Losing a patient in home nursing

Pediatric Critical Care Columnist · Jan 30, 2015

Welcome to allnurses.com, Sarah. I'm so sorry that your very first post here is such a sad one, but you've come to a good place for support. The first patient we lose is always the hardest, most painful experience of our lives to date. We've all been there and we all remember it like it was yesterday. Please don't let this hold you back from developing relationships with other families; you'd miss out on some very special relationships that would feed your soul and make the lives of others better at the same time. It's important to grieve these losses, but not allow them to take on a life of their own, if you know what I mean. We nurses are in the second circle of grief, close but not part of the family. It's human to feel the hurt as long as we are able to then move on. Gentle hugs to you.

Gooselady, BSN, RN · Jan 30, 2015

You made a huge difference in the lives of this little girl and her family. You did a good thing :) And now let yourself grieve, just like if you lost a family member or friend. There are no 'shoulds' for nurses to grieve 'differently' than anyone else, though you might get a different opinion than that if you ask around. Nurse's are peeps too, and especially in the home, we can't not become closer to the people we take care of, families included. There is a beauty and peace that somehow comes along with a loss, I've found -- a gentle reminder that life is so precious, so short, and in the great scheme of things -- so rare. A lot to be grateful for, and I think those of us caring for the fragile and dying get this point driven home more than most. It's taken me to the mat more than once, when I don't take care of mySELF, allow myself to be human, to love and grieve and get furious that innocents die too young. I've found taking care of mySELF the hardest of all.

~PedsRN~, BSN, RN · Feb 3, 2015

I am an inpatient nurse, but we have a very substantial chronic population. These kids are with us for weeks and months, several times a year. When they pass away, it hurts. Like you said, we know these kids and their families. I do attend their funerals. I will say I am averaging a death a year right now, and they never get easier.

KelRN215, BSN, RN · Feb 5, 2015

Maybe I've been working in pediatric oncology for too long (almost 8 years) or maybe I'm just completely jaded, but I think it does get easier. I don't remember the last time I cried over a patient's death. If I took on a new patient with stage IV hepatoblastoma, I'd go into the case expecting that the child wouldn't have a good outcome. I'll be taking on a high risk stage IV neuroblastoma patient and a newly diagnosed grade IV brain tumor patient in the next week and will go into these cases with the knowledge that these children are unlikely to survive their illnesses. It's the only way I can do it.

I have the utmost respect for parents who can say "no more". I find it more difficult, from a professional point of view, to administer chemotherapy that causes horrendous side effects to a child at the end of life than I do to administer high doses of morphine and ativan to keep them comfortable and allow them peace at the end of life.

Here's a thread I started a couple years ago on the day I lost a stage IV hepatoblastoma patient: https://allnurses.com/pediatric-nursing/when-children-die-814119.html

~PedsRN~, BSN, RN · Feb 6, 2015

Kel,

I think if I worked in a field where death was just a real every day part of the equation, then it would be easier to handle. But watching a child grow up healthy, take care of them from infancy with a chronic (but managed) disease - and then turn downhill and DIE so quickly - it's not something you can learn to accept. It's horrible.

KelRN215, BSN, RN · Feb 7, 2015

I walked into a patient's home today and she looked like death. That's the best way I can describe it. This child is dying but is still undergoing aggressive treatment for her cancer (high risk stage IV neuroblastoma that hasn't been responding to treatment). Seeing her like that is worse to me than what her ultimate outcome will be. I mean, I seriously looked at her this morning and thought "if this was my kid, this would be my breaking point/where I'd say "enough"."

The thing with pediatric oncology is that most of these kids WERE completely healthy before they were diagnosed. I've seen kids diagnosed with cancer who had never so much as been to the Pediatrician for a sick visit before. One of my most recent patients to die was a perfectly normal teenager with what her parents thought was strep. When the strep test was negative, the pedi drew blood for a CBC and to test for mono. WBC count of 150k. BAM, AML. 3x in under a year it came back, dead 15 months after diagnosis. I think of her and, mostly, the family she left behind often as I drive by her street several times/week.

I had another teenager who died last fall who'd had a brain tumor for several years. A recent MRI showed the tumor was growing and they planned to start a new chemotherapy protocol. I saw him on a Tuesday and he looked great. Eating/drinking well, walking better (surgery had left him with hemiparesis), talking, in great spirits. He was seen in the oncology clinic that Friday, they again said he looked great and scheduled him for admission that Monday to begin chemotherapy. He went into status epilepticus d/t a devastating hemorrhage in his tumor on Saturday. Instead of starting chemotherapy on Monday, plans were made for him to be transferred to the floor and extubated to comfort care. He died later that week. That case was the 3rd or 4th time I'd seen something like that happen just before a child was about to start a new treatment- one that was an unproven, last ditch effort which was unlikely to do anything but make them ill at the end of their lives. I view those cases as the child making a decision that the parents couldn't make- it was time to stop.

A few months ago I had a conversation with one of my colleagues who manages the more chronic kids on our service, the ones who receive private duty nursing services. My patients are primarily oncology and after several of them died in a row (I've lost at least 6 in the last year, though I think the number is actually higher) she started talking about how she could "never" deal with so many dying children. But, the thing is, the kids on her service are all dying too, they're just dying more slowly. They have diseases like mitochondrial disease or muscular dystrophy, diseases that have been slowly killing them since birth.

I think one of the important things to recognize about being a pediatric nurse is that we will all deal with the death of our patients in different ways and that's ok. Though I've been accused of such before, it doesn't mean I'm heartless that I don't cry when these kids die. And for nurses who do, it doesn't mean that they're "too emotional" or shouldn't be working with dying children. It just means we're all human.

~PedsRN~, BSN, RN · Feb 10, 2015

Oh I get it. I often wish I was one of the ones made with the thicker skin.

bigaugustlion · Feb 16, 2015

hello Sarah, thank you for sharing. boy how God brings people together!!

this is my first comment as well. I am new to this site as well. I came on here to ask questions in a nursing forum on issues and question that I sometimes have. And I found you, you see I am an LPN who does home nursing as well. I currently have a 14 month old baby girl with end-stage liver cancer. I do have a tendency to get close to the family of my patient as well as my patient. I have never had a terminal baby before and this will be my first. I do believe in God and separating myself from what I have to do and keeping the emotions to the side is something that I've been really trying to work on. I guess I figure I will have to deal with the inevitable when it comes. Anyway thank you so much for sharing it really made me feel some strength knowing that there are other people who are going through this same thing. thank you again, God bless.

Angie

bigaugustlion · Feb 16, 2015

Kel,

what signs do I look for when a patient with hepatoblastoma, starts to go into the final stage, right before they're going to die? I've just convinced the family (with help from my hospice case mgr) to give us the Ativan to give the baby. Mom seems to have come to the place where she has detached from active involvement with this child on a daily basis... which I'm sure is a coping mechanism. But getting parents to allow them to have comforting meds is difficult to say the least. They bragged last week that they're only giving ibuprofen and she is doing fine with this regime alone. She's not. Shes strughking with inability to blow off cO2, They really only see her momentarily. It's really hard. I feel like my hands are tied.

anyway, any advice would be helpful.

thank you

ang

KelRN215, BSN, RN · Feb 16, 2015

What is the baby's current status? Is she responsive? Does she still eat and drink? She'll stop doing both, if she hasn't already, and will probably become less responsive. What will happen at the end will largely depend on how well her symptoms are managed. For end stage oncology patients, high doses of morphine and ativan are often required at the end of life. I've also seen kids needing continuous versed or ketamine. Hospice should be very involved- the mother may be reluctant to initiate these meds for several reasons. She may want the child to be cognizant for as long as possible. She may believe that starting these meds (the child will likely require high doses) will hasten the child's death.

I've known several kids who died of hepatoblastoma- some died at home, some died in the hospital. The two I know who died at home both were cognizant until the end, despite high doses of pain meds. They slept a lot but they could speak to their parents when they were awake. One kept telling his Mom that he was waiting for the Easter Bunny. The family had someone dressed as the Easter Bunny visit one morning (a few weeks before Easter) and he let go that night. Both were obviously getting worse but there was nothing in particular that made anyone think "today's the day."

Does hospice come when you are there? They are an invaluable resource to you as well as to the family. They can let you know if they notice signs that she is getting closer.

bigaugustlion · Feb 16, 2015

Kel,

she is very responsive, and is tolerating g tube feedings well. She does not speak however. Shes trach/ vent and I can't even hear her cry when she does...

I just met the hospice rn last week, and you are correct in that she is invaluable! It was sure nice to know that with new orders that I can get them thru hospice in lieu of waiting for doc to c/b.

thank you for your response.

ang