Death in a hospital is not always comfortable

In America, too many people die in the hospital.

I don’t mean that they die due to medical error or incompetence, though that’s always a hot topic of discussion amongst doctors, researchers, administrators, and regulators.

What I mean is that if you ask most people, they say they’d rather die at home, surrounded by their loved ones, drifting off to sleep painlessly after having had last rites administered (feel free to plug in your religious/atheistic ritual of choice here).

Why, then, do so many who want this type of death instead die medically, here in the hospital, undergoing painful treatment and the deprivations and degradations of medical care?

The answer has both simple and complex aspects. But I’ll start by sharing something that most medical professionals believe:

When my time comes, the last place I want to be is in the hospital. Don’t get me wrong–I like GlassHospital–it’s a good place to work, teach, and learn. But when the grim reaper is calling my name, I want to be as far away from here as I can.

No IVs. No needle sticks to test my blood. No waking me up to check vital signs every shift. No hospital food. No fluorescent lights.

No feeding tubes; no bladder catheters (ouch!); for Heaven’s sake, no breathing machines (‘mechanical ventilators’).

These technologies have allowed us to extend life, by keeping people breathing and metabolizing as long as the heart can pump (we can even take that over for some time with machines now).

But what they don’t do is keep us alive in any meaningful way. I’ll admit that this is a judgment call, that how you define meaningful is the key element. Because what I think is not meaningful life, being strapped to a bunch of machines keeping me alive, is very meaningful to others. Alive is alive, no matter what people like me have to say about it.

There’s a big disconnect between what health professionals see and what people not in the field perceive about death. Presumably, for folks not ensconced in our world, a lot of death imagery comes from TV or the movies.

The simple reasons that people die in the hospital are:

1. Some people prefer it. Battlers to the bitter end.
2. (For those that don’t prefer it:) They aren’t empowered to do it any other way.

This second group is the one for whom death in the hospital is a shame. And though we’re getting better at comforting the dying, hospitals (believe it or not) are just not set up to deal with the dying process very well.

Hospitals are like giant factories where all the focus is on process: diagnosing, treating, rehabbing, and discharging. Death, while a natural endpoint, is still too frequently viewed as medical failure. Nothing could be further from the truth.

I’d like to empower the folks in that second group, and especially their family members and loved ones, who will be called on to help with decision making, to take the initiative and die at home. Or in hospice. Or on a mountain top in bright sunshine.

How can we do that?

Verbalize what you think you want. Write it down. Share it with your family and friends. When your time comes and you have a life-threatening illness, push your doctors to be candid in their appraisal of your chances for recovery or the imminence of death.

Here’s the other thing: You can change your mind. If you become old and feeble and decide that you want to fight until the last breath is taken from you, you can. And in fact, this happens a lot.

But having these discussions for the first time when you’re at death’s door is a surefire way to wind up dying in a way that you probably never envisioned.

One last note: Though I and most of my colleagues want no part of this place when we’re dying, you still have every right to come here and use our services.

We really do want to honor your wishes.

John Schumann is an internal medicine physician at the University of Chicago who blogs at GlassHospital.

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  • Regina Holliday

    You forgot to mention inpatient hospice as an option. Death at home can be very stressful for a very ill, yet lucid patient. In patient hospice gives the added support of professional staff to assist the family in caring for the patient without the unnecessary vitals checks and extra tests.
    -Regina Holliday

  • Ann Marie

    I think if I were dying from cancer I would want to be in a hospital because I would have quicker access to pain medication with a pharmacy right down the hall.

    I wouldn’t trust my family, or anyone without a medical background to procure or administer pain medication in a proper or timely manner. Even with hospice, it’s not like you have these nurses in your home 24/7.

    Having witnessed the agony of someone slowly dying from cancer, I would personally like to be put in a palliative coma until the end. I don’t think it’s legal here, but that would be my wish anyway.

  • Anonymous

    One of my friends died of pancreatic cancer last year, at home. She had excellent pain control via hospice and a pain specialist.

    She told me no matter what, she didn’t want to go back into the hospital.

  • Jake

    Ann Marie says that she would have quicker access to pain medication with a pharmacy right down the hall and consequently if she were dying from cancer she would want to be in a hospital.

    That may very well be true in some cases, but if my experience with post surgical pain relief (or lack thereof) is any indication, Ann Marie should not count on it.

  • Valerie RNP

    When my Mom was making her “grand exit” from liver CA, she chose to die at home with Hospice support. I functioned as her main caregiver. Pain management was not a problem. I made damn sure she was never in pain. Sublingual morphine was PRN. My only criteria was ~~ Mom asked for “something” , or looked like she could use “something”. At first, out of habit, I kept accurate notes of when each tablet was administered. After awhile (and exhausted myself) I became very lax at record keeping.
    I stopped being her nurse practitioner, and became her loving daughter.

  • Trious

    It really depends on the situation

    One friend who died of pancreatic cancer wanted to be in the hospital because it allowed her access to medication/doctors

    Another didn’t want to be anywhere near one and preferred being with family.

  • visibility9

    Sometimes dramatic symptoms start to occur at home like say dysphagia and the poor family gets terrified and the paramedics end up being called. From there. a swallow study is done, a “feeding tube” is ordered, the no intubation request leads to constant noninvasive ventilation, the well meaning night staff wants an order for PRN NT suction, a scopolamine patch behind the ear, etc. When it is my time, I am going to tell my pepes what to expect but I still cannot stand the thought of my own children cleaning me up-my kids jokingly tell me when I outlive my productivity, they will ship me out to sea on an ice floe the way they say the Aleutians did-and hey, I think they’re on to something there.

  • Anonymous

    >>One friend who died of pancreatic cancer wanted to be in the hospital because it allowed her access to medication/doctors>>

    My friend who died at home of pancreatic cancer definitely had access to her medication.

    She did not want her oncologist – who was annoyed that she refused further treatment, after she fought hard for over a year and finally realized she wasn’t going to survive this – to have access to her.

  • Anonymous

    I did have a long answer to this, but after rereading it, I feel there is not much more I can add.
     I have worked at both a hospital and hospice and agree with all this author has said.
     Families in particular need to educate themselves on the role of each facility, including the home, as a place of dying.
     Honor the dying persons wishes even if you would not have chosen that route yourself. 
    Above all, if you have a grudge with anyone, get it settled now, before you are faced with that persons death and the guilt feelings pile in. This will make it easier to let go.

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