Rethinking (Patient Centered) End of Life Care
By Jody Yaeger, RN, BS, CCM
“Houston, we have a problem.” If you’ve never heard that before, look it up. It’s a popular phrase and refers to the Apollo 13 space mission.
“Healthcare, we have a problem.” It involves:
- The majority of people say they’d prefer to die at home yet most die in a facility.
- The biggest part of healthcare costs occurs during the last 2 months of life. In 2008 Medicare paid $50 billion for doctor and hospital bills for care in the last 2 months of life.
Technology has done wonders for the medical world, enabling providers to sustain life in ways that were not imaginable 50 years ago. However, when there’s no hope of a reasonable recovery, why is every life sustaining option implemented in spite of what the patient may want?
We now have generations of providers that have never experienced a natural death at home. Their only training and frame of reference involves death while the patient is in a hospital or facility. With the ever-growing focus on improving outcomes, the topic of end of life care is made even more difficult. Death, it seems, is often seen as the worst possible outcome.
In today’s healthcare, there’s Patient Centered Goals, Patient Centered Care Plans, Patient Centered Medical Homes. But we do not hear much about Patient Centered End of Life Care, or Patient Centered Death. The key term here being “Patient Centered.” A hot topic in every aspect of our lives is personal choice, free will, individual preference, take your pick. Why not at end of life? Why is it so difficult to implement what the patient wants?
Those of us who work with people at the end of life know the answer to these questions. It’s Advance Care Planning. It’s a discussion with the patient about “What matters to you?” not “What’s the matter with you?” Through this conversation, we give a person the opportunity to first think about what it is that they will want and then second the ability to convey that to their family, friends, and providers in a clear way.
These discussions take place with the patient and their family, loved ones, or significant others. It’s all about making sure that the patient’s wishes are known, honored and followed. This process not only honors the person’s wishes, but also has the added benefit of easing or preventing the emotional turmoil that loved ones experience when they are left deciding how to provide end of life care.
A provider or healthcare professional explaining and encouraging Advance Care Planning goes a long way toward getting this conversation normalized, improving the patient/provider relationship, and making sure there’s an improved quality of life outcome. In fact, recognizing the central role a healthcare professional can play in this discussion, Medicare reimburses for voluntary Advance Care Planning.
There are different types of Advance Care Planning documents that can be used to make a person’s end of life wishes known. Each has different requirements and can be used for different things. For example, a living will is a document that is used to tell health care providers what the person’s wishes are. A durable power of attorney for health care is a legal document that appoints a proxy – or someone to make medical decisions at a time when the person is not able to. There are other Advance Care Planning documents depending on the circumstances and state the person lives in.
While it is important for many reasons for a person to discuss their wishes with their healthcare provider and loved ones, having the conversation is not always enough. However, completing the right Advance Care Planning document is often not done.
Here’s an example: A man talks with his father who says “as long as I can watch and enjoy football on TV and eat ice cream, keep me alive. When I can’t enjoy those 2 things, I’m ready to go.” If only it could be that easy.
While these can be difficult discussions to have, certain approaches can steer the conversation toward a positive outcome. These include:
- Acknowledge the difficult and sensitive nature of the topic
- Emphasize the independence of the person involved
- Emphasize that collaboration is desired between all parties.
- Acknowledge the desire for as good and positive an outcome as possible.
Involved family members should know that to have a positive experience everyone should respect the patient’s choices. When the patient’s wishes are acknowledged and confirmed, the person’s importance is validated to everyone present.
Whether we’re in the role of medical professional or a loved one, we have an opportunity to help make the process of dying truly Patient Centered.
The Apollo 13 mission was a near fatal catastrophe, but hardships experienced by the suffering of a few ended up providing valuable guidance for future missions. Let’s learn from previous suffering and improve end of life outcomes.