by Henning Sondergaard…
I was at the HDU Meet Up and Conference in Orlando the other weekend and it was a fantastic experience. To be able to meet with other patients, care partners and professionals from around the United States was greater and more inspiring than I will be able to put into words, here or anywhere else.
One of the subjects that were discussed in many of the presentations and amongst people during breaks and the interactive luncheon was the issue of care partners and their role in HHD treatments. A subject I have some fairly strong feelings about.
This is the reason for my interest. Where I come from (the country of Denmark) the idea of care partners is not even taken into consideration – in fact my hospital has a rule. And I don’t know if it is nationwide or not, what I do know is that nobody ever talks about care partners there. The rule is that in order to be allowed to do HHD you have to be able to do everything yourself without help from anyone. I found this out because I am also a paraplegic and I have paid personal assistants to help me with practical matters in my home. So I tried to get my assistants to be there during my treatment. It was of great concern for me not to be able to even get out of my chair while I am running my treatment and while I am waiting for the bleeding to stop afterwards. But the answer from my clinic was quite clear. Unless I took full responsibility and did my own treatments without help from another person, I needed to stay in the hospital and I would not be trained for HHD. Period!
I find it utterly irresponsible but the alternative (dialyzing in a clinic) seemed to me even worse, so there…
As most of you know, this practice is the exact opposite of the standard practice in the United States. I happen to have an American friend who is also a paraplegic, like I, he does not have a care partner and that leaves him with in-center treatments as his only option.
I fail to see how I was denied treatment unless I relied on myself while my American friend was denied treatment because he relied on himself for treatment. There is something seriously wrong in this picture.
This example shows how arbitrary rules about why, where and how to do HHD are. No matter what country you live in the requirements for bringing your treatment home should not be the exact opposite of anywhere else in the World if these rules made any sense at all. But the point is that the rules do not make sense and in all likelihood they are not meant to make any sense.
I am not blind to the arguments for either stance. In my case the hospital wants to save the expense of having my PA there during treatment – it is a simple matter of saving money at the expense of health and safety of the patient. In my friends’ case the rules point to the aforementioned safety concerns. But aren’t we both responsible adults who should be given the right to live our lives the way we see best with the dangers and liabilities that comes with such a responsibility?
It is baffling to me that a clinic or a hospital can refuse somebody a treatment option that time and again has proven to be the best and most efficient of its kind. How can it ever be the responsibility of the clinic how the patient wants to live his or her life? If the patient chooses this level of responsible for their treatment then why that choice should be taken away from them due to rules that are clearly arbitrary?
It is no different from withholding insulin from a diabetic because the person does not follow a certain diet or exercise in a certain way daily – and I can’t help wondering what the result of such measures would be amongst diabetics, doctors and the general public.
So why is this sort of pastoral approach to treatments the standard in ‘dialysis care’?
My best answer is that ‘dialysis care’ is by and large a mirage. Dialysis is run by ‘dialysis business’, limited number of companies that have no real interest in patients or their care. Clinics are busy fighting congress and its budget cuts – using in-clinic patients as pawns in their money grubbing game of profit maximization – at the same time their clinics are under-staffed. Either by having too few people or by having people without the skills or qualifications necessary to do the job and keeping their patients alive.
At the same time the way payment works is that there is far from enough money to train patients or staff to do HHD. So even though HHD is far cheaper for insurance companies or whoever else is paying the bills, there is no incentive for those who are supposed to do the training since they will lose out in the long run by sending patients home.
At the same time the major manufacturers, Fresenius, Gambro and Baxter, will also lose out since their dialysis machines predominantly are only good for in-center dialysis. They are at best only a fraction smaller than the ones that were used in the mid 1960’s – close to 50 years ago!!
If electronics had followed the same lack of innovative strategy, we’d all be listening to LP’s and 8tracks and a modern laptop would be approximately the size of Manhattan.