How we die should never be taken lightly

It was another day in the intensive care unit. The night was clean and calm, ventilators beeping their expected  melody, and the laborers of medicine went about their night shifts uneventfully, including me sitting with the obnoxious admission pager attached to my hip. The smoothness of it all shattered when the beeper started screaming – I picked up the phone and soon the emergency room physician was on the line.

“We have an old lady with potential sepsis for you – fluids are going right now,” the voice said.

“What’s her blood pressure?” I asked reflexively.

“80/50 and still unstable – you should come see her soon,” the urgency in that voice was unmistakable.

I scoured the patient’s information quickly from the chart before heading to the emergency room, as I usually do, and registered a repeated past medical history of an abdominal aneurysm that had never been fixed. Her name was Dorothy, a name that is endearing today and would have been very fashionable in the 1920′s. Dorothy lived in a nursing home for the past few years, with multiple hospital admissions becoming increasingly frequent in the recent months. Her stage 4 pressure ulcer was unrelenting, undermined by severe malnutrition demonstrated by an albumin level of 1.5. Her white blood cell count was not elevated, but infected older patients do not always present with leukocytosis. From the chart I braced myself for the harsh reality I was about to encounter, knowing her chance of leaving the hospital alive was poor, and with a heavy heart went to find Dorothy.

I pulled the curtain aside as I stepped into the room and the commotion around Dorothy was jarring. The monitor was unhappy with a blood pressure of 80/50 and it made its discontent known, loudly. Nurses ran in and out, starting new intravenous access, hanging more fluids, everyone fumbling all around except Dorothy. She was in a hospital gown but the blanket had fallen by the bedside, revealing her lower naked half with a foley bag lying nearby, draining not a drop of urine. Her arms and legs were skin on bones, her face gaunt with wispy hair, all combined to make her the life-sized version of a skeletal crypt keeper from horror movies, except the only horror in that moment was in Dorothy’s eyes, staring blankly at the ceiling.

She was agitated, scared perhaps, confused most certainly, her arms flailing wildly for something invisible that may save her life. She moaned, yelped, then screamed a cacophony of unsettling fear and panic. I grabbed her grasping hands and soothed her, uttering something vague like it’s OK – not so much to say that life was there to stay but more to acknowledge that it was perfectly normal, expected even, to be scared. I searched for a family member, someone more adept at calming Dorothy than me, but I found no one.

Then something horrible happened. Dorothy’s blood pressure started plummeting right in front of our eyes, systolic down to 70, then to 50, blood surely pouring out of her aorta into abdominal compartments. It became clear that her aneurysm had ruptured, catastrophically, life literally seeping out into her abdomen. The family, informed prior of what believed to be sepsis in Dorothy, mistakenly thought that they would have time to come visit her in the morning. They were promptly called again, this time notified that Dorothy was actively dying, a surgical repair of her aneurysm unlikely to be successful considering her frail baseline. Everyone was thankful that her family decided to stop all interventions knowing they were futile. Her son said he was rushing in then hung up the phone.

But Dorothy was already dying – I knew none of her family members would make it in time. I looked at Dorothy, left in the wake of the ravenous medical efforts aiming at postponing death, and there was not an ounce of dignity left in her being. Her gown was pulled aside, revealing a stomach dirtied with gel used for the bedside ultrasound. The foley hung lifeless between her bent legs, IV kits and needles strewn around like candy wrappings, wires attached to EKG leads tethering her soul. Dorothy was no longer flailing, her body now without the necessary blood to fuel the bodily expression of the fear within.

I picked up her left hand and held it, making a mental note to stop in that moment for Dorothy and witness her death, in an attempt to add what little dignity I could to this horrible chain of events. My intern looked at me, then proceeded to hold  Dorothy’s other hand. Everyone else, the emergency room physicians and nurses, moved on out of necessity to other sick patients, all but one who returned with clean sheets to cover Dorothy, hopefully leaving her presentable to family members.

As Dorothy’s heart slowed down and I held her lifeless hand, I could not recall a more horrible death other than a trauma case in medical school, a 12-year-old girl crushed by a school bus bleeding out every orifice. No one can predict death, but looking at Dorothy’s chart one would guess that death was near – odds are that a malnutritious, demented, immobile body ravaged by stage 4 pressure ulcers would not survive increasingly frequent hospital admissions. I wondered if anyone ever mentioned to Dorothy or her family members that death was coming, that they should prepare for it, sooner rather than later.

Sometimes fear of death is so blinding that we forget to think about how we want to die. Other than certain suicides, we have no control over when we die, even though postponing the moment of death is what medical care is focused on. The only aspect of death we mortals could dictate, given enough thought and preparation, is how death will take us. The spectrum ranges from Dorothy to a peaceful death at home surrounded by love and familiarity, expected and prepared for.

I remember reading a survey reporting that most people wish to die at home, although in reality only the minority of people do. I wonder if it is because we become so afraid and occupied, speculating how to fend off death, that we forget death is certain, a natural twin of life, something that can only be fended off for so long. I wonder if people know that hospitals are a horrible place, that once you enter it can be difficult to leave through the front door. I wonder if people know that Do Not Hospitalize is an option. I wonder if people know how to plan for death at home – I certainly do not. Of all the wishes in our lives, the wish for how we die seems as important as any, something to plan for deliberately and carefully.

The line on the monitor went flat and still Dorothy was alone, two strangers holding her hands. The nurse stared at me expectantly – I pronounced the time of death as she left to gather paperwork. I wanted to stay and find out where people go after they die in the hospital. Who pick up the body? Are they put in a body bag? Where is the morgue? I wonder if other doctors know the answers – patients stop being ours once they are dead, even though they remain as human as ever – before and after, especially during death. How we die should never be taken lightly.

“angienadia” is an internal medicine physician who blogs at Primary Dx.

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  • Margaret Kim Peterson

    What a horror. When my husband’s health problems became clearly uncurable, we chose not to hospitalize, and opted for hospice at home, precisely because we knew that the alternative was something along the lines described above. Notably, the doctor who helped us to discern this was a friend, not one of our professional caregivers. It’s not just “people” who don’t know how to plan for death at home, it physicians themselves who don’t know how, or who don’t feel they have permission. Our decision came two months ago; my husband is still living, “surrounded by love and familiarity.” And it is hard. It is hard to live with a dying man in a hospital bed in the living room, and to feel the tide ebbing out a little further every day. It is even harder when the dying person is young(ish–he’s 51), when he’s not done with significant things like parenting (our son is 11), when everything about him is vital and treasured. So a good death is not easy; it’s just different from–and better than–death by medical torture, as described in this article.

  • Molly_Rn

    As an ICU/CCU nurse, I can’t believe that it took so long for someone to cover her up so that she might have a shred of dignity left. Thank you for staying with her and holding her hand. Touch is the last thing we loose and it is a comfort.

  • Monique Colver

    Death is hard, and we do avoid it, even though it’s a certainty. We just don’t know when, but we know it’s coming. I’ve been a hospice volunteer, and I sat with my mother as she died, and my ex-husband, both of them at their homes, under the care of their families. We don’t like to talk about it, as if not talking about it will make it not happen. That works about as well with death as it does taxes.

    Thank you for staying with Dorothy and holding her hand — sometimes that’s the very best we can do for the dying.

  • Bart Windrum

    I think that it’s not so much that individuals in society take death lightly as not at all. It’s so huge an event, with such a myriad range of run-ups and systemic complications in our society that we don’t know where to begin to wrap our minds around the practicalities of how to, maybe, die in peace. Actually, to increase our likelihood of maybe dying in peace. I’ve done some work around this; feel free to google me if interesting in knowing more.

  • Rhiannon Gamble

    “ravenous medical efforts aiming at postponing death”
    I watch people die like this often. I also, unlike the author, do know where they go next. Into a bag, into a gurney that looks like a big laundry cart, and into a fridge. I wish everyone knew all of this. It would probably go a long way towards getting people to plan ahead with love and dignity and comfort in mind, knowing what happens after a patient’s final moments.
    Kudos to the author for the handholding. I do it too.

  • James Sinclair

    I greatly appreciate your presence as Dorothy passed. I struggle with understanding how so many people including doctors, nurses and family members failed to see this coming. It seems schizophrenic to opt not fix an aortic aneurysm but remain a full code. At least a patient with an LVAD at our institution must be a DNR. There is no heart to resuscitate! We all must keep trying to bring our human-ness to this precious moment.

  • Misty Huntley

    It was so sweet of you to stop, take a moment, and think about just how Dorothy may have been feeling during those last moments. I am sure that she was scared as she crossed over. You will be blessed for your humanistic candor.

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