On side effects and choice

So, I went to the doctor today, because they wanted to talk to me about some blood test results. No problem I thought. My creatinine reading is usually off, and I figured that’s what they were worried about. It’s a walk-in clinic doctor and I had forgotten to warn them when they ordered the blood work. I have Nephrogenic Diabetes Insipidus from taking Lithium for 12 years. It means that my kidneys don’t concentrate urine. Long story short, I know where all the public washrooms in the Greater Toronto Area are. Not fun, but I have learned to live with it.

So I’m all prepared with my speech about how I forgot to warn them about the blood test. Problem is, that wasn’t what was wrong. Turns out the filtration rate in my kidneys is so low it is indicative of chronic, severe kidney disease. Off to the specialist with me. When I originally had problems, the specialist said I might lose 2-10% of my kidney function per year, or nothing might happen. I had been going with the nothing option because I had no symptoms and everything else seemed stable. Looks like I might have been wrong. Specialists are on holidays in August, all of them apparently, an no one seems alarmed enough to send me to a hospital, so I get to wait until September to find out whether panic is appropriate in this situation. Either way, it is making me think.

On a mailing list I am a part of, there has been a discussion lately about ECT. Specifically the ethics of putting an ad online looking for volunteers for a study, with the explanation that ECT “creates new brain cells”. This last bit was news to me, as far as I know creating new brain cells, not just new connections, is up there with having tea with a Higgs-Boson particle in terms of probability. Either way, this ad created a great deal of discussion. There was a response to the ad in this online forum, in which the respondent called ECT a human rights abuse. I am not a fan of throwing terms like that around, it smacks of fear mongering and invalidates the experiences of people who have benefited from ECT.

I have two friends who have been zapped in a medical way. Both of them experienced some memory loss, but they also derived benefit from the procedure that lasted for quite a long time. They have both had ECT multiple times and neither of them seem bitter, angry or feel they were coerced into consenting. This is not to say that all people who have ECT have a lovely time of it. Many people are seriously damaged, there can be catastrophic memory loss, and some people lose themselves entirely. ECT is obviously a last-case scenario as far as I am concerned.

One of the big issues was consent, specifically informed consent. Many patients are given a pamphlet, and a date and time for their first treatment, and that’s it. This is obviously not sufficient. One of my issues with consent while you are an inpatient is a bit tricky for me. I know, from my own experience, that when one is suicidally depressed you don’t always make the best decisions. For example, some depressed people are in so much pain that they decide to kill themselves. Probably not the most rational decision. When you are that depressed, and therefore a candidate for ECT, is it even possible for a person to give consent or are you so tortured and in so much agony that you would consent to a lobotomy if you were told it would alleviate your suffering?

There is a great deal of discussion on the list, and among patients in general, about autonomy and choice and being in control of your own treatment. There is a lot of talk about how we are sometimes treated against our will, that doctor’s prescribing practices are heavily influenced by pharmaceutical company PR and swag, and that the mentally ill are treated like imbeciles. We are “in denial” or “not in our right minds” according to the advertising campaign of one of the big hospitals here, and this touched off a firestorm of offence and indignation in the part of the community I am in contact with. The argument being that madness is not incompatible with competency, that we are still able to be part of our treatment decisions and that we are not mindless idiots because we occasionally lose our marbles. To a certain point I tend to agree with this.

The problem lies in the fact that you can’t have it both ways. Either you are competent to make decisions, and can consent to ECT, or you are not. If you are not, all choice is taken away from you and you lose all control. If you consent to something like ECT out of desperation without really understanding the consequences because you are too out of it, you could end up losing years of your life. It is a difficult thing to grapple with.

Historically the mentally ill have been treated very badly. There are still people alive today who were treated with lobotomies and insulin comas. Very often a crazy person would be locked away from society until their minds had been destroyed by drastic treatments. The goal was often not to cure, but to make the person docile enough to manage. There was not a lot of informed consent going on.  In the age of pharmaceutical miracles, drugs were used that caused horrific side effects. They controlled the psychosis or the mania, but left the patient little more than a zombie, or caused irreversible movement disorders. Patients who rebelled and decided to live with the psychosis rather than become a chemically created member of the living dead were often involuntarily committed for non-compliance. Neither option is really ideal.

In my time as a medicated crazy, the drugs have been marginally better. Sort of. Some of the newer atypical anti-psychotics are known to cause diabetes or metabolic disorder, weight gain is a given, tardive dykinisia is still a very real possibility and even the much lauded anti-depressants have serious side effects. I have often been told that the side effects from the SSRIs are negligible, and are no reason to stop taking them. Some of them include: decreased sexual ability, somnolence, agitation, increased risk of suicide, significant weight gain, and many more. None of these will make you very happy, and some of them are serious health risks. Benzodiazepines, which are the miracle drug of choice for anxiety, are fabulously addictive. They are the famous “Mother’s little helper” that so many people have become addicted to. They are also ridiculously cheap, and handed out like candy. One of the side effects of heavy benzo use is depression, which can lead to a prescription for SSRIs. You can see where this might lead.

As I mentioned before, I have had serious problems with lithium. I never had a problem with feeling dulled, or stupefied with lithium. I was always able to function well, and maintained my ability to be creative, but the long-term effects on my body have been harsh. I don’t actually regret taking the drug. When I am being honest with myself I know I would not have survived the 12 years I was on it without the stabilizing effect of the medication. I just wish there had been more alternatives.

I also took another medication in the 90’s which unbeknownst to me rendered the birth control pill ineffective. This was not listed as an issue in the product monograph, and my doctor was not aware of it until I showed her what I had found on the internet. From what I understand, that is part of the product warning now, but when it affected me there was no mention of it. Not a great way to engender trust in your customers.

There is a lot of research into medication now, and a huge emphasis on medical treatments for mental illness. I believe there is something wrong with my brain, and I am not opposed to medication, but I find this single-minded focus on drugs to be alarming. There are a number of non-chemical treatments for mental illness that have been found to be very effective. Cognitive Behaviour Therapy and Dialectical Behaviour Therapy being the two examples I am most familiar with. There is also some evidence that improving the living situation of the person tends to improve the symptoms of the illness.

Being in a panic about whether you will have a safe place to live and enough food to eat will exacerbate symptoms of even mild depression and anxiety. The stress of living in poverty, or fearing for your safety, can be triggers for mental illness, and there is a lot of research that mental illness is much more prevalent among the poor.

I worry that the focus that is placed on the biological determinants of the illness takes away from attention being paid to the psycho-social factors that are involved. There is a lot of money for new drugs, but the waiting list for the DBT program at the local psychiatric institution is two years long, and they only open it up for new people every once in a while, so you have to keep calling and hope the list is open that day.

Doctors who are being honest will tell you, and I have been told this, psychopharmacology is still in the medieval period of it’s development. We still don’t know why the medications that do work, work. The mechanisms of how drugs relive the symptoms of mental illness are hinted at, and researchers have some ideas, but they have not been completely pinned down yet. In the mean time the pharmaceutical industry is driven, not by altruism, but by profit. GlaxoSmithKline was recently fined $3 billion dollars for misconduct in the promotion of it’s products, two of which are used in the treatment of depression. This does not make me trust them more.

I fully believe that medications will become better and safer, and I think that eventually pharmaceutical companies will be reigned in and will not be able to exert as much pressure on doctors. I think there will be more regulations about publishing all the studies which are done on new drugs, not just the ones that support the position of the drug companies that funded them. I also think mental health treatment will become more humane, and more compassionate. I think there will be more funding for non-medical interventions and community support. I am glad that I went mad now and not 60 years ago.

I do wish, though, that there was more weight given to the issue of side effects, and damage to patient health. Side effects can be debilitating, physically and mentally. Most people who are not compliant with medication regimes are that way because they cannot tolerate the way the drugs make them feel. This is very rarely taken into consideration. I had a doctor ask me once, during a lecture I gave, what to do about a non-compliant patient. She said “I keep telling him how good the medication is, but he just won’t take it”. I asked her if she had asked him why he wasn’t taking the medication, and she just looked at me blankly.

Medicine, regardless of the whole “do no harm” thing, is not without risks. Surgery is risky, chemotherapy is poison and causes infertility and infection, there are no medications without side effects. Psychiatry is no different. Until more research is done and safer drugs are available we will have to live with either serious illness or serious side effects. Psychiatry needs to make sure that there is informed consent, which means that before ECT, or lithium, or paxil, a patient needs to know what damage the treatment can cause. Even the very depressed deserve to know what they are getting into.

I’m furious, and broke

It’s not even the end of the month, and the non-paycheck isn’t stretching as much as it needs to. I need groceries, I need to pay hydro and I need to pay for dental work.

The part-time job I thought I had fell through, and I know I am not really in good enough shape to look for another one. This one was perfect, doing work for a company I have worked for in the past with people I already know, doing things I already know how to do. The thought of trying to find some other place to take me on terrifies me right now. The whole process of applying, interviewing and landing a job is scary all on its own, but the thought of having to learn new people, new places and new procedures seems daunting and more than a little overwhelming.

I don’t qualify for welfare, because my husband works, and I am too functional for disability support, pittance that it is. Disability support wouldn’t even cover our rent, and the cost of moving is prohibitive all on its own.

I’m angry. Seething actually, that an intelligent, well-educated woman can’t support herself. My depression and anxiety are stopping me from going out and getting a job, and I can’t get any other support. I am beating myself up for being so useless, but on an intellectual level I understand that this is not really my fault. Intellect isn’t all it’s cracked up to be on this one.

I could hit up my family, again, but the humiliation is more than I can handle at the moment, and they have already gone above and beyond for me. The financial support they have given me so that I can go to school is much appreciated, but it always comes with strings. No matter how well-meaning they are, ‘suggestions’ about how I should live my life, and what my priorities – or my husband’s priorities – should be are not helpful and they make me feel like a child. Feeling like a child is not really conducive to improving my self-esteem and confidence.

Almost everyone I know with mental health issues is broke, close to broke, in debt or barely making it. Financial stability or at least some measure of security is important. Financial stress is one of the strongest influences on my mental health, and from my experience it is that way for most people. How is it that I am expected to be building myself up, strengthening my psyche and getting well while at the same time trying to figure out if I can afford milk?

I need a job to get better, but I need to be better to get a job. How is this going to work out? It’s not like I want the state to support me in a luxurious lifestyle. I’m not looking for a holiday, or a new outfit. I just want there to be some sort of short-term system that I can tap into for a few months to keep things going until I can get my act together. Medical EI? Yeah, that only works if you have been paying into it for a certain number of weeks, and my last job was contract so it doesn’t count. Catastrophic insurance? Also not an option, I don’t have any. No insurance company will cover me for anything related to my mental health because I have a pre-existing condition.

I know this is a lot of complaining, but realistically I am not alone in this. I see this happening over and over again to people I know. Poverty is a significant contributing factor in mental illness.

From The Canadian Mental Health Association (Ontario)

“For persons who are poor and predisposed to mental illness, losing stabilizing resources, such as income, employment, and housing, for an extended period of time can increase the risk factors for mental illness or relapse.”

We are so focused, in North America, on individuality, on personal responsibility, that we are putting people like me at risk of relapse. Relapse, for me, means possible hospitalization and that, as I have said before, is really expensive. Even beyond mental health issues we seem to be unable to focus on prevention.

We would rather punish people after they have committed a crime than put social supports in place to reduce the things, like poverty for example, that breed crime. We seem to be willing to risk the life and health of citizens to avoid paying for preventative programs. The mayor of Canada’s largest city just voted to refuse $300,000 in free federal funding to support at-risk kids. This in the same week as a gang-related shooting in a major mall that killed two people and injured several innocent bystanders.

We starve the system of support for seniors to the point where they can’t afford to stay in their homes and end up in long-term care or hospitals. Both are very expensive when compared to personal support workers and home care. That is not even taking into account the quality of life issues that arise when you hospitalize someone who would rather live out their life at home, or even in hospice. We don’t even have a system for supporting families that are trying to care for their aging parents and grandparents.

Other jurisdictions, including places like Germany and Sweden, have a philosophy of preventative intervention, of acting to prevent crises and expensive acute care or incarceration. Of course they are, gasp, more socialist and, double gasp, European, but really do I care what we call it if people get what they need? Sure Europe is in a financial mess right now, but not all of it is due to an out-of-control health care system, and Sweden and Germany are doing pretty well all things considered.

Out of personal interest I would like some income support, to get me through this rough part, to keep me from losing my marbles trying to feed myself. I would like it if disability support were not based exclusively on the premise that you will not recover, and if it were enough to raise a person above (or at least to) the poverty line. At a community level, though, I want more support for the vulnerable before they end up in crisis, not just out of self-interest, and not just for reasons of social justice (although that should count for a great deal). We can’t afford the health care system, the welfare system and the corrections system as they are set up now. You hear it in every budget speech, in every ‘austerity’ program proposed. If the system is broken – fix it! Look for lower cost alternatives like preventative measures, supportive measures, things that will allow people to get into, or get back into the work force. Don’t make us suffer to the point where we get acutely ill, or get into a gang, or end up in long-term care. That costs way too much in money and in human suffering.

Invest in people a little. Put some money into the system, up front, and in a smart way. It will pay off long term.

I’m hoping some person I helped out in the past will turn out to be fabulously wealthy, hate all their relatives and leave me their vast fortune. Realistically, it’s more likely than winning the lottery. I’m a nice person and have helped a whole bunch of people out over the years. Hey, it could happen!

Some of it will go to groceries, for sure. I would, however, spend a lot of it supporting people like me that just need a few months of cash to keep the roof over their heads while they figure out how to move forward. Yeah, I’m really hoping that little old lady who fell down the stairs in 1989 has a vast fortune, and an ungrateful nephew who is just out for her millions. I’m still hoping the people of Ontario and our elected representatives will wake the hell up and shake up their priorities, but given my level of pessimism right now a wealthy widow is looking like my best option. Sad.