Thursday, June 25, 2009

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?

Wednesday, June 24, 2009

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.

Monday, June 22, 2009

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.

Saturday, June 20, 2009

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!

Wednesday, June 17, 2009

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...

Tuesday, June 16, 2009

Oxygen part 6

The past few days have been quiet for us at the hospital. We each try to be there once a day - either together or separately. Food services are still a problem. The people who drop off the food must not be aware that the patient is both blind and unable to move much in the bed - they continue to leave her trays on the table at the foot of the bed. Sometimes a nurse or LPN notices and moves things within reach, and sometimes they do not - and food services takes the stuff away again, untouched. Cans of Pulmocare and bottles of Ensure continue to arrive - along with jello and pudding and soup (the soup accompanied by an envelope of protein powder which we mix in - the envelope is small and has fine print, so even if Marie knew it was there she might not know what she's supposed to do with it.) We convince Marie to sip some of the Ensure (we bring the cold ones from the patient fridge, because the ones that are dropped off are room temperature and unpalatable). The Pulmocare must be what is going into the tube - but I'm not sure why there is a growing stockpile.

Yesterday I found her in the dark at 1 pm. Of the two lights she can control from her call button, the lower fluorescent tube has burnt out (we reported it last week) and she can't reach the switch for the overhead lights - and no-one else had thought to do it.

Seven weeks. Even if we are only there an hour a day, calculate an extra 30 minutes each way to drive there or take transit. Three days a week I can just pop over from work. For Candas it adds up to a minimum of 14 hours a week; for me about 12. Some days we stay a lot more - but an hour is pretty much the minimum. And as the previous posts illustrate, we do have to go. That's more than 182 hours so far.

Marie's generation remembers what it was like before universal health care. In some ways, our generation has not yet processed what end-of-life care ought to be - both personally and societally. The boomers are getting older and, no matter how healthy they manage to keep themselves, we are going to have to figure out what part should be played by our hospitals when that huge demographic approaches the end of life. There is no room in hospitals now, and there are not enough palliative or longterm care facilities. At the same time, it would be foolish to build facilities to accommodate the boomers unless there is a sensible plan for what to do with those facilities when demand stabilizes (assuming the post-boomer society will have lower numbers of aging for a couple of decades until population growth brings us back up to regular demand).

Robert Clinton was telling me a week ago about how his family brought their dad home for the final 7 weeks of his life. He needed round-the-clock care, but the hospital was not a good place to die. So they hired private nurses for those times when family could not be available. It was expensive, and it drained his savings.

What IS our social contract about dying and universal health care? Hospitals - full of strangers and noise and tension - are not places where anyone wants to die, but relatively few of us in this younger generation have had the experience of enduring a relative's final illness and death at home. Of course, I am not talking about sudden strokes and heart attacks, but those prolonged deaths where multiple systems are gradually declining into chaos. We haven't given much thought to palliative care facilities, but we will have to. The field of medicine is more interested in keeping people alive than in providing a good death, so universal health services are usually geared toward systems that keep us going. We are busy addressing disease, trauma, genetic disorders - but we are still unclear about the degree to which our tax-funded system should be managing death.

Marie's condition is not fatal. The botox injection - which we are told will have to be repeated - has worked to some degree. The job now is to restore mobility in someone who is fearful and who has challenges in terms of her sight, her weight, and her arthritis.

Many of the patients in the hospital have a strong yearning for home. I don't hear that from Marie - perhaps because most of her life was spent in a succession of rented houses. According to a researcher I met last week, we now have more people living alone in Canada than ever before. Who will take care of them? What is home? Where do people want to die?

Our house is not Marie's home - she's only been here maybe 20 times. If we were to undertake the palliative role, it would have to be a commitment to her last days - because the stairs to the outside mean we can not accommodate her mobility issues. She's too heavy for us to move her. Once she's in, she's in. The primary benefit to her would be that she'd be with people who know her name, and there wouldn't be the illness of hundreds of others to contend with. Her current roomie is a wanderer with impaired brain function, so there is a security guard in the hallway just outside the door. The constant in and out is hardly restful.

My colleague Stewart has spoken of his family's decision to take care of his grandmother at home - they felt it was the right thing to do. Stewart's a nurse, so he had the skills. Is it wrong of me to say I don't want that job? Shouldn't we all be willing to help our family members die in comfort and dignity?

Right now, there is no doubt that comfort and dignity might be better provided at home than in the hospital. It's not a guarantee - but we're also seeing that it is not a guarantee in the institutions. I don't mind the thought that we, as a society, have agreed to find ways to ease end-of-life care; I find it more congruent with my beliefs than spending pots of money on treatment for disease and injury that are easily preventable (such as extreme sports, diseases related to smoking, obesity and unprotected sex).

So when are we going to have a serious discussion about how we, as a society, proceed? We can't have that discussion when our politicians are busy doing the quarter-by-quarter bean counting because they're hoping by being tough on the economy they can be reelected. During the recession, they should have been buying property to turn into palliative care facilities which can be operated much more cheaply on a per bed basis than regular hospitals. Instead, we're seeing debate over new medical facilities aimed at winning votes in communities because people think we need more full-service hospitals. If our full-service hospitals weren't clogged with longterm care patients, maybe the system would be flowing more smoothly.

We're not only talking about geriatric care here. Intensive Care Units are seeing more and more longterm cases as we make advances in procedures and prolonging life - prolonging it with machine intervention. We're not having that dialogue either. At what point will we recognize that prolongation of life is not always the ethical response for the individual or for society at large?

Tuesday, June 9, 2009

Oxygen part 5

Yesterday was a good day. Marie was feeling better, and despite the low oxygen setting her levels were in the normal range. She had physio and Big Mike, as she calls him, managed to get her standing - twice! Someone had taken away 12 cans of Pulmocare and 5 bottles of Ensure as well as some of the other paraphernalia that was cluttering up the place. And she'd been told the IV would soon come out - she'd be getting all her nutrition and liquid needs from the stomach tube and orally. This is terrific!

Her first warm food in 5 weeks was soup - but she tells me there was some confusion and instead of letting her eat it the usual way, they put it through her feeding tube! They had also given her prune juice - and she thought they might have given her a laxative as well.

Today I had to work all day, so Candas and I went this evening. The head of the bed was down too low AGAIN. We put it up. Later, when the ice cream came, Candas tried to put the head even higher, but the controls on that side of the bed wouldn't work at that point (again!), so Candas went around to the other side and those controls worked.

The water bottle was off the oxygen - probably a good thing, since she doesn't have moist air at home. Supper had been brought and taken away again before she even knew it was there - she couldn't see it and no-one said anything to her - or if they did, she couldn't hear. A nurse kindly brought her some ice cream while we were there. The nurse suggested we might want to bring food for the patient, because the food services are "hit and miss". The patient in the next bed is new - she transferred from another unit. Her food had to come from that other unit - and took several hours, according to the nurse.

The only stats on Marie's chart were from 16h00. Her blood pressure was the best it had been in quite some days. Her blood oxygen was 94. Looking good!

When we asked her about her day, and the physio, she said it had been difficult because she got so dizzy (any wonder, after being bedridden for almost 6 weeks!). And apparently, according to Marie, her blood oxygen went down to 80 when she exerted herself. But, according to the nurse, this is not entered on the chart - the physio gives his report directly to the doctor.

Marie was still suffering the effects of the laxative, but she was waiting for the shift change and the bedtime clean-up. She was upset about how dirty her hair is - I don't think it's been washed since she went into the hospitral - almost 6 weeks. She's been having trouble hearing, and today she put the hearing aid in. It kept squealing. I checked the manual and it said the reason for this would be excessive cerumen (ear wax). Candas says she has already spoken to the staff about whether or not the increasing deafness in the one ear, quite noticeable in the past couple of weeks, could be because she's not getting her ears cleaned. Apparently that is someone else's department. Of course, perhaps the patient could clean them out herself if they gave her the tools to do it - but since she can't get up... We'll have to bring something along and do it.


We are seeing more and more the reasons why Liepert's plan won't work. By having fewer nurses and assigning care tasks to a raft of less-specialized/less-trained aides, there is no-one who sees the patient on an ongoing basis. They come in, do their one assigned task, and go out - often not even talking. The patient gets no stimulation, and no-one gets a clear picture of what is happening to the patient over the course of the day. When a nurse has a small enough patient load to actually help with the care, the nurse can spot emergent problems. The nurse can notice if food has not been eaten - and she might know what the effect will be. The nurse can spot if the patient isn't really tracking, and check the oxygen levels. The idea of hiring cheaper untrained staff so the nurses seldom have to come to the room unless they are administering medication - well, it removes the element of attention and caring from the role of the nurse - and it is that attentive role which has made the nurse so valuable in the medical system. It is the nurse who can see if there has been a change in the patient's condition - but only if the nurse is actually able to be at the bedside often enough and long enough to know what that condition is.

The nurses who keep lowering the head of the bed clearly do not know what procedures have been done to this patient, or they would understand why the bed MUST NOT be lowered. But none of them really have time - and Marie is so grateful to the few who have spent a few minutes talking to her.
..

Sunday, June 7, 2009

Oxygen part 4

This morning the oxygen was at 3; this evening it was set at 2. Marie seemed to be doing well on it, though - her mind was very sharp. Her levels had been checked several times between 3 pm and 7 pm (but barely at all from mid-morning to mid-afternoon). There was one nurse for 5 patients, not much point asking questions. The nurse repeatedly called Marie by another name - "Frances". Marie never uses that name, but she has given up trying to correct the staff.

One of the indignities of this stay has been the bathroom arrangements. The shortage of staff meant the nurses didn't want to help the patient to and from the washroom - it took two nurses to get her out of bed, which meant while they are helping Marie there are 9 patients who can't be tended to. The commode in her room broke, so they catheterized her. They have taken the catheter out, but Marie still can't make it out of bed by herself. The nurses can't answer the bell (I was told yesterday it was a 4 hour wait...) for non-priority things like ensuring the patient gets to a commode or the washroom. So a bedridden patient has no choice but to soil the bed. This is then marked on the chart as "incontinent".

Our health board and the minister of health, Ron Liepert, have been saying we have a glut of nurses and they're cutting positions. I am thinking of inviting Mr. Liepert to come and take a weekend shift at the hospital, not as a mock patient but as a nurse.
Does he really think essential services are not affected? Oxygen, food, and bodily waste elimination seem essential from my perspective.

Saturday, June 6, 2009

Oxygen part 3

Today I visited the hospital twice.

At noon, the patient was wondering why nothing had been delivered for breakfast or lunch. She is being tube fed, but for the past several days she has also been getting jello and apple juice.

Two plastic containers of apple juice and one of jello were on her tray, along with 4 more tins of Pulmocare. Her tray was at the foot of the bed, beyond her current reach. She can't even sit up without assistance, partly due to pulling muscles when she fell (the reason she came of the hospital) and partly from 5 weeks of being confined to the bed. She has macular degeneration and can't actually see what's on the tray at that distance. The paper slips showed that one apple juice was for breakfast and another, with the jello, was for lunch. She hadn't known they were there.

"People come and go," she said. "They don't say anything to you, and I can't see what they're doing."

There are eight tins of Pulmocare piled on her bedside drawers, as well as six bottles of Ensure. There are at least 8 more tins beside the sink, and 5 more Ensure. I added the four new tins to the pile. What are they for? The number of tins has been growing - does someone think she's actually ingesting them? At this point, everything but the jello and apple juice is controlled by a machine that pushes it in slow and regular amounts through the feeding tube, so it would have to be the responsibility of someone in the hospital to put the food into the bag suspended from the pole.

I went back at 6:30 pm. I took the chart from the wall and looked at the entries for the 5th of June. There, at 16:45, was an entry showing her oxygen machine set at 3 and her blood oxygen saturation at 97%.

What was missing was that her oxygen had been set below 2 and her saturation was only 75%. The output was raised to 3 and it took several minutes to get the saturation into the 90s.

So I asked to speak to the charge nurse. When she arrived, I asked why the chart was missing this information. The charge nurse told me that she had been told the reason the oxygen reading was only 75% had been because the patient's fingers were cold. A reading from the toe was 97%. So I told her that I knew this version of the story was incorrect, because I had a phone call when it happened. Two readings were taken on different machines, THEN the oxygen machine was turned up to 3 and eventually a 97% was reached. I asked if the previous incidents had been recorded or if they too had been left off the chart. She said she didn't know - but that she had made handwritten notes about the incident on Wednesday (when the oxygen hadn't been hooked up).

I told her the doctor had called us Thursday and he claimed to know nothing of these incidents, so he had been thinking the patient didn't need to be on oxygen - which is certainly what it might look like if you don't have these incidents recorded on the charts. She said there isn't room on the charts for explanations. I pointed out that the initial reading should have been on the chart - because those were the levels she would have been at for several hours.

I asked who I have to go to to report this and make sure it doesn't happen again. She did not tell me.

Friday, June 5, 2009

Oxygen part 2

So today my other half goes to the hospital to find Marie has been down for another set of tests to see if she can swallow food. She's back in her room and a bit groggy - and her bed is at 20 degrees despite the sign over her bed that says it is to be at least 40. Okay, so she had just got back and maybe someone was planning on coming to fix that.

Her oxygen was set at under 2. She's not totally tracking - and the question in these instances is whether her confusion is related to the sedation, the low oxygen, or both. Her fingers are bluish and cold. The chart shows no readings taken after 8:30 in the morning, and it is now after 4 p.m. So my other half gets a nurse and the blood oxygen monitor. 75%. They try another monitor. 75%. They up the oxygen to 3, which is the level which was set by the lung function clinic last year when Marie was put on the oxygen at home. Over the next few minutes her oxygen level goes up to 94%.

The low levels are what we are used to seeing when Marie is at home and someone has forgotten to turn the portable tank on. She gets dozy and disoriented - we have witnessed this several times. She says there have been times when she has passed out.

The doctor told us on the phone yesterday that she tested in the high 90% range without extra oxygen - just on room air - over a period of several minutes. I find this hard to believe, since we are seeing a consistent and different behaviour both at home and in the hospital. Perhaps he is trying to make us believe the hours without oxygen on Wednesday - when she tested at 60% - were probably not serious. He negotiated with us on the phone - I found this weird. He said he wanted to see an oxygen level between 92 and 96. He seemed to think we were concerned about this number - so he was asking if we wanted it to be maybe 94 to 98? We'd be quite happy with 92...if she was actually getting it. But why is he trying to make us feel as if we have some say in this?

The nurses say they are monitoring the levels more frequently, but we don't see the stats entered on the chart because they haven't written them in yet - they carry them around on pieces of paper in their pockets (which must be very useful if any of the medical team is at the bedside and wants to see how Marie has been doing). Apart from those early morning ones, lately the readings don't seem to ever make it on the chart as far as we can see. And I'm fairly sure you won't find the previous errors written on the file. Today my other half was asked if she wanted the incident written in the file. Since we have not been asked this before, I am assuming the other incidents were not recorded.

The staff no longer smile at us. We are troublesome. We have had to correct the bed setting six times in 11 days. Yesterday the doctor told us Marie had to start taking some responsibility. She had said the bed mechanism wasn't working properly and she couldn't reach it. The doctor told us this was not true - the bed works fine.

Except we've been there - we know the controls on her right hand side are not, in fact, working - we couldn't make them work when we were there earlier in the week. And the controls on the left side work, except she would have to use the arm which is hooked up to all the lines, and she has already pulled that one loose a couple of times. Besides, she's blind. So they expect a sedated blind woman to notice that her bed is not at the right height, to find the set of controls that works, and to correct it without disturbing her IV...

I'm afraid the staff is now trying to divert attention from their own errors. I do not understand it: how hard can it be to make sure the oxygen is on at 3, the tubes are connected properly, and the head of the bed is at 40 degrees? Those have been the instructions for more than a month - why is it so hard now?

Thursday, June 4, 2009

Who needs oxygen?

Yesterday morning I looked out the kitchen window into the empty lot. There's a 4x4 canopy out there right now, serving as shelter. There were three people out there, moving about, trying to get night out of their legs. Their clothes were dirty and the dust of the previous days stuck to their oily unwashed hair. They talked to each other, planning their day, talking about who they might meet, who they would avoid, where they might get food or money. All they had was the clothes on their bodies, the canopy (which I think our regular homeless guy, Len, might have put there) and each other. And, as the song would have it, the sun in the morning and the moon at night... and they can breathe. It might not be much of a life from the point of view of outsiders, but it is a life.

Yesterday afternoon I went to the hospital to visit my mother-in-law, Marie. She's 93 and has had a turn of bad luck in the past 6 weeks. She took a tumble in her apartment and came to the hospital, where things went odd. No broken bones from the tumble, but she did wind up with an extreme achalasia, aspirate pneumonia, and a bout of hallucinations (either from painkillers or a mineral imbalance). Yesterday was the procedure for the peg feeding tube.

My mother-in-law has been on home oxygen for about a year following a bout of congestive heart failure and the discovery that her lung function was compromised, perhaps owing in part to the shrinkage of her skeletal structure. She was on oxygen when she went into the hospital, and she has been on oxygen for the 5 weeks of her stay.

When my other half arrived to visit her yesterday, the hospital bed was at too low an angle for the third day in a row. Because last week my mother-in-law had a procedure to inject botox into the sphincter at the base of the esophagus in an effort to solve the achalasia, she has no control over reflux. The head of her bed is supposed to be at 40 degrees or more to prevent her from aspirating stomach acids. I came after work, and I sat with her mother while she went to talk to the nursing staff about the bed issue. Again.

Marie was not in the best shape after this procedure, and no-one expected her to be. She was dozy and not really tracking. The oxygen tubes were in her nose, disappearing out of sight over the head of her bed, and the oxygen supply was burbling in the plastic container attached to the wall. The plastic container had a spare long, coiled plastic tube around it, and I noticed the green-tinted ends of it. Then I noticed another loose green-tinted end and realized with horror that the oxygen was on but my mother-in-law wasn't actually hooked up to it. The end of her tube was dangling behind the bed, not connected to the supply.

A week ago Tuesday I came to the hospital to wish my mother-in-law luck for the botox procedure. I found her lying on a gurney in the hallway, almost flat and feeling like the mess in her throat was coming up to choke her. She had a portable oxygen supply on, but she had no bell, and she had been trying to get someone to stop because she was afraid she was going to choke to death. No-one would stop. I got her attended to, and then they announced that the procedure was postponed because of an emergency.

I went away while they transferred her back to her room. When I returned, she was lying in her bed with her oxygen tubes in. The other lines were not reconnected yet (the feeding tube, the intravenous). She was anxious and disappointed. I spent some time with her, trying to calm her down and reassuring her that the procedure would go ahead in the next couple of days and she just needed to hang in there. She was still anxious, and she wasn't really tracking. It took a while before I noticed the oxygen hadn't actually been turned on.

I told the nearest member of the nursing staff (they seem to rotate every day, so you never know which one is responsible for which room on any given day). 10 minutes later two nurses came in. I asked them to turn the oxygen on. "Maybe she doesn't need oxygen," one of them said. I explained that she had been on home oxygen for a year, that she had been on oxygen for the 4 weeks of her hospital stay to that point, and that nothing had changed that would affect her need for oxygen. One of the nurses went to get the blood oxygen meter while the other stayed to argue with me. I held out my arms in as open a gesture as I could make and I said "I am not prepared to have an argument over this. Oxygen is essential for life and you will turn it on." [link to cerebral hypoxia]

They took the reading but refused to show me or tell me the result. They turned the oxygen on and left. They have been giving me the stony-faced treatment for the past week.

So yesterday the charge nurse came in, hooked up the oxygen, then brought in the machine. The saturation level was 60%. (When her levels were as low as 78% during her congestive heart failure episode we were told it was an emergncy.) It quickly climbed into the 80s as my mother-in-law breathed the oxygen in. Her mind sharpened over the next 15 minutes.

In that ward, there are 4 nurses for 19 patients. The provincial government has announced another set of cutbacks, and the management levels have been told they will have to re-apply and compete for their jobs. In the current climate, I can understand that staff are stressed and that the stress might lead them to make mistakes. I am trying to respect the difficult position they are in. I am not a nurse. But I am also thinking that 6 life-threatening mistakes in 8 days is not acceptable. It is inappropriate to brand me as a difficult family member for having caught those mistakes and having spoken up.

The nurse practitioner on staff yesterday danced around the issue, refusing to speculate about what a period of that level of oxygen deprivation might do to the brain. Do medical professionals not realize that people now have fairly easy access to that kind of information? Not only through general information sites, but through online respected medical journals (I have access because of my job)

We family members are also in a difficult position; we have a loved one lying in a bed in the hospital and being put at risk not by her illness (which is a situation that is resolving) but by the staff. We feel like we should be camping in my mother-in-law's room to prevent the staff from making mistakes.


The vagrants in the empty lot survived their day on the streets and last night they slept under the canopy. They got up relatively early this morning, helped themselves to water from our tap, and they have ventured out into the world again. Breathing.

Monday, June 1, 2009

Cynicism and Cinderella

Britain's Got Talent is finally over for 2009, and the judges were not able to give Susan Boyle the glass slipper. She's had a fine time at the ball, and there will be a dance or two yet for her - certainly more than she ever dreamed of doing in her life to date - but we're already seeing that "happily ever after" is not likely in the cards. (In the interests of full disclosure, the name of my blog comes from a long-dead Boyle whose name was attached to a street, and then a neighbourhood. Boyle Street itself no longer exists as such - it has been replaced by a number.)

The Cinderella fairy tale is an interesting and persistent story, full of nastiness and a resolution that doesn't ring true (as Stephen Sondheim points out in his satirical Into the Woods). Cinderella is NOT a princess, and no amount of dressing her up and making a fuss over her will make her a princess. Even if she doesn't deserve the miseries of life with her step-mother and step-sisters, she is no more at home as a princess than she is as a housemaid.

The fairy tale helps children through the roughest times of their young lives - those times when they are convinced they are unloved, and that their parents can't really be their parents. It is a story which offers hope: hold on and some day your prince will come and you will be recognized for who you really are.

Like Ritalin, the story is a drug which acts differently on children and adults. The story that saves children from their misery will guarantee misery to any adult who clings to it. Britain's Got Talent struck gold with this story when it featured tenor Paul Potts, so they are repeating it with singer Susan Boyle. The price for a starring role is high - and the damage done to millions of others is unfathomable. We are being encouraged in a delusion.

Read what the critics say about his live appearances. Last year's sensation has had a rough ride - with lots of praise for the story, but lots of criticism as well. His mishmash album, carefully engineered, pleases his fans but not purists. In the past year there have been revelations: Paul Potts had already had a fair deal of coaching, including a masterclass in Italy with Pavarotti, and despite his considerable experience in amateur operas several of the reviews from his much-touted tour suggest he is not really equipped to be a credible opera star- although he sings the one Puccini aria well. His fame is based on having been touched by the fairy godmother of Simon Cowell and company, and from the reviews it looks like his fame outstrips his talent. Those of us with some knowledge of singing foresaw this when we watched his overhyped overproduced rendition of Nessun Dorma in the competition.

[A brief aside about singers of opera. To be truly successful, an opera singer has not traditionally required stunning good looks - particularly the tenors. They must have an extraordinary instrument, true, but there are many other qualities they must have - and those qualities act as multipliers in the world of opera. If any of them is a zero, then the chances of a career is a zero. These include an ear for mimicking languages (and preferably the ability to speak and understand several), an ability to take direction, robust health, musicianship, reliability, punctuality, musical taste, a grounding in music history, and an awareness of musical politics. A show like BGT can catapult you to fame and riches, but it will not validate your career as a serious opera singer. Maybe that doesn't matter; if you've cashed in to the tune of 5 million pounds, as Potts is reputed to have done, maybe the serious career as an opera singer has been replaced by the more lucrative career as a singing celebrity.]

Enter Susan Boyle.

Let's get a few things straight.

First, Boyle's been singing in her community for a long time. This is not a secret talent - merely one that hasn't had a light shone on it by BGT.

Second, Boyle's hearty manner is classic British music hall; her figure, face, and demeanour are of a type which the younger generation might not recall, but the rest of us do: Kate Carney, Tessie O'Shea, Hetty King, Marie Lloyd. Or the famous American Sophie Tucker. When Boyle came out to sing, I expected her to be good. She had a cocky, earthy presence. She is used to entertaining with her voice.

Third, all the hype about how nobody expected anything from her because she looked frumpy etc only shows how narrow their consumption has become. Boyle is not unique - she is one of a whole legion of performers whose type is not in fashion right now. She's attractive in a different way from our overprocessed entertainment industry norms - but people who suggest she is an ugly duckling need to have their glasses checked.

Fourth, her choice of I Dreamed A Dream was inspired. It's a dead easy song to sing and highly charged. Add some reverb and some lighting effects, and any half decent belter will seem impressive. Does that mean a major talent is standing there? You can't tell from that song. But the fact that the judges were so easily won over, despite the weak low notes and lack of finesse on the top, suggests either they don't know enough about musical theatre or they were playing it up because the Cinderella story is gold in their coffers.

Boyle did not manage to be as impressive with other numbers - and that should tell people something.

I like what I have seen of Susan Boyle, and I am happy that she will have some time in the sun. It sounds like she's going to live some of her dream, and that's great. Does it mean she's a great talent? Not necessarily.

And this is where things get nasty.

I know many local amateur or barely-known singers who could perform the living daylights out of that song - and then go on to prove themselves in repertoire far more difficult than La Boyle assayed.

And there are many people who THINK they have a talent that only needs to be recognized; they are waiting for a fairy godmother to see them for who they really are. Except it's not who they are. They don't have that much talent. Instead of understanding this, and finding other ways to satisfy their desire for community and value, they hang on to a dream that is bound to be frustrated. And it is the promotion of that delusion that is so ugly in these talent shows.

There aren't enough fairy godmothers to go around, and even if there were, what would it serve? Lots of people with second-rate talent being fussed over and elevated while people with greater talent are ignored because they aren't good material for a story.

The Vocal Arts Festival is happening here in Edmonton over the next month. Lots of young aspiring classical singers - some of them with breathtakingly beautiful voices and huge accomplishment. They have already devoted their lives to an art form, and they are investing in it. No-one is whisking them off to record with the Czech National Symphony. No-one is cooing over their YouTube videos. The depth of talent in Canada's singers is astonishing, but that doesn't fit the Cinderella story. To sell the Cinderella story, the star must be obscure and unpolished - even if it means their eventual disillusionment.

For the general public, there is no excitement to a story about someone who is dedicated to their studies, who gradually improves their skills, and who eventually enters the professional ranks through the usual means. These people have more chance of longterm success than Potts or Boyle, but who gets our attention and energy? The Cinderellas.

Why? Because we still want to believe the story can happen to us. We still cling to some of our childish wish that someone will discover our hidden talents, our "true" value. So we uphold the story and pronounce the mediocre or passable as amazing and unique - because if it can happen for them, it can happen for us.

The people who feed this delusion - the television producers who make money off this story over and over again - are they cynical or do they really believe these people are major talents? If the former, think about the ethical implications. If the latter, why are so many people swallowing it? The people watching these programs and waxing rhapsodic about the finalists must never attend their local theatres and concert halls or they would understand that they are being duped. By using glitzy production values to fool people into thinking they are experiencing major talent, the producers are creating a false scale - and millions are buying it without knowing that the standards of talent are being degraded and replaced by hoopla.

Isn't it time we all grew up?