I’m sure most of us were riveted to our TV’s, radios, and computers on April 19th when the citizens of Boston and surrounding areas were advised to stay home and lock their doors. Mass transit and normally busy intersections were empty. Schools were not in session. Businesses were closed.
Working with hospice and needing to send out nurses on a regular basis to help patients who are dying at home, I naturally wondered how Boston area hospices coped with having to stay away from their patients.
Our hospice patients call us for many different reasons; even if they don’t call us, some require daily visits. Some need to have pump cassettes changed, dressings changed, or symptoms re-assessed and managed every day. I’m sure Boston has had its fair share of weather-related issues, but those typically come with at least a day or so warning and arrangements can be made. The shutdown that happened in April came with no warning whatsoever.
I was able to track down only a couple of Boston hospice nurses to chat with – they both said that their patients fortunately did not to require anything emergent that day. I know that almost every time I work, I take calls from people who need a visit from a nurse to help manage symptoms that have suddenly gotten out of control (shortness of breath, pain) or who have died and need to be pronounced. Catheters become dislodged, oxygen concentrators malfunction. I guess under the circumstances, non-urgent concerns were put off until the lockdown was over.
I know I was very surprised when I started working in hospice to learn that things that are an inconvenience to us (the President visiting the area or major protests, both of which can shut down major roads and highways for a period of time) can be a huge deal to patients who are at home. Hospice nurses have to figure out alternate routes (which can take much longer) or simply not visit at all in these cases. And it doesn’t only apply to hospice – home health patients can also require daily dressing changes, IV medications, and have equipment malfunction (wound vacs, anyone??).
I will leave you with a story that one of the nurses related to me. She was off from work that day, but wanted to share what her day was like. If there are any hospice or home care nurses that want to share stories of trying to help patients during natural disasters (or not-so-natural disasters), please email me at codeblogrn at gmail. Or use the “submit your story” link at the top.
Sarah Creed, RN writes:
I think that the day was so quiet because we were all glued to our televisions. I can’t recall another time where I have been more paralyzed by fear than last Friday. I live 2.5 miles from the house in Watertown where suspect #2 was found. Here is the story of my day:
I woke up to a text message from my boyfriend (who lives 2 miles from the “boat” and 1 mile from where the news was reporting from) asking if I was okay. After the rest of the week, I wasn’t sure what he was talking about, so I texted back saying yes, and of course went immediately to check CNN. I read that there had been a shoot-out in Cambridge and Watertown and that the suspect was on the loose. I called the DON of my hospice, as I am the nursing manager, and though I was supposed to be off, I wanted to help her call nurses. But at 7:30 in the morning she had already done that, and all was well. So I sat and watched. I was supposed to be packing, as my boyfriend and I are moving on Saturday. But I could not move. I sat and watched as the SWAT team entered homes so close to where I live. And then, the most terrifying thing happened – they stopped showing live news feed of the SWAT team entering homes.
We couldn’t drive anywhere, and even more than that we couldn’t walk anywhere, so my boyfriend and I were stuck apart. All I could hear was the wailing sirens of emergency vehicles. And then the whirl of a helicopter. Lots of helicopters. I looked out my window, and there were black hawk helicopters all around my building. And they were no longer showing live news feed, so I had no idea where they thought the suspect was. I was so afraid, because what if he was on my block? I know my building is safe. There are 2 locked doors to get into the lobby, and a lock and a deadbolt on my door. But still, it seemed these men were capable of just about anything. The day just continued like that.
We finally got the go ahead for people who had gotten out to work to come back home, so my boyfriend’s roommate picked me up on his way home, so that we could all be together. We just sat and watched the TV, waiting, with a very high sense of anxiety. The place was like a ghost town. My mom, who lives an hour north of the city said that no one was out by her either. I think that people just couldn’t walk away from the television. We wanted answers. One of my friends was friends with the MIT officer who was shot by the terrorists. Another one of my friends is friends with Jeff Bauman, who is now infamous as the man in the wheelchair being pushed by the man with the cowboy hat. He lost both of his legs. These are people that my people know and love. We wanted answers.
Then we hear that they didn’t find him, and that we can go outside. So we go and sit on the porch. And suddenly there are so many sirens, more than I had heard all day. My boyfriend tried to re-assure me that there had been a lot of sirens all day long, but I insisted that there were more. And then it came across my phone that there were shots being fired in Watertown. We were back to being glued to the TV. We found a link to the police scanner so we were able to hear what was actually happening. And then he was captured.
After awhile, we mustered up the courage to go outside and to the bar across the way. And the coolest thing, there were people cheering on the law enforcement personnel that were coming back to the station. Everyone at the bar was in a celebratory mood, and playing “American” songs on the jukebox. We survived. But, I have to tell you, it is still pretty traumatizing. One of my coworkers is having a pretty tough time – she was visited by the SWAT team that day and heard the shots. Forum, on Boylston St, where the second bomb went off, is one of our favorite restaurants. We are looking forward to going back there when it re-opens, but of course the innocence is gone. We had just been out on Boylston street on Saturday night before the bombing. We had been shopping in Watertown on Sunday. We feel violated. This is too close to our homes. But, we are strong, and we will move on and get through this. I can’t believe that the Boston One Fund has already raised over $28 million. We are so proud of that.
I know this is long – but this my story. It doesn’t pertain to hospice care. But this is how I know my hospice patients spent the day – glued in front of the TV, and very afraid.
I’ve encountered some interesting beliefs in my time as a hospice nurse. Before making visits or calls, we are expected to at least glance at a ‘basic information’ screen about the patient. I’ve always been intrigued when I come across an entry that says some variation of, “Do not mention the word hospice in front of patient (and/or) family.”
I can respect this. I’m more of a “let’s keep it real, yo” kind of person, but I know not everyone is. So I do my best not to mention the word ‘hospice’ while providing care for these patients, and it’s never been a problem.
But there are some patients that are SO opposed to the entire concept (although they still come on service) that they also refuse any kind of equipment that we offer them to make their lives easier while they are being taken care of at home.
Hospitals have it all, right there – over bed tables (which are nice because they have wheels and can be a tall, easy moveable surface for anything from meals to setting up supplies for a dressing change), bedside commodes (gotta pee, can’t walk, oh! there’s something we can put next to the bed! Genius!), and hospital beds. In fact, the fancy pants hospital beds we had at my job in CCU could translate phrases into like 15 different languages. We’d just pick one from a list (“are you in pain,” “please hold still,” etc.), choose the language, and the bed would speak the phrase you wanted. Needed to tell someone “I am your nurse” or ask them to wiggle their toes in Mandarin? The bed would do that. It would have been a really helpful feature, but patients often could not hear what the bed was saying.
Anyway, hospital beds, even those that can’t speak 15 languages, are pretty nice things to have when you’re sick. So part of me was always dismayed when I’d go to a house to see a patient in distress only to find that they were still on the couch or in a regular bed. Look, I get it. Having a hospital bed in your house takes up a lot of room. It basically screams, “Hi! I’m sick and/or dying!” So for someone who can’t even tolerate hearing the word “hospice,” having such a huge reminder in the room can be distressing.
But when the chips are down and you can’t breathe and you don’t have the strength to sit up? That bed can be a godsend. The head can be raised or lowered, the bed itself can be raised so that your loved ones (and visiting nurse! ahem) don’t break their backs bending over to provide care (turning, cleaning, boosting). The ability to raise the bed is actually pretty important for laypeople who aren’t used to using proper body mechanics when moving patients. The bed rails can be really useful to use to help get yourself out of bed.
So when I come visit because the patient is having a hard time breathing, and I walk in to see them laying flat on a regular bed, I’m sad that their denial has progressed to causing them actual discomfort. There’s nothing more I’d love to do than push a button and raise the head of the bed so they can breathe more easily. There are wedges you can use on regular bed mattresses, and of course there are pillows you can jam behind the patient’s back, but those aren’t always very comfortable and it’s hard to get them in the right position. Not to mention having to try to get them all back in position every time the patient needs to change position or get out of bed.
So if you find yourself or a loved one needing to be taken care of at home, and your nurse brings up maybe getting a hospital bed, don’t dismiss it immediately. It can be a real asset for a sick person’s comfort and that of those taking care of them.
I’ve been doing hospice now for over 6 months. As I did in CCU, I only work weekends and some holidays, so 6 months for someone like me doesn’t really equal 6 months for someone who does this full time. I still struggle with remembering everything I need to remember, but I’m getting better. There is more to remember than you’d think!
I’m realizing how much I depended on constantly being around other nurses to learn. My hospice orientation included some different scenarios where I was able to watch my preceptor deal with what was happening, and I learned from that. But it was still only the tip of the iceberg compared to what can really happen.
In the hospital, you’re usually surrounded by other nurses. You’re at the desk with them talking about patient care, you’re at the bedside helping with patient care, you have several around at any given time to bounce problems off of and get advice. I learned how to teach patients by watching other nurses teach patients. I learned how best to say things (and how not to say things!) by watching other nurses talk to patients. I learned how to titrate medications by watching other nurses. You get the point. Throughout my entire career, I was constantly watching other nurses so that I could be a better nurse.
Now I’m on my own. If I’m really in a pickle I can call another nurse who’s on for advice, and I have done that once or twice with a good result. But when you just can’t get that foley in, there is no one else to ask to try. You just have to leave it out and hope someone on days can come do it, which can be 16 hours later.
I went to a house late one night to help symptom manage a patient that was having pain. When I arrived, the patient was asleep but had to be woken up for some medications. Despite having severe pain all day, apparently the pain was gone when she awoke. But the patient was delusional. Although she had no dementia, she didn’t recognize her husband of almost 20 years. She kept asking about a cat that she needed to take care of, but the couple had no pets. She was very very concerned about this cat. Although she was not belligerent (as some confused people can be) and didn’t seem overly agitated about not recognizing anyone in the house with her, she was very insistent that we find this cat and make sure it was okay.
The husband and I did the best we could to reorient her, and she would look at us thoughtfully and then you could just see her mind reject what we were saying outright. But again, there was no agitation, no real distress involved. It was as if one part of her mind had no idea what was going on, but somewhere in there she knew she was safe regardless. The husband kept asking me what we should do about this, but I had no real ideas. We were already reorienting her, she wasn’t distressed, everyone was calm. I asked him a few more questions (has she done this before, has she recently started any new medications, etc.) and could determine no cause for her behavior. So I just said, “We’re already doing what we should be doing.” I just wanted to give her a little more time after waking up to clear her head.
She asked her husband for some ID, he produced his license, and she questioned him further. Finally it was decided that we would call her sister and talk to her about the cat and what was going on. The husband dialed the number and brought the sister up to speed on what was happening, and I heard him say, “I think she’s having a psychotic break and the hospice nurse doesn’t know what to do about it!”
I wasn’t too offended by that statement and decided that from his point of view, I really hadn’t provided much in the way of advice. To me, she was a patient who was disoriented and having delusions, and I’ve seen hundreds of patients in that state. What did I do in those cases? I medicated them. Because usually they were agitated, pulling at things, obviously distressed. This patient was not. I just didn’t feel the need to call the MD right at that moment. Even if the MD would have ordered something (Haldol I assume), it’s not like I could go to a med station and get it. We’d have to figure out where the nearest 24 hour pharmacy was and have someone pick it up. And if the patient had been even the tiniest bit distressed, I would have been all for that plan.
The sister decided to come over, the patient recognized her immediately and eventually become more reoriented. She still wasn’t sure about the guy sitting at the table with us, but took her sister’s word that she did indeed know him very well. She still asked about the cat, but her sister assured her that there was no cat. I believe her behavior may have been caused by disease progression, but who knows. By the time I left, she was fairly reoriented, in no pain, in no distress.
But the “she doesn’t know what to do” comment has really stuck in my head. People always say that CCU nurses have “autonomy.” And they do. But you really don’t know what autonomy feels like until you’re the only medical person there and everyone is looking at you for answers.
- I am Gina. I have been a nurse for 15 years, first in med/surg, then CVICU, inpatient dialysis, CCU and now hospice. This blog is about my experiences as a nurse, and the experiences of others in the healthcare system - patients, nurses, doctors, paramedics. We all have stories!