Many patients in the ICU are unable to make their own medical decisions. In these situations, knowing if they have already communicated their wishes or written them down can be helpful in making decisions about the treatments your family may receive.
The medical team will want to review with you the overall goals of care and may ask you to make some decisions about treatment options. One of the most important decisions that may arise is whether to continue life-sustaining treatments or remove them to refocus the care plan towards either medical management or comfort measures only.
Who represents the patient if they can’t speak for themselves?
Making decisions for someone else can be a difficult and stressful time. A person who makes decisions on behalf of a family member is called a substitute or surrogate decision maker (SDM). If your family member has a legal document naming a person to make decisions for them, then this person is the substitute decision maker (SDM). If this was not determined in advance, the law provides a list of people who may act as the SDM arranged in order of legal priority: often a spouse, a parent of a child, an adult child of a parent, and so on. We are speaking to you as if you are the patient’s SDM. This is an opportunity for you to represent your loved one and help ensure they get the best care possible. We want to help you, the SDM, in making decisions related to your family member’s care plan. You may feel like you need more information to help you in this role.
What is your role as Substitute Decision Maker?
Your role as a Substitute Decision Maker is to help the ICU team make treatment decisions based on your family member’s previously expressed wishes, values and beliefs. If you do not know what your family member’s wishes are, you, the Substitute Decision Maker, should use your best judgement to make decisions based on how your family member would want to be treated if he or she could decide for him or herself. It is important to resist the natural tendency to make decisions based on how you would want to be treated if you were critically ill. We will ask you to share conversations you may have had with your family member before they became unable to speak for themselves.
What is the doctor’s role?
The doctor in the ICU is a trained expert in treating critically ill people and can provide you with an explanation of the medical problems, a sense of whether your loved one is headed towards recovery or decline, and the overall chances of survival. However, doctors are often uncertain about the chances of recovery or what condition patients will be in if they survive. Nevertheless, they will try to provide you with accurate and honest information about your family member’s chances of recovering and expected long-term quality of life. The doctor may discuss starting new treatments or stopping treatments, such as life support, if they believe they are unhelpful.
Do I have to make decisions alone?
People often find themselves overwhelmed with the thought of making a decision for a critically ill family member, particularly when there is so much uncertainty about what is the best decision. It is important to understand that you should never be asked to make a decision alone. Some people do not want to make decisions at all and prefer that the medical team makes the decisions while others prefer to be more involved. As the Substitute Decision Maker, you can also talk with other family members and friends to help with decision-making. In most circumstances, the family and the health care team will work together to make the best decision for the patient. Your main role is to represent the wishes, beliefs and values of the patient. The health care team’s main role is to provide you with information and explore the treatment options for your family member. As a team, you and the healthcare providers can make decisions that balance your family member’s wishes, beliefs and values with the treatment options available. These decisions form the foundation of the care plan moving forward.
Sometimes these discussions can occur in just one meeting, but often many meetings are needed to create a care plan. In the end, most people find this process to be a good experience, feel supported and are glad to be involved in the decision-making process. The healthcare staff will support you so that you can be involved at a level that is comfortable for you.