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Mesothelioma GuideResearch & Compensation
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Treatment

Advance Care Planning

Writing down your wishes early keeps decisions in your hands and eases pressure on family

Topic
Treatment & clinical care
Reading time
3 min
Understand the diagnosis

Advance care planning means thinking about, discussing and writing down your wishes for medical care in case you cannot speak for yourself. It is useful at any stage of illness, not only near the end. For people with mesothelioma and their families, early planning reduces stress during emergencies and makes sure decisions reflect what you value.

Choosing a healthcare proxy

A healthcare proxy, sometimes called a healthcare agent or durable power of attorney for health care, is the person who makes medical decisions for you if you cannot. Choose someone who understands your values, can handle stressful conversations and will follow your wishes even if they differ from their own. Talk with them before naming them. Many people also name a backup. Each state has its own forms, often available from hospitals or state health departments. Make sure your proxy knows where your documents are kept, and talk through specific situations so they understand your preferences.

Writing an advance directive

An advance directive or living will records your preferences about treatments such as breathing machines, feeding tubes and resuscitation in different situations. Some states use a medical order form, often called POLST or a similar name, for people with serious illness, which translates wishes into orders that emergency teams follow. Your doctor can help you understand the options and what they mean for someone with your condition. Documents should be signed according to your state's requirements. Review the forms carefully and ask about any terms you do not understand. Some people also write a personal letter explaining their values.

Sharing and updating your wishes

Give copies to your proxy, family members and every doctor, and ask that they be added to your medical record. Keep a copy somewhere easy to find at home. Review your documents after major changes, such as a new diagnosis stage, a hospitalization or a change in goals. Talking openly with family now can prevent disagreements later. Palliative care teams and social workers can help guide these conversations. Bring copies to hospital admissions. Some states offer registries where documents can be stored for easy access. Advance care planning is an ongoing conversation rather than a one-time task, and revisiting it keeps your wishes current.

What to do next

  1. 1

    Choose a healthcare proxy and talk through your values with them.

  2. 2

    Complete your state's advance directive form with your doctor's guidance.

  3. 3

    Give copies to your proxy, family and all treating doctors.

  4. 4

    Review and update your documents after any major change in health or goals.

Questions

Common questions

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