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Living Wills and Leukemia

Posted on January 12, 2022
Medically reviewed by
Mark Levin, M.D.
Article written by
Emily Brown

A leukemia diagnosis can be a life-changing event that alters the way you think about your future. Having cancer can put life into perspective and bring up issues that you may not have previously thought about. Those issues might include how you want to be cared for if you can’t make choices for yourself — or if you become unable to speak otherwise indicate your wishes.

With a living will, you have a say in what happens to you medically if the time comes when you aren’t able to make those decisions yourself. A living will allows you to set instructions for how you want to be treated. And such wills are legally bound, should the need for yours arise.

What Is a Living Will?

A living will is a legal document in which you specify the type of medical care you want to receive if you are no longer able to make health care decisions. Your caregivers and care team rely on your living will to speak for you if a terminal illness prevents you from doing so, if you have lost the mental or physical capacity to do so, or if you are unconscious.

Spelled out in a living will are the treatment options you want — and those you don’t. It’s an instruction manual for end-of-life care, and it’s designed by you. For example, you can decide whether you would want to be put on a breathing machine, feeding tube, or dialysis machine if those are needed to keep you alive. You can also use the document to say whether you want your health care providers to administer CPR — or not.

State laws determine when a living will goes into effect, but some states won’t honor a living will made in another state. If your state allows living wills, it may be worth considering because, as uncomfortable as it might be to face the potential of losing your decision-making capacity, it guarantees that your wishes will be upheld.

Why Is a Living Will Important?

A living will is important in that it gives your health care providers and caregivers a legally enforceable set of instructions to follow if you are unable to give them yourself. This ensures that your wishes are respected when it comes to your end-of-life care.

A living will is very personal. It’s care planning that outlines your values and preferences. And it makes clear to your family, caregivers, and health care providers what your specific medical wishes are. If you don’t document and record your wishes with a living will, others making decisions for you must assume the type of treatment they think you would like. And those assumptions could significantly differ from what you want for yourself.

For example, a loving family member may want you to be given breathing and feeding tubes if those will keep you alive. (If roles were reversed, you might want the same for them.) But what if you don’t want life-prolonging treatments? A living will helps you communicate that.

Setting out clear expectations and wishes in a living will ensures you will get the treatment you want. It also relieves the burden of decision-making borne by whoever steps up to the plate if you aren’t able to call the shots.

What Makes a Living Will Different?

A living will is different from other forms of advance directives that establish your power of attorney and preferences for do not resuscitate (DNR) and do not intubate (DNI). While you can include your preferences about resuscitation and intubation in your living will, it’s still a good idea to establish your position on DNR/DNI each time you go to a new hospital. (You may go to different hospitals for different treatments.)

Unlike documents that establish your power of attorney (or proxy) — through which you appoint a person to make medical decisions for you if you are unable or not fit to do so — a living will keeps the power in your hands. Having a living will doesn’t mean that you don’t trust your loved ones to make medical decisions for you. It simply ensures that the decisions made are in line with what you want.

What Should You Include in a Living Will?

Writing a living will requires that you think about what you would want for yourself at the end of your life. Though its intent is to spell out instructions for medical care, it can also reflect your spiritual and emotional values. All living wills must be signed (by hand or by verbal consent if a person isn’t able to physically sign for themselves) in the presence of two people (witnesses) to be enforceable.

As you decide your end-of-life care preferences, there are a number of options to consider. And you need to determine how long you want some of these treatments to go on.

Some options include:

  • Palliative (or comfort) care plans — Outlines how your caregivers and health care team will manage any potential pain you may have and where you want to live (at home, in a care facility, or otherwise) while you undergo end-of-life care
  • Mechanical ventilation — Can keep you breathing if your lungs fail to function properly
  • Feeding tubes — Deliver nutrients and liquid into your body should you be unable to eat or drink
  • Dialysis — Performs the blood-filtering and fluid-maintenance jobs of your kidneys if they stop working
  • Resuscitation (i.e. CPR) — Attempt to get your heart beating again if it ceases to do so
  • Long-term and/or aggressive medication courses — To treat your condition and symptoms though you are at the end of life
  • Donor status — Determines if, upon death, you will donate your organs or tissue to be transplanted into another person
  • Research donation status — Determines if, upon death, you donate your body to be used for scientific research (e.g., cancer research)

What Does a Living Will Mean For You?

Each person’s leukemia journey is different, and with a living will, you don’t have to make all of your end-of-life medical decisions at once. And that is something significant to take off your plate when you live with leukemia. When you make your living will, you may also want to legalize your choice of proxy, designate how your bank accounts will be managed, and determine who will care for your children (if you have minors).

Ask your leukemia specialist to refer you to a social worker or lawyer to help organize such documents and designations while you’re in a sound state of mind. And know that living wills are not just important for people with cancer. They are for any adult who wants a say in their future care.

Talk With Others Who Understand

On MyLeukemiaTeam, the social network for people with leukemia and their loved ones, 9,800 members come together to ask questions, give advice, and share their stories with others who understand life with leukemia.

Are you living with leukemia? Have you thought about making a living will? Share your experience in the comments below, or start a conversation by posting on your Activities page.

Mark Levin, M.D. is a hematology and oncology specialist with over 37 years of experience in internal medicine. Review provided by VeriMed Healthcare Network. Learn more about him here.
Emily Brown is a freelance writer and editor, specializing in health communication and public health. Learn more about her here.

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