WhiteCoat

The Difference Between Life and Living

The post yesterday about comatose patients made me think about why some families choose to keep their loved ones alive on a ventilator for extended periods of time.

There’s always the “lotto” hope that the patient will wake up. I have been told that there may be a financial gain by keeping someone alive since disability or SSI checks stop once a person dies.

When families are coping with the decision whether to forgo or to remove life support for a loved one, I have seen two consistent sticking points in the decision. First, families often feel that by stopping a ventilator or by failing to put their family member on a ventilator, they are “killing” their loved one. That obviously is not the case.
To get families past this idea, I remind them that if “nature took its course,” the patient would already have died. By using all the ventilator/medications/etc., we are able to “cheat death,” but we can’t do so forever. The advanced technology has allowed the patient to stay alive long enough so that other family members could say their goodbyes. But as sad as it is when someone dies, people were not meant to stay alive by machines.

The second, and sometimes more difficult, sticking point is that families want their loved one to continue “living.” If I hear this, I describe what I believe to be the difference between “life” and “living.”

“Life” is a heartbeat and a pulse. Active metabolism. Nothing more. People who are brain dead on a ventilator are “alive” because the cardiac monitor says so. But preserving “life” can sometimes be cruel. Patients kept alive in a comatose state can develop chronic bedsores, contractures, cancer pain, broken bones, infections, and other maladies.

“Living” is the ability to appreciate and enjoy life. Someone who is alive can communicate. They can savor the smell of apple pancakes in the morning, enjoy listening to their grandchild’s first words, and reminisce about watching Roger Maris hit home run number 61. Maybe it’s the wink of an eye when you’re feeling down, maybe it is only the ability to smile and to feel comfort in the touch of another, but living allows someone to interact with the world around them.

To me, a comatose patient is alive, but is not living.

Ultimately, families are supposed to make a decision based upon what their loved one would want to do if the loved one were able to make the decision. This is the question that I present to families having difficulty making the decision whether to maintain their loved one on life support: Would this person be content with life on a machine, even if it meant that he was no longer living?

What would you do?

21 Responses to “The Difference Between Life and Living”

  1. Beach Bum says:

    I have heard this described as the difference between allowing someone to die and causing someone to die. While that line may blur somewhat, I think it’s still a useful distinction.

  2. Wiserun says:

    The key is to find out what the family member wants in the first place. I’ve told my family what my wishes are, and found out what they wanted in turn. Start the dialogue, and it won’t require heart-wrenching decisions later, when the family member can’t express it his/herself. It’s no fun to talk about death and the type of accidents that can occur to put you in this position, but, please, deal with it anyway.

  3. Patrick says:

    I’ll second Wiserun, and go even a little farther: the key is to make your wishes legally binding. A living will is easy, and way, way worth it.

  4. EEJ says:

    I wanted to interject my personal experience with something similar.

    My father was diagnosed with a large brain tumor shortly after I joined the military, and I came home for a week or so to spend some time with him before they tried some more invasive procedures. The prognosis was definitely not good in the long run, and dicey in the short run.

    My father had a living will, and had clearly stated to our family members that he did not want to be kept alive by machines if it meant he could not “be alive”.

    Well, things took a turn for the worse once I returned to basic training, and I was notified that he had to be put on a ventilator to keep him alive, as my mother insisted that they try to keep him “alive” until I could return home to “say my goodbyes”.

    Without going into all of the details, let’s just say that that night was one of the most troubling of my life. Due to an airline mixup, I got stuck in Houston overnight, with no way to get back home until the following morning.

    All night long, I didn’t think as much about exactly what I was going to say to him, (we had a great relationship, there wasn’t much to say that he didn’t already know, and he probably couldn’t hear me anyways), but rather how I was going to FINISH talking to him.

    What I mean is, I spent the entire night worrying about how I would address the fact that once I had “said my piece”, I was essentially going to have to turn to the doctors and say “It’s okay now, I’m done talking, you can turn him off now”……

    I feel weird putting this in writing, but the fact that he passed away the following morning before I could get to my hometown was a relief. I just couldn’t figure out how I would “stop” talking to him, and allow him to die.

    As I said, it wasn’t much about him hearing things from me he didn’t already know, as the person I knew of as my father was already “gone”, but of course we all have the desire to have that opportunity to say things we might not have, and I love my mother for giving me this chance, even if it meant going against my father’s wishes for a short while. (After all, she was doing something for the family’s best interests, which is what he always prided himself on)

    I realize my story doesn’t really answer any of the questions at hand here, but I thought it might provide some insight into the matter from a patient/family member point of view.

  5. rlbates says:

    Very nice post and comments. EEJ– thanks for sharing your families story. So sorry for your loss.

  6. S says:

    I’ve had two personal experiences with similar situations. A couple of years ago, when I realized potentially how serious my medical situation was, I drew up an advance health directive, DNR, and designated durable power of attorney for health care who knows my wishes and I trust to respect them. To the extent that there are end of life decisions to be made, I want only palliative care.

    That was a fairly easy decision. I never realized how much harder it is when you’re making the decision for someone else. My daughter was born with metabolic acidosis. Though two hospitals and countless doctors tried everything they could, I was informed that even if she survived continued treatment, she had such severe brain damage that she would likely never even breathe on her own. I ultimately decided to stop treatment in that case and have her receive comfort care for the rest of her life (which was only a few minutes after stopping treatment,) but it was a much more difficult decision than determining my wishes for myself.

  7. Graham says:

    From my Family Medicine month:

    * On the term “life support,” as in: We would have to place your dying father on life support or else he will die tonight: We should call it “artificial organ support,” not life support. Life is something that we define as people–and all “life support” does is keep the organs in the body working longer.
    * On “Do Not Resuscitate”: In Georgia (and it seems, slowly spreading elsewhere), health care may be switching to the term “Allow Natural Death,” trying to make it known that death is a normal part of life, and that it cannot (and perhaps should not) be fought at any cost.

  8. Nurse K says:

    “Allow natural death” seems to include any and all treatments, including medicine. I like DNR/DNI better, makes it more clear where the line should be drawn.

  9. I once had a VA patient who was was on the verge of death.

    And all the family could tell me was, keep him alive past midnight so they could collect his VA benefit check for the month.

    It made me sick.

    He didn’t make it past midnight.

  10. Jersey says:

    THH: I agree: heartless and sick.

    IMHO, let me die. The more you let me live, the longer the heartbreak remains and the harder it will be to get over the agony once the machines can no longer keep my body going. That’s why I loved “Million Dollar Baby”, that is why I supported the death of Terry Schiavo (despite my reservations about her cheating husband).

    Plus, if you were Christian or something, why would you prevent your loved one from finally meeting their Creator?!

  11. Erik says:

    Odd fact of life:

    The nicer the heaven, the less any family member wants their relative to go there.

    People think some miracle is going to change the situation. It’s illogical, it’s cruel and it makes no sense. But that is what people believe.

    I use the phrase “the person you know as X is no longer with us, this is his shell.”

    It is what I believe to be the truth.

    I like this and may add it to the explanations I give to families. Thanks for sharing.

  12. smd1985 says:

    I am a nurse in a PCU and deal with this on almost daily. I alway wonder who the family is keeping the patient alive for. Sometimes I can understand it when the family is actively involved with the patient(regular family visits,pics on the walls,cards & letters). But I care for so many people who NEVER get visits. We keep them alive for what? They live in a limbo, not dead but surely not alive. Death is a naturalthing we are born and then we die. I truely believe that God takes us when it’s time. We can go peacefully with dignity or go clawing and fighting but we all go in the end. It’s better to make the death a good one for everyone. It will always be sad, but they have to be in a better place.

  13. msh says:

    I’ve been working in ICU for many years…in my experience the more papers people have saying what they don’t want…the more gets done to them. Am I the only one who sees this?…. Its all up to the family anyway, no matter what is on the papers. I tell families of dying patients that they are not “making the decision”..they are “carrying out the decisions that X has already made”

    Also that if they are waiting for God to intervene or a miracle…not having a ventilator isn’t going to prevent THAT.

    I see this frequently. It puts the healthcare providers in a difficult position. When patients are near death, unfortunately some family members don’t think quite as rationally.

  14. Beth says:

    I’m in the NICU this month and today was just a crap day – we had two patients succumb to their illnesses. With one patient that I had been directly caring for since her exit from the womb two weeks ago, she had been circling the drain for days – more acidotic, bacteremia, escalating vent settings, etc. Her parents were fixated on the fact that if we got her blood infection cleared, she’d be ok. Problem is, she has VATER sequence and underwent intestinal repair on the first day of life and in addition to her significant intestinal anomalies, she’s in liver failure. We sono’d her head today and she’s got bilateral grade III IVH – much worse from 10 days ago and explains where all the platelets are going.

    We’ve been letting the parents come to terms with this on their own – not pushing them to make a decision about continuing care. However, when the morphine doesn’t work and her brain and lungs are giving out…there’s really nothing else we can do. After updating her mom again today, she actually asked us how we would “do it” if they decided enough was enough.

    Tonight enough was enough for their little girl.

    It sucks. Hard.

    I’m in pediatrics so it may be different, but what many attendings I’ve worked with do is similar to what we did for this patient: present the evidence but don’t give false hope. Be open and honest and let them make the decision. Also, keep them well-informed. Often the more people you have talk to them to keep them apprised of what’s going on (nursing, subspecialists) will make them feel comfortable with what’s going on. It doesn’t make it any easier but I think families feel better knowing they made the decision to stop care rather than having it made for them.

  15. Peggy says:

    I’m not convinced that people who are out of it and clearly dying aren’t sometimes somehow aware that machines are keeping their blood pumping and their lungs breathing, experiencing pain despite narcotics, and aware that they are being held captive in their dying bodies and desperately not wanting that. And why would any anyone think that such a person, no matter how much he/she adored his/her family and friends really care what they have to say at this point?

  16. Dr. Greenbbs says:

    Just had to deal with this the other night.

    Had a John Doe come in to my ER, found in PEA in a snowbank in his parking lot of the condo complex he lived in. Was walking the dog, and was found by a neighbor, after an undetermined amt of time.

    EMS tubed him and after 2 or 3 rounds of resuscitative drugs, we got him back in sinus. Well, we didn’t have any information on who he was. He didn’t have any ID, wallet, or anything. Initial labs weren’t very revealing other than mildly elevated CKMB and Myoglobin (trops were normal at the time). So, after a less than eventful central and a-line placement, he journeyed to our ICU.

    Found out that a couple hours later, the family was located and they d/c’d full support because they knew he didn’t want to go on just functioning. Turns out this guy was a WWII and Korea vet. Lived a long and full life.

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  19. Heathen says:

    It’s exactly right that you don’t want a family member to feel responsible for “killing” a loved one. The way I phrase it is “Discontinuing ineffective treatments.”

  20. Mama On A Budget says:

    It’s a hard decision to make, but like others have said, knowing the patient’s wishes before the medical crisis helps SO much.

    I’m an only child of a single parent. When she had a stroke – and then lost part of her intestines when they became incarcerated in a hernia, resulting in dehydration (and then heart) issues – as hard as it was, I knew her decision was DNI/DNR/”no heroic measures.” As her POA, I could have said anything I wanted to keep her “alive” for my own selfish reasons. But even though doctors and surgeons fought me with “but she’s so young!” when I refused intubation and cardiac catheterization tests, I knew I was doing what she wanted (and, thank God, she had a primary physician assigned to her in the ER that stood up with me against the pressure to “test and try” to extend her life.

    Getting the call that she died was one of the hardest moments of my life. I still remember exactly where I was standing when it came… three houses ago. But I also know that her constant 1-2 week cycle of being transferred from nursing home to hospital for dehydration, organ failure, heart attack, another stroke (?), back to the nursing home and repeat… for her that hell was over and she was at peace.

    And as much as I hated giving the orders to stop/not start all the tests, it was also freeing in that I knew they weren’t MY orders but HERS.

  21. sigh says:

    I am chronically in pain and haven’t enjoyed life in a decade for any reason. So I guess I am not living (I’ll agree).. not sure anyone would put me down though

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