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Advance Medical Directives and Multiple Sclerosis

Posted on March 18, 2021
Medically reviewed by
Amit M. Shelat, D.O.
Article written by
Joan Grossman

As people with multiple sclerosis (MS) age, they may reach a point where they are no longer able to make their own decisions regarding health care. Some people with MS thus create advance medical directives, legal documents that ensure future care and end-of-life decisions will be conducted according to their wishes.

Advance health care directives can help family members, friends, or caregivers avoid conflict among each other, or with health care providers, when care decisions need to be made under difficult circumstances. Advance care planning can provide specific instructions as to what you want or need to happen when a worsening condition, health care crisis, or life-threatening event limits your own decision-making capability.

More than half of people with MS develop cognitive decline that may impair their decision-making abilities at later stages of the disease. Advance medical directives allow you to make decisions about your own health care while you are of sound mind.

The Benefits of Advance Care Planning with MS

MS is a condition with an unpredictable progression. By planning ahead for difficult decisions regarding care, people with MS can prepare for uncertainties ahead. Advance care planning has been shown to improve outcomes for people with advanced disease at the end of life.

Studies have shown that people with MS are often keen on taking an active role in their health care decision-making. Advance care planning may be easier for people with MS because they have a clearer and more realistic understanding of their condition. Planning for difficult health decisions can help ease the concerns of family members, prevent confusion about decision-making, and help manage future care in a conscientious way.

Types of Advance Medical Directives

Advance medical directives are used by people with all kinds of health conditions, including MS. Even people without known health problems often prepare advance medical directives in order to plan for unexpected health crises and end-of-life medical care decisions.

There are two types of advance medical directives: a living will and a health care proxy.

Living Will

The idea of a living will was first proposed in 1969 by Luis Kutner, a human-rights lawyer who was nominated numerous times for the Nobel Peace Prize. Kutner was concerned that end-of-life medical decisions were influenced too much by technology that could keep someone alive, regardless of a person's own wishes or quality of life.

Living wills were designed to allow people to make conscientious decisions about their future care, taking into account personal values such as dignity, control, and comfort. When creating a living will, people also often consider their living situations and their concerns about becoming a burden to others. These are complex issues that should be discussed in depth with your doctors, family, caregivers, religious leaders, or legal advisers.

A living will spells out in writing the type of care you do — and do not — want, should you be unable to make your own decisions. Living wills are legally enforceable documents that state if, when, or for how long you would want specific treatments, such as:

  • CPR — Administered manually or with a device to restart the heart if it stops beating; some people choose a do-not-resuscitate (or DNR) order in the late stages of disease or life
  • Feeding tube — Administers nutrition intravenously (through a tube) that is surgically inserted into the stomach
  • Mechanical ventilator — Assists a person’s breathing with a tube inserted down the throat or through a tracheotomy incision in the neck
  • Palliative care or hospice care — An approach for managing pain and providing comfort at the end of life, without using treatments to prolong life

Organ or tissue donations also can be designated in a living will. Other considerations include where you would like to receive treatment and your wishes concerning aging in place and nursing home care facilities.

Before preparing a living will, take time to talk to your doctors to better understand the benefits and risks of these treatments and others that might be of concern.

Health Care Proxy

Sometimes called a power of attorney for health care or a health care agent, a health care proxy is someone you appoint to make medical decisions for you when you’re not able. Legally, you can only have one health care proxy, but you can have an alternate proxy designated in case your health care proxy becomes unavailable.

A health care proxy can be a spouse, an adult child, or a friend. Some people may choose not to have a health care proxy if they are confident their caregivers are closely aligned with their health care choices. Your health care proxy should also have a copy of your living will and be familiar with the decisions you have made about your care.

Not every health care decision can be made ahead of time. Your health care proxy should be someone you trust, who you have talked to about your future care, and who shares your perspectives and values about how you would like to be treated.

How To Make an Advance Medical Directive

Creating the legal documents for an advance medical directive is not complicated. You do not need a lawyer to create a living will or to designate a health care proxy. However, you might want to seek legal advice if you have questions.

There are many templates for advance directive forms available for free online, some of which are tailored for the particular requirements of states. Some states require specific types of witnesses to sign a living will. Some states require the document to be notarized by a notary public. Some require both. If you have moved to another state since preparing your advance medical directive, you may want to revise it so that it conforms to the rules of the state you are currently living in.

An advance medical directive can be changed at any time, and it is important to review your directive periodically to be sure it still reflects your wishes for future care. For instance, you might change your mind about medical treatments you want, or don’t want, in your living will. Or you might want to change your health care proxy for any number of reasons, particularly if your proxy is having health problems of their own or is no longer available.

Challenges in Creating an Advance Directive

Advance medical directives raise difficult questions. It can be hard to consider health care decisions under circumstances in which you would be incapacitated or possibly at the end of life. The Mayo Clinic has a free publication that includes a worksheet and questionnaire to help you determine your goals, values, and preferences, and what kind of health care decisions you would want to be made on your behalf.

You may want to schedule several conversations to discuss these sensitive topics with your health care providers, spiritual or legal advisers, or people close to you. Family members and friends may have emotional reactions. Take time to listen to them and understand their feelings. Find a way to carefully communicate your wishes for care and why you have made those decisions.

Sharing your fears, feelings, and choices with doctors, family, friends, or spiritual mentors can be challenging. At the same time, clarifying your choices can give you and your loved ones a sense of security in planning ahead to meet your future health care wishes as much as possible.

Talk With Others Who Understand

MyMSTeam is the social network for people with multiple sclerosis and their loved ones. On MyMSTeam, more than 164,000 members come together to ask questions, give advice, and share their stories with others who understand life with MS.

Are you living with MS? Have you had expereince creating an advance medical directive? Share your experience in the comments below, or start a conversation by posting on MyMSTeam.

All updates must be accompanied by text or a picture.
Amit M. Shelat, D.O. is a fellow of the American Academy of Neurology and the American College of Physicians. Review provided by VeriMed Healthcare Network. Learn more about him here.
Joan Grossman is a freelance writer, filmmaker, and consultant based in Brooklyn, NY. Learn more about her here.

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