Living With Dying articles

A hospital wing is not the most restful environment in the world. This will not be a surprising statement to anyone who has spent significant time in a hospital room. 

Theresa Brown, RN, is no stranger to the chaos. She spent nearly a decade working as a clinical nurse on an oncology unit in Pittsburgh. In her 2016 book “The Shift: One Nurse, Twelve Hours, Four Patients’ Lives,” she chronicles the large and small decisions that nurses make every moment of every day. Placing those decisions in the context of the larger health care system, the book elucidates why nurses can often seem harried and distracted.

“We’re serving many masters – regulatory masters, financial masters, and shareholders, with the rise of for-profit health care,” Brown said in a recent interview with the Record. “Our system is now so complicated and so tied up with money and all the different rules and incentives, that are very limiting. You’ll get a lot of lip service to treating the patient as a person and patients’ rights. But the reality is a lot more nurses feel even more squeezed.”

While the issue of money in health care is an important one, it’s not what we care about when our loved one is in the bed needing attention. With constant alarms and pages and people rushing to and fro, it’s easy to wonder if our loved one is getting the focused attention they deserve.

With that in mind, I asked Brown to offer some pointers on how patients and families can interact with nurses in order to create the best experience for everyone.

“I call it the four P’s,” Brown said. “Be polite, persistent, punctilious, and pushy.”

Polite

The first thing to understand is that nurses work in an extremely high-stress situation and that multiple lives rest in their hands at any given moment. While the needs of our loved one are primary in our mind, the nurse is also juggling several other patients whose needs may be more critical at any given moment.

“It’s hard sometimes, when people are already stressed. Yelling at them or being short with them is only going to make that stress worse,” Brown said.

One way to ensure that nurses want to work with us is to make our patient’s room a pleasant environment to be in. “I don’t think it’s that most nurses think, They yelled at me, so I’m not doing what they want,” Brown said. “But it’s a normal reaction – I’m really busy and this person yelled at me and now I don’t want to go back in that room. It’s a fight-or-flight kind of thing.”

In the book, Brown talks about a patient who always keeps a full candy dish in her room. While it doesn’t determine whether or not she gets care, nurses look forward to stopping into her room because they know they’ll get a little treat.

Persistent

While we are reliant on nurses and doctors to stay on top of everything, their job is to have a bird’s-eye view of all of their patients while we have an up-close-and-personal view of our own loved one. There are times when we need to stay on top of things.

For instance, Brown said, if a doctor came in at 6 a.m. and gave information to the patient, who’s known to be a bit confused, it’s okay to follow up on what was said.

“Be persistent until you get the answer,” she said. “Ask a nurse. If they don’t know, the nurse can page an intern. If the intern doesn’t know, they can page the fellow. Someone has to have the answer … Little balls can get dropped all the time and it’s okay to make clear that you want your ball picked up.”

The fine line that families have to walk is deciding which battles to fight and which to let go.

“The danger is that you don’t want to be the boy who cried wolf. If you’re complaining about everything – the dinner is cold, the bed is uncomfortable, the med is a little late – people are less likely to take you seriously. It’s human nature. You’re dealing with overly-busy overly-stressed people,” Brown said. “To get their attention, you want to be really clear and know what you’re asking for. It’s not always easy to do that when you’re anxious and you’re worried. And that’s something that we [nurses] need to be better at recognizing. When people are worried they’re not themselves and we don’t see them at their best.”

Punctilious

With so many people tasked with various pieces of our loved one’s care – the phlebotomist taking blood, the nurse taking vitals, the tech reading test results, the doctor making surgical decisions – there are times when communication doesn’t happen or things fall through the cracks. In those moments, we can help our own case by trying to connect the dots.

“Have a sense of responsibility for your own care to the extent that you are able,” Brown said. “Can you remind them that it’s time for your dressing to be changed? That thing just got dropped on the floor, can you get me another one? Whatever you can do to be an active patient. Which does not mean you’re responsible for figuring out [your symptoms] – why am I shaking and what should be done about it?”

There can be a thin line, of course, between taking responsibility and becoming over-vigilant. In the book, Brown describes a patient who re-cleans her own room, demanding a new shower curtain and more.

“Lysoling your room is an extreme version of [being punctilious]. But if someone comes in and they’re not sure about something that’s going on with you, ask them, Can you answer that?”

Pushy

Finally, Brown said, there are times when it’s necessary to take a more demanding tone.

“I reserve that for if care is not happening that really needs to happen and your loved one is really declining or in danger,” Brown said. “That’s when you say, I need someone in here right now. This is what I’m concerned about. Either something happens to fix what’s going on, or you get reassurance that this is okay and here’s why.”

In an extreme situation, Brown said that many hospitals have a phone number people can call if they feel their loved one isn’t getting the care they need.

The bottom line is that we’ll get the best service if we treat them as people, rather than servants.

“I would really love it if [people] could really notice nurses,” Brown said. “How hard are we working? Do we seem under pressure? Let hospitals know … ‘It’s really important to me that nurses get the support they need and the ones on our floor seemed incredibly busy’.”

From the moment Mom was diagnosed until she died two years later, we lived in a state of constant peaks and valleys, never knowing whether good news or bad news might be the next thing out of the doctor’s mouth.

A handful of things I don’t deal with well: anxiety; uncertainty; transition. Every single one of those things was in abundance during Mom’s cancer journey. It was tolerable only because I was acutely aware that my time with my mother was now limited and I wanted to make it the best time possible.

In the 10 months since Mom passed away, I’ve discovered a new relationship with uncertainty. For the first time in my life, it has become my friend.

In her final months, Mom gave me a crash course in all her financial, legal, and personal affairs that I’d need to know once she was gone. During those conversations, she gave me a huge gift: she repeatedly said, “Promise that you won’t make any big decisions for at least a year.”

She knew my tendency toward making major life decisions on the fly (while I often agonize endlessly over far less consequential choices). She didn’t want me to do something major in haste – like sell her house – and regret it later.

This year, the most frequent question people have asked me is, “What are you going to do with the house?”

From the beginning, my answer has been consistent: I don’t know. I can’t think about it yet. I need to handle all the things in the house before I can think about the house itself. Plus there’s the probate process, paying the bills, following through on the promises Mom made to people before she passed, and so much more. It’s too overwhelming to try to figure it all out at once.

Mom’s imposition of a one-year hiatus on big decisions has given me the freedom to say “I don’t know” when people ask. It turns out to be a big part of what has kept me sane. Constantly reminding myself that I don’t need to have all of the answers in this right-now moment has allowed me to make the decisions that I need to make right now with far less agony.

Interestingly, it seems to make other people rather uncomfortable.

“Well what do you think you’ll do?” is a common response.

Death is the ultimate uncertainty. Once it has occurred, I’m recognizing people’s inclination to quickly regain firm ground by dealing with things they can see and touch and quantify: money, belongings, property.

I get it. Sorting the stuff and filing the paperwork and keeping the checkbook have helped me to move forward.

But throughout that process I’ve still allowed myself to say “I don’t know” a lot. And without pressure to make hasty decisions, many of those “I don’t know”s have, over time, turned into “I do know”s without an overabundance of drama.

We’ll be having an estate sale this weekend in Franconia. While one part of me is still unprepared to have people walking through my mother’s house and going through her things, another part of me knows that it’s finally the right time.

I’m inching closer to being okay with selling the house, too, but I’m not completely there yet. When it’s time, I’ll know.

Until then, I’m infinitely grateful to have Mom’s voice in my head telling me that it’s okay – I don’t need to know quite yet.