Everyone has a responsibility to make their own decisions about end of life preferences. The patient has the primary role in deciding what measures they want to be taken at the end of their lives; family members and spouses should have a secondary role. It is important for the patient to have the primary role because no one else is able to fully understand someone’s background or motives when it comes to tough decisions. Family and loved ones may have a preliminary knowledge of what is desired but without knowing why someone prefers a intubation to ventilation or vice versa it can be challenging to make the decision when it comes down to it.
Everyone should make the effort to educate themselves on the options available to them at the end of their life and on the options available to them on the journey there (living will, advanced directives, etc.). It is each person’s responsibility to know the preliminary differences between all of the documents and to research the situations where each may be used. Close family members or spouses may want to become involved in the decision making process but the level of involvement is something that each person has a right to decide.
While it is everyone’s responsibility to become fully informed of the decisions and options available for them at the end of life there are barriers that prevent full understanding: race, age, gender, region, culture and so on. Many things can hinder a patients understanding and some of the barriers may mean that the patient has never heard of certain terms. These are all things to take into consideration but I feel that once the topic has been broached it becomes the person’s responsibility to find out more on the topic. This research can come from multiple resources and are not just limited to web/book searches.
Can a patient ever know enough to make an informed decision? Yes. However, in our medical field it is unlikely that the patient is able to ask the right questions, to get the right information from their healthcare provider. It is a shame that healthcare procedures are not “cards on the table” sort of deals where the patient is able to examine every aspect and make their decisions. It falls on the patient’s shoulders to question and consider heavily the answers given to them. While the patient plays a huge role in making these judgments, healthcare professionals also need to be open to answering questions and making the answers accessible and clear to those they treat. Informed consent relies on the patient and the provider.