Symptoms of Greatest Concern as Reported by the Primary Caregiver (N = 52)

SymptomDefinitionFrequency Total/Parents (%)Example Quotes
Last DayLast Week
PainPhysical suffering that ranged in degrees21/21 (40.4)39/35 (67)“He was in a lot of pain.”
“She hurt a lot –the mind was willing; the body just wasn't able.”
Change in behaviorNotable differences in the usual activities of the child and in the child's interactions with others or change in the senses (especially not hearing or seeing)45/31 (59.6)35/28 (53.8)“It looked like he didn't really realize we were there … about the only person he ever really responded to, really, was his sister.”
“He continued to stare at the ceiling. His speech was slurred. He wasn't talking anymore. I think everything was just shutting down.”
Not eatingChild not able to swallow food and/or drink and may or may not have had a desire for food/drink8/8 (15.4)20/20 (38.5)“Physically he was hungry, but he could not eat, could not swallow.”
Change in appearanceNotable differences in how the child looked15/14 (26.9)21/15 (28.8)“The one symptom that we noticed that concerned us the most and that we knew, without a doubt, that we only had a few hours left with him was his coloring drastically changed.”
“The one thing, I think, that was the hardest was that he didn't look like himself. He'd lost a lot of weight and they had taken him off fluids … That was really hard to see him like that.”
Breathing changesAny notable differences in the child's respiratory effort and/or pattern30/29 (55.8)15/15 (28.8)“He had his oxygen mask on, and this thick stuff started running out of his nose, and so I got the suctioning, and I suctioned it. And when I took his oxygen mask off his face, his fingers and lips were like turning purple.”
“His breathing. It was a very shocking symptom. It was a scary symptom for us to see, and it hurt us as parents to watch because we knew how hard it was … he could hardly breathe. And every breath, we thought, that might be it. We kept holding our breath and thinking, ′That's it. He's not coming back,’ and it was hard to see that, because it was so painful. It looked so painful to us. We're not sure if he was conscious enough for it to be painful for him. But as parents, it was very hard for us to watch that.”
Weakness and fatiguePatient unable to participate in usual activities and needing assistance with certain functions7/7 (13.5)11/11 (21.2)“Basically, he was just so fatigued and so exhausted.”
“He was so tired he could not get up on his own.”
Change in sleep patternPatient asleep for longer or shorter periods than usual6/6 (11.5)12/11 (21.2)“He would sleep a lot.”
“She did a lot of sleeping; she would wake up and then sleep for a long period of time.”
Change in bowel and bladderPatient incontinent or constipated5/5 (9.6)9/7 (13.5)“The shutting down of her body –the not urinating or no bowel movements.”
“He had diarrhea.”
Nauseous or vomitingPatient feeling like he/she was going to vomit or actually ejecting stomach contents5/5 (9.6)7/7 (13.5)“She couldn't keep anything down.”
“He, just out of the blue, got very sick –throwing up.”
Talking to God or angelsPatient having conversations with individuals that others in the room are not able to see and patient described seeing heavenly beings1/1 (1.9)6/6 (11.5)“Told his mom that he had seen a person floating in his room and had asked his mom to please look at this person also and his mom was unable to see anyone in the room.”
“He had spiritual visitors who he talked with and I would stay and listen but I couldn't see anyone there.”
SeizingUncontrolled and sudden body movements2/2 (3.8)4/4 (7.7)“So many seizures … ”
“He had a pretty major seizure about a week before he died; I didn't think there was any way he could live through that because it lasted over an hour.”
Needing blood productRequiring platelets or red blood transfusion2/2 (3.8)4/4 (7.7)“She was having nosebleeds, more nosebleeds, which scared her.”
“Her lips and inside her ears would bleed a lot.”
Increased secretionsRequiring suctioning2/2 (3.8)3/3 (5.8)“All her secretions had been terribly bad.”
“Mucous –this thick stuff started running out of his nose and so I got suctioning.”
ComaUnresponsive to touch or sound2/2 (3.8)3/3 (5.8)“He was basically in a coma.”
“He wasn't responsive as far as touch; he would not respond at all.”
Temperature changeChild became cooler or warmer to touch or by thermometer readings3/3 (5.8)0“Her temperature was fluctuating rapidly, like 105 and back to normal; and then it would spike up again.”
“Just the fever concerned me.”
BedsoresSkin breakdown01/1 (1.9)“She had skin breakdown.”
Change in heart rateCardiac beats change in pattern7/7 (13.5)1/1 (1.9)“Her heart was beating very fast.”
“It also seemed like he was going into congestive heart failure. His heart beat was beating slower.”
OdorChild emitted an unusual smell1/1 (1.9)0“The first thing I noticed right away is that there was a terrible smell, fishy; it was very strong.”
Total symptoms162193