Key conversations

According to The Conversation Project, 92% of Americans think it's important to discuss their wishes for end-of-life care, but only 32% have done it. As you consider the unknowns about your future health and decisions that might need to be made on your behalf, it's essential that you reflect on your values and how they relate to your preferences for treatment. This reflection prepares you to talk about your priorities with those on your healthcare team and to write them down in an advance healthcare directive.

Ideally, you will also choose a healthcare decision maker (also called your “healthcare agent”) and talk about your thoughts with this person. Don't force yourself to complete this conversation in one sitting. That could be overwhelming. And keep in mind that over the years, as your health and life circumstances change, you will want to update your advance directive and your healthcare decision maker through new discussions. Talking about your values may even draw you closer to the person you have chosen to make decisions on your behalf.

The end goal of these conversations is to provide guidance to anyone who needs to make decisions when you are unable to do so. But the conversations are also much bigger than that.

It's about living

While life support issues are a part of the discussion, it's not just about death and dying. In some ways, this is a great time to think about what is important to you about living and how you might make adjustments so your life is more in alignment with your priorities.

These conversations are not just for people with a serious illness. Every adult needs to make their wishes known—before it's too late. You never know. Realistically, something could happen even today that might render you unable to speak for yourself in a health crisis.

Everyone can benefit from these conversations. 

What makes life worth living?

Before engaging in conversation about your healthcare wishes, do some personal reflection about what matters most to you. What brings joy to your days? Meaning to your life? For instance, you might wish to consider the following:

• Your "bucket list." With whatever time you have left, be it weeks, months, or years, is there anything you really hope to do, see, or say before your time is done?
• What makes a good day good? Your answers will provide clues for yourself and others concerning what to prioritize in your daily life. That is, if others had to be in charge of your life, what should they focus on providing for you?
• What makes a bad day bad? Are there things that are important to you to avoid or control? For instance, nausea from chemotherapy. Or certain characteristics in care providers (perfume, loud voice, etc.). Share this information with your loved ones and your healthcare team. Ask for their help.
• Is there anything that might be "worse than death"? For some, it might be a life of unrelenting pain. For others, it would be immobility or dementia so advanced they can't recognize their family or friends. Each of us has our own unique threshold of acceptable quality of life. 

Quantity or quality of life?

You may have a general sense of where you are on this continuum of priorities. There is no right or wrong. And there is plenty of middle ground in between. Which of these statements is closest to how you would feel if you were seriously ill?

• "As long as there is hope, do everything you can to keep me alive."
• "If my day-to-day quality of life gets too low, I would prefer to be kept comfortable and peacefully let nature take its course."

How might you change these statements to more closely reflect your feelings? Follow your gut with what feels true for you. Let your doctor, your family, and your healthcare decision maker know where you land on this continuum.

Your role in your own care

More and more, medicine is adopting the principles of "patient-centered care" and "shared decision making." Rarely does the doctor tell the patient what to do. Instead, in the ideal relationship, patient and doctor work together to decide on a care plan that helps the patient live according to their own values and priorities.

Consider for yourself: Do you prefer to be involved in all care decisions? To know all the details? Or would you prefer that a doctor choose, or that those close to you work with a doctor to decide on your course of treatment? Again, there is no right or wrong. It's simply a matter of your own personal preference. Where do you fall on this continuum:

• "Please include me in all decisions. Tell me about lab tests and let me know the diagnosis. Explain all my options in detail, including the pros and the cons. Be honest with me about my chances of living or dying. Also my likely quality of life with each type of treatment."
• "I prefer that others take the lead. Make the decisions you think are best based on what you know of my values and priorities. I don't need details. What I need most is your help staying upbeat and positive."

How might you modify these statements? Share your thoughts with your healthcare decision maker, your doctor, and your family. 

Facts about key interventions

The topics of these conversations are often the groundwork for a time when your healthcare decision maker may need to answer questions about life support measures. Understanding your priorities about quality and quantity of life will be important. It will also be important to weigh the likely outcomes of the different treatments; for instance, cardiopulmonary resuscitation (CPR), ventilators (mechanical breathing machines), and artificial nutrition (tube feeding). It will help your healthcare decision maker to talk with you now about each of these life support measures. Once you know the survival rates, the likelihood of brain damage, whether you are likely to be able to live independently afterward, you can give your healthcare decision maker a better sense of which treatments you are likely to want or not want.

Would you like help with these conversations?

Contact the experts in eldercare:

LionHeart Eldercare & Consulting

703-677-8319