Have you ever had a hard time making a decision? Most of us can agree that decision-making can be difficult –even simple, everyday decisions like deciding what to eat for lunch! But what about making medical decisions? What feelings come up when thinking about making decisions about medical care? We often feel uncertain, overwhelmed, or even avoidant. These feelings are valid. Understanding and “owning” our feelings can help us move forward in feeling more comfortable starting a conversation about medical decision making.
What is medical decision making?
Before we discuss why medical decision making is important and who should start the conversation about it, let’s define the term. Broadly, medical decision making is making any kind of decision about our medical care. This broad definition could even include making the simple decision to visit our doctor (or not) when we feel sick.
In this article, we will talk about medical decisions more specifically. Here, we are talking about making healthcare decisions about the type of care we would like to receive:
- In the wake of a medical emergency
- Near the end of life, or
- At any time we are unable to make medical decisions on our own
This is also referred to as advance care planning (National Institute on Aging).
Why is medical decision making important?
As a medical system, we have moved further away from the doctor-knows-best mentality and towards a shared-decision making approach. This means that, as patients, we have more of a “say” about our medical care and about making medical decisions for the future. This is good news, because it gives us more ownership over our health!
We can’t predict the future of our health, but we can plan for it by making decisions about our healthcare prior to an emergency. Advance care planning ensures that our healthcare wishes are known even if we are unable to communicate our preferences.
Who should start the conversation about medical decision making?
Short answer: Everyone! Medical decision making is not just a conversation for older adults –it is relevant to all of us, regardless of our current medical status. We may be very healthy today, but it is important to be prepared for unexpected changes in our health.
Where do I start?
There is a lot that goes into medical decision making for the future. Think about it as a process rather than an item to check off a to-do list in a couple of hours. The important first step in the process is to start a conversation with a close family member of friend. Many of us may also find it helpful to discuss advance care planning with our pastor, priest, or other faith leader. The Conversation Project – a group “dedicated to helping people talk about their wishes for end-of-life care” – has a great resource, the Conversation Starter Kit, to help.
Here are some practical steps to take today:
- Write down questions you have about advance care planning and discuss them with a medical provider
- Identify a person to communicate your healthcare preferences (known as a health care proxy or durable power of attorney)
- Talk with your health care proxy about your future healthcare wishes
- Put your wishes in writing by completing a living will –a legal document that identifies your health care proxy and outlines your healthcare wishes
- Distribute documents to health care proxy and anywhere you receive medical care
- Place document where emergency professionals can easily find them such as on your refrigerator or in your wallet (see Advance Directive Wallet Card in the National Institute on Aging)
- Review documents annually to make necessary changes
Paul Kalanithi’s Story
Neurosurgeon Paul Kalanithi was 36 years old when he was diagnosed with stage IV lung cancer. He was a nonsmoker and lived an active lifestyle –stage IV lung cancer was certainly an unexpected diagnosis. He did undergo chemotherapy and his health improved for a period. During this time, he and his wife had a baby girl, but shortly after her birth, Kalanithi’s health declined. When other therapies stopped working he decided to transition to experimental therapy, but his health declined very rapidly in between treatments. Kalanithi elected not to receive a breathing tube and passed away within nine hours. He wrote about his unique experience as a doctor and patient in his powerful memoir, When Breath Becomes Air.
Kalanithi’s story, though weighty, shows us the importance of medical decision making and advance care planning. The point is not that Kalanithi elected not to receive the breathing tube (some of us may have elected to receive a breathing tube in the same situation), but that his healthcare wishes were known beforehand and honored at the end of his life. Having conversations with loved-ones and preparing necessary documents allows us to receive care that is in line with our beliefs and values.