nmo caregiver holding documents

Three Legal Documents Caregivers Need

As a caregiver, you may be in charge of a partner, parent, or grandparent who lives with NMO. Some may experience drastic life changes when living with NMO, such as limited mobility, vision, and other complications. With this in mind, every family should have some basic legal documents that allow them to satisfy the wishes of a loved one who may be unable to act for themselves.

We often think of getting affairs in order as part of end-of-life planning. However, being prepared with these legal documents, before they are needed, may make future challenges a little easier. In fact, people should have these documents regardless of age or chronic health condition. Key documents include a HIPAA authorization, power of attorney, and an advanced healthcare directive.1

HIPAA authorization

HIPAA stands for the Health Information Portability and Accountability Act. HIPAA was created by the federal government to establish legal standards for protecting a person’s health information and keeping medical records private. A fully executed HIPAA authorization provides consent for doctors and other medical professionals to discuss a patient’s condition or plan of care with people listed on the form. This authorization enables sharing of medical information but not decision-making.1

Power of attorney

The term “power of attorney” generally provides for someone to make legal decisions on another person’s behalf when they are no longer able to do so. It may also be part of an estate planning process.

A medical power of attorney or durable power of attorney for health care are other terms to describe a health care proxy. A health care proxy is someone who is a trusted agent who may make medical decisions on a patient’s behalf if they are no longer able to make decisions for themselves.

There is also a durable power of attorney for finances. This designates someone who has authority over financial matters.2

It also authorizes a trusted friend or family member to work with the bank to manage assets on a patient's behalf. A new legal area has created a digital power of attorney which covers designating someone to manage digital assets including e-mail, photos, social media accounts, and other online services.3

Any power of attorney documents must be prepared and executed while the person is mentally competent to do so.

Advanced health care directive

Also known as a living will, an advanced health care directive allows a person to establish their wishes for end-of-life care or life support.3 This document also must be prepared while a person is competent and able to make their choices known. It generally addresses the subjects of resuscitation if the heart stops, artificial life support such as breathing on a ventilator and providing nutrition through a feeding tube. These are instructions for doctors and the health care team to follow, whether or not there is a designated health care proxy.4

Form preparation

The documents discussed here are legal documents and should be prepared by a lawyer. You may already have a trusted family attorney. Specialists in eldercare, or a trusts and estates lawyer, can also help families navigate these emotional decisions.

Online services exist but it is important to get advice from someone expert in your state's regulations. Most healthcare directives will be valid wherever you seek care, so if you are traveling or spend the summer or winter in another state, your wishes should be followed. That said, not all states have the same rules so check with an attorney to make sure your intent is clear and followed.4

Storing legal forms

  • Know where your documents are kept.
  • Make sure the copies you have meet current legal requirements.
  • Discuss your wishes periodically, and update forms if circumstances change.
  • Discuss other end-of-life matters like a will, funeral and burial wishes in advance.3

At the time that families need these documents someone is often ill or dying. Emotions can be high and family members may not always agree. An attorney can help advise you on how to select appropriate representatives. Having too many people legally responsible to share decision-making can result in family discord while interfering with the administration of the patient’s wishes.

Should someone be incapable of making their own medical decisions in the absence of a durable power of attorney, their relatives would have to go to court. They would need to petition for a conservatorship or guardianship to gain the right to become medical and financial decision-makers. That process could take time, and be a distraction for a family when it is most vulnerable.1,2,4

Have you had experience with preparing legal documents for caregivers?

By providing your email address, you are agreeing to our privacy policy.


Join the conversation

or create an account to comment.

Community Poll

How often do you experience public spaces not being ADA compliant?