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Patient education and employment
The editor of renalweb continuously puts the blame of patients not working on LDOs and the government. {And there is still no mention of targeting or increasing dialysis patient employment, although it was specifically stated as a goal in the original 1972 legislation. This omission virtually guarantees, in terms of improving patients' lives, that U.S. dialysis care will remain stagnant.} I worked in a dialysis facility for 10 years, and we were very active in trying to assist patients to get back to work. Less than 1% of thoses who came to us unemployed were even interested in working or gaining access to education. I think it is the mind-set that they are on permanent disablility, so why would they want to return to work. Just my opinion, as we truly tried. We even tried to get them to increase their self-care at the facility level if they didn't want to go on home therapy. Those who chose to stay on HD rarely wanted to be involved in their care, or care planning.
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I agree that once dialysis patients become disabled/unemployed, they rarely return to work. Once patients sign disability documents, they seem to accept a different trajectory for the lives and their families’ financial status. Whose failure is this?

I would start by asking why your patients don’t want to return to work.

You state that, “I think it is the mind-set that they are on permanent disability, so why would they want to return to work. Just my opinion, as we truly tried.”

Unless we understand the reasons why patients don’t feel empowered to return to work, the situation will remain the same. There has been virtually no research on dialysis patient employment in the last forty years. All of the professionals who had expertise in helping patients remain employed were drummed out of the LDOs long ago. Most dialysis professionals who stay in the field adopt opinion and attitudes that have little understanding of the patients’ common and unique predicaments. It has become far too easy just to blame the patients.

If I were a patient, I would want to see, meet, and talk to other patients that were working. I would want to see the programs that had been set up to support working patients. I would want to know how my feedback is integrated into my care so that I can remain employed. I would want to know that the clinics are financially invested in my remaining employed. I would want to know if I can get enough dialysis to feel well enough to work. Are your clinic hours conducive to employment? I would the clinic administration and staff members to know that it is difficult to switch back and forth from working to being disabled. I would want them to know it is a tremendous financial risk to go off of disability and then fail to remain employed. If I am being taken care of by a poorly trained technician staff and have a dialysis clinic administrator that has demonstrated little expertise in helping patients stay employed, why should I risk it? I would ask you, if you were in my shoes, want would you need from the clinic and professional staff to keep working?

We were much better at keeping dialysis patients employed 40 years ago. More background information here:
Posts: 64 | Registered: 15 April 2006Report This Post
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I agree. Health care in general is less and less patient-focused. Although individuals may make an effort to motivate patients to work, do the systems also support this? I can imagine how exhausting it would feel for a patient to consider working again. This is especially true in this economy where although there are some understanding employers, many offer little assistance for those with health difficulties. Maybe some job placement options would also be helpful. Although patient motivation is necessary for them to go back to work, it also needs to make sense for them and be a true possibility.
Posts: 13 | Registered: 26 October 2013Report This Post
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If these dialysis patients would find themselves useful again and productive in different job manners, it can bring about better healing for them, mentally as well as emotionally. They would feel a sense of purpose of living and a sense of responsibility, and not just undergoing HD for the sake of prolonging their lives. They are not disabled or debilitated at all. They have to live normal lives with certain challenges as to the caring for their HD ports.
Posts: 13 | Registered: 26 October 2013Report This Post
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