Life with MS

Considering Your End-of-Life Documents

By Kara Skorupa
You have multiple sclerosis. You are being treated by a neurologist. You are learning about your limitations. You are figuring out if you can still keep working. You are educating yourself about the disease. You are making real progress. And yet, there’s something you may have overlooked because, quite frankly, it is not pleasant to think about: What would happen to you if you were incapacitated? What will happen to your family when you die? How do you know that your wishes will be respected? Testamentary and nontestamentary documents provide these answers. The reality is that precisely because of your diagnosis, these documents are even more important. Planning now for these future events should be part of everyone’s MS journey.

First things first. What are testamentary and non-testamentary documents?


Testamentary documents refer to wills and trusts. Generally, a will (often called a “last will and testament”) is a legal document which explains a person’s final wishes regarding how assets are to be divided and among whom; every state has different rules as to what requirements must be met in order for a will to be valid, but all wills take effect upon the maker’s death. Trusts are similar to wills in structure, but trusts take effect immediately, and are not necessarily dependent upon the maker’s death. In a trust, a person takes legal title to a property for the benefit of another; the person who has legal title is called a “trustee” and the person for whose benefit the property is held is called a “beneficiary.” It is not unusual for an individual to have both a trust and a will; however because of very state-specific requirements, it is advisable to seek legal counsel prior to executing either.


Nontestamentary documents are often executed in conjunction with making a will and/or trust, but independently, they are incredibly important for those living with chronic illnesses. These types of documents require less formalities in their execution, and include a living will, durable power of attorney, healthcare surrogate, and anatomical donations. Every competent adult has the right to make decisions about their body and medical treatment; these advance directives are a great way to express what your wishes are, in the event of incapacitation.

A living will is precisely what the name implies – it is a document that outlines medical treatments you would or would not like to receive during your lifetime in the event of incapacitation, whether mentally or physically. For example, with a living will, you may direct that if you were in the end-stage of a terminal disease, you would want life-prolonging procedures be withheld or withdrawn when the application of such procedures would serve only to artificially prolong the process of dying. Most states require a living will be witnessed by two people, one of whom may not be a family member, but it is necessary to check the requirements of your particular jurisdiction.

Power of attorney

Another nontestamentary document that is useful, especially to those with disabilities, is a power of attorney. It is a bit more complicated because there are a different types: a specific/ limited power of attorney, a durable power of attorney, and a healthcare power of attorney. Notably, an individual can have all three types of power of attorney documents held by three different people or an individual can just choose one person for everything.

Typically, a limited or specific power of attorney grants a narrow right to stand in another’s shoes. For example, an individual can assign the right to file taxes to an accountant, and that accountant is only permitted to file that individual’s taxes, nothing more, while that individual is competent and alive. This type of power of attorney is restricted to the specifics of the grant of authority so that the person who holds the POA can only do one specific task or enumerated tasks. It may be revoked by the individual granting the power by incapacitation, death, or simply if the individual has a change of heart.

A durable power of attorney grants an individual the right to stand in another’s shoes in a wide range of situations, regardless of whether the grantor is incapacitated or not. Unless restricted in the governing document, a durable power of attorney allows the individual holding the POA to do everything the granting individual has the power to do – including buying real estate and managing a bank account. A properly executed durable power of attorney can be used in the case of a person who is having trouble balancing their checkbook or it can be used if an individual is in a coma and needs to sell their house. A durable power of attorney provides the widest grant of authority and is the most versatile.

While most jurisdictions will recognize a durable power of attorney as valid in a healthcare setting, others require a special document known as a healthcare power of attorney or healthcare surrogate designation in order for another to make medical decisions for you. Like a durable power of attorney, a healthcare power of attorney (or surrogate) can still make healthcare choices for you even if you are incapacitated.

Deciding to donate organs is a personal choice that should be shared freely with your healthcare providers and family. Uniform donor forms are accepted in all jurisdictions regardless of whether an individual makes an indication on a driver’s license, and even allow an individual to specify what organs are to be donated. For example, an individual can direct that their body be used in anatomical studies for medical students at a particular university. The donation of organs helps society as a whole, but it is necessary to discuss your wishes and even provide a completed copy of a donor form to your physicians and family so that there are no misunderstandings. Obviously, a donation is only made in the event of death, and you can change your mind before then.

´╗┐Discussing your wishes

With regard to advanced directives (nontestamentary documents), it is imperative to discuss what your wishes are, and who you have selected to carry them out. All of your treating physicians should have a copy of your living will as well as healthcare power of attorney. If your family holds religious beliefs that would not allow the donation of organs, it is wise to have a conversation with your family so that they are aware of your wishes. You may also want to give a copy of your durable power of attorney to your financial institutions so that there is no delay should you need it.

For testamentary documents, it is not necessary to share your wishes, but there are limited circumstances in which it is advisable. For example, if you were a single mother with young children who has MS, it would be wise to communicate with the person to whom you have assigned the care of your children in advance of your passing. Further, in the case of a trust, you may need to re-title property into the name of the trust and notify your mortgage company.

For MS patients in particular, taking steps to prepare both testamentary and nontestamentary documents will alleviate stress and concern as you will be secure in the knowledge that your wishes will be carried out. In addition to hiring an attorney who specializes in estate planning, there are other resources available to assist with the preparation of these important documents. Many organizations offer free advance directive forms, such as and Most jurisdictions offer free or reduced-fee will preparation services through legal aid or state bar associations.

Admittedly, thinking about one’s own incapacitation or death is not pleasant. We are necessarily forced to consider these matters sooner than many of our non-MS peers, but our awareness of our mortality will ultimately allow us to plan better and protect ourselves and our families.