A Matter of Life (Support) or Death


After a couple of days off, I returned to work with a renewed sense of vigor. As usual, I arrived a few minutes early and checked my assignment. My eye then wandered to the patient board, and noticed that a couple of the regular names were missing. And I felt … relieved.

I’m a pediatric intensive care nurse. I work at a level one trauma center in southern California. With the latest technology, continuing research and up-to-the-minute trained staff, we treat some of the sickest children on the west coast … so it’s not all smiles and balloons. We manage children, who have temporary organ dysfunction, with medicines, machines and therapies that sustain or mimic the brain, heart, lungs, stomach/intestines, kidneys or skin until the organs recover or can be repaired. We all live for that moment when a patient is able to transfer to the floor, or go home altogether.

However, sometimes we get children in the PICU who are just dying. Not in the vague, kind-of sick, “we’re all closer to dying than we were when we were born” type of dying. No. It’s the incurable, unavoidable, painful, life-support dependent, severe brain or other major organ injury, and drugged type of dying. Trauma, incurable cancers or metabolic disorders, near drownings.

Sometimes a lot of what we do in the PICU is help the parents and family begin the process of grieving and letting go. Most families do a lot of praying, and there are a lot of friends from church and community who come to visit and say their goodbyes. It can be peaceful. We can withdraw life support, let the families hold their child during the last hours, give them privacy and peace in which to say their goodbyes, providing medicines that keep the child comfortable until the end.

However, sometimes the child is just so sick that the end is very traumatic … code blues, defibrillators, chest compressions, chaos, parents keening with grief. Sometimes the parents are just so overwhelmed that even the idea of a DNR (Do Not Resuscitate, in the event of a code blue) or withdrawal is untenable. In which case, as long as the child is not clinically brain dead, we continue to do everything we can to sustain the child’s life. Even if we don’t agree.

There’s generally a lot of praying in these cases as well. And it’s generally very determined. Parents at the bedside chanting. Loud group prayers. Demanding miracles. Which leads me to wonder, what ever happened to, “Thy will be done?” Most people believe in the concept of the soul, and that we will continue to exist after death, and that generally good people go to heaven. It’s what most people live for … to die as a good person. So, what is it that moves these parents to prolong their child’s suffering? Is it fear that there is no heaven? Fear of loneliness for themselves? A need to cling to the barest scraps of life? I don’t know, and I can’t really judge them. I just wonder, and hope to provide as much comfort as I can.

As for myself, I’ve already had the talk with my parents and siblings. None of us has any desire to live on machines in the event of a terminal illness with no reasonable hope of recovery, or a severe insult to the brain that would leave us mentally incapacitated. It’s just not worth it. Our philosophy? “I’ll see you on the other side.”

So, what are your thoughts on life support and death? Do you have an advanced directive that spells out how you would like to be cared for in case you are incapacitated? Have you talked with your family about how you would like to be treated if incapacitated? Keep in mind that advanced directives can generally be trumped by a living relative, so being in accord is important. Have you ever had to deal with making these decisions for a loved one? Do you have a will? Do you have insurance … health, AD&D, life, etc? I know it’s not the type of thing that people ever want to think about. But it’s literally a matter of life and death.

Dora

Dora is a pediatric critical care nurse. Therapy to alleviate the stress in her professional life include traveling around the world, reading, partner dancing and hosting dinner parties.

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13 Responses

  1. AmyB says:

    My husband and I had this discussion, and when I asked him what his wishes would be if something happened and he were a “vegetable”, he said “You can get rid of me.” Those weren’t the particular words I wanted to hear! I trust my family to make good decisions for me, but I think an advance directive is a good idea.

    I have a friend whose long time partner had a brain aneurysm and is in a coma. He has been for a few years now. Because they were not legally married, she has no say in his care. It is doubtful that he will ever wake up, but because of the skilled care he is under (and good insurance plan), his life could be prolongued for years. That makes it so much harder for her to move on with her life. It’s a heartbreaking situation.

  2. Caroline says:

    During the whole Terry Schivo fiasco, Mike and I both decided that it was far better to pull the plug than live for an extended time on machines or without any mental capacity.

    I haven’t made up a will or any other legal documents yet, but if I did I would put in some clause about how my family could keep me alive for 48 hours on machines but if there’s no reasonable hope for recovery, it would be time to end it.

    I actually would go a step further than other Mormons on this issue. I believe in euthanasia. If I was dying of some disease, and the only thing in front of me was weeks of pain and suffering for me and my family, I would want to be euthanized. I think it’s a kindness to end suffering.

  3. EmilyCC says:

    After watching families fight over end-of-life issues when I worked in health care, I made sure to find out what my immediate family members wanted in terms of invasive life-support stuff. This is such an important topic; I’m so glad you wrote about this, Dora!

  4. Lucy says:

    To me it seems easier to make the choice to end life support on an adult than to make the same decision for a child.
    So, what is it that moves these parents to prolong their child’s suffering? Is it fear that there is no heaven? Fear of loneliness for themselves? A need to cling to the barest scraps of life?
    I wonder if it is hope. Hope for a miracle, hope that your child will be able to experience all the joy, beauty and pain of this earth.
    My father was on life support for many months. I remember as a child hoping that he would improve, and it seemed that as long as he was hooked to those machines I could still hope.
    Thank-you for writing this and for your work.
    I also think another important discussion everyone needs to have is the issue of organ donation.

  5. Anonymous says:

    Most people don’t want to be on a machine forever. But most cases aren’t so black and white. However, I do think issues or guilt and doubt needlessly complicate things.

    In medicine we are good at elimiting all the quick ways to die. Especially cardiac defibrillators and pacemakers. The quickest way to die is to have an arrhythmia and thats it. But with an AICD, you are kinda stuck with a slow prolonged death.

  6. Anonymous says:

    Another issue is resucitating babies before 27 weeks EGA. You are almost garenteed a child with cerebal palsy/mental retardation from bleeding in the brain, or short gut syndrome from dead gut, or being vent dependent because of chronic lung disease. These kids spend more time in the hospital than at home. I don’t know the right answer but I can’t imagine a more difficult situation to manage.

  7. Dora says:

    The family is such an important part of end of life care. There are many many times when I do not agree with what the family has decided. However, health care providers are ethically required to maintain a patient as long as brain death has not been documented.

    I’m also glad that Lucy brought up the issue of organ donation, which I neglected to do. Please, be a donor. Fill out the card. There are so many people in need. This year I’ve worked with patients who have had kidney, liver and small bowel transplants, and also taken care of patient who are waiting for heart and lungs transplants. Some of the organs come from living donors, but the vast majority come from annonymous and generous donors.

    Incidentally, I have heard second-hand stories about latter-day saints being reluctant to donate organs. Something about not being able to be resurrected if your body parts are not located in one place when it’s time to be ressurected. That line of thinking sounds totally bizarre to me. Has anyone else run across this?

  8. Jen says:

    My father was put on life support after a fall in which he sustained severe head trauma. This was six years ago and he was 46. He was on life support for five days before the doctors decided there wasn’t any hope for recovery. My mom told my brothers and sisters to spend that night in prayer and that we would make a decision for him the next morning. We all came back that morning and decided we should let him go. We all felt very strongly this was the right decision.

    We donated his organs. I had never heard of any controversy in the church over organ donation. Honestly, it helped us tremendously to know that some “good” had come out of this nightmare. The notion about the resurrection seems ridiculous to me, isn’t one of our missions in life to help others along the way?

    I remember that Christmas getting an ornament from the donor program and a letter explaining which organs were used, etc. It would have been nice to know more about the lives of the people who received his organs, but I understand the confidentiality.

    Since his death, I have mostly had peace about our decision…but once in a while I’ll hear some crazy medical miracle in the news and wonder if we didn’t give that miracle a chance to happen, and if we were being selfish in our decision to let him go…

  9. Deborah says:

    I was very moved by your post, Dora. It must be emotionally exhausting to engage do what you do. Do you ever find yourself overwhelmed by watching the grief of others?

    Given the inevitability of death, I find it curious that (over the millenia) we have not better adapted to this reality. Death feels very fuzzy and far away to me. I have no children yet, but the thought of losing my husband takes my breath away. We have talked about it, though — he is very clear on my desires. (If, god forbid, I were to pass on sooner rather than later, he’d have the unenviable job of explaining to my mother my desire to be creamated 🙂

  10. Dora says:

    Deborah ~ There are times when it is emotionally draining. And there are definitely times when I shield myself from getting too involved.

    And yes, death (and taxes) are a surety of this life. I remember reading or hearing about a family having a hard time moving from the home where the children had grown up in. Maybe it was a real estate commercial? Anyway, the gist was, “We can keep the memories.” And this is how I like to think of death … moving to a temporary location, where I still get to keep the memories. And I even get back the old home, but improved, with all the broken parts fixed up. More like a remodel than a final parting.

  11. jana says:

    Deborah and others:
    Please tell me more about how you’ve come to the choice for cremation. I want to like this choice but I’m not emotionally ready for it yet. I’ve never experienced cremation as a mourner so I think I can’t choose it for myself yet, even tho it seems such a smart option.

  12. AmyB says:

    I find the discussion about burial wishes interesting. I think I would prefer to be cremated. But at the same time, funerals are really for the people that survive-so I think I’d rather have my family do what makes them happiest. On the other hand, making one’s wishes clear often makes it easier for the family to make the decision.

  13. Deborah says:

    Jana: I don’t feel much emotion over this choice — it just makes the most sense to me.

    1) I’ve never liked viewings (and that’s putting it mildly)

    2) I’m a bit clausterphobic and of willfully shutting my mortal coil in a box doesn’t sit well

    3) Black hearses, casket at the funeral service, body being lowered under ground? No thank you!

    4) I don’t connect with significance of being “buried” or having a tombstone; and barring that sentiment, it’s not environmentally friendly — so why do it?

    4) My husband’s mother was cremated, and her ashes were scattered in a beautiful place that is significant to the family. He doesn’t have a grave to visit, and yet he feels connected to her whenever we visit this place — a place with a lot of great family memories anyway.

    Death with a casket feels impossibly concrete and mournful. For my poetic sensibilities, cremation & scattering has a symbolism I appreciate.

    Of course, it’s very possible that I’ve been influenced by the final scene of Return of the Jedi!

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