A Different Approach

“They are now DNR.”

It’s odd to think that this was a congratulatory task in the past. While in my internal medicine residency, I often came across encounters where ongoing care for patients seemed futile and, more often than I’d like to admit, painful for the patient. In those cases, it was rarely the patient making these decisions but rather their grieving family members.

It is a difficult concept. There is no magical line to cross when you recognize that death is inevitable. There is no perfect point you come across that makes you realize it’s time to shift the focus from curing to enduring, from aggressive treatment to end of life care. From my experiences, I have learned that this point never comes for some people.

Before I had my own experiences with illness and losing my father, I was very naive. Looking back, it seems that many of my colleagues were as well. The ability to have empathy is a gift. It’s a gift you never wanted but were granted through a similar experience. It changes you and your entire perspective. You can relate to some of these situations. You can appreciate the emotion from the other side. Persistence for aggressive care no longer seems as crazy or selfish. You get it.

There were countless experiences where ongoing aggressive care for patients would clearly not change the course of their illness. As a resident, many of my experiences with this happened in the ICU, once patients were quite literally at a standstill. In modern medicine, we can keep people alive for a long time. There are IV medications to help pump a shocked and failing heart, machines to breath for you, machines to take the place of your failing kidneys and even machines to quite literally oxygenate your blood for you when even your lungs have failed and you cannot tolerate a breathing machine.

These treatments are amazing. They are remarkable, fantastic and function to save lives as for which they were created. For a gentleman with a disseminated bacterial infection and shock (septic shock), IV medications, a ventilator and hemodialysis will keep him alive long enough to give antibiotics time to kick in and save him. For a 40 year-old patient with severe lung failure from COVID-19 pneumonia that fails a ventilator, extracorporeal membrane oxygenation (ECMO) will buy him time to get a lung transplant to give him another chance.

These stories are remarkable. They are inspiring. They are part of the reason I became a doctor. They are not futile, and aggressive care is appropriate. It is the beauty of modern medicine and many great minds who have contributed to it.

But what about when all of these things only prolong the suffering? What about the 95 year-old male who can only sit in a chair all day and his only communication is a groan. This is perhaps a man who stops eating when his dementia progresses. What about a 40 year old mother of two who has diffuse metastatic breast cancer with multiorgan failure and initially elected to treat her cancer with herbal therapies but now wants everything done?

In medicine, we label treatments that offer no benefit and can actually be harmful as “futility of care.” I’ve encountered many of these scenarios in my career, yet I only recall two cases where the ICU attending stepped in and said enough. These were dire cases where it was obvious the patient was suffering from the efforts to keep them alive.

It’s complicated. Who has the right to determine when enough is enough? Where is that point?

As a resident, these cases seemed more straightforward than they do now. Before my experiences with my most tragic loss of my Dad, I could not understand how these family members could be in such denial. As a resident, obtaining a DNR (do not resuscitate) order from a family member for these cases was sometimes treated as a badge of honor.

“Great work,” “finally,” “thank God,” were all responses you would get from the team. It truly felt like you were doing a favor for the patient and ending a senseless course of poking and probing and prolonging.

Many of my DNR conversations took place with families of patients that I took care of for a long time. I came to know them and there would be frequent family meetings with the team to review the care and discuss a failing course.

Sometime into my residency, a palliative care team began to blossom in the hospital. This was quite literally a team that deals with difficult decision making and complex cases, including end of life. They would start by having families tell us about the patient. Families would bring in pictures of their loved one for the meeting and describe them. It was a bit shocking. To be frank, it doesn’t matter if you won a Nobel peace prize or cleaned toilets in your lifetime, once you hit the ICU, you were a patient. Someone with a rich history and many life stories that were no longer applicable. You were the 85 year old male in room 17 with septic shock or the 67 year old female in room 3 with disseminated lung cancer and respiratory failure. The first time I attended a palliative care meeting for a dying patient, I remember learning that the man I had been writing orders for to keep alive for the last week was a decorated veteran who then worked for a small business, loved to play tennis and had 15 grandchildren. I remember that I approached him differently the next time I examined him.

I remember being fairly far along in my pregnancy when I kind of took over the task of calling family during code blues. I was heavy and slow and often the last senior resident to make it to a resuscitation effort. The conversation became generic. I didn’t know these people. I glanced at the chart and often came across an elderly individual with a page of chronic medical problems and dozens of hospitalizations in the last year. I could identify that we were doing nothing but prolonging this assumed terrible quality of life. I would relay my concerns to their family and review their wishes. I made a point not to push for a DNR, but I’ll never remember one occasion when I got it immediately. This family had likely already been grappling with their loved one’s progression when I found them in the hallway to discuss what was transpiring.

“I’m sorry to tell you this but their heart has stopped. We are doing everything we can to resuscitate them. Did —- have any limitations to his care?”

“No but he wouldn’t want this. He wouldn’t want all this,” his wife told me.

“I understand. You do realize that if we stop, he will pass.”

“I understand,” she told me.

I quickly ran back to the room and yelled across the crew of providers actively resuscitating this man.

“STOP!” I yelled to the resident running the code. “His family does not want him resuscitated.”

Just like that, everyone stopped. Everyone filed out of the room while ICU nurses and colleagues passed me on the way out. “Good job,” “nice work,” were comments that I received along the way.

Good job? This experience sticks with me today. I have so many emotions about it all.

After my Dad got sick and passed away, my approach to DNR completely changed. My approach to my patients in general changed. A DNR is no longer an achievement but yet an understanding. My patience with end of life care and tolerance for aggressive measures has changed. My empathy for families has changed.

I see my Dad in some of my patients – in their pain, in their stories, in their courage. I find myself taking the time to really listen to them, to squeeze an offered hand and to comfort family while allowing myself to be emotional.

I have learned that not everything is so straightforward. Yes, there are still many cases where designating futility of care is very appropriate. However, I now appreciate that when my terminal cancer patient is not ready to accept a DNR order, it does not mean that they don’t understand their situation. While I once applied that resuscitative efforts for these patients were purely torturous and terrible, as I was taught, I now appreciate that some patients are not ready to let go of that battle.

The idea of ending every life in hospice care with peace and calamity surrounding by family is a beautiful one. It is an ideal that we strive for as physicians. We want that for our patients, hence the need to emphasize it when we know the end is inevitable. Despite this, life has taught me that this ideal is not the same for everyone.

My dad fought until the end. He was brave and determined and fought through unimaginable pain. This horrible disease put him through an indescribable hell, but he kept going. This was his right. This was his approach and his wish. He deserved that fight and that care. He deserved to navigate his battle in his own way with the tools available.

When we draw a line in the sand to determine when it is someone’s turn to change gears, we forget about them. We lose sight of someone’s life and soul and legacy. For some, the way to cross that line may be more acceptable to naive doctors. For some, it may look less clear. There is no right way to cross that line.