Oxygen part 13

Today's topic is not so much about oxygen as geriatric assessment.

The doctor who did the bad job on the assessment outlined in Oxygen part 12 was back on Friday. She arrived as the patient was getting ready for physio. She stayed long enough that the physio appointment had to be scrapped - and there is no physio on the weekends. Which means three more days of lying in bed despite the doctors constantly telling her she has to get up and get moving.

The doctor, a specialist in geriatrics, did her best to tell the patient that the next step had to be an extended care facility - she would not be able to go to rehab because she couldn't walk.

Except the patient can. She has been doing physio in the bed and has graduated to doing the parallel bars in the gym. She can walk if she has adequate support. For some reason this is discounted by the doctor doing the assessment. (Keep in mind that this is a geriatric specialist who did an assessment without checking first for visual or auditory impairments, so we already have a precedent for discounting the patient.)

Another element that is not mentioned by the doctor is that there has been a recent change in heart meds, because the physio noticed that the patient's heart was responding erratically to exertion and it was impeding her progress. So the meds were adjusted this past week - which means she hasn't had a chance to prove a faster rate of progress under the adjusted medications.

This is significant, because the patient was living in an assisted living facility before she fell - and she needed to use a walker even then. It is possible the fall was caused by one of the "blackouts" related to her heart's response to stress - and in theory that has now been addressed through the minor adjustment to the meds. She was managing quite well with minimal daily care - most of it provided because of her blindness and to give her some stability for the more complex tasks like showering.

She still needs help getting out of the bed - and this is not a surprise, since she has been in the hospital for 11 weeks and for much of the first month she was not able to get out of bed because of the combination of the treatments for her achalacia and the expected strains and bruises from her fall. Then, when she was deemed well enough, staffing shortages complicated her schedule: she is too heavy for a small person to help out of bed, and so some days she didn't sit up at all because no-one was available.

Staffing shortages also played a role in the catheter situation: the patient does not want to lie in a soiled bed, but the nurses are too short-staffed (especially on weekends) to take the time to help her to the bathroom. There is a story about the commode - initially the patient had a commode, but it came apart twice when she used it. The staff said the commode itself was the problem - it was broken - but instead of exchanging it for another one, they took the expediency of a catheter - with the patient's consent. Why did the patient consent? Because she had become accustomed to waiting up to 3 hours for staff to answer a bell.

Back to the geriatric specialist.

This doctor, who did such a bad job the first time she came, showed up on a Friday morning without any warning, and told a 93 year-old woman who has slowly been making progress that she had to make plans for going into extended care. No prior contact with the family. Not taking into consideration that this is a patient with a history of anxiety issues (controlled at home through occasional use of Ativan/Lorazepam). She pre-empts the physio that the patient knows is crucial to proving she can return to her home. And she keeps stressing that the patient has to have a plan.

The patient has a plan. Her plan is to continue the physio, get back on her feet, and go home.

There was a family member present when the doctor was there on Friday - a visiting granddaughter from Vancouver. The doctor wouldn't know this, but the granddaughter has only been in contact with this side of her birth family for the past 8 years, and has spent maybe a total of two weeks in her grandmother's company over that time. She is not an authority on her grandmother's routines or abilities.

This is significant, because the doctor called my other half this morning to press the need to plan for extended care. The doctor said she understood that the patient had barely been managing at the assisted living facility.

Barely managing? Hm. She went down for dinner every day - with someone to help her change to the portable oxygen tank (a task that tasks less than 2 minutes) because she can't see very well. She was a regular at the knitting club, church, and the singing group. True, because of her visual impairment, someone administered her pills and made her breakfast. Much of her day was spent in her apartment, knitting, listening to the television or recorded books, talking on the phone. Compared to many of the residents in the facility - the ones in wheelchairs, the ones who have no vision at all, the ones who have Alzheimers - this woman is quite highly functional.

Until she went into the hospital, she was mobile and alert and taking an active role in the community. It is a tribute to her strength and determination that she has survived the hospital.

The other thing the doctor said was that she had not prevented the patient from keeping her physio appointment. This may be her impression, but it is not true - and we have witnesses.

When my other half expressed her concern that the geriatric specialist seemed to be acting on wrong information, the response was that the conversation was not getting them anywhere, and the doctor ended the call. This was similar behaviour to the behaviour the patient reported: when the patient tried to tell the doctor about the obstacles to getting better when doctor orders aren't followed, when physio is withheld etc. According to the patient, the doctor dismissed those concerns as if they were immaterial and returned to theidea of a plan for extended care.

In other words, the doctor has made her decision and does not want to hear that the decision has been made on the basis of incomplete - and wrong - information.

Is my view coloured by a false view of the patient? Or is it an assessment based on 18 years of knowing this woman?

Given the lack of follow-through on the physio/rehab by the staff at the hospital, and the way in which the geriatric specialist conducted herself in the three contacts she has had with the patient and the patient's family, I don't think the patient has been treated ethically. She is showing progress in rehab - unless the medical team can guarantee that an extended care facility will continue to work toward recovery, they ought to be planning rehab.

When all the dust settles, an extended care facility might still be the place where her needs can be met most effectively - but that is a decision that should be arrived at through ethical means, not through the patient having been hamstrung by the system and pushed there by a doctor whose agenda does not reflect the best interest of the person who is lying in the bed.

NEWS FLASH

So the main doctor in charge of the case has called for a meeting tomorrow at 1 pm. He said only the plan to go to extended care will be discussed and there is to be no criticism of the medical staff or the meeting will be stopped.

Oxygen part 12

Today's visit was before noon. Marie was initially asleep, but the nurses came in to move her up higher in the bed (the bed which was set to about 30 degrees - I have given up on pointing out the sign on the wall. At this stage I must assume that either the doctor has changed his mind or most of the staff are incompetent.).

When she woke up, she was in fine fettle. Someone - she wasn't sure if it was a psychologist or psychiatrist - had come to do an assessment. Apparently Marie had only managed to correctly answer 11 out of 16 questions.

Marie told me that she had wanted to know which ones she missed. One of them was a test where the shrink asked Marie to repeat after her:

"Tinkle, tinkle, little star..."

And Marie said "Twinkle, twinkle, little star..."

The shrink pointed out that she had said "tinkle"not "twinkle".

Marie's hearing aid was in the box on the bedside table.

"Did you tell her you have some hearing impairment?" I asked.

"Yes, but they don't listen."

"What else did you get wrong?"

Marie held up one hand and pointed at it with the other.

"What's this?" she asked.

"Your hand," I said.

She shook her head. "No. I am pointing at my wrist."

"Could you see that?"

"No. She was standing right there, right in the centre."

Again, the macular degeneration. With her peripheral vision, Marie had made out that the doctor was pointing to her other extremity, but she couldn't see it clearly. So she failed the question, which is supposed to be testing her mental acuity. I think it was more a test of the acuity of the doctor, and she failed.

"Did you tell her you are blind and can't see anything clearly in the middle of the field of vision?"

"Yes, but they don't listen."

I then heard about how it was the second night in a row she had needed extra painkiller because of the pain in her gut. The staff had gone through the dance of saying they would have to call the doctor and get an order because there is no standing order. Now, Marie is under the impression that there IS an order because when she was at the height of her distress some weeks ago, there WAS. It is hard to know if this has been changed and not communicated to Marie, or if it was changed and Marie was told but she has forgotten, or if it was not changed but the standing order is so far back in the file - like the order for the bed angle - that no-one thinks it exists.

They got the order and, for the second night in a row, brought hydromorphine. Marie, for the second night in a row, refused to take it.

Now, when Marie came in to the hospital, she told them she had previously experienced negative side effects to morphine. They gave her dilaudid (hydromorphine) as an analgesic and she had a couple of rough days which included hallucination. The doctors later decided that this was likely more owing to her electrolytes being unbalanced than any reaction to the dilaudid. This has been explained to her many times by the staff and by us, but she does not believe it. She has even had dilaudid since then - with no negative side effects. But Marie doesn't want to risk it - and given her helplessness in the hospital, I have some sympathy with her position.

To her mind, she has told the doctors she can't have morphine, and the hallucinations proved it. So she does NOT expect nurses to try to give her morphine, and she complains when they do. The nurses are caught in the middle - a patient who needs pain relief but refuses what the doctor orders.

"So what happened last night?" I asked.

"They went out of the room to call the doctor again, and then they came back in and gave me an injection. For all I know it was the hydromorphine and they just waited outside the room."

"And did it work?"

"I was out like a light and have had trouble waking up all morning."

"That's what you want it to do - knock you out so you can sleep. No hallucinations or side effects?"

"No."

"Then it's all good."

But it isn't all good, of course. We should not be having this conversation at all. She is of the opinion that no-one is listening, and that the staff are doing things that put her health at risk. Since we have already witnessed many incidents where this is true, it is hard to combat the impression.

The nurses change so often that Marie seldom knows who to expect - and whether or not the person she gets will know about her impairments or issues. My experience is that the nurses are generally quite competent at their tasks, but ill-informed about the needs of the patient. That is one of the problems with such a fast rotation - nurses don't get to know how to meet the need in a competent and efficient manner, and the patient has to keep going over the same territory - or fear the same risks. It is exhausting for the patient and frustrating for the nurse, who perhaps unjustly appears incompetent or stupid.

Last night we had a "floater". She knew very little about Marie or her condition, but she was a nurse who paid attention and who listened so everything went well. So is it some kind of compassion fatigue when the other staff - the ones who have been dealing with Marie for almost two months - either can't get it right or don't communicate the changes in the care plan?

Oxygen part 11

The nurse today was young, and she reminded me of one particular student at Aristotle University: a Greek sculpture come to life. This one had her name badge on backwards, so I didn't know what to call her.

When I arrived, the bed was at a 20 degree angle. It was left there by the previous shift. I cluck about this and point out that the bed is supposed to be higher, looking pointedly at the sign on the wall. The nurse asks Marie if she wants the bed raised, and soon it is at 35 degrees. Marie is coughing a bit, and she has abdominal pain. She is due for her next painkiller at 9:30 and it is only 7:15.

The nurse takes her vital signs, and they are excellent - 106/63. There is some discussion about whether or not this pain is related to constipation. Marie says it IS bowel pain, but she has had a couple of movements today so it is NOT constipation. She rates the pain at 8 out of 10. The nurse goes away to see what can be done about an analgesic.

While the nurse is out of the room, Marie says she wonders if something has irritated her bowels. "Like what?" I ask. "Oh," she says, waving toward the feeding tube "all this stuff they keep pushing through." She is bored, she is uncomfortable, and she is wondering where she'll go next.

I want to say to Marie, "You HAVE to tell them when the head of the bed is too low," but there are several other things I want Marie to hear, and I am choosing my battles. After weeks of the staff not paying attention to the instructions in the book or the sign on the wall or the repeated instructions from family, I can hardly expect Marie to feel like they will listen to her.

It seems like such a simple thing to me: the patient cannot control reflux because of the procedure done on her esophagus. She is supposed to stay at an angle of 35-40% minimum for 4 hours after feeding. She is on continuous tube feeding, so she is supposed to be at that angle all the time. It has been almost two months, and the message doesn't seem to stick with the staff. I have spoken with the nurses, with the nurse practitioners, with the doctors.

They are all caring, in their way. I don't want to suggest they aren't. But many of them seem to lack the laser focus that Marie herself brought to nursing - the attention to detail that made her a gold medallist. The reasons why they are lacking in focus - well, I could speculate. Some have been undergraduate nurses who are learning how to pay attention. Others have been around longer, but they are overworked and Marie is supposed to be a fairly straightforward case now - heading to rehab.

The nurse returns. She has been authorized to administer Tylenol 3 through the feeding tube. So she puts some water through the line, then the Tylenol mixed with water, and then she flushes with more water. She accomplishes this with no fuss, no mess.

Oxygen part 10

Today I brought the patient the stimulating circular from the pension plan, the free 2010 Agenda courtesy of Our Canada (she tried to give it to me, but I said she would need to write her future botox dates in it...), and the Land's End catalogue.

When I came in, the bed was at 25 degrees. It had been lowered to that angle and the person who lowered it had gone away, promising to be right back to finish whatever needed doing. "How long ago was that?" I asked. "Oh, ages. They go away and they take their breaks and whatnot and sometimes it's hours." In the meantime, the patient was trying to eat jello.

I reminded her that the bed was supposed to be kept at a higher angle to prevent reflux because of her inability to close the esophagus. We still have the sign on the wall, and by now I feel as if the patient is alert and healthy enough that she should be able to find the controls on the bed and raise it herself. I do it.

She showed me the special socks that had arrived along with the Alberta Health Services feedback brochure. The socks are very nice - supersoft fuzzy taupe with rubbery treads. The misplaced comma on the inside of the brochure made me cranky.

There is a 3-step process if a patient has a concern.

"What concern?" Marie asks. "Do I have a concern?"

I can't tell if she's joking or not. "Do you have concerns about the way things have been done here?"

"Don't get me started," she says.

Step 1 is to discuss the concerns with the team. Okay - so we did that with the issues of the oxygen and the suctioned fluid and the bed angle. And although none of these things was resolved quickly, over the course of several weeks we seem to have gotten to the point where only the bed angle is still not understood.

Step 2 is to contact Patient Relations if Step 1 has failed to resolve the concern. Now, think about this: Patient Relations. The text of the brochure makes it clear that everything is about the patient's concern. The message I get when I look at this brochure is that the patient has a problem, not that there is a problem the hospital needs to address. So if we had gone to Patient Relations with our problems - the understaffing of the unit, the dangerous mistakes regarding oxygen and the bed angles, the peculiar performance of food services - what exactly could they have done? These are not individual problems; they are problems with the system. As such, they are not "patient concerns"; they should be seen as concerns of the hospital administration.

Step 3 is to contact the Deputy Patient Concerns Officer if the other steps have not resolved the concern. If that doesn't work, you can go to the Alberta Ombudsman Office with your question or concern about the fairness of the Deputy.

Now, let's look at this process again.

A patient - presumably someone who is sick enough to require hospital care - not only has to deal with their care team over the thing that is wrong (we'll call it a "concern" if it makes everyone feel better, but I don't consider repeated failure to provide necessary care a mere "concern"), but they then are expected to take the initiative to go through two more levels to follow-up on their concern. Sounds like a lot of work to get the staff to agree that oxygen needs to be turned on and connected.

On the plus side, today I almost bumped into one of the staff who has given me the cold shoulder since the first oxygen incident. We were both surprised enough to smile. Maybe she understands that my "concern" was about a situation, not about the performance of one person.

Oxygen part 9

Gaining strength and health means having more energy for both positive and negative pursuits. On the positive side, we have now had a couple of days where Marie was able to sit up for a period and use her magnifier to look at cards and catalogues.

On the negative side: complaints.

Today it was constipation. The original complaint is a valid physical one: when you are bedridden and have little control over your diet and movements, constipation is a serious issue.

When you are in a hospital and it's the weekend, so they are shortstaffed and you have the trainee, getting the constipation issue dealt with is also serious.

Last week Marie was complaining about being given laxatives and then not being able to sleep at night because...they worked. Of course, her wandering roommate was keeping her awake anyway. They stopped giving them to her. The result was hardly surprising.

There might have been some comical moments today as the trainee tried, with assistance, to get Marie in the sling so she could be transferred from the bed to the commode. Not comical to those doing it, though. Marie says they had no idea how to do it - she was having to direct them. Even when they did manage to get her there, they had somehow managed to get the incontinence pads hooked into the sling so she wouldn't actually be using the commode - she would be sitting on it but soiling the pad which was still attached to her.

We were there for about two hours. The complaints were about how much the constipation hurt, how much she had to fight to get medication for the pain (and this made me wonder if the staff might have a reason to withhold the analgesic, since some of them probably complicate the constipation), how she was trying to get them to cut to the chase and administer an enema but they wouldn't...

Of course, it's the weekend. An enema would mean having to stay with the patient, do the clean-up etc. With the trainee probably having four other patients to look after, it is probably a route which is seen as less efficient than the alternatives. So Marie suffers the pain all day, the indignity of the sling, the frequent attempts which leave her sweating and exhausted. From her own account, she was dismissive of the nurse-practitioner at the end of the shift. Orders to deal with the constipation were left, but according to Marie the orders were for the morning staff and not for the evening shift. I can imagine a couple of reasons why this might be. First, perhaps the effort already applied would yield results overnight. Second, staffing on a weekend night shift is probably even more skeletal than during the day, so it makes sense to wait until the staff complement is larger (getting Marie into the sling takes more than one person).

If she has the strength to complain tomorrow, that would be uncomfortable but good. If she is so exhausted from attempts to solve the constipation that she cannot muster the energy to complain...well, that will be serious.

The roses I brought Thursday look fabulous. Today our treat for her was to use the wonderful lotion Tina sent - each of us took a foot and we massaged the lotion into Marie's dry feet. She didn't complain about that!

Oxygen part 8

Good news! This morning the scummy container had been removed!

Even better, Marie was alert and quite possibly in the best shape she's been in since going to the hospital 7 weeks ago.

After I turned on the lights, I complimented her on her perkiness, and she said "It's because I just had a fight."

It seems someone had come to give her her morning medications. These are mixed with water and then injected by a large syringe through the feeding tube, followed by water to clear the tube out. This morning, whoever was giving the meds dropped the syringe on the floor. Marie has macular degeneration - she has very little vision in the centre but when something unexpected falls, that's when it will be caught by the peripheral vision.

"You can't use that," she said.

"Why not?"

"It's been on the floor."

The floor is generally not overly dirty - but I noticed yesterday that a brownish sticky fluid had spilled on the floor and the base of the pole. Probably nothing more than a bit of spillage from filling the feed bad with Pulmocare. I noticed it for the first time last night, and the cleaning staff were coming in as I was leaving this morning - so it hasn't really been there that long.

Marie is a former nurse. She was drilled in sterile techniques. Although things have changed in the nursing world in the past 50 years with regard to some procedures, you cannot convince Marie that you can use a dropped syringe.

She said the syringe was put back on the table. The person left the room, came back and fiddled with something by the sink. Marie couldn't see what, because that is in direct line of sight. [Despite our pleading with Marie to go to the CNIB and learn how to use her peripheral vision more effectively, she has never been willing to go.]

The person (I cannot be sure if it was a nurse, and LPN or what) came back to the table and prepared to give her the injection. But Marie noticed that the same syringe was picked up off the table.

"You can't use that," she said.

"Why not?"

"That's the same syringe, the one you dropped."

"You see more than we think." A new syringe was fetched.

This is, of course, Marie's report of the incident - maybe the person on the other end of the syringe would tell a different story.

I cannot be sure there wasn't a replacement at some point, a replacement that Marie could not see (although she is quite certain). I am interested in the degree to which the staff do not understand the nature of her blindness even after 7 weeks - and the possibility that they were willing to take advantage of that blindness.

Why would someone use that syringe? Lots of reasons. They might not feel they have time to go and get a new one. They might reason that the floor is pretty clean. They might be aware that the whole health care system is undergoing another round of budget cuts and revisions, so they are conscious of the waste. Are any of these reasons sufficient for potentially putting a patient at risk of infection?

It is not as simple as "Of course not! They should get another syringe and start over." The pressures on staff are constant - pressures from the administration, pressures expressed by the authorities and elected officials in the media. Like the stuff that was in the Medi-Vac pump container, these things breed a culture that might put patients at risk. There were lots of concerns over sterile technique when Marie was at her assisted living complex; Personal Care Attendants have minimal training, and there were lots of issues when they were admonished by Marie for improper procedures.

In that situation, when a resident speaks up about these things, it is the resident who gets labelled as "difficult". We went through a very difficult period at the residence - a period of shunning, of accusations of racism, of all kinds of things - after Marie spoke up about improper procedures. We eventually got things sorted out, but it took a long time. And every time there was a change in personnel, there would be new problems.

It is to her credit that Marie has not been cowed by that experience into remaining silent when she sees mistakes in the hospital.

On another positive note, the medical staff have largely been wonderful with her (with the exception of the one resident who had his arms crossed and was rolling his eyes, clearly wishing he were anywhere except at this patient's bedside). The nurses and aides have had a very difficult job trying to provide quality care for a woman who has been in pain and lacking in mobility, and they have generally been excellent given the constraints under which they are working. Taking care of Marie means having to take the time to ensure things are done and done correctly; time is one of the things that nurses are denied in the effort to maximize the efficiency of the system. The returns diminish quite quickly when nurses can no longer spend time to care for their patients.

Oxygen part 7

Yesterday afternoon we got a call from cousin Connie - she was at the hospital and Marie was having trouble staying awake. I was about to leave the office for the hospital, so both Candas and I arrived within a few minutes. I got there first.

The room was dark - once again no-one had thought to turn on the light. Or maybe the staff thought it best Marie rest. She had been down for more x-rays. She'd been retaining fluid, and when they inserted the catheter she had an extra litre of urine in her bladder. She had been too tired to tackle her lunch, but the Kangaroo machine was hooked up and she was getting 40 ml/hr of the Pulmocare.

Marie would struggle to say something, and then fall sleep. Her body was twitchy, but she seemed unable to fight the drowsiness. I turned on the light. Connie had already checked the oxygen connections, and the level had been boosted. Staff were checking her vitals every 2 hours - and they were looking pretty good compared to two weeks ago.

Candas arrived, and Marie gradually became more alert.

It seems her roommate, the wanderer, had had a very busy night. Wandering around, talking to visitors (which might have been the guard). Marie couldn't stay asleep. Then the bladder scan, the x-rays, and the catheterization.

The Medi-Vac pump still has the scummy liquid in it from when Marie's esophagus was being suctioned about 3 weeks ago. We've asked the staff about this before - and they told us that someone is supposed to come and add a solidifying agent to the waste before it is disposed of. We expressed our concern that this stuff seemed to be breeding some kind of mold, and we were told it was completely sealed and it would be fine until someone could get to it.

Today I took a closer look. The level of the liquid inside was about 250 ml. A bit milky, with something grayish floating on the top. You can see a pinkish scummy line where the liquid used to reach - and I wondered how it could be evaporating if it was sealed. All but one of the holes on the top were capped with red plastic. The remaining hole was not capped, but it had the suction tube attached - about 6 feet of clear plastic tubing that fell down, looped back up, and then hung dangling over the floor. The tube is not capped. So, in fact, this container is NOT sealed.

We asked the nurse again about getting this removed, and again we were told about the solidifying agent and that it wasn't the nurses' job but someone would get to it. I did not want to make a fuss about the fact that it was NOT sealed - not in front of the patient.

Marie was chuckling about waste. Apparently she'd had a linen change at he end of one shift, followed by a linen change at the beginning of the next shift - two changes in about half an hour. She tried to tell them it had already been done...