Dr. Marc Siegel: Barbara Bush was a pioneer not only in life, but in how she chose to spend her final days

Former first lady Barbara Bush’s decision to not seek additional medical treatment and instead focus on “comfort care” shortly before her death Tuesday put a spotlight on a hard and painful question millions of Americans are confronted with every year: When is it the right time to back off from the most aggressive options of modern medical technology and treatment?

My patients all want to know the right answer to this crucial question, but there is no right answer that applies to everyone. We are all different. The smartest doctors apply their guidance on a one-on-one basis. The right answer for some of us is the wrong answer for others.

Is there a specific age or diagnosis that causes us to turn down the medical heat? No, there isn’t. None of us carries expiration dates. There is no medical “off” switch set with an automatic timer.

Mrs. Bush, who was 92 when she died, led an incredible life – one of only two women in American history who has been both the wife and the mother of a president, the other being Abigail Adams.

A pioneer on the issues of literacy and volunteerism, the former first lady at the end of her life led the way towards considering quality of life in terms other than simply brain function or pain from cancer.

When do you conclude you’ve come to the end of your life? There are questions and more questions.

How is your breathing? How many infections have you had in the past year? How many emergency trips to the hospital have you had to make? How uncomfortable are you on a daily or hourly basis? How would you rate the quality of your life?

We are all mortal, destined to exit this world at some point. How hard do you want to fight, how much pain and discomfort do you want to endure, simply to go on for a few more days, weeks or months? 

This is as momentous a personal decision as any of us will ever face – but it is also a decision that affects our society. More than a quarter of Medicare payments go to people in their last year of life.

This is not to say that everyone over 90 years old should accept a lower level of care. My father is 94 years old, and though somewhat feeble, he still enjoys his life, can walk and is in no discomfort or pain. This is why when a failing heart valve threatened to kill him last year he opted for a new kind of pig valve, floated in through a catheter, which saved him.

The price tag for my father’s surgery was $50,000, and Medicare covered it. The valve is expected to last 10 years, and so far my father is not wasting the new opportunity the valve has given him. But as technology continues to advance and become more and more expensive, it also becomes more and more relevant to ask whether the results are worth it. For my dad, they are. But the same isn’t true for everyone.

By contrast, my friend’s 96-year-old father-in-law recently became bed-bound and passed away from lack of eating and opioids for bone pain prescribed by hospice care. A prodigious bowler, he fought for his life as long as he could still make it out to the lanes.

In his last years bowling became a yardstick for his quality of life and will to live. When he could no longer bowl or even walk, he resisted recurrent trips to and from the hospital and bowed out with dignity. This was his right.

Barbara Bush answered the question of when to scale back care for herself in a courageous way that can help guide others in similar straits. Faced with recurrent hospitalizations over the past year and shortness of breath from chronic obstructive pulmonary disease (chronic bronchitis, emphysema), and heart failure, she opted Sunday to choose comfort care instead.

What is comfort care?

Comfort care means Mrs. Bush likely tried to enjoy her remaining days at home as best as possible – with food, oxygen and basic medicines – rather than being rushed to a hospital emergency room, trying to postpone the inevitable.

Barbara Bush lived a very valuable life. She was famous for putting the welfare of others – including her family – first. In her final days, she became a role model for knowing when to respond to the deteriorating quality of life by accepting impending death.

This decision is especially important when it comes to chronic diseases like COPD and heart failure, where it is hard to know where to draw the line. We live in an era of heart and lung transplants, emergency stents and valve replacements. But over the age of 90, the body may deteriorate in ways that are no longer possible to reverse, despite the greatest medical advances.

When it comes to cancer, the decisions are relatively straightforward: remove it surgically if possible, if not then treat with radiation or chemotherapy or consider the latest immunotherapies. Effective new diagnostic tools can tell us if cancer has spread and if we are losing the war or winning it. A decision can made by the patient, family and treating oncologist that the war has been lost.

So comfort care is often reserved for patients with terminal cancer, a severe stroke, brain damage or another condition that dramatically lowers the quality of life. In fact, studies have shown that those with severe heart failure or COPD are often resistant to receiving comfort care.

Barbara Bush showed us the way to a different approach – an approach that is more spiritual and quality-based, and less about all-treatment-is-automatically-good no matter what. She lived her life with class and strength. She died the same way. We were all blessed to have her as our first lady.