Although treatments for mesothelioma have improved over the years, it remains an incurable and progressive disease. Survival times after diagnosis depend largely on how early your mesothelioma is diagnosed, what type of mesothelioma you have (see Chapter 1), and how it responds to treatment, as well as your general health and genetic predisposition to fighting off disease.

Eventually, though, your symptoms and overall health will worsen, and you may reach a point where you’re unable to make health care decisions for yourself. Planning ahead for this time can do much to ease the stress you and your family will feel as you deal with your illness.

This chapter covers basic end-of-life issues that every family affected by mesothelioma must face. Making sure your affairs are in order helps ensure that your wishes are carried out and gives your loved ones a guide if they have to make decisions on your behalf.

Advance Health Care Directives

Advance health care directives, often called “living wills,” provide written instructions for your health care in the event you can’t make decisions yourself or are unable to communicate what you want. The rules and regulations for advance health care directives vary from state to state; your doctor or attorney can tell you what’s required in your state.

Advance directives also provide instructions for life-saving and life- sustaining treatments. Without an advance directive of some sort, emergency responders will do everything they can to keep you alive and stabilize your condition; for example, if you have a heart attack, they will attempt to get your heart beating again in regular rhythm unless you’ve left instructions for them not to attempt to resuscitate you (called a DNR order, for Do Not Resuscitate).

You can refuse any medical treatment you don’t want, and you can put limits on the types of treatment you do want. For example, if you have to be put on a ventilator or other life-sustaining treatment (such as a feeding tube), you can include a time limit after which your doctor and loved ones must discuss your chances of recovery and decide whether to continue or stop the treatment.

The most effective advance directives are fashioned after careful consideration and discussion with your loved ones. It’s not an easy thing to contemplate or talk about, and sometimes it’s less uncomfortable to have this discussion on a “what if” basis. For many people, the toughest question is deciding when the quality of life is poor enough to stop treatment.

Here are some “what if” questions to help you get started:

• What if you can’t breathe on your own? Do you want to be put on a ventilator? How long are you willing to be kept on a ventilator?
• What if you’re unable to eat? Do you want to have a feeding tube? How long do you want to survive on a feeding tube?
• What if your chances of recovery are 50-50?
• What if your chances of recovery are good, but you’re likely to need round-the-clock medical care?

You also may want to discuss these scenarios with your doctor or health care team (including home health aides and social workers, if you have them). If they know what your wishes are, they can help you and your loved ones navigate tough decisions when the time comes. In addition, your doctor can give you an idea of the kinds of complications and late-stage situations that you and your loved ones may have to face.

You should put your wishes in writing; many medical centers and law firms have standard forms you can fill out. File your advance directive with your will and other important papers and make sure your loved ones know where to find it should they need it.

This document should include:

• Instructions for your treatment in an emergency (such as a Do Not Resuscitate order)
• Instructions regarding life-sustaining treatments such as ventilators and feeding tubes, as well as time limits or other limitations you want to establish
• Instructions for evaluating the outcome of your treatment and determining whether you would find those outcomes acceptable
• A health care proxy – someone who’s authorized to make decisions about your medical treatment if you’re unable to make or communicate your wishes yourself.

Wills

In addition to an advance health care directive, you should have a will that describes how your money, property, and personal effects are to be distributed after your death. If you die intestate – that is, without a will – whatever cash and possessions you leave behind will be distributed according to the laws of the state in which you live. These laws may or may not coincide with what you want.

Drafting a will is relatively inexpensive, and it can save your loved ones a lot of headaches. Your attorney can either draw one up for you or refer you to another lawyer who specializes in wills and estate planning.

Some things don’t need to be included in your will. If you have life insurance, for example, the proceeds from that policy will be paid to the person or people you named as beneficiaries when you purchased it. You can list your estate as the beneficiary if you want the money from the policy to be pooled with your other assets. The same is true for certain retirement accounts, such as 401(k)s, and may be true for other financial holdings like CDs or money-market accounts. If you have or are eligible to receive a pension from your employer, check with your human resources department to find out what you need to do to ensure your spouse or children can claim pension funds after your death.

Other Important Papers

Your loved ones should know where to find:

Insurance policies, including contact information (if not an agent’s name and phone number, then the phone number for the life insurance company)

• Deeds, titles, and other ownership papers for real estate, autos, and other titled property
• Rental agreements for safe deposit boxes, post office boxes, storage units, etc.
• Bank account information
• Retirement account information, including pensions, IRAs, 401(k)s, and so on
• Any documentation related to your work history, asbestos exposure, and lawsuit

If you die before your case is resolved, either by settlement or jury verdict (see Chapter 7), your claim can proceed. Your estate will receive any award and the proceeds will be divided among your survivors. In addition, your spouse or children may be able to file a wrongful death lawsuit; your attorney, who is already familiar with your case, can advise your family of their rights and options.