Advance care conversations 101: 5 things to remember

There are some conversations that almost no one looks forward to. That’s why there are so many “how to” guides for talking about money with your partner and similarly sticky issues.

Advanced care planning conversations can be even more challenging. No one likes to talk about a time when things are expected to get worse, yet doing so is critically important to making the process as honest and meaningful as possible, and the process can be gratifying and give peace of mind.

Here are 5 things to remember as you have these conversations:

  1. Having the conversation is itself an accomplishment.

You should pat yourself on the back just for getting started. There is no need to reach concrete answers right away. Just by having this conversation, you are taking on a challenge that will help you have peace of mind. It’s O.K. if you have not yet had time to formulate your thoughts. More than 2/3 of Americans do not have an advance directive, but most of us have instincts about what we would want. This conversation is built upon your fundamental beliefs and range of experiences. As Seneca (so bluntly but wisely) said, “Learning how to live takes a whole life, and, which may surprise you more, it takes a whole life to learn how to die.”

 

  1. There is no perfect time.

You might wonder, is now the right time? Or will talking about it only make things worse? As Ellen Goodman, co-founder of the Conversation Project, recently wrote, “the primary reason people gave for not talking to their loved ones was ‘It’s too soon.’ But it’s always too soon … until it’s too late.” Often times these conversations start when a person is hospitalized. Start from a place of worry: “I’m worried that if something like this were to happen again, I wouldn’t know what you would want.” However, any time you want to learn about a person’s wishes is a legitimate time, even if they are not suffering from an illness. In fact, this allows you more time and space to prepare.

  1. Embrace differences and be concrete.

People can have radically different ideas of what they would want—ranging from how much medical information they want to know, to what kind of treatments are acceptable, and what is necessary for life to be worth living. Your spouse, children, or healthcare proxy might be surprised by what you say. Some people talk with their doctor first because they expect disagreement in their family. If you are asking someone to help make decisions for you, it’s important to make no assumptions and to speak in specifics rather than vague generalizations.

 

  1. You don’t have to reinvent the wheel.

It’s easy to feel bewildered by the scope of advance care planning, but there are a lot of options to support you on this. Besides the cards on CAKE, two great online resources are the Conversation Project and PREPARE. The Conversation Project is a grassroots initiative that provides a starter kit for advance care planning conversations and asks you to place yourself along various scales – for example, how much information you would want to know from your doctor. PREPARE is a comprehensive, culturally inclusive step-by-step online tool with helpful video examples and different scenarios that guides you through how to have these conversations. It’s freely available in English and Spanish. Not into videos? Begin The Conversation, created by a North Carolina hospice, has a workbook that allows you to write down responses to hypothetical scenarios.

 

  1. When you’re ready – translate conversation into action.

When you feel like you have a sense of what you want—even if it’s the decision that you need more time—think about documenting these conversations. You can write down your wishes, or use your CAKE profile as a starting point.  MyProxie can help you generate a legal document for naming a healthcare proxy, someone to make medical decisions for you if you are unable to. Tell your doctor, and make sure they’re listening—in one study, over 65% of doctors did not know about an advance directive even when a patient had one! Many states, like Massachusetts, also have forms (called MOLST or POLST, for Medical or Physician Orders for Life-Sustaining Treatment) to fill out with your doctor describing treatments you would or would not want. These actions will help make sure that other people and the healthcare system know about the wishes that you thought so deeply about. These are living documents and should be updated if your wishes changes.

Dr. Lulu Tsao, Brigham and Women’s Hospital

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