February 19th, 2013
‘So, Doctor, How Bad Is It?’
While on my Electrophysiology rotation, I was asked to interrogate an ICD of a patient who had received a shock from her device the night prior to admission. I performed the interrogation, confirmed that it was an appropriate shock for VT, noting that multiple appropriate shocks had occurred in the preceding months. As I was leaving the patient’s room, I was stopped by a family member.
“So, doctor, how bad is it?” she asked.
I knew only that the ICD was placed for primary prevention in the setting of heart failure with a depressed ejection fraction several years ago, and that this was the first time the device had fired since it had been implanted, and that the patient had been admitted in decompensated heart failure.
With concern in her voice, she continued, “She was doing ok before this; what does this mean and how much time does she have left?”
I was caught off guard and I hesitated for a moment, trying to think of the right words to say regarding a delicate issue about which I did not have enough information to address. As I thought of a response, I couldn’t help but think about what we have learned from long term follow up studies of the large ICD trials (such as MADIT and DINAMIT) – that although ICD’s deliver life-saving therapies, the people who do benefit from those life-saving therapies have been shown to have a significantly decreased survival after therapy compared to those who never receive them. At the same time, I also remembered that every patient is an individual, so that finding may not necessarily apply in any particular case.
I acknowledged their concern, but given that I was only peripherally involved, I asked them to wait to speak with the primary cardiologist who had been involved in their family member’s care for a long time. As I walked away, I couldn’t help but feel some relief in avoiding the complexities involved with addressing the “prognosis” question; but I was left with a lingering unease. I kept thinking, if this truly had been my patient, what would I say if I had been asked how long this patient had left to live?
Several years ago when I was deciding on subspecialty fellowship training, one of the many reasons why cardiology was so appealing to me was the incredible capability of being able to save people’s lives while also maintaining their quality of life– either with live-saving PCI during STEMI, medical optimization in heart failure, or even bi-ventricular ICD implantation. Our training and practice is built on the backbone of “best evidence” from trials with thousands of patients that have shown us how to improve morbidity and mortality in patients with cardiovascular disease. But what happens when our interventions don’t work anymore? What happens when our patients arrive at that tail end of the survival curve?
In fellowship, the emphasis of our training is often focused on life-prolonging interventions, but when do we learn how to approach end-of-life issues with our patients? What has your experience been as a fellow, and for those with more experience in practice, how do you navigate end-of-life issues?
What would you say to this patient and her family?