On the other end of the surgical ICU, around the corner from where my patients are, Mrs. Jones is dying. I do not know about her illness, but over the past few days I have heard talk on the unit. The doctors have encouraged the family to withdraw care, but they have declined. Nurses often feel that doctors are far too hesitant to give families the bleak assessments they need to hear to prepare them for the end. Patients languish for months slowly declining while the doctors continue to throw out threads of hope for the families to cling to. One after another these threads inevitably break. Complications lead to more complications. One infection is resolved and another takes its place. When death is immanent and all that can be salvaged is the illusion of control is the time when the doctors usually encourage the family to accept the inevitable. The nurses have often known for months how the story is going to end, but they have to keep quiet. We bear the burden of maintaining the weeds false hopes that have been planted by television, watered by doctors and fertilized by incomplete information. Families visit wanting only to hear good news and we try to oblige. Inside we suppress strong urges to tell them to wake up and smell the coffee. If we could speak freely we would tell them that they are only making their loved ones suffer. All they are giving their mothers and fathers, their spouses and children is a miserable, painful death. But it is not our place to speak like this, and besides you never can tell which one out of a thousand will be an exception. Even the exceptions, though, hardly ever make it home.
So when the families are not listening to the doctors and are pushing ahead with hopeless care, as is the case with Mrs. Jones, the nurses really start to get agitated and people start to talk. In the break room I hear the fellow being asked about end of life care. She relates a story of a young man from a tight-knit Latin American family who was brain-dead. The family had brought him from another hospital for a second opinion, but the news was still the same. They begged for an experimental treatment. “Can’t you shock his brain back to life?” they had asked. The man was already dead, but the hospital maintained his body for several more days to give time for the family to digest the situation. They declined organ donation. The fellow felt at peace with her role in this and indicated that Mrs. Jones was a similar case. We were maintaining her to give the family time to adjust. She was not brain dead, but was probably still beyond much of the suffering. And there are always narcotics for pain.
In the afternoon the respiratory therapist sits at the computer next to me charting and looking up labs. “Look at this one.” she says to me, “Nothing I can do about this.” An arterial blood PH of 7.01 tells the story of rupturing cells, failing kidneys, clogged lungs and certain death. The heart will not continue to beat in such an acid environment. Normal PH is 7.35-7.45. Anything below 7.20 is critical. The charge nurse, Betty, has come to ask us for updates on our patients and Mrs. Jones’ nurse, Rachael, seeks her out to talk with her away from the family. Rachael is one of the more experience nurses on the SICU and has been given this sensitive assignment out of faith in her good judgment and sensitive bedside manner. She only has one patient today. With a sly, mischievous smile, Rachael asks the Betty quietly, “Do I bathe her?” Betty is taken by surprise and draws a quick breath. Her face shows love for Rachel and exasperation. This would be the infamous ‘death bath’ where the patient’s condition is so tenuous that she will not survive the turning of her body that is required for changing her sheets. “Well, how bad is she?” asks Betty. Rachel replies that the bed is totally soaked. Without making a decision, they begin to talk about the code we are all dreading. Another nurse joins the conversation, “With her belly open like that, her guts are going to spill out on the bed when we do chest compressions.” “What about medical futility?” I say – physicians are not required to offer treatments when they have no expectation of any positive effect. Betty replies that there would probably be a lawsuit if we did not code Mrs. Jones. “But that is not the real reason. The family needs to see it. They need to feel that everything possible was done.”
On this day one of my patients has moved out of the SICU to a step-down unit. The patient is moved in their own bed and the clean bed from the room they have gone to is brought back to the SICU and kept in the hall until the previous room has been cleaned. My room is clean now, but I chose the wrong spot to leave the bed and my bed has gone missing. With the excuse of going to get the number for Bed Supply I walk around the corner to have a look at Mrs. Jones and her family. I am almost there when I hear the warning alarms go off. I am next to one of the central monitors and with a quick glance I see Mrs. Jones’ heart beating its last. I rush back and shout around the corner, “Its time!” Rachel and Betty are already on their way. We head to the room which is by now full of busy nurses and doctors. Rachel dives in and takes up position at the head of the bed. She knows the IV lines and will push the drugs. Betty stands at the back of room, near the doctor to coordinate. The respiratory therapist is at the head of the bed. She has taken the patient off the breathing machine and is ventilating her with an ambu bag. One nurse rushes to hang IV fluids on pressure bags as Rachel dials up the meds that are already running on the IV pumps, increasing the doses. Another nurse mans the code cart, pulling out meds and handing them to Rachel to be pushed. I notice that no one has started the code documentation, so I grab the manila envelope and start. I record the meds that go in, the CPR, the fluid, the respiratory information and the heart rhythms. Nurses, techs and doctors take turns at chest compressions. The saying is that if you are not cracking ribs, your compressions are not effective. Mrs. Jones’ guts do not spill out of the 2 foot long, one foot wide incision in her belly. The surgical attending physician is in the habit of reinforcing the dressings with an OR towel and this pays off again. The brown cellophane suction bandage stays in place on Mrs. Jones’ huge swollen abdomen. Her large breast stands straight up and by its color it appears to be full of blood. The suction tube from Mrs. Jones’ stomach is full of dark red blood; her body is so full of fluid that her skin is taught all over her body and drops of yellow fluid ooze out of every pore. We continue the hopeless drama, but everyone is sincere. It is more than an exercise. We are not just drilling. The family huddles at the back of the hall and we are showing our hearts. We are doing everything we can. Meds are given every two minutes; Epinephrine, Bicarb, Atropine, Calcium, Vasopressin, over and over. We call out to each other so that we all know what has been done. “Anything else we can try? Should we give Magnesium, doctor?” “Alright, one amp of Magnesium.” Comes the reply. The defibrillator is in place, but there is no rhythm. There is nothing to shock. This is not TV and we all know there is no point in shocking asystole. We will not do it for the gratification of the family. Every few minutes we pause to check for a rhythm. After fifteen minutes, long after severe permanent brain damage is certain, we see, to our dismay, something on the monitor. How much longer will we have to put poor Mrs. Jones through all this? “Is that sinus brady?” someone calls out. “Is there a pulse?” I call out. There is no pulse, no blood pressure. I mark down PEA (pulse less electrical activity). After another minute the fellow calls the code. A young man, whose mind appears younger than his body by his affect rushes in from the hallway. “Don’t leave me Mommy! Don’t leave me!” In the hallway the other relatives begin to weep. Someone yells, “Get a gown on him!” Mrs. Jones has an antibiotic resistant bacterium we are trying to stop from spreading. The son, overwhelmed in his grief, still pauses submissively as we tie the gown on him. You can see he has appreciated our efforts. As usual, no one bothers about getting gloves on him which is really more important than the gown. We tie up loose ends and disperse.
A family’s fresh grief moves everyone in spite of the inevitability of it all. A more jaded nurse mutters “Jesus Christ!” trying to shrug it off. We all feel like being quiet. Some people pair off to talk about their feelings and how it all went down. Tomorrow it will be something else.
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5 comments:
Leo,
A remarkable post, and a potential object lesson for families who, in spite of all advice and in the face of all reason, persist in demanding that the health care team "do everything" for their irreversibly dying relative.
I am currently researching legal and ethical issues surrounding medical futility decisions. May I quote this post in my report?
Thank you. Yes you may quote my post. My more recent posts (Let Me Go, More on Mrs. Hardy) might also be of interest to you. Could I get a copy of your report when it is ready?
Yes, those other posts are also appropriate. Thanks.
We're at the conceptual stage right now, so the report may not be ready until early next year, but you'll definitely be on the list for a copy.
Keep up the good work.
That's all too familiar. Shaking our heads and muttering to ourselves about the whole useless show we just put on mainly.
Im researching legal and ethical issues on DNR/DNI and medical futility for my masters. I would also like to see your report Makarios.
Just finding these posts and reading through them. That's a difficult situation to be in, but I am surprised. I would want for my loved ones to be first and foremost in treatment, not putting on a show for my sake, especially at the expense of the patient. That's horrible.
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