10 Point Charter of Patient Rights & Responsibilities
Compliance (or adherence) is a medical term that means the degree to which a patient correctly follows medical advice.
(~Wikipedia is my friend)
I’ve been unwell for the last year, more or less and am about to begin another round of tests [scary tests] so that the doctors can figure out [I hope] what the hell is wrong with me. A couple of nights ago, I wrote out a ‘pictography’ for the latest specialist whom I met with yesterday. The pictography is a photographic narrative about my health across the last 11 months wherein I have seen multiple doctors, a naturopath, an exercise physiologist, a physiotherapist, a nutritionist, and a heart specialist. I have had multiple medications, which multiple medical practitioners have evaluated, re-evaluated, changed the dose of, or changed altogether. I have been poked, prodded, given more tests than you can shake a stick at (what’s with that expression!) and been taken by ambulance into hospital for 5 days. It’s been a roller coaster, and apparently I am getting my money’s worth on this one, cuz the ride ain’t over.
The point?
Part of the reason I have had so many “interventions’ across the last year is that whatever is wrong with me, does not lend itself to a quick, easy diagnosis. It leads to tests, specialists, and what I call ‘guinea pigging’ – trying stuff out to see if it helps. Furthermore, I can definitely assure you, that one of the reasons there have been so many ups and downs is that the medical folks do not agree with each other. This is a bit of an issue as a patient, since my job (apparently) is to be compliant with the medical recommendations given to me. I reckon there have been at least a half a dozen instances in the last 11 months where I have been blatantly ’noncompliant, and another half a dozen where tho it may not have been my intention to be noncompliant, I was.
So here’s a worry. A few days back I stumbled quite accidently on an older post over at Hoyden About Town, AMA delegation seeks to code for non-compliant and ungrateful patients by Lauredhel. In the post she is discussing a proposal made before the American Medical Association to have a snazzy new code put into place which would label ‘non compliant and ungrateful patients’. This code would function as short hand amongst practitioners (uh oh, here comes another naughty patient), have possible implications with fee for service (if you waste my time disagreeing, I’ll have to charge you more) and have scary implications for insurance payouts (so sorry, we can’t insure someone who has 3 noncompliant hits, yer out!). The contentious bits of the proposal can be read at Hoyden About Town, or check out the actual AMA resolution, and for some good Doctor writing around the issues, have a peek at the AlignMap blog. Fortunately the proposal has been subsequently struck down, albeit with considerably less critical thought than I would have liked to see displayed.
The entire business of seeking to label people noncompliant has always been a worry for me, not only as it relates to heath, but as it relates for people having to accept advice and direction from anyone with unequal knowledge/power leverage in the broader ’system’ of supports and services, including but not limited to; health practitioners, lawyers, mental health practitioners, social workers, government officials, educators etc, etc.There was a shift away from looking at people as ‘patients’and clients’ to calling them service users, or even, consumers of services, instead. The point (or one of them) of doing so was to redress some of the pervasive power imbalances that exist between “professional” service providers and ‘non professional” service users – to make explicit that inherent is each of these relationships is the individual’s right to consume, or not consume any particular service or directive, offered by any particular practitioner, at any particular time (yes, I know it goes amok when we discuss mandated services and the false perception of choice indicated by the term ’service user’ but that’s a post for another day). The idea is we are ‘partners in our care’ not passive receivers of care. An important distinction I feel. The thing is that I am not willing to be labeled ‘noncompliant’with any of these people, because they don’t get to determine the final decision for the choices I make. My body. My life. My choice.
In short, my doctor is not my daddy, and he is not the boss of me. He doesn’t tell me what I am going to do, we consult.
Consult: confer imply talking over a situation or a subject with someone to decide points in doubt. To consult is to seek from a presumably qualified person or source advice, opinion, etc.: to consult an authority. To confer is to exchange views.
(~ Dictionary.com is also my friend)
In light of this epiphany, I have come up with my own 10 point charter of patient rights and responsibilities, tried and tested by yours truly. If you have some to add, that have worked for you, please feel free
10 Point Charter of Patient Rights & Responsibilities
1.When I consult a doctor, I pay, either through my immediate wallet, or through my insurance/taxes to purchase his/her expertise. I am paying, it’s not a freebie, the doctor is not ‘doing me a favor” – I get some say over what I am purchasing. Whilst I cannot take the service back, I can sure’s in hell decide to take my business elsewhere.
2. Delivery matters. I would not repeat visit a hairdresser or use the services twice of say, a carpenter - if I did not feel they had 1) evidenced expertise 2) done what we had agreed they would do 3) failed to achieve the agreed upon outcomes 4) treated me poorly. Why on earth would I wish to be compliant to the advice or service of any practitioner who failed to meet these criteria? I prefer and support practitioners who are open, communicative, honest and transparent. I definitely choose practitioners who treat me like the adult that I am.
3. We are allowed to ‘’shop for service”. In medical terms it’s called ’getting a second, or third, or thirty-third opinion, if its necessary. This is not about looking for someone who will tell us what we want to hear, because that is silly, and we are grown ups and we know better. It is however about following up when someone makes us feel demeaned, marginalized, unheard or infantilized. It is also about trusting that as the inhabitors of our bodies, we have some pretty good ideas what is going on for us. It’s ok to look around until we find a professional who acknowledges that. It should be noted, doctors routinely use this power of ’second opinion’ to make referrals when they have exhausted their expertise. When a doctor does this it is considered ‘good practice’.
4. Because we are the bosses of us, its our job to ASK QUESTIONS; question our diagnosis, question testing, question treatments, question outcomes, question other options or possibilities. Asking questions is responsible, it is necessary and it is what grown up people do. Note, a doctor must be a good asker of questions. When a doctor asks questions, we consider this good practice. It is also good practice when service users ask. I appreciate that asking questions takes more time than not asking questions. That is not my problem. Address the system, not my right to ask questions.
5. We are allowed to have feelings. When you are sick or in other crisis, it is natural, normal and permissable to have feelings about it. It is even ok to have feelings about your feelings. It is not ok for us to demean, diminish, or otherwise abuse the people providing us services (or supporting services) with our feelings; and sharing feelings, especially unpleasant or difficult feelings, is part of the crisis deal. Listening to difficult feelings, is part of the job of working with people who are experiencing illness or crisis of any sort. When we are ill, or upset, we are often not at our best. I have no doubt that people in pain are less agreeable, I’m generally a lot nicer lady if I feel well. Funny how that all works. Yesterday I went for a scheduled appointment and arrived only to be told the hospital had rescheduled my appointment. Without notice. For a month. Not ok. I had feelings about this. They heard about them: Clearly, respectfully, directly. I got my appointment.
6. It is ok to complain. If we feel that we have been poorly treated, if we feel that the provider of service has not upheld their professional responsibility, if something goes wrong and we cannot get it addressed with the service provider, we can complain to the appropriate authorities. Just as doctors talk amongst themselves (and complain) about patients (no code required its imbedded into your records and referral/handover notes), service users talk amongst themselves, their communities, and other relevant channels about their doctors. Everyone I know, knows about my ‘Botox Doctor”, who failed miserably to address the considerable health difficulties I was experiencing, but managed to ensure I received regular updates about breast implants and Botox treatments instead. Everyone I know, also knows how I ended up in hospital and subsequently began my journey to my current, very lovely,very thorough and very responsive doctor too (Thank you Dr Gilmore). Talk amongst yourselves. You’re allowed.
7. Request to see your file. Guess what? You own your health records, (maybe not in Australia, thanks Zoe) and most other records too. [I've had a bit of a poke around @ the Australian Government, Office of the Privacy Commissioner - have a look HERE in respect to your right to access] You are allowed to ask to see them. They are your records. You are allowed to question things which are in the records. You are allowed to ask for things to be appropriately amended. You are allowed to request your view or a statement be added to your records. I would definitely ask your doctor their position on this point and if they don’t allow access to records, it would be a deal breaker for me. Transparency, honesty, communication. These are non-negotiables. Have you ever experienced watching your doctor write or type things into your chart, while you are sat away from the screen or chart, unable to see what is being written? Have you ever tried to ’sneak a peek” at your chart when the doctor turned away or left the room? Unnecessary. It is ok to ask to see what has been written. It is ok to ask that referral letters or test requests be made in unsealed envelopes so you know what is in them. You’re a grown up, your records are not a letter being sent home to your parents because you’ve been naughty.
8. It’s ok to say no. It’s also ok to change your mind if you said yes, but now think no. It is not ok to say yes, when you mean no. Its not okay to say you will, when you know full well that you won’t. Clarity is of the essence, and your relationship with your doctor will only be undermined if you are lying or being deceitful about your condition or your treatment. For instance, I recently saw a new doctor, who after a 10 minute consultation, wrote me a prescription for an anti-depressant. I was distraught and unwell. Here’s a pill. I took the prescription, knowing I was unlikely to fill it. I did not fill it. I also let my next doctor know that I was not on with anti-depressants, the next time I was into the clinic. [See my earlier post, Are You Ready To Be Happy]. Health situations are dynamic; all parties involved must be prepared to renegotiate the terms of engagement on an ongoing basis.
[PS: that's right, I elected not to continue see the doctor who wrote me a prescription for anti-depressants when he knew next to nothing about me]
9. Research, formulate an opinion. It’s ok for you to Google your symptoms. Don’t laugh, I’m serious. Let your doctor know what you’ve come up with. No you are not a doctor, and ultimately you may be off base, probably you will be off base. That’s ok. As the inhabitors of our bodies, we have some ideas about what is wrong with us, and in the information age, we can begin to explore our own health. Don’t bury your doctor in pages and pages of photocopied Net Doctor reports, but do put together a list of things you are worried about, or ideas for treatment, or tests that interest you. Your doctor may tell you good reasons why they aren’t in your best interest, or your doctor may support your line of investigation. Either way, you are evidencing a desire to be a partner in your health, to gain information, to be educated. These are good things. If your doctor doesn’t think so, its time to go shopping.
10. Build a relationship with your doctor. Doctors are people and you are a people too (weird, eh?) People have relationships. Good relationships lead to better outcomes, whether we are talking about good sex, successfully raising a family, getting a good haircut, or working in partnership to create and maintain good health. Communicate with your doctor. Good relationships are communicative relationships. Let your doctor know you value your relationship. Work on it.
Bonus Point: Bring an advocate. When you are sick, in crisis, or otherwise feeling vulnerable, fragile or unable to speak up for yourself, it is ok to bring an advocate along with you. Back in Canada my advocate of choice was my best friend, who believe me you, ensured I was not overlooked or treated poorly at times when I couldn’t stand for myself. These days, I rely on dear hubby to be that person. A good service provider will encourage you to do this. It works for them too. It means that while you are still freaking out about the diagnosis, someone else is there hearing what comes next, and what you will need to do. It’s a win-win.
Feel free to share.
Sex-ism: Alive &Well On A TV Near You
I had a friend tell me the other day, that she thought there had been some reasonable gains in the way women were being portrayed by advertising. I have been looking around lately and have found some fantastic examples of why I firmly believe that is bull crapola. The above Yaris ad was linked over @ Hoyden About Town by Lauredhel and I had to watch it twice to believe my ears. There’s so much wrong with it I can’t even begin to type. Father handing over body rights of his daughter to a lascivious turd for umm .. why was it again? But hey, no worries, daughter’s like this sort of manly shtick between father and boyfriend, she’s ” ready to blow” and boyfriend will have her ‘on her back by 11′. All’s well in the neighborhood.
I also found a series of Virgin mobile ads posted by Stephanie Holland over at her website, She-conomy that really say so much about women, consider the following:
Gives a whole new meaning to ‘running off at the mouth eh?
Have another one ….
Cuz you know how women are …. talk, talk, talking, no discretion … no limits.
Gender stereotyping in 2009? Nahhhh.
But this ad… sort of interested me. It’s an anti discrimination ad (focus equal pay). Scanning the comments, I suspect that like the “hit the bitch’ anti-violence campaign in Denmark – it may miss the mark with the folks its most targeted toward.
***
Sexism. I’ll just leave you to talk amongst yourselves…..
*please click the links and interact with your reading
One of the cool features of my new WordPress blogs is a snazzy little feature, called “clicks”. You find it under your overall blog stats and what it does is allow you to see which links people have clicked in your post. I am usually reluctant to reinvent the wheel when I am writing and so, rather than writing massive posts, will attempt to link my reader into further information or substantiating information about what I am writing about. The links aren’t meant to be exhaustive, rather jumping off points to more info or fill in the blanks – like how did I get from point A —> Conclusion B. My links hopefully show my trail of thought, much the way Hansel and Gretel relied on breadcrumbs.
Interestingly, what I have come to see is that not many people click the links. I’ve been asking around and other bloggers tell me the same. Even when they provide clear and accessible supporting or developing information via links, a considerable number of people fundamentally disregard them and fail to click.
This is important news to me, another example of just because I click my way through the world, doesn’t mean that others do. It goes to show you can never assume anything and you might have to do a little work if you want other people to try things in a different way. I have been thinking lately about the ‘new media’ as it relates to my own writing endeavors and had written a bit about it in an earlier post, Can’t Stop Progress, which was really a bit of commentary about Arianna Huffington’s post, Journalism 2009: Desperate Metaphors, Desperate Revenue Models, And The Desperate Need For Better Journalism. One of the things she speaks about is ‘old media’ and the uneasy (antagonistic?) relationship it has with new media such as aggregated news, link economy, excerpts and expansions, citizen journalists and the way people have begin to directly interact with the news/media. As Arianna Huffington says in her post;
“News is no longer something we passively take in. We now engage with news, react to news and share news. It’s become something around which we gather, connect and converse. We all are part of the evolution of a story now — expanding it with comments and links to relevant information, adding facts and differing points of view.”
These are exciting times. We are becoming increasingly aware of the way that information and news is constructed and that we can change the way that news is approached or understood by simply clicking a link, Googling (or whatever other search engines float your boat) for more information or a different perspective. We comment, we share, we expand and develop information simply by the way we interact with it. We don’t have to wait for someone to spoon us their version of the news, we can go out and hunt and gather until we have built our own news.This is cool stuff if you are up with the approach.
Seems a fair few people are not yet turned on to this way of moving through their reading. They may still be used to and comfortable with passive exchanges of ‘news’ and information. Turn on the tv and channel 7 tells you what is happening (or at least what they think is happening or want you to think is happening). Have the paper delivered, or turn on your favorite radio station – same thing. We sit, listen or watch and have information ‘done to us’. Certainly this passive consumption of information can be less work and less challenging. We can listen, watch or read, call ourselves informed and be done with it. It is certainly less time consuming!
When I am out reading in cyber-land, it seems so easy to see the difference between people who are ‘old media’, vs ‘new media’. People’s comments invariably reflect whether they are curious, seekers and inter-actors of information or whether they are passive recipients of information and that bit of information often tells me whether it is worth my time to interact and communicate with them, or simply move on. I’ve come to this place after one too many ‘conversations’ with people who have very entrenched ideas about something, and will not extend themselves, even a bit, to find out more information, consider new information – or just generally inform themselves before stubbornly persisting in a position. They refuse to … click .. the …link. Harsh perhaps, but true.
Of course, if old media approaches to information and news are your preferred choice – that’s cool. There’s plenty of that out there and I think there is a place for it. I ‘do’ the broad news in this way and it works just fine. However, this is my chance to send a little cyber-wave to the kindred people who are already merrily clicking along the new media ‘Information Exchange’ and make a heartfelt plug to encourage those readers who are not yet on the road, to boldly go forth into “New Media” land, click links, and interact with your reading! You’re gonna see me adding a little reminder to *please click the links and interact with your reading, in my blogs because I hope you will consider what I write as a jumping off point, rather than an end point. I sure do. And if you should find different information, or go down another path with the information I am linking, please do share your thoughts, and links – I’d love to click them!
Boys Face Compulsory Feminism Classes At School!
What’s new in Australian education these days? The good news/bad news is; at least in the State of Victoria, a new program, Respectful Relationships Education which focuses on violence prevention is about to be piloted in four secondary schools. Are people happy about it? Nope, not mostly. What’s the problem you might ask? Well, over all the common response (most often from men, naturally) is, Victoria don’t need no stinkin’ feminism in their schools.
Australian Family Association spokesman John Morrissey states that boys are already getting “feminised education” due to the falling number of male teachers in schools”. Having skimmed through the above linked report, the decision to use a feminist framework is both clearly articulated and explained [p.35-36] It is also explained that feminist research provides “the most comprehensive and credible account of the causes and consequences of relationship and family violence“. The report acknowledges that due to ‘ignorance and hostility’ of the general population about feminism, it was likely that there would be some ‘backlash’ in the community about the use of the program. “Strident feminist propaganda won’t wash with boys,” maintains Morrissey.
There’s a host of reasons why people appear to be opposed to this program being run in schools, and they had no problem letting Dr Michael Flood (one of the authors of the report) know them in an interactive forum session courtesy of the Herald Sun (see John Masanauskas’ article and all the responses HERE). Despite the fact that there is a complete and comprehensive 91 page report which is available at the click of a link, for people to peruse at their leisure it was readily apparent that most of the respondents had not bothered to read it or educate themselves before engaging mouths and keyboards. “Me and my wife will teach my son how to treat not only women but men to. This is nothing but sexist from a minority group .Women can violent moody and emotional too. I will drag my Son and Daughter out of whatever school tries to implement this program.” or how about “NO way would I let this lezbot man hating crap near my son. Yes kids need to be taught respect from second they can walk and talk, but I refuse to let anyone teach my son to be a fag.“
Call me feminist but … is this not part of the broader social problem; ignorance and hostility toward anything ‘feminine/feminist’ and the labeling of even the most considered and academic of current thought and research as ’strident’ if its been undertaken by a woman. Again, it sadly appears that the people who had the most to say also had the most amount of trouble clicking a link and educating themselves. The program is not targeted toward boys, the rationale for teaching the program in the schools is clearly articulated. There is no content which suggests that boys are solely responsible for violence, and in fact some considerable effort has been made to explain that; “healthy relationships programs address issues like the difference between healthy and unhealthy relationships, conflict resolution, communication, understandings of violence and non-violence etc.” It’s a program for both boys and girls and its well overdue.
I’ve been stumbling on a variety of men’s websites lately, which I am sure are deliberately provocative and inflammatory and attract the worst nut jobs, however I begin to worry that this demonstrated quagmire of conservatism and chauvinism will not only impact women and girls, but leave a nasty mark on boys and young men. Consider this small sampling of some recent ‘men’s rights websites and articles’: Mens’ News Daily ‘Facing the Reality of Domestic Violence‘; The Spearhead ‘Suffrage Succotash‘; Men Are better Than Women (this is considered ’satire’ *cough*). This isn’t all of it, just the easiest to accidentally stumble upon. Though I assure you the sites are full of hate talk, sexism and rubbish – I do think they are worth reading a bit of. Why? Because there are a lot of people reading, commenting and ‘thinking’ – I use the term ‘thinking’ loosely – about gender, sex roles and violence on these websites and knowledge is power. If we remain ignorant that there are people out there and they are thinking in this way, we have no chance of being able to prepare a considered response.
Oh, and while you are having a little read, you might want to have a peek at the Australian Family Association website as well.
For myself, after looking at the websites I linked above and considering the fall out comments around the Respectful Relationships Education launch I have to say, I have a teenage son and a daughter and it is my express hope that this program will be made available in QLD schools before they graduate. I don’t think that this program is a ‘nice idea’ – I think it is absolutely imperative.
*please click the links and interact with your reading.
One of the Good Ones: Men Who Say NO To Domestic Violence.
I have been doing a lot of reading and thinking lately about family violence, partly because we’re hosting a domestic violence conference, Challenging the Silence, through my work in March – partially because I’ve worked with the issue most of my career, and partially because being new to Australia, I am still working to see the lay of the land here; but mostly because I’ve been there myself. It really is amazing that after living and working as a clinical therapist and social worker in four different countries the most remarkable feature of domestic violence is, where ever I go, there it is.
The next trend I consistently notice across these countries is that very few men are speaking publicly about domestic violence, and this fact always strikes me. After all, men have mothers, sisters, girl friends, wives, daughters – of course, they must care… mustn’t they?
Just when you wonder if they really do, who enters into the domestic violence debate (not recently, but steadfastly across time) but Patrick Stewart, of Star Trek fame. Not only has he written compellingly in a Guardian article, of his own experiences as a child, watching his father regularly beat his mother – he is a spokesperson for Amnesty International [Video: Patrick Stewart talks about domestic violence] and a patron of [Video:Refuge] a national domestic violence charity. He has undertaken a number of public service adverts, including this one,[Video: The Audition], with Joanna Lumley.
I have a tremendous amount of respect for people who will take an active stand against injustice, especially when doing so may be viewed negatively. Thank you Patrick Stewart, for being a man who is willing to speak so powerfully and openly against domestic violence. I’m sure your mother would be very, very proud of you.
**This little post is dedicated to my dear friend Chris, another of the ‘good ones’.
Quit smacking Us!
Good times, pre-coffee and someone is sending me today’s Facebook poll; Do you think spanking your child is abuse?
It amazes me that in the year 2009, we are still slogging away debating whether it is ‘acceptable’ to assault our children. I also am a little horrified to see anti-spanking trumpeted as the cause of all the world’s ills. “More and more people choose not to spank their child and is leading to the crimes today because parents are scared of getting in trouble for spanking” It’s got to be a bit short sighted to think corporal punishment and humiliation of our most vulnerable citizens is going to reduce crime trends. It is also troubling that we seem unable to view children as distinct human beings, entitled to equal rights and protections under law.
In 1979, Switzerland led the way forward by introducing an anti-spanking law. Finland, Norway and Austria followed within the next ten years. In a Global Initiative to End all Corporal Punishment Against Children, we now have over 25 countries (Nov 2009 stats) which have abolished spanking as ‘reasonable discipline strategy’. For a good look at what is happening with these initiatives, have a look at this Global Update.
We would not think it was acceptable to turn our boss around and repeatedly strike his backside with our hand [spank] if he was doing something we did not agree with. We would not grab a belt and strike our partner about her buttocks and thighs [spank] because she made us angry. And we all know that if we pull a stranger on the street over our knee and hit them with reasonable force [spank], the courts will view it as an assault.
I generally do not believe that parents wake up in the morning, wondering ‘what is the best way to screw up my kid today’? I don’t think the majority of parents want to hurt their children. I also don’t believe spanking is an acceptable discipline strategy and it worries me that when we are talking about ‘teaching’ children, spanking is the best we can come up with. There is plenty of research, plenty of evidence to support that spanking is not a solution to raising healthy, happy, socially adjusted children. It really is up to each of us to educate ourselves, stretch our resources and come up with better ways.









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