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Ageism and the thieves of hope

ageismRepeated reminders about our mother’s advanced age, the high cost of her hospital care and a demoralizing end-of-life obsession followed us around MAHC like an ominous Greek chorus. It was as if hope, at least for our mother, was viewed as a disease. Some members of her care team did their best to stamp it out at every opportunity, commenting in person and in the chart about what they regarded as our “unrealistic expectations” for any kind of recovery and noting (often with disapproval) our refusal to consent to a do-not-resuscitate (DNR) order.  We felt the spectre of ageism quickly reaching into our mother’s care, just as many families do when they seek care for an elderly loved one and are left to wonder, as the hours and days pass by, if decisions have already been made that they are not worth the time or cost of such effort. 

In our case, what seemed to be a do-not-treat mindset resulted in our mother being denied services that were essential to her comfort, safety and recovery, even in the face of the family’s frequent pleas for interventions and our being with our mother every day for up to 14 hours a day. Despite the severe and extensive brain injuries she had sustained, she was not seen by a neurology specialist during her entire three-month stay at MAHC. The hospital refused to arrange a teleconference consultation with a neurologist even though it boasts about the availability of that facility on its website and we had frequently requested it for our mother. There was no speech language therapy even though that service had been promised and was available.  After assessing our mother, the therapist told us there was “very little to work with” in terms of her speech recovery. It took several pleas to have our mother placed on telemetry monitoring even though her heart rate was showing rapid swings between 30 and 140 bpm and she had suffered a cardiac arrest earlier in her hospitalization. Weeks went by before our repeated requests for a cardiology consultation were acted upon. Physiotherapy and occupational therapy were minimal. It took considerable effort on our part before an ophthalmology consultation was finally arranged, and even that was used by the doctor requesting it as another occasion to comment that our mother had been resuscitated at our “insistence.”  The results of nutritional and pharmacy consultations speak for themselves, as our mother’s severely malnourished outcome and record number of medication errors attest.  Very often, what was done seemed to be done grudgingly and as if it was seen to be a lost cause for a patient who just was not going to be around much longer.

Pressure-relieving mattress surfaces and other cushioning devices necessary to minimize the risk of skin breakdown, which the standard of practice requires for patients like our mother, were never provided despite her being assessed at the highest category of risk for developing pressure ulcers. Required precautions for the prevention and treatment of skin tears, including special clothing and signage alerts in the patient’s room, were disregarded, as were mandatory protocols for documenting and categorizing such breakdowns. Other mandatory steps under required standards of practice, such as repositioning every two hours, were never instituted. In fact, the chart reveals long periods of up to 9 hours where no care is recorded and no repositioning took place. It took some 24 hours for our mother to be examined by a doctor after suffering a major convulsive seizure.  No neurological tests to determine the possibility of further brain damage were ever performed.  Evidence-based recommended laboratory testing was infrequent and many tests critical to a patient in our mother’s condition, such as glucose monitoring, were never done.  

When our mother was diagnosed with aspiration pneumonia, a senior physician refused to transfer her to the ICU, snapping “What’s the point? She could die tonight anyway.”  He also denied our request for the hospital’s respiratory therapy service, saying it was too expensive and suggesting we contact our MPP to get more money for the hospital.  His overriding concern was obtaining our consent to a DNR order.  As mentioned earlier, our refusal to consent to a DNR order was the subject of disapproving comment by members of the care team and at one point was even linked to a delay in freeing up our mother’s hospital bed.  

We are still reeling from the chilling implications of that remark. But one thing has become abundantly clear: to get the care a loved one needs in the hospital setting it is necessary to stand up for that principle. It won’t just happen except in rare cases involving very unusual doctors and nurses. You have to speak up and speak out. You have to research and ask questions. You have to stand your ground when you are treated with resentment, as we were on a regular basis, or in a condescending fashion that unfortunately comes far too easily to members of the health professions. That, in many cases, is the only way of ensuring that your loved is given a chance and is treated with a decent level of respect for being the human being they are, regardless of the age they may be. 

Is that really too much to expect?  In the course of life, hope makes its own turns and decisions. These are generally unalterable. It does not require the assistance of thieves to remove it from the scene.  And no one should try.

 

 

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