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Mesothelioma end-of-life decisions include making a will and financial arrangements, medical care, DNRs (do not resuscitate orders), and more. These difficult decisions require a team of medical specialists, legal and financial experts, and family for information and support.
What Happens at the End of Life with Mesothelioma?
For most patients with the diagnosis, mesothelioma is terminal cancer. Whether you or your loved one has a few months or a few years, it is necessary to face what will happen at the end and related decisions.
Although no one wants to think about it, patients and their loved ones benefit from learning about what happens at the end of life.
Mesothelioma life expectancy is just 15 months on average. Actual survival times vary significantly by individual, treatment choices, and cancer stage. In general, mesothelioma symptoms near death include:
- Extreme difficulty breathing
- Extreme fatigue
- Sleeping more frequently.
- Weight loss and muscle wasting
- Severe pain where the cancer has spread
While end-stage cancer can be very uncomfortable and painful, palliative treatments help relieve many of the symptoms.
Making decisions during this time is challenging. It’s important to discuss the issues and to make difficult choices and plans as early as possible.
Planning End-of-Life Care
As mesothelioma progresses, you and your family will need to carefully consider important issues. These include deciding on what medical treatments are seen most appropriate as well as how and where to provide care.
Treatment Goals and Decisions
Your medical team will continue to have important discussions along the way about how to best meet your goals. Some medical treatments may not improve the quality or duration of life, so it is essential to have continual conversations with your care team about what is most important to you.
Deciding to pursue additional treatments versus stopping is a personal choice. Family members or close friends can help support your wishes and help focus on what your goals are. Because these people love you and have your best interests in mind, their advice can help clarify your decisions.
In addition to choosing whether to continue with treatment, you will have other important decisions about medical care. This includes formulating a plan for dying naturally versus medical interventions to restart your heart or lungs. This is referred to as Code Status.
A Full Code means you want every medical intervention done to bring you back to life, often including ventilation via intubation. A DNR status, or Do Not Resuscitate, means you prefer to die naturally, and no additional medical interventions will be made to revive you if your heart or lungs stop working.
You will also want to decide the extent of life support you will want in your final days. You can make specific choices about ventilators, feeding tubes, IV hydration, pain management, and antibiotics. This is all based on what you desire and what is most important to you.
These topics might be difficult for the family to understand and accept, so open communication is healthy and helpful. Talking about these topics ahead of time will reduce the stress and burden on your family members.
Choosing Hospice and In-Home Care
Another important decision to make is how and where the patient will receive end-of-life medical and palliative care. Hospice is supportive care for terminal patients. Hospice encompasses many aspects of care:
- Palliative medical treatments
- Complementary and alternative medicine
- Personal and hygiene care
- Diet and nutrition planning
- Physical therapy
- Therapy and counseling for patients and family
- Spiritual services
- Assistance making end-of-life legal and financial decisions
What hospice does not include is any type of curative treatment for mesothelioma. Hospice supports the end of life but does not treat cancer.
Transitioning to hospice care is important for a patient facing the end of life, but they and their families have two choices:
- In-Home Hospice. When a patient is able to live at home with one or more caregivers, they might choose in-home hospice. This means the members of the hospice team come to the home to provide support and care.
- Hospice Facility. Many patients feel more comfortable staying at home, but it isn’t convenient or even possible for all families. In these situations, the patient goes to a hospital or dedicated facility that provides hospice care.
Legal End-of-Life Decisions for Mesothelioma Patients
Medical care is often the most immediate concern for patients and their families. Also important to consider are legal decisions, some related to medical care.
A will is a legal document that outlines how a person’s belongings, properties, money, and other assets are to be distributed after they die. Making these decisions helps a patient feel more in control over their situation and ensures that their wishes are respected.
If the patient dies before making a will, an executor must make decisions regarding the distribution of assets. The executor is typically the closest family member.
A living will is another important legal document for end-of-life decisions. This provides specific information for the person you designate as your MPOA. This may include specific directions regarding feeding tubes, IV hydration, specifics around intubation, or other invasive medical treatments.
A living will does not designate someone to make medical decisions for you. That can only be done by someone you have given durable power of attorney for health care. You should complete this legal step to ensure someone you trust can make decisions for you.
Medical Power of Attorney
A Medical Power of Attorney (MPOA) is a legal document that designates others to make decisions for you if you cannot do so. Each state has a form and generally speaking, it identifies a primary person as well as many backup individuals as you wish. This can be a spouse, family member, or friend, but it should be someone close to you.
A lawyer can help you fill out these documents for a fee. Most medical offices or hospitals can help you fill these out for free and ask either a notary or witnesses to confirm the legality of these forms.
A do not resuscitate order is another document that can help a patient maintain some control over their situation. It outlines when doctors should stop providing life-saving resuscitation at the end of life when the patient can no longer communicate their wishes.
Working with a Lawyer
A lawyer can craft legal documents regarding end-of-life care. Many medical offices and hospitals also offer this service free of charge, so depending on your preferences, you can do it at any location of your choosing.
Once finalized, share these documents with your medical care team and any family member involved in your care. They can also be updated if your wishes change. It is important to discuss the contents of your living will and advance directives with loved ones, so they know what to expect.
Financial End-of-Life Decisions for Mesothelioma Patients
Financial and legal decisions often overall. For instance, the patient’s will is a legal document that describes what will happen with their financial assets. There are some other financial documents or choices patients might want to make toward the end of life.
Power of Attorney
In addition to the medical power of attorney, you can also designate a loved one to have power of attorney for financial issues.
This could be the same person you chose to make health care choices, but it doesn’t have to be. This person will make choices about the patient’s estate after they die. Decisions should be limited if your will outlines your wishes in detail.
A patient might want to create a living trust as another way to maintain control toward the end of life. A living trust places assets in a trust, which are transferred to beneficiaries after death.
The trust gives patients more control over what happens to their assets while still alive. It also helps beneficiaries get their distributions faster after death, as it negates the need for probate. Living trusts, unlike wills, are private, so it ensures privacy for the family.
While making other financial choices, patients often want to outline funeral costs and plans. As with other choices, it gives you more control over what happens at the end of life.
Some patients want to plan all the details of their funeral, while others are happy to let their loved ones do it later. This is a personal choice each patient must make.
Financial plans for the funeral are particularly important. Arranging for the costs helps reduce later stress for the family.
Why Is it So Important to Make Mesothelioma End-of-Life Decisions Now?
For many people, this is a tough time to be making such important decisions. To face the end of your life is difficult enough, but facing these practical decisions can present even more of a challenge. However, facing these important and emotional decisions will make your loss a little easier for your family.
When patients have not created legal documents, families must make these choices. Your family will be suffering through your illness too. Knowing exactly what you would want when you are no longer able to communicate can ease their suffering.
These legal documents will also make it easier to take care of your estate after your passing. In some states, intestate cases can go on for months or years, which can be very difficult for grieving family members.
Many families suffer serious, sometimes irreparable, conflicts over medical, legal, and financial decisions for a dying loved one. Rely on those loved ones now and include them in your end-of-life decisions. Then when you are gone, they can grieve and remember you with love.Get Your FREE Mesothelioma Packet
Page Written by Mary Ellen Ellis
Mary Ellen Ellis has been the head writer for Mesothelioma.net since 2016. With hundreds of mesothelioma and asbestos articles to her credit, she is one of the most experienced writers on these topics. Her degrees and background in science and education help her explain complicated medical topics for a wider audience. Mary Ellen takes pride in providing her readers with the critical information they need following a diagnosis of an asbestos-related illness.
Page 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.