What Is the Purpose of Advance Directives for Mesothelioma?
An advance directive is a legal document that records your preferences for future medical care. It may also identify someone you trust to make health care decisions if you become unable to do so yourself.
Advance directives can be especially important for people with malignant mesothelioma because their health and care needs may change over time.
Here’s what to know about advance directives:
- Having one doesn’t mean you’re stopping treatment. You can complete one to help your family understand your wishes if your health changes.
- Types of advance directive documents include living wills and medical proxies.
- An estate attorney can help you prepare advance directives that reflect your wishes and meet your state’s requirements.
Mesothelioma Hope and our legal partners at Simmons Hanly Conroy can help you explore treatment options, understand your legal rights, and plan for your family’s financial future.
Get our Free Mesothelioma Guide to learn more.
Types of Advance Directives for Mesothelioma Patients
The two main types of advance directives are living wills and medical powers of attorney. A living will explains your wishes for medical care, while a medical power of attorney names someone to make decisions for you if you’re unable to do so.
Learn more about each below and how they can help you make important end-of-life decisions after a mesothelioma diagnosis.
Living Will
A living will explains which medical treatments you would or wouldn’t want if you became too sick to communicate your wishes. It generally takes effect when you’re no longer able to make these choices yourself.
Each state has its own rules for signing a living will, including whether witnesses or notarization are required.
Depending on the document, a living will may address decisions involving:
- Artificial nutrition and hydration
- Certain medications or procedures
- Hospitalization
- Intubation or mechanical ventilation
- Pain and symptom management
- Other life-sustaining treatments
You can discuss these choices with your doctor so you understand what different treatments could mean based on your health and goals.
Health Care Proxy or Medical Power of Attorney
A medical power of attorney lets you choose someone, called a health care proxy, to make medical decisions for you if you’re unable to make them yourself.
Depending on the state, this person or document may be called:
- Durable power of attorney for health care
- Health care agent
- Health care proxy
- Medical power of attorney
You don’t have to choose your caregiver or closest relative for this role. Choose someone you trust to understand your priorities and respect your wishes.
“I’ve always gone in and gotten things together. So it seemed a natural choice that Dale would ask me to be the executor of his estate, the caregiver, and, quote unquote, “in charge of things,” if you will. I’m his health care proxy and his power of attorney.”
– Melanie, sister of mesothelioma warrior Dale Perkins
Other Forms to Help Patients With Advanced Mesothelioma
Other medical and legal documents can also help mesothelioma patients plan for future care, manage their finances, and protect their families.
Key mesothelioma estate planning forms include:
- Beneficiary designations: These allow you to name who should receive specific assets after your death.
- Do-Not-Resuscitate (DNR) order: This instructs medical professionals not to perform CPR if your heart stops or you stop breathing. Having one doesn’t mean refusing other treatments or comfort measures.
- Last will and testament: Use your will to name who should receive your assets, choose someone to handle your estate, and name guardians for minor children.
- Financial power of attorney: This lets someone you trust handle financial matters on your behalf, such as paying bills or managing accounts. You can specify which decisions they’re allowed to make.
- Trusts: These hold specific assets for beneficiaries that you designate.
An experienced attorney can help you understand which documents you need and make sure they reflect your wishes. Mesothelioma Hope can connect you with legal partners who understand advance care planning and the challenges families face after a diagnosis.
Download our Free Attorney Checklist for a list of questions you can use when choosing a mesothelioma lawyer.
Why Is Advance Care Planning Important With Mesothelioma?
Creating an advance directive can feel overwhelming, but it can help you and your family feel more prepared for future medical decisions.
Mesothelioma is an aggressive cancer, and while long-term survivorship is possible, an advance directive can help make sure your wishes are understood and respected if you can no longer make medical decisions.
An advance directive can also take some of the pressure off your loved ones. Instead of guessing what you’d want, they’ll have clear instructions to help guide medical decisions.
According to BMC Palliative Care, advance directives help:
- Ease conflict among next of kin in charge of medical decisions
- Boost end-of-life care satisfaction
- Lower rates of hospital admissions
Additionally, the Journal of Clinical Medicine noted that a lack of advance directives was associated with late-stage patients receiving more invasive treatments they didn’t want.
What Decisions Can a Mesothelioma Advance Directive Address?
Your advance directive can address the types of medical care you would want under specific circumstances.
Through advance directives, you can specify if you want:
- Breathing machines (mechanical ventilation)
- Comfort-focused care near the end of life
- CPR and resuscitation
- Feeding tubes
- Hospice care (care focused on comfort and support near the end of life)
- Other life-sustaining treatments
- Palliative care (treatment to relieve symptoms and improve quality of life)
“Several factors influence treatment decisions, with the most important being the patient’s wishes. When discussing different treatments, patients’ preferences and goals, including quality of life vs. aggressive treatment, are essential. These are truly shared-decision visits.”
– Dr. Estelamari Rodriguez, mesothelioma specialist at Sylvester Comprehensive Cancer Center
These decisions can be very personal. One mesothelioma patient may prioritize receiving treatment for as long as possible, while another may want comfort care under certain circumstances.
Your doctor can explain how specific interventions could affect your health and quality of life. An oncology social worker may also help you communicate with your care team and find resources as your needs change.
How to Create an Advance Directive After a Mesothelioma Diagnosis
You don’t have to wait until mesothelioma gets worse to begin advance care planning. Starting earlier can give you more time to consider your preferences and discuss them with the people you trust.
Leading organizations like the American Cancer Society (ACS) recommend developing an advance directive plan while you’re still able to make your own decisions.
Steps to creating an advance directive document may include:
- Talk with your medical team. Ask what treatments or medical decisions you could potentially face as mesothelioma progresses.
- Consider your priorities. Think about your mesothelioma treatment goals, independence, comfort, and quality of life.
- Choose a health care proxy. Select someone you trust to understand and advocate for your wishes.
- Complete your state’s documents. Advance directive forms and signing requirements vary by state.
- Talk with your family and caregiver. Explain your preferences so the people closest to you understand your choices.
- Share copies. Give the appropriate documents to your proxy and health care providers and keep a copy somewhere accessible.
- Review your care plan. Revisit your documents if your health, treatment goals, relationships, or preferences change.
Your health care team, patient advocate, or an attorney familiar with your state’s requirements can help you find appropriate forms and resources.
Mesothelioma Hope and our legal partners at Simmons Hanly Conroy can also connect you with resources to more easily plan for your family’s future after a diagnosis.
“Simmons Hanly Conroy has made it much easier for the family to focus on things that are important, to focus on Dale’s health care, to focus on his end of life care, as opposed to having to focus on the legal issues.”
– Melanie, sister of mesothelioma warrior Dale Perkins
Can You Change an Advance Directive for Mesothelioma?
Yes, you can generally update or revoke an advance directive while you have the capacity to make your own health care decisions, although state requirements vary.
A change in your mesothelioma treatment doesn’t automatically mean your advance directive needs to change.
However, it may be a good idea to review it if:
- Unexpected life events occur, such as a loved one’s death
- Your cancer has spread
- Your personal priorities shift
- Your treatment plan is adjusted
“You can change your mind at any time about what’s written in your advance directive. You can also revoke it (take it back) at any time.”
– American Cancer Society
Let your health care proxy and medical team know if you make changes so they have your current instructions.
Our Free Checklist of Questions to Ask Your Doctor can help you get clarity on what steps you need to take to prepare your family as you face mesothelioma.
Get Help Planning for the Future With Mesothelioma
Having advance directives in place can give both patients and families clarity after a mesothelioma diagnosis. While each patient’s journey with mesothelioma is unique, staying prepared can help make the road ahead a little smoother for both you and your loved ones.
At Mesothelioma Hope, we’re here to guide you and those who matter to you most as you face mesothelioma together.
Our team can help you:
- Connect with attorneys who specialize in estate law
- Determine which estate planning resources could be helpful
- Find doctors and treatments in your area
- Pursue compensation for your mesothelioma diagnosis
- Get the support you and your family deserve
Call (866) 608-8933 now or get our Free Mesothelioma Guide to learn more about how we can support you.
Mesothelioma Advance Directive FAQs
When should someone with mesothelioma create an advance directive?
You can create an advance directive at any point after a mesothelioma diagnosis. You don’t need to wait until your condition becomes advanced or you begin end-of-life planning.
Completing one early gives you time to carefully consider your preferences and discuss them with your family and mesothelioma doctors.
Are advanced directives the same as a living will?
A living will is a type of advance directive. It documents which mesothelioma treatments you wish to pursue if you become unable to communicate your decisions.
Other advance directives can name a health care proxy or agent who is authorized to make certain decisions for you.
Who should I choose as my health care proxy?
You can choose someone you trust to respect your wishes and communicate them during potentially stressful situations. The person should be willing to serve and understand your preferences regarding medical care.
Your state’s rules may also affect who is eligible to serve as your health care proxy if you’re facing a serious illness like mesothelioma.
Call (866) 608-8933 for help navigating advance directives and other decisions following a mesothelioma diagnosis.
Can I still receive mesothelioma treatment if I have an advance directive?
Yes. Having an advance directive doesn’t mean you have to stop treatment. Patients can continue receiving mesothelioma treatment while documenting what they would want if they later can’t make or communicate medical decisions.
While it’s always a good idea to prepare for the future with options like advance directives, some patients become long-term mesothelioma survivors — still fully capable of making their own treatment choices and living life to the fullest.
For example, Ellen Patton is now the longest-known living pleural mesothelioma survivor. Though doctors gave her 12 to 18 months to live after her diagnosis, she’s still alive today.
“Although a doctor will say, ‘You’ve got a year, year and a half,’ there is still hope,” Ellen says now. “And I’m an example of that.”
Where can I get advance health directive forms?
Speak to an estate attorney to get the most up-to-date advance directive forms in your state. These lawyers can help you fill out the forms correctly.
You can also download forms for advanced directives online through organizations like the AARP. Always make sure to double-check that online forms are still accurate.
How do advance directives fit into mesothelioma estate planning?
Advance directives and mesothelioma estate planning address different parts of planning for the future.
Estate planning for mesothelioma can determine:
- How property and finances are managed
- Who handles your estate after death
- Who receives assets
A financial power of attorney can authorize someone to manage certain financial matters during your lifetime.
Advance directives focus on your medical wishes. A medical power of attorney or health care proxy identifies who can make health care decisions if you can’t make them.
Together, these documents can help protect your wishes and give your loved ones clearer instructions during difficult circumstances.
