What is the role of socialworker/dietitian

Discussions for Patients, Family, and Friends HD For Patients
1

Hey
Can someone explain the role of pt social worker and dietitian in dialysis?
Are people on dialysis that slow that we need to hear about what food not to eat on weekly basis if in center and monthly basis if we are home? And if the social worker is not there when we come to our monthly or is not in every week in center what good will they do if we come in only to be told that we have to set up another day to see them? My 13 months on dialysis seems that big brother is alive and living very well in the dialysis world.

bobeleanor

2

I guess we have been much more fortunate with our experiences. As for the social workers (I say plural because we have dealt with 2 different clinics) both have been a wealth of knowledge and have been very eager to do everything they can to get us information that was needed.

The dieticians do mix in information that we already know, but how do they know what you know and what you don’t? It always helps to get that reinforcement that what you thought was right really is right and then there is always the stuff that you thought you knew but really didn’t. I have never spent time with the dietician or the social worker without learning something.

3

I have experienced every kind of dialysis team member- most are knowledgeable although not always up to date. If I had my wish, each one would visit me regularly and teach me something I need to know to better understand my disease and improve my tx. Even if they could only speak to me for a few minutes at a time, if they could just teach me something I need to know to improve my tx ( and not the kindergarten stuff), that is what I would like them to do. In my current unit, I never see my SW or dietitian unless I personally put a call in to them. In other units I have been in, they may of visited weekly, but did not have anything to teach unless I could think of the questions to ask. It shouldn’t be this way. There are many things they can teach, but few I have had are into educating patients. The same thing applies to nephs. If they do not enjoy or have the ablilty to educate each unit should have a nurse educator who does.

4

Wow. Like I said, we have been very fortunate. I used to get frustrated when they tried to tell me something that I already knew, but I found that i was better off to listen and make sure I really knew what they were saying. Many times I knew most of it, or thought I did, but they increased my understanding or I was mistaken about the way I thought about it.

(Whew! Hope that makes sense.) If you can hav a list of questions prepared before you go, I find that really helps.

5

Same here. My dietician looks after my blood work and gives me advice on how to manage my food to balance my blood chemistry. She really helps me a lot.

Now…my social worker is there IF I need her. I went trough a rough beginning of the year and she was there trying to get profesional counceling for me.

6

I’m sorry to hear that you don’t feel that you’re getting any benefit from having a social worker or dietitian. I am a social worker and worked for 16 years in 3 different dialysis clinics. I have a masters degree in social work with a specialty in clinical social work. I have the license in my state that would allow me to work in a mental health setting, but I chose to work in dialysis because I enjoyed the multiple roles that I fulfilled there. As part of my assessment and follow-up care, I talked with patients and their families about such topics as (not all at one time):

  • Level of physical, emotional, and vocational functioning
  • Short and long-term goals for the future
  • Emotional well-being and ways to cope with kidney disease and treatment, including mentors when available
  • Independence/dependence double-bind that patients often feel when staff expect them to be independent yet to do what they’re told
  • How much help is needed at home to be safe and coping with any living changes
  • Getting physical rehab or promoting exercise to increase physical functioning
  • Relationships with spouse, friends, family, dialysis staff, doctor(s) and issues that jeopardized those relationships
  • Sexuality and dialysis, including broadening awareness of what sexuality includes
  • Knowledge and beliefs about treatment options that might fit their lifestyle better
  • Working on dialysis, problems with jobs/bosses, understanding their legal rights/discrimination, advocating for workplace accommodations that allowed patients to keep their jobs
  • Previously enjoyed activities and how to pursue as many of them as possible
  • Traveling and working with the patient and other clinics to coordinate treatment
  • Insurance coverage, including explaining the minute details of Medicare, Medicaid, eligibility for Medigap plans, coordination of benefits with employer group plans, etc.
  • Financial help with costs of treatment or costs of living and linking patients/families with community resources that could help them, when available
  • Satisfaction with care at the clinic
  • Helping to identify and resolve complaints before they became grievances as well as how to report grievances
  • Troubleshooting all types of barriers to following the treatment plan
  • Planning for who should make decisions about medical care if the patient can’t choose (writing an advance directive)
  • Discussing stopping dialysis, hospice, and how the dialysis clinic could help if the patient wanted to stop dialysis because the burdens to them exceeded its benefits
  • Referring to outside mental health providers if the patient needed more intensive counseling than my caseload of >100 patients at 2 clinics allowed
  • and much more…

In addition, I did inservice education with staff about such topics as:

  • The social work role in dialysis
  • How kidney disease and treatment affects patients emotionally;
  • Common concerns that dialysis patients have that may affect their ability to follow the treatment plan including the difficulty of following the plan;
  • Common fears/beliefs that patients may have but may not express
  • Types of problems to refer to me
  • Ways to help patients live up to their highest potential instead of fostering dependency
  • And much more…

You should have be able to talk with a social worker and a dietitian when you need one. If you don’t, ask the clinic manager or administrator how to contact them. You may want to set up a time to talk with them by phone if they’re not there when you’re at the clinic. One barrier that prevents social workes and dietitians from seeing all patients all the time is that they are the only dialysis personnel who often cover more than one dialysis clinic. Most have 100-200 patients ore more. They spend hours dealing with the very neediest of patients which takes time away from patients that seem stable. If a patient seems to be doing OK and is not asking for help, the social worker or dietitian may assume they are (which they shouldn’t do).

The current ESRD regulations require that your doctor, nurse, social worker and dietitian participate in care planning for you at least every 6 months (if you’re stable) or as often as monthly (if you’re unstable). To do this requires that your social worker and dietitian take the time to talk with you to assess how you’re doing, how you’d like to do, and what needs you have that should be addressed in team care planning. Patients can (and should) participate in team care planning. Hopefully this is more than just signing a form so ask how you can participate.

If this isn’t happening, you can always report your clinic and the social worker and dietitian to the state survey agency. State surveyors get complaints from patients and visit clinics to observe care, review how closely care follows clinic policies, and they pull medical charts and talk with staff to determine if complaints are valid. If they are, they would cite the facility for a deficiency in social work services or dietary services and require that the clinic come up with a plan of correction which could mean hiring more of these professionals so they can do their jobs better. You can’t imagine how often I hear from social workers that they’d like to spend more time with patients but helping patients keep their insurance, get rides to dialysis, and get the drugs they need takes most of their time.

7

A friend of mine was trying to encourage another fellow dialysis patient by indicating that he could probably work and dialyze since he was going in to social work/counseling profession. He mentioned that social work/counseling was “light duty” kind of work, to which I responded. . .

I beg to differ calling counseling/social work light duty. Perhaps physically but even then depending what clientele you are working with it can be physically and emotionally stressful. Now I say this having worked with different types of social workers in different types of settings and knowing some personally.

Granted if my only exposure to social work was Renal Social Workers I would tend to think it might be “light duty” that is until you get into the palliative care issues. I’m sure it takes a toll on our social workers when they do grief counseling with the families of patients who have past on. . . especially those who they have known and worked with for many years. I’m sure it is very stressful to work with a patient who has decided that they would rather not continue with dialysis and have to watch as they gradual and often painfully die.

Another example is counselors who work with foster care and have to take children away from families that can’t get it together. Probably the really stressful situations are not the blatant abusive cases but those where drug addicted parents are trying their hardest to get it together for their children but can’t so they lose their children forever.

On the flip side, that same counselor may have to take a child from her foster parents after she may have lived with them since birth because the birth parent appears to pass all the legal hurdles to get her children back. They pain of separation is nothing compared with knowing that child’s birth parents are not going to be able to hold up their end of the bargain and will have to be separated again from the child and this time most likely sent to different foster family. Breaking bonds over and over again until that child doesn’t know how to bond with anyone.

The counselor has to live with the fact that perhaps that child if they are lucky will deal with another counselor or sorts a parole officer in their future. I say lucky because that infers that the child survived potential abandonment, abuse, prostitution, gangs, homelessness, starvation.

Or a counselor who goes to remove a child from an abusive situation and is held against her will, scared to death that she may not walk back out the door she came in, trying to get her two way radio to work all the time trying to convince the child’s birth father that she is her best link for him ever seeing his son again.

Another example is when a counselor has to meet you at a restaurant parking lot to take away the baby that you thought would be your forever child because her birth mother changed her mind after she left the hospital. This example happened to my wife and I. I’m sure it was not a “light duty” day for the counselor/social worker.

Or perhaps the counselor needs to help a veteran of the Iraq war understand how to negotiate the rest of her life without her legs. He needs to help the soldier to get up out of bed when she does not see a reason for it. Again, no too light duty.

Or perhaps, your wife wakes up every morning thinking that her chronically ill husband will be dead leaving her alone after twenty years together to raise their 7 year old son and 3 year old daughter that they struggled so hard to have. A counselor may be the only person helping her to keep it together since her spouse is just struggling to stay alive and can’t begin to assuage her fears. Helping case after case like this all day must take a toll on the counselor/social worker.

I said to him, “I don’t mean to be a downer but all too often the hardest jobs in our society are the least paid and least respected and often put off as light duty.”

I think very highly of the counselor/social work profession and do not see it as [COLOR=#00ffff]light duty.[/COLOR]

Peace, Erich

Taken from Tasty Kidney Pie which can be found at:

8

Thanks, Erich! Social work, even in dialysis or a transplant setting, is only “light duty” in regard to physical exertion. The mental exertion and emotional toll can be tremendous. However, I can’t imagine a profession or a field that is as rewarding as being a nephrology social worker and helping people that have kidney disease. I feel blessed to have had this opportunity drop into my lap when I was a new social worker. When I die, I believe I will feel like I’ve done what I was put on this earth to do and that I have changed people’s lives and they have changed mine.

9

Beth wrote: "You should have be able to talk with a social worker and a dietitian when you need one. If you don’t, ask the clinic manager or administrator how to contact them. You may want to set up a time to talk with them by phone if they’re not there when you’re at the clinic. One barrier that prevents social workes and dietitians from seeing all patients all the time is that they are the only dialysis personnel who often cover more than one dialysis clinic. Most have 100-200 patients ore more. They spend hours dealing with the very neediest of patients which takes time away from patients that seem stable. If a patient seems to be doing OK and is not asking for help, the social worker or dietitian may assume they are (which they shouldn’t do).

The current ESRD regulations require that your doctor, nurse, social worker and dietitian participate in care planning for you at least every 6 months (if you’re stable) or as often as monthly (if you’re unstable). To do this requires that your social worker and dietitian take the time to talk with you to assess how you’re doing, how you’d like to do, and what needs you have that should be addressed in team care planning. Patients can (and should) participate in team care planning. Hopefully this is more than just signing a form so ask how you can participate.

If this isn’t happening, you can always report your clinic and the social worker and dietitian to the state survey agency. State surveyors get complaints from patients and visit clinics to observe care, review how closely care follows clinic policies, and they pull medical charts and talk with staff to determine if complaints are valid. If they are, they would cite the facility for a deficiency in social work services or dietary services and require that the clinic come up with a plan of correction which could mean hiring more of these professionals so they can do their jobs better. You can’t imagine how often I hear from social workers that they’d like to spend more time with patients but helping patients keep their insurance, get rides to dialysis, and get the drugs they need takes most of their time."

So much good stuff in your post, Beth. You sound like you were an incredible renal SW! I have had SWs and dietitians who are knowledgeable in certain regards. But sadly, in every unit I’ve been in, they were either maxed out or didn’t have the depth of expertise I desired in a professional.None were up to date on current dialysis info. Don’t get me wrong, as I said, each one has had his/her good points, but never have I had the type of relationship where I felt truly supported. And many has been the times that I didn’t even want to get started with them as to get their help caused more problems than it solved! For example, getting one SW’s assistance for a trip- I could of made better arrangements myself, but the unit I was traveling to required my SW to make the arrangements.

And I agree that from my experience, the SWs I’ve had spend the bulk of their time with the neediest patients, so patients who are less needy, but who have legitimate needs/concerns are overlooked. Also, just because someone is a SW does not mean that he/she is a balanced person although one would think they would be with their educational training- I’ve counseled my SWs more than they’ve counseled me!

Team care planning with patient participation? No such thing in any of the 6 units I have been in lol. And I know you and Dori always say report em, but I haven’t found a way I feel comfortable doing that yet considering I’ve always needed my dialysis txs and wouldn’t be sure I’d have one if I reported them. Also, I’ve seen so many state surveyors walk in units I’ve been in and not do a single thing about the dirty conditions, so it is very hard for me to believe that they would take my complaints seriously if they won’t even deal with the unsanitary conditions.

In a way, I feel like you are my SWs through this site. I know Dori is not a SW, but you are so helpful, too, Dori. What made you each go into this particular career path? Think I read something about it previously, but don’t remember. I really appreciate all the assistance I’ve gotten here. It’s just an incredible thing that when one has a chronic illness and others use their talents to be supportive how so much good comes out of it and those who support us are blessed back.

10

Thanks, Jane!

As far as career path, I was actually planning to be a jeweler! (My high school had terrific art metals classes). But, in college, working with my head felt preferable, so I switched from art to Psychology and also History of Medicine. I worked my way through school at a hospital as a nursing assistant and unit clerk, and had lots of direct patient care (e.g., being in the room when a doctor made a long, complicated explanation of something, then walked out, and had the patient ask, “what did he say?!”). Since I’ve been fascinated by chronic disease since I was 8 years old, a Master’s in Public Health would have been the perfect fit, but the University of Wisconsin didn’t have one back then (they do now). So, I got a Master’s degree in Child & Family Studies (which is now called “Human Ecology” (Huh??)).

After grad school, I approached one of my professors and we wrote a grant to write and desktop publish a series of newsletters for parents of infants called “Parenting the First Year” that came out each month for the first year of life. Hospitals send them out; part of their purpose is primary prevention of child abuse. (They’ve been extensively evaluated, and they work!). Then my husband went to grad school, and I did a few other desktop publishing projects while staying home full-time with our first daughter. In 1989, a company called Medical Media Associates was looking for a desktop publisher, so I applied and got the job. The company was founded by Edith Oberley, who was the home hemo partner for her husband, who’d been on at that time for 14 years (now 32+). We started out doing "general’ medical communications, but she’d written a book about dialysis, and MMA began to focus in the kidney area, which was really fascinating. In about 1991, Edith and her partner, Paulette, asked if I could write, and I started doing medical writing, which eventually turned into editing, project management, program management, and in 2001, I took over the Medical Education Institute, which Edith and Paulette also founded, in 1993. So, a good deal of “career path” is luck and being fortunate enough to encounter wonderful mentors.

Edith founded the Life Options program in 1993 (http://www.lifeoptions.org, and it was (and is) very rewarding to help people live long and live well with kidney disease. It wasn’t until 2003 that I found out that the only grandfather I ever knew (my grandma’s second husband; not a blood relative) died on dialysis in 1968–not that I would have done anything differently if I’d known. To me, the most compelling aspect of working in kidney education is that some of the first folks who went through “Life and Death” committees to get dialysis in the mid 1960s are still alive today–but the U.S. statistics on dialysis survival are not as good as those in Europe or Japan, even accounting for age, gender, race, comorbidities, etc. There is a HUGE gap between the actual and the possible. That’s part of the reason that Beth and I push so hard for home dialysis–people do so much better on it.

11

That was a cool story, Dori. Thanks for sharing it with me! How is it that you were fascinated with chronic disease as an 8 yr old? You’ve had an interesting path and you’ve helped a lot of people. Look at me- I went from no energy post tx until the next day and now I am bursting with energy and productive after most txs. Yes, there’s always a better way and I’m glad for people like you and Beth who helped me find the better way when it comes to my txs.

Have you ever read or taken a survey regarding what patients want in their dialysis care? Possibly this site will become the bridge between the Dialysis Industry and patients for improved care.

12

Beats me! I think it was because my parents wouldn’t buy me a book I wanted (“The Doctors who Conquered Yellow Fever”). Not getting it at the time made me more determined to learn about it later. So, sometimes it’s what life doesn’t throw you that turns out to be important. :wink:

Have you ever read or taken a survey regarding what patients want in their dialysis care?

Actually, the Life Options program, which the MEI has run since 1993 (I’ve directed it since 2000) was the first to ask patients what their experiences with their care were, and what they wanted. We did a series of interview studies (a total of 90 patients) in 1998, and the results were published in Nephrology News & Issues. Since then, we’ve done a couple of dozen other studies, mostly with patients, but also with professionals. And in 1997, I joined the dialysis_support listserv (it’s on Yahoogroups.com). In that time, it’s grown from about 250 to more than a thousand members, and it’s an amazing source of information and support–plus a way to keep my finger constantly on the pulse of what patients want.