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The importance of talking to your doctor about your end of life care…now!

How avoiding making decisions at the appropriate time, can make things harder for you and the people you love

If your heart stops would you want us to perform CPR? Would you want us to shock you? What if you stop breathing? Would you want to be on a ventilator? Are you ok with feeding tubes? Central lines? Dialysis? Antibiotics? Intravenous fluids? 

I have asked those questions thousands of times during my career as a hospital physician. Yet when I was asked those same questions about my own dad, the answers didn’t come so easily. 

You see, I knew, dad’s health was tenuous for nearly a decade before his death. Yet despite my best efforts he always avoided answering my questions about his end of life wishes.  By the time he turned 83 he had suffered a half dozen heart attacks, went through two bypass surgeries, one pacemaker and defibrillator, liver cirrhosis, dialysis and much more. His last visit to my house was that joyous Christmas eve when we ate, laughed and took pictures together by the tree. A day later, I got that unforgettable call about his fall and pelvic fracture. I knew too well that this was going to be the beginning of the end. 

I knew that studies had estimated the risk of death as 5-8X higher in the three months after a hip fracture. That risk being particularly higher for men, nursing home residents and those with cognitive decline.  Even if the immediate complications and surgery to repair the fracture went well, only 14% are able to go home with the majority being discharged to a nursing home. At one year post fracture the mortality can be as high as 25%- 53.5%.  

Despite that knowledge and understanding that dad had a very poor prognosis, the panic and anxiety that came during his last week of life was unimaginable. I thought I was well prepared for the worst, but I had no idea how bad it could get. 

Since he had never wanted to tell us his wishes, the family tried to make some decisions on his behalf. There were disagreements, differences of opinion and many tearful debates. What would he have wanted? Such an independent, strong willed and fierce man who many feared even until his last days. Would he want us to fight for him and do everything to save him no matter what …even if it meant he would be hooked up to machines indefinitely? Or would he have been angry to be dependent on artificial means of prolonging his life…hooked to a machine that would breathe for him, another machine to do dialysis 24/7 and an uncomfortable tube through his nose that would feed him continuously. 

When I advise patients about the interventions that we can provide at critical times, there are always the common questions and comments. Families often ask: “Is mom going to suffer because she is hungry and we haven’t started feeding her?”, or “Do you think grandpa is thirsty?”. Or they get angry when we explain their relative’s poor chance of survival and meaningful recovery if they receive CPR or intubation. Many families demand we do everything to save their loved ones. Yet what never came up in these conversations was how painful it was to put in that nasogastric tube that provided the tube feedings. Nobody ever asked or did it ever come up that sometimes those feeding tubes fall out multiple times a day. One day, dad pulled out the tube twice on his own. Two additional times it just got clogged on its own for no good reason. That meant having the tube re-inserted 4 times that day. Despite being unconscious I could see the agony and pain dad experienced every time they shoved that tube in further trying to get it to that magic spot in the stomach. They had tried putting it in so many times that he started having nose bleeds. The clear path to what was right got blurred between my desire to do everything in my power to save him and the pain and suffering I was witnessing on a daily basis. 

At least the family had agreed that we were agreeable to providing antibiotics, fluids or feeding but no intubations and CPR when he was initially admitted. We knew dad was simply too sick and weak to tolerate any aggressive interventions. We kissed his forehead and cried while he was unresponsive in the emergency room, convinced this was the end.

Yet to our amazement dad’s condition started improving 48 hours after admission to the hospital. He woke up with a big smile one morning as if nothing had happened. When the doctors asked more details about the care he wanted, we urged them to ask dad directly. To our shock, he told all of us, he wanted EVERYTHING done. Ventilators, continuous dialysis, CPR…nothing was off the table. I will never know the truth, but I am now convinced that it was his great fear of death which made him give those answers to the doctors. I asked him, “Daddy what happened to you, I was so worried you were going to leave us” and he replied, “No honey, I’m in no hurry to leave. Death is a terrible thing”.

With the change in his code status and wish for full support now the doctor’s would do everything in the case of another emergency. Indeed nearly 24 hours after that decision, his heart suddenly stopped. A code blue was called and doctor’s and nurses rushed in to give him CPR. They pressed on his chest to bring back his weak heart and in the process cracked several ribs. They were forced to sedate him, put a big tube in his mouth, and connect him to a ventilator. He was gone for 7 minutes without a pulse and I cried again thinking this time it was really the end.

Dad of course, as was his nature for all of life, was not going to give up that easily. Just like those action movies when they shoot a guy and despite multiple bullets he keeps getting up…well dad came back again. He managed to wake up, grab my hand, smile and follow directions thirty minutes after his cardiac arrest despite the tube in his mouth, the feeding tube in his nose, and many many intravenous medications hanging by his side. Ultimately, his condition slowly worsened over the next few days and it became increasingly clear that he would not survive the hospitalization. Having to stop and withdraw life-saving support was one of the hardest decisions I’ve had to make in my lifetime. 

The incredibly traumatic week of ups and downs in his care will be in my memory forever. It has made me incredibly passionate about advising future patients and loved ones about the importance of advance directives earlier in their care. 

The current pandemic has clearly increased the necessity of having these important conversations with our elderly, immunocompromised and ill relatives. With mortality estimates being 50-80% in Covid positive patients on mechanical ventilation we can all be better prepared by educating ourselves about these difficult choices. 

Having ongoing conversations with your family and doctor about advance care planning, designating surrogate decision makers, and expressing preferences for end of life care, alleviates significant hardship for everyone in the face of unexpected illness. Yet unfortunately, a review of over 150 studies from 2011-2016 (analyzing 795,909 individuals in the US) shows that in fact only 37% of people have completed an advance directive. The statistics are in fact considerably lower and can range from 2-10% in other parts of the world. 

Interestingly a recent study in the Journal of Hospital Medicine showed that if patients are provided a 6 min video with explanation about CPR and simulations of code resuscitation they were more likely to pick a Do Not Resuscitate status (56% vs. 17%). This indicates how confusing and inadequate the rushed in hospital conversations about code status can be. Advance planning can not only reduce the burden and guilt from our loved ones but also be more in alignment with what are personal goals and wishes are. 

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