Palliative Life

Maura J. Lipp, MD

I was recently asked to give a presentation on what makes Palliative Care a specialty and why our team needs to function differently than “traditional” medical care. Naturally, this is a topic that can lead down many rabbit holes, depending on how you would like to broach the subject. The list is truly endless.

As I thought more about this, I was quickly reminded of a glaring example, one of my own experiences:

The other morning, I was having a conversation with my husband over breakfast. He’s been having a lot of anxiety since my diagnosis, as you might expect.

I spent the morning trying to reassure my husband that he will be okay after my death. We talked about grief, anticipatory grief and finding a way to hold on to hope which means having faith that as bad as something is in the moment, the future holds beautiful possibilities. I said, 20 years ago before we were married, you couldn’t have imagined you would have the life we have now. So, even though you can’t see it now, you have no idea what your life will be like in 20 years. Maintaining this hope is usually a conscious choice that often requires a lot of effort. But without it, we are nothing. Without it, my husband can sink into a dark oblivion which is something that frightens me. Even worse, that I won’t be there to be able to help him through it. Instead, all I can do is plant these little seeds in his mind and hope he remembers conversations like this one.

There is so much more to the cancer illness experience than just physical symptoms and treatment decisions. There is a broad disruption to not only the patient’s life but also their loved ones as well. I’ve experienced most of them, the identity crisis, grief over losing my career, spiritual awakening, financial concerns, limited social interactions and just contending with the very concept of my own mortality. Existential suffering with severe illness runs deep. Deeper than I ever could have imagined before I became a patient myself. As a physician, I thought I knew, I acknowledged it was present, but had NO idea.

Returning to the question at hand, I have excellent medical care. I see my local Oncologist nearly every week. I have a specialist Oncologist at an academic institution as well. A nurse navigator from their cancer center as well as the fabulous oncology nurses who I see weekly, for hours at a time as I receive chemotherapy. In addition to that, I have a great PCP, I also have a Neurologist and Rheumatologist. I receive more medical care than a person could ever want. They are all top notch. But, never once has anyone ever asked me about the issues I have just described. Even if they had the time to engage in this conversation, as good as they are, it is unlikely that any of them would have the capacity to deal with these issues. As physicians, most of us receive little to no training in this arena.

Palliative Care is the ONLY avenue poised to contend with these aspects of the illness experience. By definition, as Palliative Care specialists we MUST be different than usual medical care. We are the ones filling in the gap, addressing what patients like me don’t otherwise get. I don’t need more of the same. It would just be redundant and unhelpful. I need a person who has the time to spend with myself and my husband, someone who has expertise and is comfortable in this area. If my Palliative Care NP comes to my house and simply clicks boxes in the EMR and then leaves, well it’s not Palliative Care is it.

There is an inherent danger in allowing our routine as medical professionals to in fact become too much of a routine. Cookie Cutter medicine doesn’t cut it in Palliative care (no pun intended). When our visits follow a rigid routine, it is less likely that the patient’s agenda will be addressed at all. We simply go from one visit to the next, clicking boxes in the EMR and finishing our notes as if that’s our only duty. Patients want to be treated as individuals, patients with existential suffering need someone to bear witness to their very lives. When patients are fearful, they just need someone to hold their hand. While of course we have items on our list we must complete, a patient’s agenda must come first. Sadly, in modern medicine, the patient’s agenda is increasingly becoming a thing of the past.

The realities of modern healthcare are such that physicians in their offices, no matter how much they may want to spend time with their patients, simply can’t do it. When you’re allotted 10 -15 minutes with each patient, much of which is spent in front of the computer, it is virtually impossible to fulfill all the needs of seriously ill patients. I don’t expect that will change anytime soon. In fact, it is likely that will worsen.

So those of us in Palliative Care need to make a conscious effort to always combat these issues so that we can fulfill the promise of our specialty. We must be what usual medical care isn’t. Period.