Everyone has the right to make personal decisions about healthcare. Your doctor helps you to understand the risks and benefits of a treatment so you can decide what is best for you. But what if you can no longer make your own decisions because of illness or incapacity? An Advance Directive speaks for you if you are unable to and helps make sure your preferences will be honored. It is a legal document for an adult to plan for future healthcare needs. While not required, it is highly recommended, and can make things easier for your loved ones by helping to prevent misunderstandings or arguments about your healthcare.
An Advance Directive allows you to decide who you want to make healthcare decisions for you if you are unable to do so yourself. You can specify what kinds of treatments you do or do not want, especially the treatments often used in a medical emergency or near the end of life.
The person you name to make decisions about your healthcare is called a "Health Care Agent" (HCA). Your HCA is responsible for directing your healthcare in accordance with your wishes. Being a HCA does not mean the person is responsible for your medical expenses; only for authorizing your medical treatments.
What about my adult family-member with a developmental disability?
Studies by the U.S. Surgeon General revealed two issues that are relevent to you: a) people with developmental disabilities have more complex medical conditions than the general population, yet are more often poorly diagnosed and over or under-treated when it comes to healthcare; and b) being involved in their healthcare decisions, to the extent they are able, often leads to better care.
If you have already been involved in your family-members healthcare, you know that doctors will often ask you to make the decisions regarding treatment. So what can you do to promote better care through increased involvement by your family-member? We recommend the following:
Learn about what is involved in making your own advance directive for healthcare decisions, including appointment of a Health Care Agent. You can do this by visiting the Maryland Attoney General's Office website. We have also included some additional information here that may be helpful to you.
Consider arranging for your family-member to participate in the "My Health - My Decision" training program. If you are not sure this program is right for him/her, contact any of the people on the "Contact Us" page for more information.
Talk with your family member's physicians. Make a list of questions or concerns, and discuss them so that everyone has a good understanding of what the expectations are for your family member's healthcare services. Be sure to talk about your level of involvement, and what will happen should you not be available.