Palliative Life

By Maura J Lipp, MD

There is one phrase used frequently in medicine, much to my dismay that I wish we could veto. Full disclosure, the sentiment when said, isn’t coming from a bad place. In fact, it’s coming from a beautiful place, an empathetic place. That place inside us that reels against terrible things happening to our patients. We say this with loving intent however, we all know good intentions can at times be not so good at all. What is the expression, “the road to hell is paved with good intentions?” Well, the “road to hell” part might be a bit dramatic however, the lesson is the same. What is the phrase you ask? It’s the one we often say when patients and/or their families choose options that we personally don’t agree with. You know it well, here it comes- “They just don’t get it.”  If I had a dime for every time I heard those words uttered in the ICU I’d be on a private plane headed for Bora Bora right now instead of writing this article.

I understand the sentiment, naturally. The frustration is very real. There is nothing fun about watching your patient receive invasive treatments when you know it is absolute futility. “Why are we doing this to them, the patient is dying don’t they get it?” Be honest, you’ve likely uttered these words a time or two. I certainly did, especially early in my career. At the very least you’ve heard it repeatedly from your colleagues. 

Early in my career I held this idealistic however as I’ve come to learn, somewhat misguided view. I made it my mission to “get people to understand, to know the truth and therefore make the ‘right’ choice.”  Leading difficult conversations, in cases where death was inevitable, such that the conclusion is one that avoids unhelpful, invasive and uncomfortable medical interventions is an honorable goal. The result can in fact be a real win. The ability to support the family in a compassionate, kind manner through effective communication is absolutely a critical skill to possess. Where we go wrong in the medical community is when the patient/family chooses a path that to us is contradictory to how we think care should be best delivered. Frustration sets in and at times, we suffer the moral injury that comes with knowing you are doing something TO the patient, and not FOR the patient. (There is another one of those frequently used phrases)

We should work to provide the most appropriate care to our patients at the appropriate time. That includes, advocating for better end-of-life care when the circumstances dictate. We need to inform, suggest and when requested, give permission to the grieving family to make the difficult decision. However, what is misguided, is our understanding of the barriers that stand in the way.

What is it in fact that keeps people choosing aggressive yet futile medical interventions despite our recommendations to the contrary? Is it poor medical literacy? Is it ignorance? At times perhaps, it may be. But I argue that our number one hurdle is grief. Grief and the intense will to live. Most people KNOW that they or their loved one is dying. It does no good for us to keep belaboring the point in such cases. Repeatedly emphasizing futility is unlikely to move the needle. In fact, that can be detrimental as we run the risk of introducing even more family guilt to the grief equation. That is an exceptionally unfair thing of us to do. Guilt that they will carry with them for years to come. A more “forceful and direct” approach is not the path to resolution. Yet I regularly see this tactic employed.

Repeatedly emphasizing futility is unlikely to move the needle.

What else happens? When staff talk amongst themselves, in such cases these families can be labeled as “difficult.” Once that label is applied, it’s there to stay. From one shift change report to the next, the words “watch out, this family is difficult, they just don’t get it” will be uttered. Once you’ve been told “they are difficult” your opinion is solidified before you’ve even met them for yourself. You go into the next meeting armed and prepared for battle.  Preconceived opinions serve to blind us to the reality of what is unfolding in front of us. A barrier to effective communication is created before the meeting even begins. It’s only when we consciously tear down this barrier and remove the label that a breakthrough is reached.

The dynamics of these interactions are complex, but we need to master them. I often joke that my job is 90% psychology and 10% medicine. That’s probably an exaggeration for effect but, the general point is still very true. When you hear people describe what makes a good doctor, the emphasis is always on the personal interaction.

When you hear people describe what makes a good doctor, the emphasis is always on the personal interaction.

Our job is to first simply establish a human relationship, build trust, provide accurate information and support our patients’ and their families’ grief. Walk with them compassionately as the illness unfolds.  If we acknowledge their fears and concerns, we can support them through the difficult decision they know they need to make. We don’t need to force them to make it, we just need to hold their hand. To do this effectively, we need to first acknowledge our own humanity. Place ourselves in their shoes as best we can. Understand first and foremost the pain of loss. Understand that the will to live is more powerful than you can ever imagine. I never understood exactly how powerful it could be, until I was forced to face my own death.

After my cancer diagnosis, I started thinking back to all the patient interactions I’ve had over the years and often wonder if the advice I gave was as good as it I thought it was at the time. My goal was always to be the voice that lends permission to consider the alternative option that is, not pursuing aggressive treatment IF that’s what they in fact desire. So many people choose aggressive treatment because they think they must or because they believe it’s what everyone wants them to do. I just wanted them to understand, they aren’t wrong for thinking otherwise. Not to persuade them per se, but to know there were many options to consider and that the choice was theirs. It’s easy to see when someone has widely metastatic disease, is unwell at baseline or has a poor quality of life PRIOR to a cancer diagnosis for that individual, opting for comfort directed medical interventions may be appropriate. But if my doctors had made similar assumptions, like many in healthcare still do, I would not be alive today writing this blog. 

But if my doctors had made similar assumptions, like many in healthcare still do, I would not be alive today writing this blog.

Why is this pertinent to the conversation at hand? Because as much as I know, being both a Critical Care and Palliative Medicine Physician, emotionally I could NEVER have made the choice NOT to pursue aggressive treatment. The panic that ensues with a diagnosis such as advanced cancer, the utter disruption of one’s life leads to only one reaction-intense determination to try to fix it. Fix it any way you can. I CANNOT accept that my life is ending. I do not, with every ounce of my being, want that to happen. I do NOT want to leave my husband alone, that thought of how hard this is going to be on him. Life is beautiful, the idea of never again doing anything that you love, with the people you love is too painful to bear. If you imagine for a minute what that would feel like, then you understand instantly why it’s so hard for patients to process the concept of “not doing anything” to treat their disease.

As patients with advanced or serious illness, we are desperate for more time. We are desperate to continue living the lives we have. When it’s our loved ones, we are desperate NOT to lose them forever. Lives are dramatically and painfully disrupted when a loved one dies. THAT my friends IS the barrier. It’s not ignorance, it’s not lack of understanding the prognosis, it’s not ill will. As you see, it’s not at all because “they just don’t get it.” It is in fact because they DO get it. And “getting it” causes incomprehensible grief. Until we as medical professionals recognize this first and foremost, we will always have “difficult families” or “difficult patients.” It’s time to ask ourselves, who is it that’s really being difficult?

It’s time to ask ourselves, who is it that’s really being difficult?

We need to be better, more human. We need to focus our efforts on bearing witness to the life in front of us. Most certainly, we cannot keep people alive forever. And yes, there will come a time for all of us when aggressive medical care at all costs will become the wrong choice. But caring for people well means you must pay homage to the humanity unfolding in front of you. And please, above all remove the phrase “they just don’t get it” from your vernacular.