Do Health Care Consumers and Caregivers Understand The Difference Between Support and Abuse?

Recently, I witnessed a rather disturbing chain of events while on vacation with my spouse.   As I previously shared, my husband is disabled following a stroke in 2014. After a year of rehabilitation we resumed traveling, mostly cruising. We purchased a collapsible scooter to make getting around the ship and some of the ports a bit easier.  In all honesty more often than not he walks around the ship using a quad cane and enjoying his independence.

A big part of cruising revolves around taking excursions upon reaching port cities. We’ve applied a measured approach as to our activity. If either of us is not up to it, we simply cancel a tour rather than grit our teeth and soldier on through it. We don’t prod each other into overdoing something. This approach has worked well for us because we exercise good judgment and respect our physical tolerances. But just the other day, we witnessed two gentlemen join one of our excursions; one of whom should have been in a hospital or skilled nursing facility.  Even the untrained eye saw how much he struggled and more than a handful of fellow passengers were distressed with what was going on. However, his traveling companion (be him friend or relative) appeared to be oblivious or unaffected by the situation and continued to push him…. literally.

He pushed him up the stairs of the bus, pushed him into the seat (which was directly behind us), and pushed him out of the bus once we arrived at our tour destination. Mutterances such as “come on, do it” or “just keep going” were clear enough to hear. As the older man passed our seat, a number of us saw that he was incontinent and his blue jeans wet and the zipper left down.  Another gentleman traveler pointed this out to the companion who only responded with “yeah, it’s a bit too late for that”.  It was not a matter of misunderstanding what had been pointed out, he spoke clear, unaccented English. It broke my heart that the man just did not appear to be mindful of his companion’s physical state, nor that his dignity was suffering a massive blow… even if he may have been too confused to realize it.

Once seated in the row behind us, the older man’s labored breathing, congested cough, and incontinence were cause enough for me to alert the tour guide of my concern. She made an inquiry prior to departing the terminal but the companion insisted he was doing the right thing because he was told “he needed to get out and keep active”.

So what does this have to do with case management?

Granted, I was not privy to any of the clinical facts regarding the man’s health nor the context in which the instructions were given. Basically, it is impossible to know what was said or not said but in the back of my mind I could hear the voice of a well-meaning health care professional dispensing a generalized recommendation of increasing physical activity  at an office visit or as part of transition plan instructions. Case managers participate in countless team meetings to discuss client status and progress. We espouse the importance of caregiver involvement in recovery from illness. We urge caregivers to allow their loved ones time and space to make their own efforts and to praise  attempts to regain self-sufficiency. However, are we being clear enough and is that lack of clarity increasing the risk of unintentional abuse and/or neglect by caregivers?

In this instance, if taken at face value it occurred to me that the companion may have misinterpreted fairly common instructions which are given and intended to relieve caregiver anxiety as to what they should and should not do for the recovering patient. Additional study into what we think we are telling our clients versus what they are hearing may prove quite illuminating and serve as a gateway to meaningful change in our we teach and coach. Does it mean we need to change our entire approach to providing care instructions? No, but we probably need to make a few adjustments.

So the next time you are care planning or explaining discharge instructions with a caregiver and client, consider the following…

  • Assess – Ask a few questions as to what are the usual activities in which the individual participates and if there are any upcoming events such as travel, etc. which might be out of the ordinary.
  • Provide context – When providing instructions, place them into contexts that the client and caregiver understand. For example, if the client normally climbs down a flight of stairs to get to the mailbox, make sure the physical therapist weighs in on whether this is something the person should resume doing straightaway.  In the case of international travel, this requires a bit more discussion with the care team, treating provider, family, etc. Travel plans can be postponed. In this case, a letter from the provider could help in getting a postponement on the trip and perhaps a full refund.
  • Verify understanding – Be sure to apply “teach back” methodology to ascertain if the receiver of your message understands your meaning. If you do not verify understanding, you may as well have not bothered to provide any instructions.

As with any situation, there are exceptions. In spite of our best efforts, we cannot force our will upon others; people will do whatever they want to do. I do not know what became of the gentleman, nor his traveling companion but I certainly hope that they both made it back home safely.

Best to you,

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