Making health care decisions for someone who is dying or is not able to make decisions on their own can be a very daunting task. It is especially difficult if there are no written or verbal instructions. Deciding on the type of care someone would want to receive can prove to be a stressful and emotional task, even if you do have some written guidance, some things may not be covered or clearly explained.
There are a couple of different ways to approach this. First, you can try to put yourself in the dying person’s shoes and make your decisions from that frame of reference. That is what is known as substituted judgment. Remembering how your loved one felt about other people around them who have gone through difficult end of life decisions can be very helpful. Many experts believe that using substituted judgment is the most preferred method for making these decisions.
Another decision making method is called Best Interests. This approach takes into account things like suffering and quality of life. All of the “end of life care” decisions are very hard on the decision maker because of the internal emotional tug of war. You want to have more time with your loved one but you have to not let that influence your decisions. It is also very hard when you have differing opinions from other family members to deal with.
Below are some questions to consider when making decisions based on the two methods mentioned earlier.
- Has the person who is dying ever mentioned any end of life wishes or preferences?
- Have they ever voiced an opinion about how someone else’s situation was handled?
- What were their life values and the most important things in their life.
End of life decision makers need as much information from the doctors as possible. You might questions like these:
- What should we expect to happen in the next few hours, days, or weeks?
- What is this new test for and do we need it?
- Will there be changes to the current treatment plan?
- Will this new treatment help him or her to get better?
- Would this new treatment change his or her quality of life and in what way?
- Can we expect more quality time with family and friends?
- How quickly will the new treatment begin to work?
- If we decide to try this treatment, could we stop it at anytime?
- Are there any side effects with the new treatment?
- If the new treatment doesn’t work, what then?
- If we decide not to go with this treatment, what happens then?
- Are the improvements we are seeing now a good sign or are they temporary?
When talking about these issues with members of a medical staff, it is a good idea to have someone with you. An additional set of ears can help you remember details that can be very useful during this emotional time, plus you can have them help you ask the right questions.. Don’t be afraid to keep asking questions until you are confident that you have all the information you need to make the right decisions. Make sure you all the contact information for members of the medical team should you have any questions.