A Day in the LIfe - Rehab by the Numbers - Part seven

Continues....

The incident sent me on an exploration of other rehabilitation facilities in Canberra.  I discovered the only other facility of note was at a private hospital.  I arranged to meet with the Manager and was shown over the unit.  Patients are accommodated in single rooms and the unit has a more welcoming aspect.   

Although the unit had a hydrotherapy pool, the physiotherapy gym and services available for brain trauma recovery could not compete with the resources available at TCH.  I was forced to acknowledge this reality and again, putting personal ego aside, swallow my anger and persevere.  Carolie did not want to move in any case as she felt comfortable in her surroundings, and was largely unaware of my angst.

A reassuring factor was the presence on the ward of one of the healing beacons we encountered in the labyrinth; a further indicator of the potentialities of a genuinely patient-centred regime.  This finger post to a humanist healing modality came in the form of a doctor nearing the end of his hospital residency, when he must decide a specialization direction.  He combined a caring nature with high technical proficiency. Again, we had discovered someone who attended his duties with genuine enthusiasm, in the face of gruelling shift demands.  

The resident's calming presence helped us through the buffeting of crosswinds and ongoing worry over Carolie’s travails, not least of which was the persistent infection atop her skull.  On occasion he asked us if interns could perform some of the blood testing procedures on Carolie to gain experience.  I was ever mindful that both hospitals encountered in the labyrinth are teaching facilities.  Though they were somewhat chastened to discover their technical prowess had a way to travel, the cheerful enthusiasm of the interns leavened our mood.  Such mentoring could not be other than conducive to understanding the fundamentally human dimension of hospital medicine. 

The resident opted ultimately to work in hospice medicine, which would benefit greatly from his compassionate professionalism.

To be continued....

A Day in the LIfe - Rehab by the Numbers - Part six

Continues...

Carolie could not stand by herself.  Her muscle wasting was such that she required an overhead support harness to walk on a treadmill.  With support she could stand for a moment to transfer to a wheelchair or to a toilet. Her immobility left her vulnerable to falls.  She had gone from an active professional woman to a mostly helpless chair bound invalid in the space of two months.   

Toileting remained a dangerous activity.  She fell off the toilet a couple more times while nurses left her unsupervised.  When someone with brain trauma falls it can be life threatening. There were many junior nurses on the ward who meant well, but who lacked the experience necessary to manage brain trauma patients without close supervision.  I had to complain to senior nurses to ensure supervision protocols were strictly observed during trips to the bathroom. 

The wonderful School of Music friends followed us to the ward.  Their singing efforts went unremarked initially by management but soon attracted the attention of one of the senior nurses, who complained they were too loud.  She had a patient who suffered from severe headache, but I question whether the complaint came from her.  I doubt her extremely debilitating condition would have been affected by beautiful singing.  I suspect it was another iteration of the ‘command and control’ approach that pervaded management of the ward.   

After a minor run in between our friends and this nurse we decided to limit the singing to the gym.  The senior physiotherapist was welcoming as music was played during gym sessions.  The extra stimulus of high quality live singing was a bonus.  The majority of patients responded positively to the singing, such that it became a regular fixture in late afternoon sessions in the gym.   

After one such singing session on a Sunday afternoon in the ward room - prior to the singers limiting their sessions to the gym (and outside on weekends) - our friends left Carolie sitting up in her wheelchair.  She would be uplifted by joining the singing and occasionally forget her physical limitations.  Just as some visiting children from her school and their parents were taking their leave she suddenly stood up in a farewell reflex.  She fell heavily to one side, bruising herself badly.   

On receiving a call from the ward I immediately drove anxiously to the hospital. On arrival a senior nurse proceeded to berate me about the singers leaving her unattended, despite this not being their concern as the visiting family had arrived.  I defended our friends stoutly and subsequently discovered it was the visiting family that triggered the accident.  Again, they would have no reason to assume any risk.  The nurse made it clear ‘the situation’ could not continue and that change would be made.  It was unclear what this meant but did not bode well to my ears – it was a portent of more ‘command and control’.  We did not have to wait long.

During a luncheon period I went to fetch something from Carolie’s room.  She remained in the dining room.  I was surprised to find unknown persons standing by the bed and her personal effects removed.  It quickly became apparent that Carolie had been moved without notice.  She was now accommodated in a room adjacent to the nurses’ station.  Her beautiful view on to flowers was gone; the room had damaged blinds so sunlight heat could not be managed as easily; it was noisier as immediately outside the room was an administrative area; and worst of all, Carolie had not been informed of the change.  

Nurse management had decided that Carolie needed to be closer to the station in case of further falls.  It was instructive that nurses continued to leave her unsupervised on the toilet.  For the second time on our labyrinthine journey I lost my temper.

 

Arcing with anger I returned to the dining room and made it very clear that I wanted to transfer Carolie to another facility.  After our treatment to this juncture by ward management I saw this as a bridge too far.  The place seemed mired in a time when patients were totally disempowered and subject to the whim of fierce nursing sisters.  Many a motion picture has focussed on the theme.  Flashes of One Flew Over the Cuckoo’s Nest kept 'gingering' my sense of this ward culture.  I refused to be bound by the ‘givens’ in this particular time warp.  This time I did the berating, reducing the same senior nurse to tears in the process. 

The nurse was fairly tough but maybe unused to having to deal with someone articulate and determined, who had dealt with much tougher souls, and who was as angry as I was.  On cue, after a little dust had settled, the ward boss reappeared to again put me in my place and upbraid me for ‘abusing’ her staff.  She agreed the shift manager had done the wrong thing by not consulting with us but that did not excuse my treatment of her staff member.  

I indicated to her that the conversation was pointless as she was about ‘command and control’ and nothing I could say would change that.  I defended the accusation of ‘abuse’, replying that although I was truly angry I had not used any terms of abuse, which was true.   She tried to twist my evident anger into a ‘personal problem’ - perhaps I needed counselling.  No, what we needed was to be treated with respect and not disempowered.  My ‘Red Queen’ alert was screeching:

          ‘Speak when you’re spoken to!’ the Red Queen sharply interrupted her.

            ‘But if everybody obeyed that rule’, said Alice, who was always ready for a little argument, ‘and if you only spoke when you were spoken to, and the other person always waited for you to begin, you see nobody would ever say anything, so that—‘

            ‘Ridiculous!’ cried the Queen.*

To be continued....

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* Lewis Carroll, Through the Looking-Glass, The Folio Society, London, 1962, p. 109

A Day in the Life - Rehab by the Numbers - Part five

Continues....

After my second 'run in' with the ward manager I decided to bring my concerns to the ACT Health Minister.  I set the scene by outlining Carolie's situation up to this point, particularly the attitude of senior medical staff to alternative therapies.  Then I launched into a critique of our experience on this ward: 

       

            When we were informed Carolie would be transferred to Ward ..... for rehabilitation we were pleased at the prospect of intensive physiotherapy and a healing environment.  Whilst we have no complaint with the various therapists involved in Carolie's recovery, the overall tenor of management is controlling, regimented and counter-productive toward a healing approach.  

           We have not been allowed to put the beautiful posters that Ainslie school children have lovingly prepared on the walls of Carolie's room.  I have organized a very gentle form of chiropracture treatment for Carolie.  I have been advised this is not possible because of a policy concerning 'accredited clinicians'.  It seems the neurosurgeons of RPAH and TCH and the senior ICU consultants/registrars of RPAH have a different and more sophisticated approach.  When I advised the senior doctor who spoke to me today of these approaches she said they were all wrong.  

            When I had asked earlier in Ward ..... about public liability policies as they relate to external therapists I was advised such a policy did not exist.  I also expressed a willingness to indemnify ACT health against liability if necessary.  I repeated this offer in Ward .... but was told this was not possible.  This obstruction to Carolie's healing has been conveyed in an insensitive, authoritative way that beggars belief.  The lack of concern for the well-being of Carolie as an individual requiring a caring, healing environment is sorely lacking in the case of these people.  

            All of the specialists I have approached and most of the medical and/or nursing staff are supportive of my approach to holistic healing.  However, those in administrative authority appear less interested in healing and more concerned with a narrow interpretation of their management function.  In my view this type of inflexibility should be anathema to those interested in healing outcomes.*

My patience was running thin so I wrote what I meant.  The inevitable initial discussion with the medical hierarchy took place during 'rounds' in the ward gym.  The gym was the centre of daily activities – everything revolved around the physiotherapy regime.   

Anyone not engaging in the process was given a gentle talking to – one bloke recovering from a stroke was clearly in this category and would sit passively whilst an earnest physiotherapist explained the benefits of more effort and the obvious downside to not trying enough.  I am not sure whether he weighed the relative merits of the options but he seemed to give the exercises a bit of a go. He would sit and observe people and smirk to himself occasionally.  I believe he had a fairly jaundiced view of his fellow patients and the ward in general.  At the first opportunity he fled the joint and was found wandering along a busy road away from the hospital.  It turned out the exercises were working but clearly he had a third option in mind all along.  Security on the ward was tightened after this episode. 

I digress.   My meeting with the senior rehabilitation specialist went to script.  I made my usual impassioned pitch for an enlightened approach to patient recovery and the efficacy of complementary therapies, as evidenced by Carolie's experience to date. I was given the 'standard' line in medical obfuscation, which went something like this:  “We do not agree there is any clinical indication for the therapies you have requested.  Only evidence-based clinical treatments would be considered under hospital policy.”  My reaction was calmly stoic but underwhelmed.   Images of Escher stairs seeped into my consciousness.

I was weary.  My growing unease with the operational 'culture' of the ward was seeping into every pore.  I knew the hospital did not have a policy on third party therapists accessing patients.  I had offered to indemnify the hospital against liability, but was doubtful this would work.  Hospital patients and their family have to sign forms relentlessly, approving procedures, acknowledging risk and relieving staff and hospital of responsibility if things go awry in the normal course of events.  How could a third party with no contractual obligations to the hospital be indemnified?  However, I saw the need for a more enlightened approach.

Next we had a meeting with the Director of Rehabilitation and Director of Nursing.  When I discovered the lady-in-charge was also to attend I baulked and asked that she not be included as her attitude was unhelpful.  We had a cordial discussion with the Director, who reiterated the same line as the rehabilitation specialist.  I realized he was the actual font of the 'party line' and that the specialist was merely a spear thrower. 

It was a well-honed tune that he had mastered some time back;  subordinates clearly danced to a familiar beat.  I felt caught in a Kafkaesque construct, writ large on his assuredness as to the 'rightness' of everything he said.  He confirmed a scepticism concerning the therapies I was advocating, although threw us a ‘tid-bit’ that his wife was keen on various alternative therapies.  There is always a 'kicker' in a Kafkaesque space.  It was totally ‘civilized’ and totally non-productive from our point of view.   

We were advised the issues raised regarding external therapists would be referred to the Medical and Dental Appointments Advisory Committee for advice and recommendations.  He thanked us for bringing this area of confusion to light.  That might have been something if I thought there was a scintilla of a chance that the 'closed shop' (or, more accurately, 'closed mind') thinking on patient recovery would be challenged.  I got the impression that this area of medicine, which should be in the forefront of holistic approaches, would be one of the last bastions to change.  Certain medical strongholds are defended stoutly.

I wrote several times to the relevant government minister and the head of Canberra health.  I received a formal response outlining the ‘party line’ in clear 'bureaucratize'.  The fact that treating teams in both the ICU in Sydney and the high dependency wards in RPA and TCH had worked with us to allow complementary therapists access to Carolie did not register.

  

This was to be managed ‘by the book’ and they would brook no opposition.  I had to ‘like’ it as ‘lumping it’ was not an option.  I remain convinced that complementary therapies denied us at this time would have expedited Carolie’s recovery.  I finished my response to the Minister as follows:

             It is regrettable that my wife is not able to take advantage of a more progressive paradigm,   but hopefully the issues will be further reviewed and addressed over time so that patients in future will have access to the broadest range of healing care in the area of acute rehabilitation.+

In reality my persistence was somewhat futile but at least I had tried to breach the stronghold.  There were indications in several areas of the labyrinth that in the future a brave soul with exceptional grappling irons might just succeed.

To be continued....

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* Email from Mark Thomson to Minister for Health, 30 April 2012

+Email from Mark Thomson to ACT Minister for Health, 16 May 2012