Customize

When C was coming home from the hospital, we were surprised by the lack of cribs available for home use that allowed C to be up high at a reasonable working height for us to be able to care for him without the need to constantly bend over. So we ended up adapting an Ikea crib to fit our needs.

When C got a bit older and he started to almost sit up, we adapted it again to keep the working height the same but with higher sides and a flip-down side. I can’t imagine caring for C without this customized piece of furniture.

There are many things that make sense to purchase off-the-shelf. But I think it’s important to ask the question: could a custom modification make this work better for our needs. Yes, it takes time and money to customize things – but the end product is more efficient.

Hulk Hogan and back injuries

 

I grew up watching WWF wrestling (now called WWE) in the 80s. Hulk Hogan was one of the iconic “good guys” I remember most clearly. Jake the Snake Roberts (a bad guy) was recently on the Joe Rogan podcast where he recounted the defining moment in Hogan’s career. During Wrestlemania III in a showdown between Hulk Hogan and Andre the Giant, Hulk Hogan lifted up Andre up in the air and body slammed him to win the match.

Most of the discussion centred around a discussion of how many back surgeries Hogan has had and how lifting up Andre the Giant likely caused or was a strong contributor to his back injury.

We know that if you regularly lift more that 50 lbs you are at risk of damaging the tissues in the spine that can lead to a back injury. The latest science shows that this limit drops as we get older. Andre the Giant weighed 550 lbs.

I think part of the reason so many people suffer from back pain and back injuries is our poor understanding of our body’s limits.

In one interview Hogan says, “there’s not a day’s gone by when I haven’t been in some kind of pain. [1]”

How do you effectively communicate through writing?

Every day when I sit down to write these posts, I think about how I should be writing so that it will be something that Cayden and Avery will understand. I always think back to what Stephen King says about writing – that it is telepathy:

Look – here’s a table covered with a red cloth.  On it is a cage the size of a small fish aquarium.  In the cage is a white rabbit with a pink nose and pink-rimmed eyes.  In its front paws is a carrot-stub upon which it is contentedly munching.  On its back, clearly marked in blue ink, is the numeral 8.

This is what we’re looking at, and we all see it.  I didn’t tell you. You didn’t ask me. I never opened my mouth and you never opened yours.  We’re not even in the same year together, let alone the same room…except we are together.  We’re close.

We’re having a meeting of the minds.

I sent you a table with a red cloth on it, a cage, a rabbit, and the number eight in blue ink.  You got them all, especially that blue ink. We’ve engaged in an act of telepathy. No mythy-mountain shit;  real telepathy.

Stephen King, On Writing, p.97-98

Will Avery and Cayden and I have a meeting of the minds? Perhaps when I’m not even around any more. I hope so. I hope the things I’ve learned can help you.

If you want to change the way the healthcare system works or at least point out how it’s broken, you need to meet with the minds of people who have the power to do something about it. My experience has been that a well-crafted email can be incredibly effective.

Sleep – an example of how difficult behaviour change can be

I know getting to sleep on time is important. I know sleep is important for health in more ways than I can count. But I still can’t get myself to go to bed on time.

I always think about this any time anyone tries to suggest we should change our behaviour to exercise more or eat better. Changing behaviour is hard. We are not logical. Laying out all the reasons why we should change our behaviour isn’t enough.

Slowly building better habits might be one way to address this – I’ve just read Atomic Habits by Jim Clear and his strategies seem to have promise. For instance, to develop a habit of going for a run every morning, he suggests the best thing you can do for the first two weeks is to actively avoid running. Rather at the same time each day for two weeks, put on your running shoes and walk out to the end of the driveway.

 

Falls don’t make the news

We often see articles like this in the news whenever a pedestrian or cyclist is hit by a car.  From April 2016 to March 2017, there were around 45,000 injuries in Canada that fall into this category [1].

But we don’t hear about the more than 650,000 fall-related injuries that resulted in an emergency room visit in the same period. 50,000 of these people needed to be admitted to the hospital for treatment [1].

Both are important problems. Falls may not be newsworty, but we need to be aware of how common they are.

Winter Footwear

There is a new generation of winter footwear available today that can keep you safer in the winter. One of the studies we ran last winter with this type of footwear was able to dramatically reduce the number of slips and falls reported by personal support workers. Slips were reduced by a factor of 3 and falls were reduced by a factor of 5.

The results of our footwear testing are posted at http://www.ratemytreads.com and provide recommendations on which footwear to purchase.

Fall’s on ice often have severe consequences

A co-worker of mine recently shared a story from almost exactly four years ago. On that day she was leaving work and was leaving her workplace with a co-worker. She got outside, slipped on a patch of ice, fell back and hit her head. Right away she felt a wave of nausea and realized it was a bad injury. Nausea is a sign of a brain injury. She went to the emergency room where they scanned her head and didn’t find any swelling or bleeding so they sent her home.

But, over the next few days she started experiencing strong symptoms of a concussion. She found herself only half making her bed and half emptying the dishwasher. She found herself confused and would cry a lot. Even a year later she reported still not feeling back to normal.

This injury happened on the day of the first snowfall of the year – but she was ready – she had checked the weather and was wearing her boots and winter gear.

Could this fall have been prevented? Tomorrow, I argue it is likely this fall could have been avoided with better footwear.

The biggest problem in communication…

…is the illusion that it has taken place [1].

When C needs to go into the hospital, we go through a detailed process for ensuring the care team knows everything they need to be able to care for him effectively. The process of getting him checked in takes hours during which time someone writes down all the key information and enters it into a care plan.

We’ve done this a number of times and each time, it eventually becomes clear to us that the key messages were not getting to the nurses that actually cared for C.

For instance, the hardest time to take care of C is when he is having an episode of acid reflux. When this happens his mouth and airways start to overflow with mucus and saliva that needs to be suctioned out and it takes a while to get things under control. Through our experience, we have come up with a series of steps to follow to get things back under control.

We initially thought the problem might be that the nurses didn’t really have time to read through C’s full history in the care plan. There didn’t seem to be any way to highlight the key information. So we even tried posting key information at C’s bedside. But it didn’t work. When faced with

It seems like as we add more pieces of new information, it becomes exponentially more likely that something will get missed. But what is the limit?

Experiment Idea: Come up with a way to measure how the likelihood of errors goes up as the number/complexity of new ideas goes up. And build on these findings to see if we can find better ways to communicate key ideas to nurses.

Imagine giving participants building blocks and instructions for how to build an object. They are asked to build 4 of these objects in parallel (like caring for 4 patients in the same room). 1 or 2 of the objects have a number of additional instructions that can vary in complexity. Measure the number of errors.

What is the best exercise for longevity?

Many of the exercises that we think may help us become healthy can hurt us in the longrun. The video below with Dr. Stuart McGill is one of the few discussions I’ve come across on this topic. The key is to find exercises that avoid damaging our joints when we are young. We then need to shift to more moderate types of exercise as we get older and avoid falling when we get older. I’ve been following Dr. McGill’s work on spine biomechanics for over a decade and know he is very highly regarded in his field.

I don’t know Dr. Peter Attia as well as Dr. McGill but he is interested in developing exercise programs for longevity so he may be a good person to keep an eye on for future developments. He has the same advice as Dr. McGill about trying to save your joints if you want to live to be 100.

Be gentle in criticism and generous with ideas, connect with people at the top

We’ve had many interactions with the healthcare system – many of them frustrating. These experiences have given us many opportunities to think of ways we could make the systems better. But trying to discuss our negative experiences has had mixed results.

Our best experience came from sending an email to people in leadership positions (VP level) describing our experiences. It was hard not to vent, but we tried to tell our story clearly by stating the facts of what happened and the impact it had on us. We also included suggestions for how they might be able to fix the problem.  These people do care and found a way to change their processes to try and prevent similar problems from happening in the future. In contrast, we’d tried over and over to have the same explain to lower level people and got nowhere.

Be generous with your ideas if you find someone who really wants to fix a problem. It takes time to craft a good email. Take the time to write clearly and don’t be mean. Send the email to someone high up who has the ability and interest in fixing the problem.

Here’s the email:

Hi _,

As a follow-up to our conversation a few months ago about service at _, we wanted to share with you a recent scheduling frustration as well as recommendations for change that could help make _’s care more client and family centred.

This past Saturday we were left without a nurse overnight. We were not informed that there was not a nurse scheduled, and we only discovered the problem when no nurse arrived for the usual shift. We have been surprised by missed shifts at least three times in the nine months we have been with _. We understand that from time to time we will be without a nurse due to illness or lack of availability. However, we feel it is unacceptable that we should be thrown into these situations without notice, particularly when the cause is an avoidable clerical error, as in this case.

_’s response to these mistakes leave us with the impression that staff at _ do not understand the impact that these incidents have on our lives. Otherwise, we would expect a different tone from staff we speak with and see more effort put into preventing these incidents.

Overall we have been happy with the services provided by _ since our son came home last October. We love our nurses. They provide great care, they are punctual and professional. We have successfully worked with _ and _ to address a number of challenges and are very happy with the results. We want to continue our relationship with your organization.

There is still room for improvement for _ to provide improved client and family centred care. Specifically, there are two commitments that we would like _ to make for the future:

  1. Always provide advance notice of a missed shift. There is no reason that we should be surprised at the start of a shift by a lack of nursing.
  2. Put additional checks in place to avoid scheduling errors. We have made several recommendations below.

In this letter we will explain what happened this past weekend to convey a sense of how a missed nursing shift disrupts our lives and provide recommendations for how we can prevent these situations going forward.

What happened this past weekend

On _, we expected to have a nurse scheduled, as usual, from 10pm to 7am for Cayden (our 1 year old trached and vented son). When the nurse didn’t show up, we called into _ and spoke with a nursing supervisor who told us that Cayden’s account showed a “Hold on Service”. After initially refusing, she eventually attempted to find a nurse to cover the shift, but no one returned her calls to accept the shift. We were left without coverage.

Based on information from our LHIN coordinator and our nursing supervisor, someone at _ had mistakenly put a hold on our service beginning _ instead of _ (a week where we are planning to be away). The hold extended at least through the end of the month.

Impact on the client and family

Our infant son is trached, vented and requires an alert caregiver to be with him 24/7. As you know, if there is no nurse, we need to stay up all night to care for him.

The worst case scenario is finding out that no nurse is available just as the shift is about to begin. This means that we’ve lost any opportunity to prepare to stay up with Cayden. If we have notice we have the option of one person going to bed very early, or calling in an out-of-town grandparent for support. With these actions, and a little shifting of schedules, we could potentially still get 6-8 hours of sleep. Without notice, the best we can manage is 4 hours of sleep each. There is an added element of having difficulty falling asleep because of the adrenalin and frustration we feel as a result of the situation.

After a poor night’s sleep, we have no opportunity to catch up on sleep the next day since we have a toddler and our infant to watch during the day. Cayden requires a high level of care, so it’s very difficult for one of us to watch both children while the other sleeps. Usually, we cancel our plans for the following day and switch to survival mode. In the most recent case, we had to cancel our plans for father’s day.

A lack of sleep is also a safety concern for us – we catch ourselves making medication errors, feeding errors and are clumsier due to lack of sleep. The first time we had the surprise of a nurse not showing up was the day before Tilak was returning to work after parental leave. There’s no question his performance at work was affected, and he would have felt unsafe had he needed to drive any significant distance for work.

It takes us several days to dig ourselves out of this sleep deficit. This past week was particularly difficult because our three year old son came down with hand-foot-and-mouth disease and had been waking us up the previous few nights. We were already exhausted by Saturday night, only to have our lives further thrown into disarray by an avoidable mistake.

Recommendations to prevent missed shifts

We want to acknowledge that _ has already taken steps to avoid scheduling errors for Cayden. We now have a regular schedule with four nurses, and an alternate nurse to cover during vacations and illnesses. All of our nurses are excellent. This system has increased our confidence in scheduling. However, the missed shift on Saturday demonstrates further improvements are needed. Here are some recommendations.

 

Improve follow-up on staff concerns

 

Two of our nurses thought it was odd that Cayden’s service was on hold when we hadn’t mentioned it to them. They both called into _, and no one in the office followed up on their concerns. That was two missed chances to catch this error before it happened. We are very grateful that one of those nurses just went ahead and showed up anyway!

Furthermore, after we called in Saturday night and explained there was an error, the message did not get passed on to anyone working on Sunday. We would have had another night of missed service had we not called in again on Sunday to follow up.

Instead of these important service issues being flagged and passed on, they were forgotten and ignored. We recommend _ develops a method to capture these concerns and follow up on them.

 

Client ability to view nursing schedule

 

We know when we are expecting a nurse but have no way of confirming what _ has scheduled. We need access to this schedule either in real time, or sent to us on a daily or weekly basis. This should eliminate the potential for improperly scheduled shifts. We would have noticed that there was no nurse scheduled for this past Saturday and for the remainder of the month.

In the past, there were periods when we took it upon ourselves to call _ on a daily basis to confirm the schedule for that day but we found it a hard practice to keep up because of the length of wait times.

 

Confirm all changes to nursing

 

If there are changes to our schedule/service, it would be very helpful if a confirmation email was sent to us. This would allow us to easily correct any errors.

Recommendations to fix a missed shift

We understand that some mistakes are unavoidable. However, we feel that _ can also improve the response to a missed shift.

 

Empower and encourage _ staff to fix the problem

 

We would like to see on-call nursing supervisors have both the power and motivation to try and find a nurse last minute, if one is available. We understand the chances of filling the shift are slim but there seems to be little harm in trying.

We had to plead with the on-call supervisor last Saturday to get her to even attempt to look for a nurse to cover the shift. She said she was not a scheduler, so there was nothing she could do. The on-call supervisor should have the authority/ability to fix problems should they occur after hours. _ could consider providing incentives to fill a missed shift, so that on-call staff are more motivated to solve the problem.

 

Develop better methods of reaching nurses after hours

 

Our regular Saturday night nurse was available to cover the missed shift, but she did not get the message until it was too late. (In evidence of her willingness to work, she had called in to _ earlier in the day to inquire about why she was not scheduled). We recommend developing a more reliable way of alerting nurses to available last minute shifts. Some ideas are:

    1. Using multiple means of communication to reach nurses. Instead of just calling and leaving a message, try texting or popular messaging apps.
    2. Send an alert through the nurses’ scheduling app
    3. Have designated on-call nurses with pagers
    4. Incentivize nurses to take last minute shifts, so that they have a reason to pay attention to _ communications on days they are not expecting to go in to work.

 

Quickly follow-up on a missed shift

 

When a shift is missed, our lives are thrown into turmoil, and it feels like _ barely notices. We expect a call from _ first thing the next morning, but it never seems to come. We always end up calling _ because it feels there is no sense of urgency within _ to connect with us.

This past weekend was especially frustrating, because the “hold on service” implied that this problem would impact multiple nights of service. Despite that, when we called into _ no one seemed aware that we had missed nursing the night prior, or that there was still a shift to fill for Sunday night.

We also felt the need to call in again on Monday morning to ensure that someone was being scheduled for Monday night, since we were still waiting for someone connected with our case to reach out to us. Our nursing supervisor did email us around 1:30pm on Monday, but that felt too late considering the seriousness of the situation, and the fact that our nursing was still in question for Monday night.  

Going forward, we would appreciate a call (or email) as soon as possible to:

  • Demonstrate that _ takes the matter seriously
  • Explain what went wrong
  • Assure us that any ongoing concerns are being addressed
  • Discuss changes that need to be made to prevent a repeat incident
  • Confirm the upcoming nursing schedule and discuss how to redistribute missed hours

This follow-up conversation would go a long way to reducing our frustration with these episodes.

Conclusion

Once again, on the whole, we are very happy with our nursing services from _. However, we also want to communicate how critical the reliability of your service is, and the major disruption it brings to our lives when something falls through the cracks. We are eager and willing to work with _ to ensure that scheduling errors are reduced and we hope to never again be surprised by a missed shift.

Thank you so much for your attention to this issue and for your continued focus on providing client and family centred care. We’d be happy to discuss our experience with you further.

Sincerely,

Tonya Martin and Tilak Dutta

(Cayden’s parents)