Having the Conversations None of Us Want to Have

Conversations about end-of-life care and advance care planning are difficult in the best of circumstances. For those with ALS and their families, these conversations present their own challenges, and the challenges of these conversation are often unique. It can be hard to think about planning for the future while the present has so many complications of its own. It can also be upsetting to think about declining abilities and the inevitable outcome of the disease. But having these important conversations about the future at a time and place that you decide can provide piece of mind for everyone involved.

And while with many aspects of ALS there is no one-size-fits all solution that is right for every family, there are resources available. In addition to information from the ALS Association, the Conversation Project offers resources for starting the conversation, how to talk to your healthcare providers, and how and when to choose a health care proxy. To shine a light on the need to have these conversations and to highlight the resources available, they have designated April 16 as National Healthcare Decisions Day.

Healthcare Decision Planning Resources:

A good way to starting thinking about these conversations is to frame them as discussion about what is most important to you and how you define the quality of life you would like to see yourself having now and in the future. Some helpful ways to start the conversation might include:

  • “I need to think about the future. Will you help me?”
  • “I just answered some questions about how I want the end of my life to be. I want you to see my answers. And I’m wondering what your answers would be.”

Another important part of the conversation includes how you want to be cared for if you are unable to express your wishes. How you want these decisions handled are defined in legal documents called “Advance Directives.” They include:

  • Living Will: This outlines the type of medical care you want to receive. It gives specific instructions about treatment, such as the use of invasive ventilation and tube feedings.
  • Durable Power of Attorney for Health Care: This lets you appoint someone—such as a family member or friend—to make medical care decisions for you in case you are unable to.
  • Do Not Resuscitate (DNR) Order: This states that you do not want to be resuscitated if your breathing stops or you go into cardiac arrest. The DNR order must be signed by a doctor.

It is important to remember that the rules for advance directives can be different depending on the state. If you plan on spending time in more than one state, you may need to have advance directives for each. While advance directives can be written by you and your family, it may be helpful to consult with an attorney, depending on your circumstances.

After you’ve had “the conversation” you’ll probably have a mixture of feelings. Maybe you’ll feel relieved, or maybe you’ll feel some frustration. As with so many aspects of dealing with ALS, there is no right or wrong reaction. Afterwards be sure to think about what you discussed, including:

  • Is there something you need to clarify that you feel was misunderstood or misinterpreted?
  • How did this conversation make you feel? What do you want to remember? What do you want your loved ones to remember?
  • What do you want to be sure and talk about the next time?

Will it be easier to have the next conversation now that you’ve had the first one? Maybe, or maybe not. The temptation to put the conversation off, to dance around the hard topics, or to make assumptions is understandable and natural. There might always seem to be a better time, or better place, than now, and here. But letting loved ones know what’s important and the willingness to talk to them opens the door to more conversations sooner rather than later.

If you or someone you know has ALS, or, if you’d like to learn more about how you can support families battling the disease, please visit our website at www.alsa-stl.org.

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