End of Life Care

I morbidly joke, usually on my ICU months, that when my time has come, I'm taking my morphine and going on a long hike.

The way we treat end of life care in this country bespeaks a discomfort with death that is bad for the dying. My jokes aside, ICU patients are often there for unexpected catastrophes: muggings, subarachnoid hemorrhages like time bombs in people's skulls, car accidents. That these people are alive is a medical achievement of high order.

However, as Buckeye Surgeon notes, the return on our investment is somewhat less than miraculous. After these catastrophes, despite our ability to image the smallest blood vessels in the brain, and measure a gazillion-and-one physiologic parameters, we rarely are able to restore full or even almost full function. As a pediatrician I was shadowing once said to a patient, 'we can fix some things, but if you fall on your head or neck, we can't always fix it'.

For families, this presents a problem. Some don't care; they bring the social security benefits form in for their comatose relative to 'sign' with an X so they can collect a check. Others are in the ICU room for days and days, monitoring tiny changes in progress. My wife blinked. My mom moved her toe when the doctor yelled in her ear.

I think we need a frank discussion in our society that makes it OK to transition to comfort cares. Hospice docs have long held that allowing a failing body to expire on its own is more comfortable than prolonging life. Gradually failing lungs raise CO2 levels and essentially sedate the dying patient. Procedures to monitor ICU patients, on the other hand, are often painful--bladder catheters, arterial catheters, needles, ventilators.

Don't get me wrong--these are life-saving advances. But when it becomes clear that the prognosis is poor, it should be easier to say, 'enough'. We need to face death and accept it, not hide it behind sliding glass doors and curtains.

0 for 3

I'm something of a black cloud.

3 times I've participated in resuscitations, 3 times the patients have shuffled off. It's been a watershed for me, the stepping forward, getting on the step ladder, and performing compressions. 90 percent of my thought is, 100 per minute, allow for full recoil, 100 per minute...10 percent is a sponge for death.

In the first resuscitation, we preserved dignity with our demeanor on his passing. Dignity in death, I now think, is not a function of tubes, or wires, or excreta, or the state of the body. It seems rather to be a state of the event. I've talked about the first loss before, a middle-aged man stabbed in the chest after bumming a ride. Twenty minutes out from the event, he arrived with a penetrating left chest wound; we opened the chest, plumbing for the heart, in the trauma bay. Heroic efforts would likely only have been successful if we had seen him get stabbed and immediately rushed him to help. Nevertheless, all that could be done, was.

I remember, after time had been called, the silence. The team set this. The team decided there was not space for idle chatter. I laid a hand on his knee before leaving, some attempt at communion. We didn't say a word following for what seemed like minutes. When we did talk, the chief's thought was to examine what we could've done better. He didn't speak of anything else for a good hour, and spent time just staring off even if others were talking.

There was a tacit understanding that the work we did was in the service of the patient and those to come which lent the event the dignity of respect. I hope it would've been seen that way by observers.

The third time, the dignity of passing was set by the observers. Death came sprinting down the long hallway of the ED in a wheelchair, nurses trailing behind, mouth open. She spewed up, yellow and frothy during CPR as we worked, knowing the futility. She had aspirated; her thin limbs spoke to her age, to long illness. Dry, papery skin and bones barely concealed underneath a patina of muscle. The success of CPR for non-responsive cancer patients is next to nil.

As I got down from the CPR step-ladder, her husband and son looked on. Both were seated, almost as if at a visitation; both were quietly crying. Not screaming. Not wailing. Not blaming. I can only guess what they were thinking, but their faces and attitudes bestowed upon their loved one all the dignity of her life until then. The resuscitation--messy, smelly, primal, and filled with the excreta of decay--was but a passing blemish. They were witnesses to her passing. The son and father accepted the gentle apologies and sympathies of the staff as they passed, and remained sitting as I left.

Dignity is in the spirit, in the mind, as well as in the body. Right thought and intention can overcome the bald shock of the body in death.

Trach, PEG, SNF

"So, someone like this, who is already on the borderline of having her husband take care of her at home, with a major cerebrovascular incident, it's unlikely she'll be back...it looks like she's headed for", count them off on fingers, "trach, PEG, and SNF".

As in a tracheostomy, because she can't breathe, a PEG tube, which allows us to dump food directly into her stomach, and a SNF, or skilled nursing facility, which some used to call nursing homes.

She can blink, but can't tell her right from her left. She easily coughs with the whole-body-but-silent cough of necrotizing pneumonia on a ventilator; the sound doesn't come out, but all the lines on the ventilator go crazy. When she came in she couldn't even move; she was in a seizure that wouldn't let her move that lasted forever and a day. Status epilepticus.

She has infarct upon infarct upon infarct in her brain, three, layered, all of which could result in her waxing and waning weakness on one side; one way it is described is as an anamnestic respose, literally an 'unforgetting' that the brain engages in when put under stress. Old strokes become new again.

I keep wondering where mercy lies. The triad, the trach PEG SNF triad, an epithet, a plan, an epitath--would I want to be kept alive? Are these still people who can live meaningful lives? The same question comes up again and again for the 30-yo in an earlier post, off ventilator, on ventilator. He's strong, responsive, too. He can open his eyes sometimes, squeeze fingers, communicate. He was trached and PEGed today also.

The choice to withdraw care is somewhat like the choice to have an abortion. People who haven't stood in that circumstance can't know what it's like, and that includes me. If it were my parent, or aunt, or uncle, or spouse, I might want to keep them alive as long as humanely possible and longer. If it were me, I might be more cognitively aware than I thought. Would I feel trapped and ready to go, or would I cherish every flicker of light I could see through the skylight of the intensive care unit?

I guess we'll have to wait and see. My only advice from three weeks of seeing people vanish into their own bodies is that judgement on any decision about end of life care is not something to be taken lightly. Someday, we all might be trached, and PEGed, and SNFed.