The Miracle of Death

I missed a whole week of school in order to stay in New York and care for my grandpa. For one of my makeup assignments I had to write a paper about my experience with hospice and end of life care (it was an assignment, so there's a lot of nursing lingo...sorry). I wrote it on the airplane ride home, the day after Grandpa died, when I was emotional and pensive. The result was a very personal paper that I wasn't sure if I should post.

I decided to because after watching my Grandpa pass from this life to the next, I really wanted to talk about it - to see if anyone else had had the same experience I had with passing. It was such a beautiful thing, such a miraculous thing to witness, and I feel so, so blessed that I was the one who was lucky enough to see such a special, and sacred thing. And I decided that, just in case anyone else had the same experience, it's worth sharing.

My Experience with Hospice and End of Life Care

Hospice nursing is unlike anything I’ve learned or experienced so far in nursing school. In school we learned a little about hospice – it’s palliative care, we treat the patient’s symptoms, and make them comfortable, etc. I guess I didn’t really understand exactly what that meant, because after my first chat with a hospice nurse, I was dumbfounded by the difference.

Two months ago, my grandfather had an MRI and the doctors discovered a brain tumor the size of a baseball in his frontal lobe. They did some CT scans and found other nodules in his lungs. He was in the hospital for a few days, then sent home with hospice. His health has been declining slowly since then. Last Saturday I flew home to see my grandpa, and help my family clean up our town after it was devastated by a hurricane and flooding. While I was there, amidst all the stress of evacuating, flooding, and losing his farm crops, my grandfather took a turn for the worse. Saturday night, when I got to New York, my grandpa was walking (with assistance), feeding himself, and coherent and oriented. You could tell he was sick and deteriorating, but he seemed to be not too bad. My family asked me, since I’m an expert at all things nursing, how long I thought he had to live. I told them, at Kindred Hospital, he could live for several more months, if not longer. He was the worse my family had ever seen, but I was used to patients much, much worse off than he was. Still, we set up a bed for me in the front room (next to his hospital bed) and I stayed with him to care for him around the clock.

The next morning I took his blood sugar before breakfast. It was 330 – very high, but he was on Dexamethasode, a steroid for his tumor, and high blood sugar is expected. He fed himself a bowl of cereal, but struggled doing so. We walked him to the bathroom, which turned out to be very, very difficult for him. He almost fell several times on the way. After we bathed him, we took him back to bed – he seemed extremely tired.

While assessing him, I discovered a small pressure ulcer on his right elbow, and a slightly larger one on his coccyx. He also had pitting edema in his ankles, which is expected with the Dexamethasome. His lung sounds and heart rate were good, and he didn’t have a temperature.

The next day, the hospice nurse came. He was unable to get out of bed. She told me he was in “transition”. I didn’t really know what that meant, but she put a foley in him and told us not to worry about his meds, or turning him (to avoid pressure ulcers). What!? No meds? No turning? She didn’t even take his temperature, because “she could feel with her hand”. His pulse ox was at 92, but she didn’t seem to mind that even. She also said if he didn’t want to eat, don’t pressure him to, let him do whatever he wanted. It was hard to listen, and I told my grandma all the things we would do differently at the hospital. Luckily, she let me continue to turn him, and as long as he had a gag reflex, I continued to persuade him to eat, even though he didn’t have an appetite.  I also crushed his pills, using a small glass inside of a large class, and hid them in his applesauce. In my own hospice nursing strategy, I discovered when there’s a will (and a gag reflex) there’s a way.

Apparently all hospice nurses are not equal, because a few days later another nurse came and told us to disregard some of the things the other nurse had said, such as not feeding him, not giving him his meds, and not turning him. I agreed with her, excellent patient care until the very end, no matter how soon it was!

My experience wasn’t just with hospice care – it was with rural hospice care. And there were a few times I had to get a little creative. One night we had a big flood and all roads coming to our house were closed. My grandfather’s foley was leaking terribly. I did a little research and after noticing a lot of sediment in his bag I wondered if the tube was clogged. I decided to flush it, a procedure I hadn’t done before. I did a little research and found I needed an alcohol swab, a syringe, and sterile water – none of which I had. So I got creative. I threw some gloves on and dug through the trash where the foley insertion kit was and found a syringe. I sterilized it. Then I found some iodine and used that in lieu of an alcohol swab. I opened a new bottle of drinking water and used that to flush. I told my grandma I would fail out of nursing school if my professors saw me, but it would have to do.

When I told the nurse the next day what I’d done, she told me not to worry, “the home is a clean environment”. Well… the bladder is a sterile environment…but it’s a nice thought J. I didn’t say that, but I thought it.  

Thursday morning I took my grandfather’s blood sugar (even though the first nurse told me to stop taking it). The meter read ‘HI’ which indicates it is over 500. He was breathing rapidly, deeply, and had very fruity breath. It was the first time I’d actually smelled fruity breath, and I tried to encourage everyone in my family to smell it – they weren’t as excited as I was.

His respirations at this point were over 40, and his heart rate was nearly 130. His temperature was fluctuating a lot, in his hands, feet, and temporally, though his knees always seemed cold. His urine output was starting to slow down, but it was still around 20-30 per hour. And he was unresponsive. I called his doctor and told her his symptoms – all but the unresponsive. She suggested insulin. Then, when I told her about his lack of responsiveness, she got really serious. She told me to talk to my grandma about our options – which were grinding up his metformin and putting it under his tongue, Lantus, or regular insulin- she told me to tell my grandma what each of those entailed. Then she told me that this wasn’t a bad way to go – that he would just slip away quickly if we offered true palliative care. She told me to explain everything to my grandma, and call her back with our decision.

That was a very hard thing to do. I explained that with regular insulin, we would have to take his blood sugar three times a day, and then administer a subcutaneous shot. I explained how with Lantus, we would give it once a day, still subq. I explained that while these measures might relieve the symptoms of hyperglycemia for a very short amount of time, and maybe make him responsive a little longer, they would only prolong the inevitable – and maybe not even that.

After some discussion, and some tears, she decided not to prolong it, but to let him pass from this life as his body was trying to do. I called the doctor back and let her know. She explained to me what was in the ‘care kit’ in the fridge. Turns out with hospice you’re allowed to have morphine in your fridge for months. And it’s even raspberry flavored. She gave me permission to use the meds in the kit if I thought it was necessary. I felt a huge responsibility – deciding when it was necessary and explaining all these things to my poor grandmother, who was actually glad to let someone come in and take over- she was very tired at this point.

After we made that decision I quietly asked the doctor how long his body could sustain this much exertion. Of course, she didn’t want to give me a number, but she finally told me probably not more than 48 hours. We began calling our family members. While my grandma made calls, I tidied the home. I lit a few candles, because his foley had started leaking again and kind of smelled. I vacuumed and swept, and put several chairs in the room with my grandpa. I turned on some soft music and put out a plate of cookies and some watermelon. I wanted it to be peaceful and comfortable, and I didn’t want my grandma to worry about anything.

Family and friends started pouring in. I felt like I was giving report every couple minutes. HR up to 138. Respirations now above 40. Output down to 10. No mottling of the skin, which was a very welcome sign to me. Or welcome lack of a sign, I guess. I answered a lot of questions – what was happening to his body? Why was he breathing so fast? Was he in pain? Why do I look at the urine so much? Why am I looking at my watch so much? What was going to happen to him, physiologically? People stayed at our side until midnight, when the last guest left. My grandma and I stayed up all night, holding his hands, watching his breaths – they were still deep and fast, all night long. I gave him some morphine at 8 pm when his facial expression seemed to be a grimace, then at midnight he was restless so I gave him some Lorazepam (or as my grandma called it, Razmataz – she never could quite get the pronunciation right), and again at 4 am. We listened to music and cried. We occasionally dozed off, but my watch was set to check on him every hour. His output fell to 5 ccs per hour, and then less. His respirations rose to 50, his heart rate, which had been very irregular a few days before, was beating too fast to be irregular, and was at 140. Around 6 am I noticed some mottling on his big toes, and by 9 am it was all the way up to his knees. At 8 am I left the room, and didn’t allow anyone in it for an hour, letting my grandma have time alone with him to say her last goodbye. I don’t think she knew how close he was to going, but I did point out the mottling to her, and she did know it was what I had been waiting for, checking for every hour for a few days. At 10 am the hospice nurse came to check on us. His foley had been leaking badly and I had poured some baby powder on the sheets, hoping to mask the smell. I told her I would have liked to change the sheets, but I felt he was too unstable to move at all. She told me, “we have an unstable patient, but a stable plan”.

I don’t think I’ll ever forget her telling me that, or ever be OK with what she did next. She spend a good 20 minutes changing his bedding and clothes – and I helped. It was not an easy task, and it required a lot of rolling and holding, and pulling. There are a lot of things I’m proud of myself for, things I handled this week that a few months ago, I wouldn’t have been able to handle. There are a few things, though, that I regret. The first thing was letting the nurse move him around like she did when I knew he was so unstable. The second thing I regret is that I didn’t watch him closely enough during that time. Everyone had a task – my grandma was changing his pillowcase; my uncle was emptying the electric razor from his shave. My two younger cousins were taking his sheets to the washer. My father was walking the hospice nurse out to her car, asking her how long she thought he had – “maybe a couple of hours, maybe a couple of days”. 

I was washing his face with a cloth when I noticed his breaths had slowed down. I watched him open his eyes wide, wider than I’d seen them in days. He looked very intently at something – something that was in the room, but that no one else could see. I said, “Grandpa, what are you looking at?”, surprised to see him so alert and focused. Then I watched as his spirit literally left his body. I know the exact moment it happened, the exact moment his life ended - something changed in him, and it was very clear that he was gone. Then he drew in one last breath, turned his head forward, and was still. 

I wish I had waited a minute, collected my thoughts, quietly asked the 10- and 12- year old cousins to go outside to get my dad, quietly held my grandma’s hand and brought her over to him. More than anything, I wish my grandma had been watching him at the very end, instead of me, and had seen the transition that took place. Instead, I sort of panicked. “Ethan, go get my dad!” I yelled at my 10-year old cousin. Everyone could tell from my voice something was wrong. The kids didn’t leave to get my dad – instead they came closer and stared. Finally their father directed them out. Meanwhile, I had my grandma come over. We heard the screen door slam shut as everyone came running back inside. I knew he was gone, but I never verbalized it – and for some reason, no one else could tell. My uncle kept saying, I think he’s still alive. My grandma looked at me with her eyebrows raised, and I just shook my head. My dad came in, and I shook my head again to him. My grandma kept saying, “I can’t believe he’s gone”. She knew he was leaving, but she didn’t think it would happen that way. I think if we hadn’t moved him around so much, things could have ended differently. My grandma could have been sitting by him holding his hand, and she could have been the one to watch him go, instead of me.

In any case, that’s how it happened. My grandma and father started calling relatives, while the nurse (who hadn’t made it very far) and I took out his foley and dressed him in clothes my grandma picked out. Then we emptied all his pills and his comfort kit into a bag of kitty litter she had, cut his name off of all the bottles and prescriptions (their HIPAA policy) and I witnessed her dispose of them. Then I tidied up again to prepare for the onslaught of visitors that were going to come. I lit a candle, turned on some soft music, and again, set up chairs. The nurse asked about a funeral home. I assured her I would call them, then she left. People started arriving. After letting some of the smaller children sit with him, I sent them up the road to my house to make a plate of cookies. After a few hours of visitors, I called the funeral home.

Though I don’t like exactly how he went, and I don’t know how I’ll get over knowing he could have lived a few more hours at least (which may not seem like a big deal, except for the family members that were on their way when it happened), I remember watching, thinking, this is how it’s supposed to be; quiet, without tubes going in and out, without a machine breathing for you, without 40 people in the room while you’re stripped naked, pounding on your chest to no avail. Just a quiet, peaceful, passing, surrounded by your loved ones. (Loved ones trying to help by changing the sheets, but for sure doing more harm than good.)

And that’s why I like hospice care – a specialty I never thought was for me. I truly feel like I experienced a new kind of miracle, one most people don’t know about, but one just as special as the miracle of birth, and the miracle of life – the miracle of death. Though hard and painful, and though I’ve cried more tears in the past few days than I have in several years, experiencing and seeing death in this way was sort of beautiful, in its own way. Helping people see this side of death is something I think I could see myself doing. And I think that’s what a good hospice nurse can do.