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End of Life Decisions

When cancer intensifies, mesothelioma patients and their loved ones often have questions surrounding end of life decisions. While determining end of life decisions is difficult, it’s important for patients and families to fully understand their options ahead of time and discuss them with their doctor or medical provider. Knowing end-of-life decisions in earlier stages can help patients and their loved ones feel more prepared for whatever the future may hold.

Fact-Checked and Updated by: Jenna Tozzi, RN

Last updated:

End of Life Decisions and Mesothelioma Explained

End of life decision making is never easy. During a time when patients and loved ones may be feeling a variety of complex emotions, it may seem difficult to think clearly about such important matters. This is a good time to consider physical, emotional, financial and family concerns.

Some of the key areas of concern when weighing end of life options include:

  • Treatment options
  • Financial decisions
  • Pain management
  • Emotional and mental health
  • Faith-based concerns

Treatment Options

What type of treatments are you comfortable with, and how long will you continue active treatment? Mesothelioma patients may have several palliative treatment options to consider under the guidance of a health professional.

They may include more traditional therapies such as surgery, chemotherapy and radiation therapy, or more modern treatment options such as clinical trials, holistic measures, and complementary or alternative therapies.

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Financial Decisions

Paying for cancer treatments is often one of the biggest stressors for patients and their loved ones. Now is the time to iron out financial details with your healthcare provider and insurance company. Consider designating someone you trust as power of attorney for health care and/or financial decisions.

Patients may also want to take the time to create or make changes to a living will, including how estates and assets will be distributed should death occur. Make sure to have all official decisions documented in writing.

Pain Management

How will you deal with pain? There are many ways doctors can help manage pain, and pain does not always have to be a part of dying. Make sure to discuss pain management options with your care team, including healthcare professionals and loved ones who have taken on the role of caregivers.

It’s helpful for some patients to keep a pain diary to share with their doctors. Early on, make sure to consider your willingness to try medicinal pain management options such as morphine or opioids, and more holistic methods like meditation and massage.

More invasive pain management procedures can include surgery, nerve blocks or targeted radiation. Your doctor will know what procedures or medications may help when pain intensifies, but it’s important to discuss these methods early on with caregivers who may be making decisions for you when the time comes.

Emotional and Mental Health

Understand that it’s normal and human to feel highly complex, mixed emotions when faced with a terminal illness such as mesothelioma. Fear, anger, depression, or even guilt and regret—these are just a handful of feelings mesothelioma patients may deal with as they face the end stages of cancer.

Consider seeking out the help of a grief counselor or, at the very least, a trusted loved one who will allow you to open up and be vulnerable while expressing feelings.

Professional counselors, especially those who specialize in treating patients facing a terminal illness, can help patients to navigate this challenging time in life and develop coping tools for easing anxieties and dealing with difficult emotions.

Faith-Based Concerns

Spirituality, whether based on religious affiliation, life philosophy or particular worldview, is often a source of comfort for those faced with end of life decisions. Some mesothelioma patients, however, may feel their beliefs are challenged by their diagnosis.

It’s best to discuss these feelings and concerns with a spiritual care practitioner who shares your spiritual views. Make sure loved ones, as well as those caregivers assigned to you through hospice, are aware of any spiritual practices or wishes you may have at end of life.

End of Life Decisions for Family Members

It’s important for family members and care circles to remain supportive towards a cancer patient’s needs and wishes. Be patient and understand that terminally ill patients deal with very complex emotions—and some of those emotions such as anger or sadness are completely normal.

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Improving Your Comfort With Mesothelioma Treatments

Some patients choose to receive active treatment as long as possible, while others focus on more palliative care—a type of care that focuses strictly on pain management and symptom relief to relieve suffering.

Some patients and loved ones turn to hospice care, a service that provides medical treatment, emotional support and spiritual resources for people in the last stages of a terminal illness. Many patients who are able to discuss these options with loved ones early on can enjoy remaining time in comfort and peace.

Jenna TozziWritten by:

Director of Patient Advocacy

Jenna Tozzi, RN, is the Director of Patient Advocacy at Mesothelioma Hope. With more than 15 years of experience as an adult and pediatric oncology nurse navigator, Jenna provides exceptional guidance and support to mesothelioma patients and their loved ones. Jenna has been featured in Oncology Nursing News and is a member of the Academy of Oncology Nurse & Patient Navigators & the American Nurses Association.

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