Make End-of-Life Wishes Known Now

Death is inevitable. Talking about it should be too.

It’s important to think about and discuss your preferences long before you and your loved ones are faced with difficult end-of-life decisions.  

When should life-sustaining treatments like breathing machines or feeding tubes be started or stopped? Who should make healthcare decisions for you when you are unable to communicate or decide for yourself? Where do you want to be at the end of life – at home, in a hospital or in a care facility?  

These are just a few of the crucial decisions we may face at the end of our lives.  

This week, we’ll observe National Healthcare Decisions Day as a way to help people understand the importance of advance healthcare planning and offer assistance in how to do it. The project’s website offers a conversation starter kit, advice on how to talk to your doctor, and information about choosing a health care proxy, which is the person authorized to make healthcare decisions for you when you are no longer able to.  

At Cleveland Clinic, we have made a conscientious effort to honor patients’ and families’ end-of-life preferences and needs by adding a Center for End of Life Care in the Office of Patient Experience. By asking patients about their goals and respecting their preferences, we can improve their quality of life, even in their final days.  

At some point, another stay in the ICU or another round of chemotherapy is more likely to extend pain and suffering than extend meaningful life.  

Caregivers should serve as a listener, a provider of information, an adviser. Many doctors see death as failure. We see our job as trying to preserve life at all costs. But we have to realize that death, of course, is a natural act. Societally and professionally we may be uncomfortable with it, but we as professionals we have to figure out how we get comfortable with it. We need to understand where the patient and the family are emotionally, not just physically.  

We as healthcare providers can do better. For example, while research shows that most Americans prefer to die at home, 75 percent actually die in a hospital or nursing home. Why the discrepancy? The most likely causes are that patients are uncomfortable or unable to express their wishes, families are unsure of those wishes, and healthcare providers fail to ask.  

That’s why we need to ask ourselves, “Do I really know what my patient’s goals of care are?” We have to discuss it earlier rather than later, because the “gold standard” is to learn directly from the patient. When that’s not possible, advance directives are powerful tools to help ensure that patients’ wishes are respected, to decrease the burden of decisions on families and caregivers, and to limit inappropriate therapy.

However, for advanced directives to be actionable they must be accessible, which is why, over the past two years, we have invested in increasing the number of advance directive documents readily available in our electronic medical record.  

As we continue to advance our end-of-life care programs, we are focusing on providing better life expectancy information to patients and families. Currently, there is little readily available data on long-term survival of patients with chronic diseases who are facing an intensive care admission due to an acute event. Providing patients with this information will allow them, their caregivers and their families to thoughtfully balance the risk-benefit ratio of conducting high-risk procedures.  

The time to start planning your advance directives is now. This is not an exercise reserved for the elderly or those currently dealing with a serious illness; it’s for everyone over the age of 18, because injuries and health issues can arise suddenly and without warning. As the theme for National Healthcare Decisions Day 2017 says, “It always seems too early, until it’s too late."

Additional information about medical decision-making can be found here:

• Cleveland Clinic Patient Guide to Personal Medical Decisions
• Cleveland Clinic: Advance Directives