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.