It matters

A few weeks ago, the NYT published an article written by a renowned oncologist titled “Condolences, Felt But Not Expressed”. In it, the author ponders why it’s so difficult for doctors to offer words of encouragement or sympathy to families after a loved one’s death, when it seems so easy for other professions. For instance, after the loss of his beloved dog, his vet sent his family a nice, detailed note expressing her condolences. He, on the other hand, has rarely written the same to families after losing a patient. He argues that doctors have a “strange way of grieving their patients.” He says “probably no one cares about our feelings when a patient dies, and that’s as it should be. Our personal loss, after all, is trivial – most patients we know only as patients. But we do have feelings, a confusing mishmash that includes disappointment and embarrassment, but is mostly a sinking emptiness.”

The author goes on to say:

“It’s like this: caring for very sick patients is exciting, probably because doctors, like everyone else, become swept away by human drama and possibilities. Managing a patient places us in the middle of hard decisions, bitter truths and sudden hallway conversations. We become futuristic acrobats of the high tech and the extreme, rather than yesterday’s stodgy pillars of the community, dispensing advice and lozenges, a silver-haired presence to steady any uncertainty. But then the patient dies and bam! it’s over, just when we had so much to say, so many plans. We are left alone with our hectic thoughts ricocheting and nowhere to point them. Then, within hours after the death, a new patient is installed in the same room. You look in and see a stranger with darker hair and different clothes, reading a newspaper from somewhere else. And with the new patient comes a new set of visitors, in ones or twos or crowded at the door. We just aren’t ready for the relationship to end.”

As I read his words, I couldn’t help but think, well, boo hoo for him; the loss of a test case must be overwhelming. Who cares about the family’s grief; it’s the end to human drama and futuristic possibilities that really matter.

Thankfully, Dr. Flaig is not of the same ilk. Dr. F. is a different kind of doctor. He thinks with his heart, and places the patient and their needs before his own. Craig said once that he appreciated Dr. F's “stable balance in all this chaos.” That makes two of us.

A few days ago, Dr. F. called to check in on Craig. From my perch on Craig’s bed, I could hear his discussion with his trusted doctor. C said that he missed him, his stable presence, and the sense of security in seeing him each week. I reiterated Craig’s feelings when I spoke with Dr. F. I told him how much it meant to C that he called, and that he’s still involved in his care. Dr. F said he thinks of C often, and that doctors never know whether it would be too intrusive to check in. But unlike the author, Dr. F. pushed his fears aside and called anyway. Just today, I spoke with Jennifer, Dr. Flaig’s nurse, about Craig’s long-term disability paperwork. She was as anxious to help today as she was when we were visiting their office every week. In speaking with Dr. F. and Jennifer, it was clear where theire allegiance lies.

Though Craig’s no longer under his direct care, Dr. F. still signs off on all his meds, and is very much involved in Craig’s care. He doesn’t have to be. He doesn’t have to spend his Sunday evenings calling about Craig’s health. His nurse, Jennifer, doesn’t have to help us with Craig’s long-term disability. They stay in contact because they genuinely care. They care about Craig; they care about his life and how he’s fairing. Rather than lick their wounds over Craig’s situation, they’ve actively decided to stay involved.

The bond between patient and doctor goes both ways. Dr. F. has guided Craig’s care since February; he’s helped Craig to understand his diagnosis, prognosis, and symptoms, and has walked C through some difficult decisions. Craig has spent more time with Dr. F. than anyone else outside his immediate family (and Emily). He’s expressed his concerns, exposed his fears and vulnerabilities, and has ultimately opened his heart to Dr. F. He’s given him the ultimate compliment by relinquishing some aspect of control and placing his trust with him. On the other hand, Dr. F. has grown to know Craig and cares for him as a person first, and a patient second. He’s invested in his health and wellbeing. That doesn’t end by virtue of a “shift change” to hospice.

Though the author warns against possible negative feelings for staying in touch, maintaining a connection with a family -- during the end stages of a person’s life and after – does matter. Severing ties strips a patient of an important lifeline, a bond of trust, a lasting constant. It also strips a doctor of a very human bond, as well as a family of a support network. You see, it’s not about how the doctor feels; it’s about the deep sense of grief a family feels after first fighting cancer, and than after a loss. Cancer is debilitating, or as Stephanie C. says, "a rat bastard." It changes lives and leaves patients and families completely disoriented. My sisters and I have put jobs and future dreams on hold to take care of Craig and our mom. But they've given up more. They’ve placed themselves fully into the hands of gifted doctors and nurses. They've relinquished control over that which is most sacred – their bodies – to the whims and machinations of corporate health care. They've struggled with drug formularies and pre-existing conditions and nameless people telling them no. They’ve withstood countless poking and prodding and have let go of everything that we, as independent people, hold dear: the ability to live our lives unencumbered. Cancer is also isolating. It robs people of all things normal, including friends and routine. Strangers in the form of doctors and nurses become new constants. Personalities change, as do old habits. Life becomes a division between the before and after. To sever that bond simply because a patient terminates care with a doctor is like stripping a person of that remaining constant, the last and most sacred of bonds. To leave during the end stages can make a person feel even more alone. For a family, it’s like pulling the rug out all over again.

Not recognizing the loss of a patient is tantamount to saying all the effort, all the time together didn’t really matter. Cancer patients aren’t visitors; they’re human beings searching for hope. To treat them as the former does a disservice to the memory of that person, and to the family.

Thankfully, this hasn’t been our experience with Craig’s doctors, nor with mom’s. We’ve had doctors who’ve put their own feelings aside for that of their patients. We consider Dr. F. and Jennifer family. Cancer is too cruel a disease to be overwhelmed by pretense and false claims of self-importance. I have the sense they feel the same.

So, to the author of the article, I say, get over yourself. There’s much more to being a doctor than fast cures and symptom management. –J