Friday, February 12, 2010

Cross-Cultural Medical Observations From "The Little Boys’ Room”: Part II--Filial-Daughterly/Medical

As was mentioned in Part I of Cross-Cultural Observations From "The Little Boys’ Room”, while I don't make it a habit to frequent "the little boys' room", greatly preferring the "Ladies'", over the Christmas holiday I did have the compulsion to trangress this most universal of gender segregations twice. The first, an auntilary medical one, in the sense of psychosocial and family care, was described in Part I--Auntilary*/Psycho-Social. The second, more medical one,  in the biological, as well as psycho-social sense, is described here, in relation to another family caring situation.


Like all transgressions, having violated norms once, it was easier to do so a second time

That Edmonton Eskimo player is not going very far--at least not on this play

My father was once an aspiring Canadian Football League defensive player; and good enough to play senior football, first line, in an all-boys high school with a long tradition of football excellence, right off the bat, in Grade 9 (his size didn't hurt either).  He was scouted for the CFL, but family obligations (to his parents) stopped him from pursuing that dream.

Unfortunately, these days he suffers from Parkinson's Disease, a deficiency of  the neuro-hormone dopamine that results in a movement disorder: tremors (usually hand shaking, or head shaking), rigidity, imbalance (resulting in falls), slowed motor activity (the 4 cardinal signs of Parkinson's); difficulty walking (a shuffling gate), difficulty turning, difficulty swallowing, difficulty rising from a fall (rolling or rising from a sit); as well as cognitive and emotional challenges--all of which my father has, fortunately in the mild to moderate range, and responsive to medication, when he takes it (!).

Whatever it takes to catch the ball!

He also has osteoarthritis, particularly in the knees, which is one good reason it was best he didn't have a pro football career, but further hampers his mobility when he tries to tough it out without adequate pain medication, as he was doing prior to the Christmas holiday.  In addition, he has a mitral valve replacement (mechanical valve) and takes blood thinners. Much to the amazement of his specialists, 5 years ago he was diagnosed with Crohn's disease, despite being older than the usual age of onset, and with no family history. By Christmas this year, though he was showing no clear signs of active illness, he had been mysterious losing blood somewhere, for months, as indicated by a dropping hemoglobin, and resulting anemia.

All of which is to say that, over Christmas-New Year's, all of his various problems were giving him problems, though in a less clear manner than we now know. Toss in a pneumonia for the immediate pre-Dec 25 period, and you get the picture of an unwell  man trying to celebrate for the sake of his grandson, the above mentioned nephew.

I wonder who caught it?

Early on December 26, he developed a major nose bleed which wouldn't stop (given the blood thinner), the first in his life (despite all the sports), and the reason for the first of a series of visits to the ER (sent by the walk-in clinic where the physician rightly said they weren't equipped to treat it, given the other medical factors). 4 visits (every second day) of 9 hours each later, my father was discovered, among other things, to have a steadily dropping hemoglobin so low as to require transfusion; and, an INR so high (a rate of blood clotting so slow due to his blood thinner level being so high--12 where 2.5 is the norm for someone with a mechanical valve) that he required emergency treatment by intravenous infusion with Octoplex (a prothrombin concentrate to provide rapid clotting), reserved for life-threatening situations only; and, at a cost of $5000 CDN ($4725 USD) per dose, requiring the signature of 2 doctors that it is necessary before administration.

Although my parents could afford to pay this, and would, as a hospital-administered medication it is covered by the government health insurance that each permanent Canadian resident, or each Canadian citizen is entitled to free (though paid for in taxes), as was all treatment, all physicians' consultations, nursing care, and other medication in the ER--ditto his current hospital stay of 4 weeks, which probably will be at least 2-4 more, including time on a rehabilitation ward for physiotherapy, and all outpatient treatment by any physician, or a hospital-based health care provider.

"Hiking" the ball to the player behind who will run it, pass it, or kick it upfield toward the goalposts

At the end of one of these marathon visits to the ER, my father and I made our way (he walked very slowly due to the combination of Parkinson's, arthritis, and anemia) to the main entrance of the hospital, while my mother went to bring the car around to pick us up. All was progressing slowly but surely, until he needed to go to the washroom. We made our way past the main entrance, across the foyer with the coffee shop, where he seemed to get lost, and thought I was deliberately hiding behind a pillar (not paranoid, just irritable), then proceeded again. He shooed me on ahead, which avoided him the embarrassment of having me walking slowly to keep back to his pace, telling me to look at the history of the hospital photos on the display wall near the washroom.  I did that, and at some point looked back to see where he was at.

I then saw one of the saddest sights in my life. My father was bent double, barely motioning with one arm for me to come back. While in the ER he had missed at least one dose of  L-Dopa, and was now in full Parkinson's rigidity and unable to stand fully let alone move.  I ran back before he fell over and basically supported most of his weight, while he took the short shuffling steps characteristic of Parkinson's.  In that manner we proceeded very slowly towards the Men's Room.

Determination and aim

When we got to the door, we were faced with a new set of  dilemmas: how he would get inside the door without falling; how he would make his way to a urinal, pee, wash his hands, and return safely. He looked terrified and I just said, "Don't worry Dad, I'm coming in with you. If  anyone is in there, no one will care, and we should all just be thankful no one needs a Foley catheter, and I don't have to insert it".

Easier said than done. Getting through the door, and to the urinal, a trip with no banisters, hand rails, or objects for him  to hold on to for stability and weight bearing, was an arduous traversal. Turning to face the urinal, was even more sad. He could only manage the multiple short steps, turning en bloc, characteristic of his disease. Then he had to find a piece of plumbing on which to anchor himself, and stand securely. This accomplished,  I was able to let go and stand behind the partition separating the urinals from the sink.

Not everything is totally serious

While admiring the brilliance of such a partition, and avoiding my own reflection in the mirror above the sink (probably not a cheery sight at that moment), I could only contemplate how severely affected, and probably how under-medicated, my father was, even when he did take his full daily dose of  L-dopa. Yet another concern to add to how his GP let his hemoglobin get so low, and his INR so high, without seeing fit to either manage him better as an outpatient, get a consultation, or send him to the ER when indicated for either one of those abnormalities. Unfortunately, he thinks she is wonderful, and will brook not a disparaging word.

Alas, the pipi gods had declared this to be a "no go", and so we made our way back out of  "the little boys' room", thankful no one else had needed to use the facilities at that time.  We were making our way laboriously back down the hall with the historical photos, when a physician stopped and asked if she could get us a hospital wheelchair. She didn't bother waiting for a reply, brought one over, and expertly stood by giving encouragement to my Dad on getting in it while watching for a fall, then went on her way. Both relieved, we made our way back to the main entrance of the hospital to find a frantic "chauffeur" wife/mother.

Canadian, Vancouver native, Navraj Singh Bassi, respecting the Canadian National Anthem American style, as a Saskatchewan Rough Rider

Cross-cultural medicine (bio-psycho-social) observations

Access to health care is one major advantage of a publicly funded, universal health care system. While there may be delays for non-urgent treatment, the benefits outweigh the negatives if the international assessments of health care performance by country, and by health care spending per capita or % of GNP are to be believed.  Consistently, the Scandinavian countries, which have the best social systems in the industrialized world, along with countries like France, score well. Canada scored consistently in the top 10 until funding was dramatically cut. It now scores lower, but consistently above the US, which currently fights with Slovenia and Morocco for 35th place.

The physician-patient relationship, usually built on trust, is crucial to health care in any system. Sometimes that trust is misplaced, or becomes more important than the need for other health care providers.  It seems my father's condition has overwhelmed  his GP's ability to handle things in her preferred manner, as a sole decision-maker, with little input from the patient or family, and minimal from other specialists, though they are readily available in the city where she practices. Perhaps she is still stuck in the rural medicine mode she most likely practiced in order to get a job and a licence when she first arrived in Canada decades ago from the British Isles. Most likely it simply suits her personality.

She has been "uncomfortable" about gross errors in management and decision-making which resulted in his current need for hospitalization, and probably further cardiac damage.  She holds back medical information from me, although I have only contacted her 3 times in over 10 years, and excluded me from a meeting she had with my mother, trying to convince her that my father's time may be up, and it isn't worth certain even minimal interventions like a blood transfusion. Fortunately his specialists and the ER physicians and nurses have a very different attitude.

This issue of who warrants treatment , whether based on clinical status, age, gender, race, socio-economic status, religion, or sexual orientation is a major issue in medical ethics in all countries, and is seen most acutely treating those with multiple illnesses, older, female (less likely to receive active intervention), dark, poor, minority religion, or homosexual (GLBTQ). Often the biases are very subtle, and the practitioners themselves may be unaware of them; sometimes they are systemic (eg no publicly funded infertility treatments for gays or lesbians seeking to have children). Sadly, while most Muslims I know are happy with the health care they receive, I do hear ignorance (in the sense of not knowing) and bias from colleagues or support staff (secretaries, ward clerks,etc). Some don't realize that Islam is more diverse that the most extreme versions that hit the newspaper; that Muslims have their individual ways of living their religion just as the members of other faiths do; or assume that Muslim parents, and husbands are as restrictive and abusive of women as the worst of the media reports.

Being a physician-daughter has its pluses and minuses. On the one hand I am helpful in communicating information back and forth between my father, the family, and his health care providers, and do it more easily than the other family members would do. On the other hand, a very few health care providers are unhappy when there is a physician in the family.  I also respond better than other family members to medical emergencies, understandably; and saved us all an exhausting trip back to the ER at midnight, when my father fell and split his forehead--by steri-stripping the gash well enough that on the next visit to the ER they approved, left it alone, and he has no scar (whew!).

Nevertheless, as the high flying executive husband of my neuro-surgeon friend said "You two know too much [and get yourself into a knot over it]"; or as a psychiatrist friend said about caring at home for her extremely ill mother, "I'm afraid she will die and it will be my fault".  Her problem is magnified by familial and cultural expectations. She comes from a Central Asian culture with much in common with a Middle Eastern one, not least because her mother was raised in Syria, her father in Lebanon, and they maintain business, social, and cultural ties with both countries, as well as an African one, and a Mediterranean one. In all of her cultures family ties are more intricated than in Northern European or North American ones. As a daughter, and a physician she is expected to be much more actively involved in her mother's care.

This, along with her own personality, has resulted in her repeatedly breaching Canadian medical codes of ethics by prescribing for her mother, altering prescriptions, admitting her to her own hospital, reading her chart, writing chart notes, writing doctor's orders, changing the orders of the official doctors, and arranging consultations herself rather than through one of her mother's own doctors. She has stayed free of official repercussions, and has modified her behaviour because of obligatory professional development (continuing medical education) on ethics and the law.

Physicians from MENA countries have told me that they are accustomed in their own countries to being expected to, and providing more care for family members than is allowed in Canada--by ethics and by law. Essentially, Canadian physicians are not allowed to treat family members, or even very close friends except within the limits of an emergency situation. According to friends from other countries either the rules or the practice is more lax, except for surgery. One told me that a surgeon did an operation on his sister, "nicked" a blood vessel, and froze. The resident took over the surgery to save the sister. He also told me that when he was an intern in the ICU, another resident came in, assessed his own fiancée, and re-wrote all the physicians' orders for her treatment. He felt powerless to do anything about it.

While physicians need to stay on top of their patients' chronic illnesses with regular monitoring and referrals, patients need to be compliant with their treatment regimes, including medications, laboratory work, and lifestyle recommendations--or intelligently non-compliant.  Intelligent non-compliance involves knowing what prescribed medications are for what aspect of one's illness, and following the recommendations of physicians, pharmacists, and the pharmaceutical company insert.  It also involves contacting the treating physician about changing or stopping a medication, or letting him or her know at the next appointment that you have done so in accordance with instruction you have been given. The same is true of laboratory testing regimens, and lifestyle changes.

However the physician should also be keeping track, and where necessary altering treatment, changing doses or medication, dealing with side effects, changing lab venue, or agreeing to disagree. One of my patients who was clinically depressed didn't want to take an antidepressant because she had read online that it would interfere with her enjoyment of the illicit drug Ecstasy--true, and her choice.

Different countries have different ways of prescribing, some based on different medication payment options, others on different philosophies of prescribing. In France, a physician ill more likely write in a vitamin as part of the prescription because then it will be paid for by the standard health care plan. In Canada, where prescriptions are not part of the government paid health care plan, this is less likely, especially as it will increase the cost to the patient, over buying the vitamin over the counter. Also in France, the physician is more likely to simultaneously prescribe medication for the side effects of the primary medication, for the same financial reason.

In Hong Kong, physicians favour small doses of multiple medications to treat the same problem, whereas in North America, higher doses of a single medication are preferred. These attitudes, pro and con "polypharmacy" change over time in the same place though. In general, outside of North America and North western Europe, the physician patient relationship is more distant, authoritarian and paternalistic, although, again, this is evolving. American-style consumer medicine is less common outside the USA, however.

While these are all topics I deal with professionally on a daily basis, somehow standing in "the little boys room" with my suffering father nearby brought it all "home" in quite a different manner. Fortunately he is doing much better, after being treated in hospital--and rescued one night by a fearless, highly trained and experienced, male nurse with cardiac crisis unit experience.

Montreal Alouettes celebrate winning the 2009 Grey Cup, named after Governor General Lord Grey

Fortunately my other “family patient” over the Christmas holidays, my canine niece, Whisper, did not require my presence for washroom activities, except at the door, and with the treat she has come to expect. Whisper, however, has made it clear she wants a post of her own, one not restricted to washroom adventures, nor shared with human family members, and so will be “accommodated” shortly--minority rights, protection of the vulnerable, impact of the barky activist, and all.

A stand in--Whisper is too busy, and, well...important, for this sort of posing about

What have your experiences with health care been like either as a patient or family member of one, or a health care professional yourself?
If you are a health care professional, what is it like for you when a close family member is ill? Does this differ by gender, yours or theirs?
If you have experienced health care in more than one country, how would you compare their systems or your experiences with them?
What type of physician-patient relationship do you prefer: physician-centred, patient-centred, family-centred, collaborative, "thank you for the information, you decide, Doctor", "I already read about it online, I'm going to find a doctor who agrees with me", other?
Any other comments, thoughts, experiences?


Susanne said...

Ever since we talked briefly by e-mail, I've thought of your dad and wondered periodically how he was doing. (Last night I went to bed thinking of him.) I'm so sorry to read of all the medical difficulties he is currently experiencing. He is very blessed to have you as his helper and advocate!

Whisper is such a cute name. :)

Hope YOU are doing well, Chiara. I know it's hard to see family members struggle. Hugs!

Qusay said...

Glad your dad is doing well :)

The mens room... is not as clean as the womens room, my son refuses to go if he came with me because it is "yucky" plus I hear u guys get a couch in place of the urinals.

I have many friends and relatives who became MDs but I try to avoid medical discussions and the "what do u think this is" when we meet :) so I am comfortable around them... but I do not like hospitals nor operating rooms and I have a phobia of needles.

Take care

Chiara said...

Susanne-thank you very much for your kind words, thoughts, and wishes. My father is doing better daily, and should soon be fully in the rehab phase prior to discharge. I am doing well, and glad when I am of help. Now to get him to change to a new GP!!!! LOL :)

Qusay--Thank you for your words about my dad and myself. Your son is very discerning! We have couches, makeup areas, flower arrangements, etc. Rather a good use of urinal space if one doesn't need them!

Your policy with your medical relatives sounds wise. I am sure they appreciate the opportunity to talk about other topics and be seen as "whole persons" too. Now, can I interest you in a little cognitive-behavioural therapy for those phobias? LOL :) :P


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