When your loved one is in a disorder of consciousness, they can't make decisions for themselves ... even while many decisions may need to be made regarding health care, finances, employment, and more. This can be overwhelming for families and caregivers. Below are some resources that may help you to understand what your options are.
How can I be authorized to make decisions for my loved one?
There are a number of ways to gain legal authority to make decisions for your loved one. Try to find out if your loved one signed any of these documents below before they entered DoC.
Advance Directives
Your loved one may have an advance directive, a document in which a person records what their wishes are for making health care decisions if they become unable to make those decisions on their own ... and who they want to make those decisions. If you don't know whether or not your loved one has an advance directive, it's possible it is available in their health care record. You can learn more on this webpage below:
Advance Directives: A Family Caregiver's Guide
From UHF Next Step in Care
Health Care Proxy
A health care proxy is a legal document in which your loved one appoints a person to make healthcare decisions for them if they are unable to make them themselves. You can learn more on this webpage below:
Health Care Proxies
From Medicare Interactive
Durable Power of Attorney
A durable power of attorney (POA) is a legal document that designates a person selected by your loved one to make both health care and financial decisions if they are not able. It is a legal document that had to be completed prior to your loved one's inability to make decisions. This website below gives you more information on what a POA is and how it may help you.
What Is a Power of Attorney (POA)?
From AARP
What if my loved one does not have any of the above documents?
Obtaining Legal Guardianship
Many times, your loved one may not have any legal documents in place, and you will need to obtain guardianship in order to deal with finances and health care decisions. A legal guardian is a person who can be appointed by a court to make these decisions. There are ways to get emergency, temporary, or permanent guardianship. Initially, you may want to look at emergency or temporary guardianship, as it lasts for only 90 days, depending on your state laws ... and then adjust as needed. Learn more with the resources below:
Temporary Guardianship | What It Is, Why It's Needed & More
From Superior Notary Services
Understanding Adult Guardianship
From Caring.com
What if I do not want to be my loved one’s guardian?
There are times when taking on guardianship might not be possible for you. Please see the resource below to learn about alternatives for support.
Public Guardianship Office (PGO)
From Georgia Department of Human Services Division of Aging Services
Is there anyone who can guide me through all the legal issues and documents?
Elder law attorneys specialize in aging and disability law and the legal matters that can be associated with guardianship and other support services. Below is a website that lists names of elder law attorneys in different states:
Find a Lawyer - Basic Search
From the National Academy of Elder Law Attorneys, Inc. (NAELA)
Doctors are talking about decisions that I need to make about “DNR (do not resuscitate)” and “withdrawal of care.” What does all this mean?
Sometimes a person's injury is so severe that your doctor may start asking you questions about what your loved one’s wishes were regarding how they want to live. You may hear words like “DNR (do not resuscitate),” “withdrawal or withholding care,” or “brain dead.”
It is important to understand and think deeply about directives like a DNR order before making any decisions. Since making these decisions can be extremely difficult — especially since it is not often clear if your loved one will recover — you may want to review the section called Will my loved one regain consciousness? to help you better understand the possible outcomes for people with DoC.
DNR (Do Not Resuscitate)
A DNR order means that a person has decided not to have cardiopulmonary resuscitation (CPR) attempted on them if their heart or breathing stops. Sometimes a family decides this for their loved one. DNR orders are written by a physician after a discussion with you as a family member about the severity of your loved one’s medical condition and what the wishes of your loved one would be if they stopped breathing. DNR orders guide your healthcare providers during an emergency when there is typically no time to discuss what to do.
Withdrawal of Care or Withholding Care
Healthcare personnel uses these terms to refer to the discontinuation of life-prolonging treatments such as a ventilator, dialysis, vasopressor medications, extracorporeal bypass, artificial nutrition, and others. You'll discuss this option with your loved one's doctor when death may be inevitable or your loved one is terminal despite continued treatment. How this is determined may vary from state to state.
Below are resources with a more detailed description of DNR and withdrawal of treatment:
End of Life: Options for Care and Choice (PDF)
From Compassion and Choices
What Is a DNR Order? and What Is Life-Sustaining Treatment? (PDF)
From Shepherd Center
If we choose to withdraw or withhold care, what are options for care?
Hospice Care or Palliative Care Programs
You may hear about these types of care from your doctors as options for your loved one, and your social worker or case manager can help you to better understand these options. Sometimes representatives from the palliative or hospice care departments can visit you to provide more details and guidance. You will not have to do this on your own. Palliative or hospice care can be provided in the hospital, in a specialized program, or at home. A team of clinicians provides this care, offering medical, psychological, and spiritual support. Here are some resources to help you better understand your options.
Types of Care: Palliative, Comfort, Hospice, Bereavement
From CaringInfo
Understand the differences between palliative and hospice care.
End of Life: Options for Care and Choice
From Compassion and Choices
Understand what kind of treatment options are available.
What Is Bereavement Care and How to Find Services
From CaringInfo
Losing a loved one is very hard, and there can be support for you as well.
Hospice Foundation of America
(800) 854-3402
Call this number to talk with someone about hospice care.
What does "brain dead" mean?
Brain death is a clinical and legal definition of death and is defined as the irreversible cessation of all brain activity. Although brain dead, a person’s heart may still be beating, their chest may still rise and fall from the ventilator, and their skin may still be warm. While thinking of these descriptions and directives, you may want to look at What Assessment Tools Will Be Used to Determine My Loved One’s Level of Consciousness? in the Overview of Disorders of Consciousness - Body and Mind.
These articles from Verywell Health have more information: