Category Archives: MEDICAL – PATIENT CARE

WAITING STILL

Yes, we followed up like you said with the mental health agency, and I have to say, we were treated poorly. Yes. They gave us an appointment, and then they canceled it after we were already there. Yes, in person! They gave us another one, and then when we got there and checked in, they canceled it again. They made yet a third appointment, and then they called the day before and said, hey sorry, the person you were assigned to just quit and we don’t have anybody who can take your daughter’s case so you have to go back to the waiting list.

Psychotic breaks? I don’t know. That’s the problem! She’s always talked to herself, so it’s hard to know if she thinks she’s talking to someone or just talking to herself. We’ll be sitting around the table and she will all of a sudden start talking or mumbling to herself and put a hand up to hide her face or just wave a hand around. One doctor says it could be a tic, like from her autism. I don’t know. How can I know? She is secretive. That’s one of the things the counseling was supposed to be for, so she could open up. Right?

The autism center you told us to go to also has a waitlist for therapists, and we have never gotten to the top of it. The children’s hospital has a waitlist, and we got in for medical care but not for the counseling or therapies. Her case manager from the Developmental Disabilities Administration was supposed to help us get a counselor gosh six months ago at least. They said to wait three or four months before calling, because they’re so busy, so I did. And then I called for the last couple months, begging even, and the guy whose number they gave us never answered a single time. No one did. Finally last week some lady called and said she’s our new case manager. She says that guy left three months ago but no one ever told us or sent a letter or anything and here I was writing and calling for nothing. And she’s new to the case as she says and so we’ll have to wait for her to figure it out. Everyone tells us they are underfunded, but what can I do about it? Besides never get care for my daughter, so they have one less thing on their plate. I guess that’s my contribution.

The doctor, her regular doctor, also agreed that she should get therapy, and individual counseling, urgently, and he told us to call your hospital, but I don’t know if he meant you or someone else. Did he mean you? I am telling you all this in hopes you can help us. Oh, you only do the medical management? Okay. And the ones in the other clinic, they have a years-long waitlist? Yeah, sounds familiar. Okay. Well, what can we do?

Yes, I did hear about the other mental health place in the county, but they said we have to wait there, too. Everyone is wanting counseling during COVID, they told me. But it seems like they don’t decide who needs it most. I don’t know how people get in. I really don’t. It can’t be first come-first served or we would not be waiting anymore, though, right? All I hear is, you’ll have to wait. Wait for a call. Leave another message. Wait for a call back. Fill out these papers. Then wait for a call. Then someone looked at them but then quit, or lost them, or never got them. We’ll send you more paperwork, they tell me, and you send it to your insurance, and then: You’ll have to wait. Wait. Wait.

You want to give me a number to call and complain? Well, that’s nice but I doubt they would do anything but put me on hold. Then I wait for an hour, then they say they are underfunded. So what can I do but wait? If a bunch of people need help and they don’t have a bunch of people to give help, we get this situation. It’s only logical. There isn’t enough to reach us, so we wait. We wait even for years without the services everyone keeps telling us she needs.

Did you know, did I ever tell you, they told me that the very best thing for my daughter would be this ABA thing? Wait – it’s here is my notes. Yes, Applied Behavior Analysis for kids with autism. Yeah. Two years ago. No, that was three years ago now. We were so happy and excited. Finally, something to help her! But you know what, we’ve been waiting so long now, that the new case worker told us our daughter might “age out” and be be too old to get it. They want to focus on the younger kids who can get more socialized, or have a better chance, it’s some kind of outcome-based or evidence-based – I don’t know what. I can’t really follow my notes – they all blend together into a big pile of closed doors. Like trying to win the lottery and someone tell you there is a system, but there’s not. It’s random.

Yeah, I can write the ombudsman guy’s number down if you want me to, but I really don’t know if I will feel up to calling, to tell you the truth. You get pregnant, and it’s the happiest moment of your life. And it’s your flesh and blood, and then she is born and she is perfect and lovely and healthy. I don’t know what happened to make her like this – to make her not be like other people, and need all these specialists who don’t have time to help her. You have no idea what a sick stomach I get, what trembling with hope and fear all mingled – every time I am asked to call one more person, one more agency – I can’t help myself from thinking maybe this call will bring my daughter the help she needs! And never being told no, but simply wait. Maybe someone else. Maybe later. Maybe somewhere else. Call another number. Wait.

Sometimes I just wish I didn’t even know about the help if we are destined not to get it. You know? Just to have told us, years ago: This is how it is. Nothing will change, and nothing will get better, and your child will grow up and continue to suffer – never be able to enjoy human company, or even her own company, and no one will ever reach her and help her emerge. And you won’t even know if she is crazy, or needs pills, because she cannot get well enough to tell you, and no one will ever, ever help her. Not really. You see what I am saying? Never to learn at school. Never to marry. Never to work. Never to be safe or able to protect herself when I am gone. To spend her life suffering, and for me to spend my life suffering with her, in agony and hope and wondering how others got services and what is wrong with me that I cannot get her in. I try to bow to our fate, but in my heart of hearts, I wish I never knew about any of this therapy if she is destined to never get help. The outcome would be just the same, but we wouldn’t be waiting still.

NO VOICE

I came into the patient room, and as soon as I introduced myself, the newly arrived niece’s face lit up into a big smile. Not because she knows me. She had never seen me before in her life. But her aunt had asked her to take off from work and come interpret for her uncle because they didn’t know the hospital was going to provide one. I assured them that they can request an interpreter as needed. It was part of hospital overhead, and not billed to patients. And for an inpatient, we could work with staff to set up a daily interpreter for doctor’s rounds and to check in with the patient to make sure things were clear. The family was both pleased and surprised, even though this patient had been hospitalized for some time.

While the patient’s core medical situation was safe and stable, there was a mounting list of frustrating, painful misunderstandings. To start, the patient’s wife and her niece had both taken off work today because someone with limited language skills had told the wife over the phone they had to fill out some financial paperwork by June 1st or they would have to pay the whole hospital bill themselves. So they dropped everything and rushed in to meet with the social worker, who told them that they actually have until July 1st, not June 1st, to fill out these forms. The niece took off immediately to see if she could cover part of her work shift. The wife stayed and was able to get needed guidance on where to deliver the financial forms and what kind of documentation to provide. As I interpreted for the social worker, and she asked open-ended questions about care, it became clear that there were other gaps in communication.

For example, the patient had been trying to tell the nurse since yesterday that it hurt his throat too much to have the voicing valve attached to his tracheotomy ventilator all the time. It was a lot more pressure and strain on his throat. He wanted it off right away. The patient had pointed at it and gestured; he had even written down “throat” in his language on a piece of paper, but the nurse could not understand what he wanted. The wife, who had been there some hours, had been trying to tell the nurse as well, but the nurse didn’t understand. And it hadn’t occurred to her to call us. It was not until I happened to be there for the social worker that we were able to get this communication completed. The patient had been straining his throat all night, trying to talk to his nurse, to no avail.

The patient is no longer able to fully close his eyes, so naturally they get very dry. He had been pointing to his eyes and across the room at a drawer all night, and painfully voicing as well, but no one would give him the eye drops, and he could not reach them from bed. Because the wife lives and works in their hometown a few hours away, she cannot sleep at the hospital except on her days off. So the patient is alone most of the time. I interpreted for the nurse that her patient was desperate to get the eye drops and the nurse clapped her hands and exclaimed, “Finally! So that’s what he was asking for! I was holding up all kinds of things but then he just shook his head to all of it!” The eye drops were not scheduled, but listed in the chart as to be provided upon request. Too bad that staff couldn’t understand his repeated requests. His eyes were bloodshot and burning.

The patient also had a quick meeting with a respiratory tech supervisor, because they wanted to take him outside and he was refusing. To complete this short conversation, he agreed to have the voicing valve put on, they upped his oxygen as appropriate while voicing, and he was able to share his concerns. He could finally explain that he was used to having a tank by his wheelchair, and a small ventilator on his lap. The supervisor was able to help him understand that what he was describing was their portable equipment used while transporting patients, while the equipment they were now offering could do everything, including adjusting the level of oxygen as needed, and carrying the full tank. When the patient finally understood that the setup this unit had would work just as well and he would be safe, his relief was palpable. Staff was also saying, “Oh, now we get it! We didn’t understand! We’re sorry!”

While the patient was able to voice, he told the social worker that he felt like this unit was really bad, and the staff didn’t know what they were doing. For example, he said, he was supposed to get physical therapy every day, but the therapist was just not showing up. The nurse who was in the room told him no, it was set for twice a week only. He argued his point over and over, very frustrated, and even quoted the physical therapist as saying EVERY day of the week. Then he named each day of the week, Monday-Tuesday-Wednesday etc. He counted them out on his fingers for more emphasis. She said every day! They then discovered that the physical therapist had told him (in broken language and by gesturing) that he should exercise his legs – himself – every day of the week, to gain strength and hopefully walk again. And he had misunderstood. I asked the nurse when the therapy was scheduled so we could provide an interpreter for better communication, and the nurse told me they don’t schedule therapy on this particular unit, but rather “they come when they come”.

Upon my arrival, as a natural result of so many prior misunderstandings, everything that was said to the patient was greeted with suspicion, frustration, and even disdain. In fact, when he first got his voice back, the nurse leaned down with a friendly smile and asked him, “So what were you trying to tell me all that time when you were mouthing something and gesturing for me to leave the room before, when we were alone?” And he glared at her through his red eyes and answered, “I am not going to repeat it!” But during my one hour there, as each of these issues got clarified, and some got resolved, things changed and shifted. He was able to hear the staff, and they were able to hear and respond to him. He finally had a voice again, and he was starting to see that things might improve.

Everyone sees things differently, but as interpreters we are unique in our simultaneous access to several points of view in several languages. People tend to see one piece of the mosaic and we tend to see a whole pattern. I overheard the nurse in the hall saying to her tech that she was having so much fun with this patient, because she was able to practice her second language, and he was correcting her. All the while, he had been begging to get off the voicing valve, and straining his throat. His eyes were burning and red and he could not get the drops, even when he pointed and gestured. His family members were losing work to come provide services that the hospital provides. He was worried about the burden on his family regarding the financial paperwork that is not even due for another month. He did not understand the new ventilator oxygen setup, or feel safe enough to go outside. He was anxiously awaiting the physical therapist, who was not coming. And he had things to say to that same happy nurse that do not bear repeating.

Through my amazing supervisor, the unit nurse manager was approached about these gaps in communication, and immediately became proactive. She set up a meeting with the key players on the care team that same day. And she set up a meeting with the patient for the following morning, with an interpreter. She planned to attend herself, to make sure the patient concerns were covered, and to clearly communicate the proposed plan of care and rehabilitation. And she agreed to schedule the physical therapy – with an interpreter – so he could understand and fully participate, including the work he needed to do on his own in his room, that would expedite his return home. And there will be a daily interpreter, just for half an hour, while the doctors make their rounds, so he would know the plan of care.

These were simple, small miscommunications that got resolved. None a medical emergency. None life-threatening. But the clarifications were so precious to the patient and family. So helpful to staff. So valuable in allowing a very sick, newly disabled person feel seen, and heard, and acknowledged. How precious? At the end of my shift, when we came back and informed him that he would get a daily interpreter for half an hour each morning, and told him about the team meeting with an interpreter, he actually, with the voicing off to save his throat, pointed to this interpreter, pointed to his heart, pointed to the room with a broad wave, and touched his heart again, with tears falling. We cannot truly fathom how transformative and healing good communication can be. It goes deep.

My new supervisor is working hard to collaborate with the various hospital units and set up better procedures so that patients are able to communicate with staff from the very beginning. And that is wonderful. The sad part to me, though, is that it would have taken less than an hour of interpreter time on patient’s first day to convey all his concerns. I wish so much that everyone in healthcare could fully grasp this. It is incumbent to implement best practices and have smooth patient transitions when someone new is getting set up on a hospital unit. Interpreter services is a small thing to provide, in the big picture. But for the individual under the blanket, it is huge. Let’s not leave patients without a voice. It matters.

COMFORT

I was with a severely anxious young patient the other day. She was doing her very best to be positive and strong, but her cancer had come back. It was spreading to new areas. She was at our hospital to have a portacath placed into her chest ( a sort of a mainline to the heart area) so she could start chemotherapy. This patient had really thought she was cured for life, after two years with no symptoms. She had come to this country as a young and hopeful bride, but her husband had left her, and her family was in another country, so she just had a friend from church to accompany her for this procedure. It was very sad. Imagine going through something like cancer treatment or end of life in a foreign place without any family.

As usual, we had quite a bit of waiting time. Not being able to talk about her medical care, we just chatted as medical interpreters do about everyday things. I noticed that if we joked, her laughter was a big relief to her. So we kept telling stories that put a smile on her face, and the time went by. As staff joined us, we got them engaged in a bit of play as well. Her face lit up when the nurse asked if he could “borrow” her arm to put the blood pressure cuff on, and she jokingly said, “Okay, but only if I can have it back!” She meant her arm, but he understood she was talking about the blood pressure cuff. So he told her she could keep it, because otherwise they were just going to throw it away at the end of the case. When he found out he was saying they were going to throw away her arm, he was like, oh, no, no no!! And the nurse and the patient and the friend were all giggling. It broke the ice.

Once in the procedure room, our nurse started bantering with the surgical nurse and I kept a running interpretation of everything they were saying. The patient could hear how relaxed they were. How confident they felt about doing the procedure. Everyone was being so kind to her. Everyone was attentive and encouraging. Was she cold? Did she want another blanket? What kind of music did she like? They had thousands of artists. She could choose any music style or band, no problem. Was her pillow okay? Was her head comfortable? Did she have any questions? This shouldn’t take too long. This was going to be fine. We do these all day long. Let us know if you feel any discomfort; we can always give you more numbing medicine or sedation. You just let us know.

Everyone was professional, but also clearly knew each other well. At one point during the preparation, our nurse finished a simple task the surgical nurse was supposed to handle, like bringing out a drape, while she had stepped out. When she came back, our nurse told her, “Hey, my back is hurting!” The other nurse asked why, and he said, “From carrying your weight around here!” They kept bantering, all of which I was interpreting, and then our nurse explained to the patient, “She acts like my baby sister – so irritating! But she’s a good nurse!” The patient smiled, even on the table in the procedure room, even being prepared for a portacath, even being shot with lidocaine to numb the area, even feeling some of it. Even with the dread of recurring cancer. A moment of levity. And comfort.

I remember when I was having my first baby. It was taking longer and was much more painful than I had expected, even going into it knowing I would not have any pain medications. At some point, the two midwives stepped out of the room for a break, and I could hear them chatting and having tea in the other room. It was so soothing. I felt sure that everything must be going great if they were able to leave the room and relax. Seeing that they were not worried about me was comforting. Of course leaving the room is not always appropriate, and neither is humor, but when there is something we can do to ease the tension and the fear, to lower the stress level, as our patients face these trying and painful situations, it is so worthwhile.

Seeing this patient comfortable and even happy as she waited for a procedure none of us want to have was a sweet moment for all of us. Laughing together with the nurse before we went into the procedure was clearly a relief to her. And the staff kept her cheerful even in the procedure room. The smile was still gently on her face as she drifted off to sleep.

Helping someone feel safe and well cared for under these conditions, allowing for some comfort even where there may not be a cure – these are too often overlooked in the rushed, high-tech cutting edge science model of healthcare. But it is vital to remember that underneath every hospital blanket is a real person having an emotional as well as a physical experience, in that utterly lonely space of dealing with their unique body’s failings and looming mortality. Reaching out to make sure they feel seen and cared for is what makes them realize they are not alone. And that, my friends, is healthcare at its finest.