What kinds of medical interventions would you want?
What does quality of life mean to you?
Would you want a feeding tube? A breathing tube?
Would you want to have your heart restarted if you had a terminal diagnosis?
The Alabama Transportable Orders for Patient Preferences (TOPP) is a new document we hope to introduce to improve Alabama’s Advance Care Planning forms. Currently if you have orders not to be revived in the hospital, those orders are no longer valid when you leave. That means your wishes won’t be honored unless you create new forms at home or in a nursing facility. TOPP is about respecting life and honoring your wishes, while establishing clear goals for what kind of medical care you would want or not want.
It’s about the deeply personal decisions that often must be made when disease or age gets the best of us and we approach the end of this life. It’s about decisions that should be made based on honest conversations with loved ones and health professionals, personal preferences, and religious beliefs. TOPP focuses on setting goals for how people choose to spend their end-of-life. Too often our highly technical medical society focuses almost exclusively on procedures that can be used to “fix” a problem without looking at the bigger picture– how these procedures can be at odds with how most people want to die.
The focus for setting goals means finding out how each person and their family define quality of life. Most people say they would like to die at home, with excellent pain control and symptom management, surrounded by family, friends and the things they love. When that goal becomes clear, TOPP can help ensure this goal is met by defining which procedures support and do not support the desired quality of life. The options range from full treatment, to some interventions, to comfort care only.
These are deeply personal decisions that individuals should be allowed to make based on their preferences and religious beliefs. The underlying principle is to focus on goals, not interventions. Each patient and family has to teach the medical team what makes sense to them.
TOPP does not endorse physician assisted suicide and is not associated with the “right-to-die” movement.
What is TOPP?
TOPP is about ensuring that people near the end of their lives have an opportunity to express their preferences and can be confident their wishes will be respected.
It is about making sure that families aren’t put in the difficult position of guessing the wishes of a dying loved one.
Unlike an advance directive or living will, TOPP orders are primarily used only when a person is believed to be in the last year of life.
These are not people who are making theoretical choices about life-sustaining measures that may be needed at some point in the distant future. These are people who are approaching the end of life and deserve the chance to consider their options and to have their wishes honored.
The TOPP approach ensures that people have a chance to make these deeply personal decisions, to document their wishes and to be confident their wishes will be followed. It is totally voluntary, and people can change their minds at any time.
A number of states have established similar programs including Tennessee, Georgia, South Carolina and Louisiana.
In locations where similar programs exist, the dying experience has been more aligned with expressed and documented end of life wishes. One study, for instance, found that people who wanted comfort care only were far more likely to die at home than people who wanted some level of medical intervention.
As medical technology offers more and more options choices become more challenging. TOPP provides a tool that helps individuals, families, and healthcare providers open lines of communication that clearly establish goals and desires for care at the end of life’s journey.