A couple of weeks ago, Anita saw a rehabilitation consultant in relation to her MS. This was instigated following an assessment for an Extended Aged Care in the Home (EACH) package. My question at the time was, “What benefit will Anita (or anyone else) derive from this consultation?” Apart from the obvious financial benefit to the provider, it seems that there was no benefit, so I’m struggling to see how it can be justified. Now it seems that Anita needs to spend a week in hospital to be ‘fully assessed’ to see what else the rehabilitation team can offer!! What else they can offer??? They haven’t offered anything yet, nor can I see any circumstances in which they will ever have anything to offer. We are on a one-way street with MS, and rehabilitation is unrealistic. There is talk of trying a foot orthotic to improve Anita’s ability to get into the shower. But what about the fact that she cannot lift her leg?
This all seems reminiscent of our trials of medication for her MS. Anita has primary progressive MS for which there is no proven treatment, yet she was put on a trial of interferon beta 1a (Avonex) then glatiramer (Copaxone). Both treatments are expensive, and don’t work for her type of MS. My concerns about the risk vs benefit analysis fell on deaf ears. I was concerned that there was no way to monitor the benefit of treatment, as it is measured by the number and duration of relapses, of which Anita has zero. In then end, we pulled the plug on medication treatment as it was causing significant adverse effects for no benefit. In other words, the risk vs benefit analysis showed that the risks were too high. Similarly, the cost/benefit analysis showed that the money spent was not worth it.
So now we are looking at a week in hospital. For what? No-one seems to know. We are expects to make a decision without having any information about possible benefits. I know the risks – hospital acquired infections and loss of autonomy as an inpatient spring to mind. And the costs – cost of admission for a week, cost of two 1000km drives to get to hospital and back home again, disruption to family life. Obviously I need some benefits to outweigh these risks and costs, but it seems there are no benefits. I cannot accept a ‘let’s try it and see’ approach, as I’m the one who has to drive 2000km to make this happen. I don’t want to deny Anita a chance to get some help, but you’d think a specialist would be able to suggest what benefits might be possible. The attitude seems to be, “Oh well, at least it’s a holiday for Anita, and she’ll be a public patient so it won’t cost you anything”. Yeah right, that’s because it doesn’t cost anything to drive 2000km. And anyone who thinks staying in hospital is a holiday has never done it themselves. At the very least, this whole thing is unethical. Also, I think that it is unprofessional for a healthcare practitioner to counsel a patient to undertake a course of action which fails the risk vs benefit analysis.