
- Pharmacists
- Volunteers
Hospice Services
Hospice provides palliative medical care, alternative therapies, counseling, spiritual guidance, and recreation. Hospice teams may also include legal and financial professionals to help families make critical end-of-life decisions.
Daily activities such as bathing, dressing, or wound care are typically done by family members, with nursing staff coming out a few times a week, depending on the needs.
Benefits of Hospice Care
Hospice care benefits both patients and their families. With a care team taking charge, the pressure is taken off the family. The team offers options and guidance, and the patient and family can make more informed decisions with more confidence.
It is also important to understand that hospice is not just for patients in their final days or weeks of life. Medicare allows for hospice care for patients expected to live six months or less. Being in hospice may seem scary initially, but it can also provide great comfort and relief.
Can Mesothelioma as a Cause of Death Be Wrong?
Yes, doctors can make mistakes when diagnosing mesothelioma and when determining a cause of death. However, it is more likely that mesothelioma is underreported as a cause of death. A pathologist might mistake a mesothelioma cause of death for lung cancer or another similar illness.
A study of cancer registry entries and causes of death found that this does happen frequently. The researchers compared deceased people diagnosed with mesothelioma during their lives with their death certificates.[5]
They found that 10% of death certificates were incorrect. These certificates listed lung cancer, another cancer, or another cause of death when they should have listed mesothelioma.[5]
Why Is Cause of Death Important?
Besides wanting to know what happened to your loved one, an accurate cause of death has practical implications. Most cases of mesothelioma are related to occupational asbestos exposure. For families to seek justice and get compensation from those responsible, they need proof of the cause of death.
If you feel uncomfortable or unsure about the cause of death listed on a death certificate, talk to a lawyer. You can challenge the cause of death, but you have to go through the proper channels, which vary by state. A lawyer will make sure you have the best chance of success and that you do everything correctly.
Facing death head-on isn’t easy, but it is inevitable for patients dying of mesothelioma and their families. As the loved one of a patient with mesothelioma, know what to expect, what you can do to support them, and help them make decisions in their best interest.
Get Your FREE Mesothelioma PacketPage Medically Reviewed and Edited by Anne Courtney, AOCNP, DNP
Anne Courtney has a Doctor of Nursing Practice degree and is an Advanced Oncology Certified Nurse Practitioner. She has years of oncology experience working with patients with malignant mesothelioma, as well as other types of cancer. Dr. Courtney currently works at University of Texas LIVESTRONG Cancer Institutes.