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Mesothelioma is a highly aggressive cancer and is often not diagnosed until it has progressed to later stages. This often makes treatment difficult. Because mesothelioma often comes with a poor prognosis, most patients will face some very difficult end of life decisions.
It is important to include your loved ones in making these tough decisions. Continuing with medical care, choosing hospice care, and financial and legal decisions will impact not only you, but also the loved ones you leave behind. In addition to family, professionals like doctors, lawyers, and financial experts can assist you in making these tough decisions.
End-of-Life Medical Decisions
As mesothelioma progresses, there will be important topics that need careful consideration both from you and your family. This includes deciding on what medical treatments seen most appropriate. 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 quality or duration of life, and so it is very important to have continual conversations with your care team about what is most important to you.
Deciding to pursue additional treatments versus stopping are personal choices. Family members or close friends can be helpful in supporting your wishes and helping 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, there are other important decisions to make about medical care. Generally speaking, once you decide to focus on symptom management, there may be other topics for you and your family to discuss. This includes formulating a plan for dying naturally versus medical interventions to restart your heart of 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 upon what you desire and what is most important to you. These topics might be difficult for 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. It can also be helpful to put your wishes down in writing. This eliminates a panic situation with your family making decisions in emergent situations without knowing what you would have wanted.
Legal End-of-Life Decisions
A Medical Power of Attorney (MPOA) is a legal document that designates others to make decisions for you if you are not able to do so. Each state has a form and generally speaking it identifies a primary person as well as as many backup individuals as you wish. This can be a spouse, family member or friend. These documents can be filled out with a lawyer for a fee. Most medical offices or hospitals can help you fill these out for free and will ask either a notary or witnesses to confirm the legality of these forms.
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 direction 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.
Legal documents regarding end-of-life care can be crafted by a lawyer. 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, these documents should be shared 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
A will is an important legal document for making end-of-life decisions about your finances. The more detail you provide concerning your money and assets, the easier it will be for your family. A will outlines what to do with your money, your home, any accounts you have, and also makes financial and care arrangements for children or pets.
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 your estate after you have passed, although decisions should be limited if your will outlines your wishes in detail.
Making End-of-Life Decisions Now Keeps the Peace
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 to face these practical decisions can present even more of a challenge. However, facing these important and emotional decision 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 be drawn out 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.
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.