Advanced Decision Making – Brain Donation

Advance decision-making is a process in which you can proactively plan out your or your loved one’s wishes on end-of-life treatments and interventions, sometimes called an “advance directive.” Ideally, this should be planned or discussed before it becomes medically urgent. Advance directives provide a roadmap of how to carry out difficult tasks during a difficult situation. These directives can provide peace and comfort to those who have to act in the best interest of their loved ones. An advance directive is a legal document, which should be part of your estate planning. The difference between legal documents and living wishes both can be honored in a time of need.

Having an advance directive in place is especially important when caring for someone with special needs. Thinking ahead, proactively, about these difficult choices can help avoid stress when emotions and doubt threaten to drive decision-making. It’s normal to have many emotions including fear, doubt, and guilt during this process. It is important for caregivers to have a clear understanding of their loved one’s baseline behaviors and quality of life. If your loved one has physical and/or cognitive disabilities, it is incredibly helpful to your healthcare team if you make a plan that outlines the best ways to communicate with your loved one should they be admitted to a hospital.

Regardless if you are here to be proactive or if you found yourself in an acute situation here are some helpful guides to empower you through this process.

The Advance Decision Making Planning Sheet will guide you through complex questions, though it is geared more toward those who are in preparation mode. It’s important to understand that you are not alone during this. It feels wrong to accept the loss but there is a there’s also a great act of kindness in helping your loved one pass with dignity. Deciding to have these difficult conversations earlier might be hard but it is much harder to think clearly during a crisis. Having a plan in case of a serious illness is okay and will look different for each family. The younger your loved one is, it may be better to discuss only one or two topics at a time. As you process and navigate this phase remember all decisions including hospice and do-not-resuscitate (DNR) orders can be revoked at any time. Having a plan in place doesn’t mean you’re irreversibly committed to each decision – it is essentially a starting place that is meant to provide support, not stress – it can be adjusted appropriately according to your situation.

There are opportunities to plan for tissue donation to be used for research purposes. Individuals living anywhere in the United States who wish to donate whole brain tissue after death should contact MBTB at btbumab@som.umaryland.edu. 

The Acute Care Decision Making Sheet will help you navigate the very difficult questions that arise during these times. This sheet will help you understand your options with a very generalized approach. We hope going through this example will empower you and provide direction when planning your loved one’s care.

Thank you to the TSC Alliance for allowing us to adapt this article for this site.

Updated 4/3/2022