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The unsung partners

Family caregivers are the unsung partner in a patient's care team, yet their enormous contribution to the health care system is often overlooked. As they move through the health care system beside their loved one, family caregivers experience firsthand the gaps in care and poor transitions between care settings. We have much to learn from the experiences of family caregivers.

Caregiver and patient - Make your experience count

August 2013
Learning valuable lessons from patient experience
Aug 8, 2013 6:12 PM

Perhaps like most people who have previously had minimal contact with the health care system, I had always thought very highly of healthcare professionals and hospitals, generally considering them epitomes of competence and virtue – I essentially trusted them unconditionally.

But, my experiences in advocating for the proper care of my father, Joseph, over a period of about ten years – from 2001 to 2011 – taught me that, though there are a great many competent, dedicated and honourable professionals in the system, mistakes do occur and, sadly, those involved rarely acknowledge, much less take responsibility for these mistakes.

As might be imagined, having been my father's primary caregiver and SDM for about ten years, I have a great number of stories to share regarding my experiences with the health care system.

Many of them are happy and heart-warming – some, in fact, even deeply moving.

For example, one of the nurses who cared for my father during the first of his two extended hospital stays, loved to dance – though her husband did not. So at a time when my father was at the 'wheelchair' stage of his recovery, she would regularly visit and 'dance' with him, as my father's favourite Italian folk music played happily in the background. I happened to visit during a couple of their 'dance sessions' and I was truly moved by her gentleness, kindness and warm affection towards my father.

Another nurse, who cared for him in his final year in hospital, when he was essentially bedridden, had grown up without knowing her own father; so, as she would later tell me, she had quietly 'adopted' my father while he was in hospital, visiting him often to just talk – or, on occasion, to ask for advice regarding her own life challenges.

And, yet another nurse would later tell me how, if she was having a particularly stressful day, because my father was such a peaceful and gentle man, she found it helpful to just go and sit with him – even if he was asleep.

Sadly, though, I experienced my share of difficulties along the way; and, many of my stories are quite harrowing and almost beyond belief – because of all of the mistakes that occurred and all of the unnecessary suffering that those mistakes caused my father, before I finally discarded the 'rose-coloured glasses' of unconditional trust in 'the system' and learned enough about his health issues to be able to help him.

It is less than a year since my father passed away, so there are many experiences that I am still not able to talk about; but, I have found that I am able to at least write about those experiences that ultimately turned out well.

So, for now, I would like to share just one of those stories – one which, though it relates to a particularly difficult hospital experience, has a decidedly happy ending.

January – June 2007: Duodenal Ulcer / Nosocomial Infections / Near-Fatal Adverse Effects of Prednisone In early January 2007, my father was admitted to hospital to receive care for internal bleeding caused by a duodenal ulcer.

But, an initially-projected 2-week hospital stay turned into an almost 6-month stay after a series of nosocomial (hospital-acquired) infections – Pneumonia, UTI (Urinary Tract Infection), C-Diff (Clostridium Difficile), MRSA (Methicillin-Resistant Staphylococcus Aureus) – and the severe adverse (toxic) effects of a powerful medication, – Prednisone, almost killed him.

Shortly after being started on prednisone, my father experienced the following adverse (toxic) effects: severely compromised moods and cognitive function; severe diabetes and total insulin dependence; parchment-thin and extremely fragile skin; severe heel ulcers that eventually necrotized, putting him in danger of his loosing his lower limbs; and, severe loss of body weight, from about 170 to 110 lbs –- among, perhaps, other problems. (At his worst, my father looked very much like a WWII concentration camp prisoner – truly, virtually at death's door.)

Sadly, though, in spite of the obvious drastic deterioration in my father's condition, his entire medical team was in complete and 'determined' denial about the near-fatal adverse (toxic) effects of prednisone, repeatedly insisting that my father was “getting the very best medical care possible” and that Prednisone “may well have been keeping him alive” – as if repeating these obvious untruths enough times would ultimately make them true, or at least convince me that they were true.

Furthermore, they continually reminded me that my father was '87 years old', and that his condition was the result of the natural decline of a man his age, and that we should not expect him to return home.

“Be sure that his affairs are in order.”, I was told, many a time.

On two occasions, I asked for family meetings with my father's medical team to discuss his condition and possible remedies; but, his MRP (Most Responsible Physician) refused to attend, insisting that he was “satisfied with [my] father's progress.” (Honestly, that's exactly what he said.)

That absurd impossible statement remains forever fixed in my memory – like some unbelievable 'doublespeak' out of George Orwell's prophetic dystopian novel on the dangers of unchecked totalitarian power, entitled '1984'.

The situation would have been laughable, had it not been so profoundly tragic, as my father's condition continued to worsen.

As a result, it was only after I provided the medical team with several peer-reviewed articles that detailed Prednisone's known adverse effects, and I persisted in my efforts for a reconsideration regarding 'Prednisone', that my father's doctor eventually, though very reluctantly, agreed to slowly taper the dosage.

Thankfully, within days, his condition began to improve noticeably; and, about a month later, with 'Prednisone' having been stopped, and with all adverse effects reversed, my father was able to leave the hospital and return home, the same way that he had entered –- walking on his own two feet.

Everyone at the hospital was astonished -- and, naturally, my family and I were most grateful.

And, my father?

Well, after about a month of home rehabilitation had made him strong enough to resume his self-taught post-retirement hobby of wood-sculpting – with only hand tools and working on large 6-7 foot tree trunks, believe it or not – in keeping with his reserved understated nature, he was 'quietly jubilant', simply happy that he was still alive to pursue his passion.


This experience taught me some important lessons:

1) Hospitals and doctors can make mistakes

2) Patients need somebody watching over them in hospital

3) It is both our responsibility and our right to share our observations and concerns – and, to participate in the proper care of our loved ones when they are in hospital



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