Mesothelioma is usually a terminal cancer. Dying from mesothelioma is inevitable for most people diagnosed, but it helps to know what to expect. Patients and families should also understand their support options, resources, and available treatments.
What to Expect When Mesothelioma is Terminal
Mesothelioma is an aggressive cancer that spreads rapidly and is mostly 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.
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The average mesothelioma life expectancy across the board is just 15 months. This includes all types of mesothelioma, diagnosed at any stage, and for patients of all ages. Most will face dying from mesothelioma. By stage IV, advanced metastatic cancer patients are nearing the end of their lives. The symptoms of this late-stage mesothelioma include:
- Difficulty swallowing
- Shortness of breath
- Chest pains
- Coughing with blood
- Fever and night sweats
- Weight loss
- Pain at sites of metastasis
- General discomfort and malaise
When death is close at hand, most cancer patients experience certain symptoms in addition to those characteristic of the specific cancer type:
- Extreme fatigue, sleeping more often
- Delirium and confusion
- Worsening pain
- Difficulty swallowing pills
- Shortness of breath, rattling breath
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 They often become withdrawn and unresponsive.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 Palliative Care Can Help
End-of-life symptoms are painful, uncomfortable, and distressing. Even when there is no longer hope of treating the disease, palliative care provides hope, comfort, and relief.
Palliative care is any treatment that helps to improve the patient’s quality of life. It should be administered with the patient’s input and preferences. Some options for end-stage mesothelioma patients include:
- Pain medication. Late-stage cancer is very painful, and potent painkillers can be used to bring some 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.
- 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 type 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.
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.
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?
Hospice care is treatment for end of life, which includes but is not the same as palliative care. A patient at any stage of an illness may receive palliative care, but hospice care is for those dying of cancer or other diseases.
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
The team provides daily care, including bathing, dressing, and eating assistance. They provide palliative medical care, alternative therapies, counseling, spiritual guidance, and recreation. Hospice teams may also include legal and financial professionals to help families make important end-of-life decisions.
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.
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.