By Marcy Phipps, RN, a regular contributor to this blog. Her essay, “The Love Song of Frank,” was published in the May (2012) issue of AJN.
Photo by the author
“His family knows this is not a survivable injury, right?”
This question, posed to me in the doorway of my patient’s room by a trauma surgeon I regard as brilliant, caught me off guard.
“No,” I said. “They don’t know that.”
He frowned at me, mumbled something about false hopes, then moved away to continue his rounds.
This wasn’t the only physician who’d expressed a strong opinion regarding my patient’s mortality—a consultant had deemed his injuries “not compatible with life.” But I’d been caring for this man, as a 1:1 assignment because of his high acuity, for every shift for weeks. It seemed obvious to me that my patient’s continued presence in the ICU—and his relative stability on that particular day—directly opposed the dire predictions. The man’s family did not see his situation as hopeless, and neither did I.
And yet days after the surgeon uttered those words, my patient suffered a complication and became so unstable that for hours he teetered between life and death. The resuscitation effort was massive—and no one mentioned survivability. No one behaved like there was even a shred of futility in bringing to bear the full force of medical interventions. I never left his bedside, determined that, if my patient were to die, it would not be for a lack of vigilance and intervention on the part of his nurse.
And now weeks have passed. The patient with the nonsurvivable injury is much improved and nearing transfer out of the ICU. He’s impatient—tired of being in the hospital. He doesn’t believe his mother when she tells him how sick he was. The other day, she called me over to his bedside and asked me to tell him about how I’d called her on the worst day, telling her she should come to the hospital, that I thought she should be there—just in case . . . and he rolled his eyes. He doesn’t remember anything, thankfully.
The trauma surgeon’s words continue to plague me. The blunt predictions of mortality, laid down as edicts, threw me off balance. I’ve seen people survive worse injuries; conversely, I’ve seen people die from far less. And although I have had the unsettling experience of caring for a person beyond saving—while waiting for a diagnosis of brain death, for example—those types of cases are generally the exception to the care I give, and not the rule.
It’s been awhile since that brief interaction I had with the physician, and I’ve spent more time ruminating about his comment than I’d like to admit, mulling over survivability and hope in the ICU, puzzling over exactly why I took offense. It’s taken me some time to conclude that the heart of the matter is this:
The term “false hope,” when used to describe survivability, is not compatible with nursing. For nursing, as I know it, is rooted in hope.
The following story was related to me by a retired RN.
“Susie” had a patient who was diagnosed with terminal cancer ( I’ll call him George). The doctor gave him no hope, and only about 6 weeks to live. Later that day George was complaining to her that he wasn’t ready to die, there were goals he wanted to reach with his family such as seeing his first grandchild, so Susie simply told him that he didn’t have to die.
Six months or so later George returned to his doctor for something relatively minor. When the doctor walked into the room he was absolutely astonished & stated that he assumed George had died six months earlier. On being asked what happened George pointed to Susie and replied, “She said I didn’t have to die.”
George’s cancer has returned and again he has been labled “Terminal.” The difference is that he is now ready to go.
Having been a registered nurse for 37 years now I have had my fair share of situations where physicians and other medical personnel express a hopeless outlook on the prognosis of a patient. I no longer have face to face contact with patients in a clinical setting as I am currently an ambulatory case manager for a very large IPA here in Southern California. I have discovered that we see this hopeless attitude even in this type of telephonic setting. I had a case referred to me where the patient had been diagnosed with Stage IV ovarian cancer 7………… yes, 7 years ago. I found her story to be fascinating and she had asked for a case manager to assist her in finding a new oncologist. She explained she had been in remission for some time then recently the cancer was found to be growing again. She was new to our medical group and had just been told by the new oncologist she had been referred to, that her time was very limited and there was not much he could do for her. She told him she was not done and wanted to fight but he offered no encouragement. She was accessing case management to be referred to a new oncologist who could offer her continued aggressive treatment and the hope to forge ahead and continue fighting. I did arrange for a consult with a new, more compassionate oncologist and the patient met with her new doctor and again resumed treatment with some very toxic chemotherapy. She continued treatment for about another 6 months and then decided it was not worth the side effects to continue the fight. I believe as medical professionals that we have an obligation to support our patients in their choices of treatment and we certainly have no right to discourage them from doing everything they wish to survive when they still have a chance.
Absolutely. Not a single one of us can tell you the day, hour, or even exactly the way it will happen. All that should be said is that it’s going to be a battle- get ready to hang in there and fight! Prepare for the worst and fight for the best. It’s not our decision to make for them nor our edict to proclaim.
I was in my own doctor’s office, and told him I’m on the front end– working with patients to help them control their diabetes. He said that there are some people who are just not able to be helped, and how are we going to support them in the face of an aging population? I have seen this too, so I understood his point. However, the principle that medical professionals try to save life and health as the first and primary response has served us better than the alternatives. Having worked in nursing homes I am not in favor of prolonging natural death or keeping people alive regardless of quality of life– but Marcy’s post is inspiring. Thank you, Marcy.
Having been a critical care nurse for the majority of my 37 years, I can attest to the fact that we are in the business of saving lives and not letting go until the patient finally does. We continue in our efforts if there is response to treatment, until there are no vital signs lef.t But sometimes we wonder what difference all our efforts have made when treatment is finally withdrawn, IV pressors are discontinued, and nothing changes, at least not right away.From there I have seen it go both ways, down the road to recovery or down the road to final demise.