End-of-Life Planning When You Have Lupus

End-of-life planning is an important step to take to help you prepare for your future.

What is end-of-life planning?

End-of-life planning is the process of thinking about and documenting what you’d like to happen to you at the end of your life. It’s a way for you to make sure your financial, legal, and medical wishes are clear — and it can protect you from ending up in a situation you don’t want to be in. End-of-life planning means thinking through things like:

Who should inherit the things you own after you die
What you’d like your final medical care to look like — and if there are any life-sustaining treatments you don’t want to have
What should happen to your remains after death
Who you’d trust to look after your finances or pay your bills if you become very ill

Many people find thinking about the end of their own life difficult or uncomfortable. But it’s important to take time to plan ahead while you’re able. Thinking through and clearly documenting your wishes helps ensure that they’re carried out the way you’d like — and it can help ease the burden on your loved ones during your final days and after your death.

Who needs an end-of-life plan?

In short, everyone needs an end-of-life plan! No one knows for certain how long they’ll live — whether they have a chronic disease like lupus or not.

And while most people with lupus can live a long, high-quality life with proper treatment, it’s still important to plan ahead for a range of possibilities.

It’s never too late or too early to start working on an end-of-life plan. The most important thing is taking time to think about it while you’re able to — whether you’re in your 20s or your 90s.

Types of end-of-life planning

End-of-life planning involves planning for what should happen to your finances and estate, the type of medical care you’d like to receive, and how you’d like to be celebrated or remembered after your death.

Financial and estate planning

Financial and estate planning means making plans for your assets, like any savings, investments, property, or vehicles that you have. In many cases, this involves choosing a loved one or loved ones to inherit your assets after you die.

You may also want to choose someone who you trust to handle your financial affairs for you if you get very ill. For example, someone may need to write checks on your behalf or make sure your bills get paid.

And if you have children who aren’t yet adults, you can also plan for who will take care of them if you’re not able to.

Medical planning

Medical planning involves thinking about and documenting what type of care you’d like to receive for a variety of medical situations. For example, deciding which life-sustaining treatments you’d like to receive. Life-sustaining treatments may include things like being on a ventilator to help you breathe or getting a feeding tube to help you get nutrition.

Medical planning usually also involves designating a loved one to make medical decisions on your behalf, if you’re not able to speak for yourself.

For this type of planning, you may want to talk with your doctor or care team to understand the types of care you might receive in different situations.

Depending on how your lupus is progressing and which organs are impacted, you may know that you might need certain treatments in the future. For example, if lupus affects your kidneys, there’s a chance your kidneys may stop working on their own. If that happens, you’d need a treatment like kidney dialysis. Your doctor can help you understand what future treatments might be needed in your specific case.

Legacy planning

Legacy planning means thinking about what you’d like to happen to your body when you die, and whether or how you’d like your loved ones to celebrate your life. It can involve deciding:

Whether you’d like to donate your organs
What you’d like to happen to your remains — for example, being buried or cremated
If you’d like to have a funeral service or other celebration of life and what type, such as a religious ceremony
Whether you’d like to donate your body to science or medical research.

Legal documents for end-of-life planning

Once you’ve determined what you’d like to happen at the end of your life, the next step is to work with an attorney to write down your decisions. This is very important because having your wishes legally documented helps to ensure they’ll be followed.

Your attorney will create a number of legal documents to capture your wishes. Documents for end-of-life planning can include:

Last will and testament — These say who will inherit your belongings and property when you die. This is also where you’d document who should be the guardian of your minor-age children if you die or are too sick to care for them.
Living trust — This puts your assets, like your money and property, into a trust that you and a loved one can both control. This makes it easier for your loved one to inherit or manage your estate when you die, without having to go to court.
Advanced directive (living will) — This details what kind of medical care you want to receive if you’re too sick to speak for yourself. For example, it might say that a person is okay with having a feeding tube but doesn’t want to be on a ventilator.
Power of attorney — This gives a loved one the legal authority to make decisions about your medical care, property, or money if you’re not able to make them yourself. Keep in mind that there are different types of POA: a general or durable POA allows someone to handle your finances and legal affairs, while a medical POA authorizes someone to make healthcare decisions for you.
Domestic partnership agreement — If you have a partner that you’re not legally married to, you can use this document to give them certain legal rights and responsibilities, similar to a marriage agreement.

Depending on which state you live in, you may also wish to complete a POLST (Physician Orders for Life-Sustaining Treatment) form. This is a medical form that clearly lists which treatments you do or don’t want if you’re very ill. Unlike some of the other forms involved in end-of-life planning, you don’t need to work with an attorney to set up a POLST. Instead, your doctor reviews and signs the form for you.

It's important to know that you need to have your POLST form with you for it to be honored. The doctor who signed your POLST form will generally keep a copy in your medical record at that office or hospital. But it’s a good idea to bring your copy with you if go to a different doctor or hospital or go to the emergency room. At home, store it in a place where you or a loved one can easily get it — like on your refrigerator — and make sure to tell your loved one where to find it.

Keep in mind that POLST programs vary from state to state — ask your doctor to learn about POLST forms used in your state, or use this directory to look up your state.

How do I get started with end-of-life planning?

End-of-life planning starts by thinking about what you want. And remember, it’s never too late or too early to start! Then, once you’ve decided what your wishes are, work with an attorney to make sure everything’s properly documented.

When it comes to understanding all of your options, remember that doctors and attorneys can be partners in helping you make sense of everything and make informed decisions that align with your values and priorities.

There’s a lot to do when it comes to end-of-life planning — and it can be complex. It’s okay to work in small steps and to take breaks. You don’t have to do it all at once.

It’s also important to know that you can make changes to your end-of-life plans if your wishes change. And it’s a good idea to review your plans from time to time to make sure they still fit your current situation. As an example, you may want to make changes to your documents when your children become legal adults, if you have new property, or if there are other major changes to your financial situation or health. Your attorney can help you make changes to your plans.

When you’re ready, talk with your loved ones about your end-of-life plans. You don’t have to share the exact details with them if you’re not comfortable — but be sure to tell someone you trust where they can find copies of your legal documents if you get very ill or die. Think through everything a loved one might need to take care of your affairs after you die — like accounts they might need to access. Then come up with a plan to help them get that information when the time is right.