page 8 page 13 the inside word on communication …who responded talk with their nurse once per...

in this issueWhat is the best way to talk

with my doctor?page 3

How can I deal with problemsin the dialysis unit?

page 8

What is the best way to communicate with

government leaders?page 13

COMMUNICATION: LET’S WORK TOGETHER

The Inside Word on Communication in the Dialysis Unit

By Karren King, MSW, ACSW, LCSW

VOLUME 12 NUMBER 4 FALL 2003

This publication is a part of the Kidney Learning System (KLS)™ and is made possible

through an educational grant from , founding and principal sponsor of NKF-K/DOQI.

We asked and you responded!Several months ago theNational Kidney Foundation

randomly sent a survey to 5,000 peoplewho receive Family Focus directly attheir homes. Since the survey focusedon communication between those oncenter hemodialysis and their healthcare providers, only those surveys (474in total) returned by people who werecurrently on hemodialysis in a facilitywere examined.

SURVEY RESPONDENTSSo, who responded? Most have been

on dialysis, not counting the time theywere transplanted, from 4 to 10 years.About two-thirds of respondents dialyzein centers owned by corporations orlarge dialysis chains. The largest per-centage of those who responded wasbetween the ages of 50–69 (45%) andapproximately 97% had completed highschool or further education.

HOW OFTEN YOU TALK WITHTEAM MEMBERS

Most respondents named nurses,not surprisingly, as the staff personthey most commonly talk with in the

dialysis unit. Seventy percent of thosewho responded talk with their nurseonce per week. One third of respon-dents said they talk with their kidneydoctor one time per week. However,another third told us they see their kid-ney doctor only once per month. Almosthalf of those who responded also seetheir dietitian about once per month.The social worker is the team memberseen least often, with approximately17% of those responding saying they“almost never” see their social worker.

One of the reasons so many peopleon dialysis only occasionally see thesocial worker is likely related to a for-mula that most dialysis corporationshave that limits the amount of timesocial workers and dietitians may bepaid each month for working in thefacility. For example, if your facility has50 people who dialyze, the facility mayonly pay for one-hour social work anddietitian sessions per person on dialysisper month. This means that if someonehas a crisis in the facility, the socialworker may spend many of those hoursworking with that person, and as aresult may not see many of the otherswho dialyze there.

WHAT YOU TALK ABOUT WITHTEAM MEMBERS

When you talk with these staffmembers, what do you typically discuss with them? According to thesurvey responses, the top five subjectsdiscussed with each of these fourgroups of providers are listed in orderof how often they are discussed in thenext column:

30 E

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11

continued on page 3

Kidney Doctor1. Medical problems related to dialysis2. Dialysis treatment 3. Death of other patients4. Medical problems not related

to dialysis5. Lab work

Nurse1. Dialysis treatment 2. Death of other patients3. Lab work4. Medical problems related to dialysis5. Medical problems not related

to dialysis

Dietitian1. Diet2. Meal planning3. Lab work4. Death of other patients5. Dialysis Treatment

Social Worker1. Travel plans 2. Insurance 3. Transportation4. Financial concerns 5. Death of other patients

Most respondents (70%) saythey talk to a nurse at theirclinic once a week. A third ofrespondents say they talk totheir doctor once a month.

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Family Focus Volume 12, Number 4

2

NKF Family Focus is published quarterly by the National Kidney Foundation

Editorial Office:National Kidney Foundation30 E. 33rd Street, New York, NY 10016800-622-9010 • 212-889-2210www.kidney.org

Editor-in-Chief:Karren King, MSW,ACSW, LCSWKansas City, MO

Fitness Editor:Pedro Recalde, MS, ACSMLos Angeles, CA

Medical Editor:Wendy W. Brown, MD St. Louis, MO

Nursing Editor:Bobbie Knotek, RN, BSNPlano, TX

ESRD Network Liaison:Roberta Bachelder, MAWoodbridge, CT

Nutrition Editor:Lori Fedje, RD, LD Portland, OR

Patient Editor:Dale EsterGlendale, AZ

Pediatric Editor: Barbara Fivush, MDBaltimore, MD

Social Work Editor:Mary Beth Callahan,ACSW/LMSW-ACPDallas, TX

Transplant Editor:Linda Harte, RN, BSN,MA, CNN, CCTKansas City, MO

Opinions expressed in this newspaper do not necessarily represent the position of the National Kidney Foundation

Editorial Director: Gigi Politoski

Editorial Manager: Sheila Weiner, LSW, CSW

Executive Editor: Sara Kosowsky

Managing Editor: William Comerford

Production Manager: Sunil Vyas

Design Director: Oumaya Abi Saab

Editorial Assistant: Helen C. Packard

fromtheeditor

Communication is thecornerstone of ourrelationships: with

those we meet in dialysis,our family, friends and oth-ers we encounter in everydaylife. The National KidneyFoundation and the FamilyFocus Editorial Board strong-ly believe that you are notonly a member of your healthcare team—you are the mostimportant member. A largepart of what makes thatteam run smoothly is goodcommunication. We feel sostrongly about this that wedecided to devote this entireissue of Family Focus to com-munication and how we canall work to make it better.

I want to thank each ofyou who responded to thesurvey that was randomlydistributed to our readerslast winter. It is our hopethat the results will helpthose who work in dialysisfacilities around the countrythink about the way theycommunicate with people ondialysis. It is indeed a “two-way” street.

On the topic of communi-cation, our Editorial Boardrecently met to talk aboutthe past year’s work withFamily Focus and to plan forour next. I am pleased toannounce that our entireEditorial Board has agreed toreturn and continue to helpFamily Focus remain a greatpublication.

I would like to share thenext four themes we selectedfor issues of Family Focus.The first will be calledToolbox For Life Part I: YourLife in the Dialysis Unit, andthe issue will focus on thingsthat you should know aboutin your own unit. The secondissue, Toolbox For Life PartII: Dialyzing to Live, willinclude ways that you canmake sure that you are “notliving to dialyze but dialyzingto live”! Our third issue willhighlight diseases that tendto run in the family that canresult in chronic kidney dis-ease. This is an issue thatyou will definitely want toshare with your family mem-bers. The last issue will high-light all types of information

about kidney transplanta-tion, specifically focusing on what those who are currently on dialysis shouldknow when considering a transplant.

We receive all types ofwonderful submissions fromour readers. To make thiscommunication with you eas-ier, we have created ques-tions for each of the aboveissues. We encourage you toshare your thoughts aboutthem with us. The first ques-tion is, “What has made yourtime in the dialysis unit bet-ter by helping you cope withthe challenges you may facewith things such as relation-ships with staff and otherpeople on dialysis, schedul-ing your treatment, etc.?”You can find this questionand enter your response atwww.familyfocusvoices.orgYou may also mail yourresponse to us at our editori-al office (address listedbelow). We’re waiting to hearfrom you!

For the Editorial Board,Karren King

FF

To find out about the

National Kidney Foundation,

visit our Web site at

www.kidney.orgor call

1-800-622-9010Make a donation,

learn about our

resources or find

out more about

kidney disease.

“The National Kidney

Foundation and the

Family Focus Editorial

Board members strongly

believe that you are not

only a member of your

health care team—

you are the most

important member.

Karren King

”

3


deareditor

I enjoy Family Focus. I am pleased to read about the trials and success ofthe people that have dialysis full time.

I have been on dialysis for 15 years. I feel that is a record. I had a kidneytransplant that lasted eight hours in the days they were not sure of what theywere doing. My kidney failure is from a family gene. My dad and his brothersand sisters had it and all passed away at early ages of around 40. It startedwith my dad’s mother.

You may ask, “How have you been so successful with this health problem?” Iwould like to share the answer with you. First off, educate yourself aboutyour health problems—the “can do” and the “no can do.”

I lived in the Bay Area in California when this happened to me. I would go tothe Stanford University campus any time they would speak about kidney fail-ure and the “dos and do nots.” Once you understand the “do nots”—forexample, once you know the dangers of poor eating habits—do not keepdoing the wrong thing. Be strong and keep all the rules.

Good luck in your challenge, and remember: Learn the rules of kidney failureand keep the rules. You can live a better life.

Bertha Meredith

For the most part, these resultsare encouraging. When people on dial-ysis have questions, they seem to beasking the right professional for help.The exception to this is the socialworker. Dialysis facilities are requiredby the federal government to makesocial workers available to those ondialysis. Social workers are trained toprovide psychological counseling foryou and your family. However, inmany busy dialysis clinics, socialworkers are placed in the role of finan-cial counselor or transportationexpert. This is not the most efficientuse of Medicare’s precious dollars, andyou should be aware that social work-ers are mainly available to you forpsychological counseling and emotion-al support.

The topic least likely to be discussedwith any team member was end-of-lifecare, with 324 survey respondents say-ing they had not discussed this withany team member. This finding canhelp guide us in understanding theareas that need more attention in thedialysis unit. Thinking about the vari-

ous end-of-life care choices and talkingabout them with the health care teamshould be a basic part of every person’streatment plan.

Of those who responded, approxi-mately 67% had their medicationsreviewed with them at least monthly.Those who had their lab work reviewedwith them more than once per monthwas even higher at 93%. A small per-centage of respondents reported thatthey did not have their medications orlab work reviewed with them at leastannually.

HOW YOU FEEL WHEN TALKING TO STAFF

Ninety-five percent of those whoresponded said that they felt comfort-able asking staff questions about theircare, and most people did talk with astaff member the last time they experi-enced problems. Again, not surpris-ingly, the staff member most respon-dents were likely to go to with a prob-lem was a nurse. The respondentstypically found the person theyapproached for assistance to be

responsive. Although most found all ofthe staff to be available when they need to talk with them, at least10% of those who responded foundboth the social worker and kidneydoctor to rarely be available

SUMMARYTo summarize, it seems those who

responded are telling us that overallthey feel communication with theircenter hemodialysis staff is good. Mostfind the staff to be responsive andavailable to them. While this “reportcard” is quite positive, there arealways areas for improvement. Forexample, approximately 14% of thosewho responded are involved in plan-ning their care by signing their careplan . . . without discussing it! This isunacceptable, as you truly are themost important member of your healthcare team. By continuing to worktogether, those on dialysis and healthcare professionals can continue notonly to further enhance their commu-nication, but as result also enhancethe quality of care provided andreceived.

The Inside Word on Communication in the Dialysis Unitcontinued from page 1

FF

Family Focus VOICESFor this issue, Family Focussent out thousands of surveys tofind out what our readers thinkabout communication in thedialysis clinic. We would like tocontinue to hear from our read-ers about many other topics byincluding a new question withevery issue of Family Focus. Thequestion and responses will alsobe posted online at www.familyfocusvoices.org

Feel free to type your responseonline, or to send your responsein writing to Family FocusVoices, 30 East 33rd Street, NewYork, NY 10016.

What has made your time inthe dialysis unit better byhelping you cope with thechallenges you may face withthings such as relationshipswith staff and other peopleon dialysis, scheduling yourtreatment, etc.?


4

You can think of stress as our body’s reaction to things going on around us. Stress can occurwhen something happens that is different from what we expected. It is important to remember thatstress is normal—it is a natural response and in some cases it is necessary for survival. When we arestressed we can respond to our environment in either a positive or negative way. Our goal is not toeliminate stress, but to manage it and lessen its effects.

Our bodies have a natural way of dealing with stress, commonlyreferred to as the “fight or flight” response. When facing a physical dan-ger, our choice is usually to stay and fight or to run away. In eithercase, our body prepares by increasing available energy and raising oursensory perception to protect us from injury.

Why Stress About Stress?By Pedro Recalde, MS

Recurring stress can be exhausting to our bodies, but we can learn what stresses us andhow to control the ways we react to stress. In order to understand the concept of stress, we must first start by discussing WHAT stress is, HOW it affects our bodies and WHAT

we can do to control our response.

What is stress?

What does stress do?

“FIGHT OR FLIGHT” RESPONSE WHY?pupils and ear canals dilate (get bigger) to improve our vision and hearing

muscles get tense to protect the bodyheart rate goes up to give more energy to muscles

blood pressure goes up to prevent shock, if injuredrespiration (your rate of breathing) gets faster to supply more oxygen to the blood

need to urinate more to get rid of toxinsblood fats and sugars go up to give more energy to muscles

blood clots more quickly to lower chance of bleeding to death if injured

digestion slows down to focus on protection instead of digestion

STRESS CAN BE:

● positive (getting married, retir-ing, holidays)

● negative (death of a loved one,divorce, finances)

● emotional (argument with yourspouse, raising teenagers)

● physical (labor, physical exercise)

The “fight or flight” response is designed for immediatesurvival during stressful situations. If you have heart dis-ease, commonly associated with kidney disease, the “fightor flight” response becomes dangerous. The combination ofmore fats in the blood, higher heart rate and blood pres-sure and increased clotting factors all raise the likelihoodof having complications with your heart.

We cannot get rid of stress or the “fight or flight”response from our lives. Stress is a natural part of ourdaily lives and we must learn how to control our responsesto it. Although stress management will not get rid of yourstress, learning to use stress management techniques canhelp to 1) lower the number of times your body uses thestress response and 2) lower the effects that daily stresscan have on your health.

Imagine that the body is a barrel with a spout on thebottom. Just as our lives are bombarded with stress, thatbarrel is being filled with water. The key to that barrelholding the water depends on how often someone opens thespout to let water out. If no water is let out, the barrel willoverflow, making a mess.

The human mind and body can be seen in a similarway. We will always react to changes in our environment. Ifwe are not careful in controlling how much stress we let in,versus how much stress we “drain out,” we might end up“overflowing.” This could have a negative impact on ourlives and our loved ones.

If stress is normal, how can it be bad? Watch out for “Overflow”!

What can we do to control stress?

continued on page 6

➔➔➔➔➔➔➔➔

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5


Can We Talk?By Ramiro Valdez, PhD, and Bobbie Knotek, RN

Communication—beingable to listen and totalk about thoughts

and feelings—is usually noteasy. It is not surprising,therefore, that there arecommunication problems atdialysis and transplant clin-ics. Over half of the peoplein the building (those ondialysis) may be feelingangry, worried, afraid, frus-trated, resentful, sick or justplain neglected. The rest ofthe people in the building(the staff) may be feelingstressed, rushed and worriedabout a sick person they arecaring for or about the workthey have to do. A dialysisunit is a communicationproblem waiting to happen!

Both staff and individualson dialysis need to learn tocommunicate better. Butwait—you may be asking,“Why should I learn how tocommunicate better with mydialysis staff? Isn’t it thestaff’s responsibility to learnto communicate better withme?” Yes—staff members doneed to learn communicationskills; however, communica-tion is a two-way street. It isnever just one person’sresponsibility. More impor-tantly, it is to your benefit tolearn to communicate yourphysical, emotional and dialy-sis needs to your staff in away most likely to get thoseneeds met. Below are somesimple DO’s and DON’Ts thatcan help you learn to com-municate more effectivelywith your staff (and your fam-ily and friends).

DO spend more time listen-ing than speaking. Most ofthe time when people havetrouble getting their “mes-sage” across, it is becauseone or both of the people are not really listening toeach other.

DO clear your mind. Focus your attention on theperson you are listening toand clear your mind of other thoughts.

DO clear the clutter. Ignoreeverything going on aroundyou except for the speaker’sface and voice.

DO make eye contact.• When a person does not

make eye contact during aconversation, people tendto think the person isbeing dishonest or has ahidden purpose.

• If you have trouble mak-ing eye contact, focus youreyes somewhere else onthe person’s face—forexample, their nose ormouth. Be careful not tohold eye contact longerthan a few seconds at atime. Looking into some-one’s eyes too long maymake listeners uncomfort-able. After one or two sec-onds, look away and thenlook back at the person.

DO organize your thoughts.Before you start an importantconversation, ask yourself,“What is the main purpose ofthis conversation? What do Ineed to communicate to theother person? What am Ithinking, feeling and want-ing?” You may need to runthings over in your mindbefore you are ready to starttalking. Some people writedown what they want to say,so they do not get nervousand forget something.

DO “check out” the otherperson’s frame of mindand surroundings. Is he orshe busy, rushed or upset? Is the person free totalk? Is it slow in the unit oris the person rushingaround during change ofshift? Ask the person if he orshe is available to talk. Ifnot, you may want to sched-ule an appointment.

DO send clear messages.Make sure your tone of voiceand your body languagesend the same message asyour words.

DO focus on one thing at a time and do not get offtrack. Too many issuesmake it hard to get your realmessage across.

DO talk about your needsand feelings with yourcaregivers (and your fami-ly and friends). Do notassume people know whatyou think or want. Droppinghints or “beating around thebush” in the hope that peo-ple will get the message,usually does not work.

DO talk to people the wayyou would like to be spo-ken to. If you speak politelyto people, they are morelikely to speak that way toyou. They are also more like-ly to listen.

DO ask yourself these twoquestions: “Do I want to win this discussion or do Iwant to communicate some-thing?” “Do I want to beright or do I want mutualunderstanding?”

DON’T try to read theother person’s mind whilethey are talking. Pay atten-tion to what the person issaying instead of trying tofigure out what you think heor she is really feeling.

DON’T start planning yourresponse while the otherperson is still talking. If youare planning what to say, youare not listening.

DON’T argue with every-thing the other personsays. This makes the otherperson feel like you are notlistening to them.

DON’T “rehash” or drag upthe past. Current problemswill not get solved if you are always dwelling on old problems.

DON’T use sarcasm tocover up feelings of hurtand anger. Sarcasm makeslisteners angry and pushesthem away.

DON’T call people names,talk about them in a waythat hurts their feelings orcurse at them.

DON’T change the subjector make jokes when youget bored, anxious oruncomfortable with a topic.

DON’T make threats.Making threats may makeyou feel good because youcan let off steam and it keepsyou from talking about some-thing that upsets you; butmaking threats (even if youdo not mean them) makespeople afraid of you andcould result in your being dis-missed from your clinic.

If you have problemscommunicating with someoneat the clinic, such as yourdoctor, nurse or patient caretechnician, ask to speak toyour social worker. Yoursocial worker is trained incommunication and it is hisor her job to be part of yoursupport system at the clinic.If you are still unhappy, otherways to solve the problemmay be speaking to your facil-ity administrator or Directorof Nursing, contacting yourfacility’s regional representa-tive (if your facility is part of acorporation) or calling yourlocal End Stage Renal Disease(ESRD) Network. (See the arti-cle on page 9 for more infor-mation about the role of theESRD Network in helping toresolve conflicts in dialysisunits.) You can locate yourESRD Network at this Web site: www.esrdnetworks.org

About the AuthorRamiro Valdez, PhD, is thePatient Services Coordinatorfor the End Stage RenalDisease Network of Texas,Inc., in Dallas.

FF


6

Communicating with a healthcare team about one’s own carecan be a challenge. When some-

one else is involved, particularly achild, the challenge becomes morecomplicated. But having strong com-munication between the health careteam, a child and the child’s familycan make a big difference.

Communicating with children

When achild haschronic kidneydisease, thatchild is a veryimportantmember of hisor her healthcare team.Improvingtheir age-

appropriate participation in decisionsabout the treatment of their kidney problems is key in achieving the besthealth outcome. Although communi-cating directly with children can betime consuming, research stronglysupports the importance of direct communication as a means of improving adherence with the treat-ment prescription.

Communicating with healthcare workers

Many parents of children with kid-ney problems admit that it is stressfulto take care of all the things that needto be done for their ill child along withother family needs and job responsibil-ities. Health care providers are alsovery busy trying to juggle theirpatients’ needs along with their other professional and personal responsibili-ties. Everyone’s time is valuable, andthese days there never seems to beenough time in a day.

You have the right to expect themembers of your child’s health careteam to be patient and clear whencommunicating with both you andyour child. If all three parts of thecommunication triangle are making aneffort, your child will receive the bestpossible care.

Better Communication = Better Health:Improving Children’s Outcome with Good Communication

By Arlene C. Gerson, PhD, and Barbara Fivush, MD

These are some techniques com-monly used to relax and managestress:• breathing exercises • progressive • walking• meditation • listening to• weight training• prayer • visualization• reading a book • talking to a • laughter• vacation

There is not any rea-son to think that onestress management tech-

nique is better than anyother. It is a matter of finding

out which one works best foryou. Many people enjoy using

physical exercise as a way to give stressan “exit” from their minds and bodies.While exercising, your heart rate andblood pressure rise and fall in relationto how hard you are working. This con-trolled rise and fall in workload mayhelp to “drain out” stress, allowing us toclear our minds, or think of better waysto respond to the stress in our lives.Also, increasing muscle activity andblood circulation can help counteractthe negative effects of stress mentionedearlier, such as rise in blood sugar andincrease in blood clotting factor.

The ways you choose to lower yourstress may change from day to day. Oneday you might be in the mood to medi-tate and another day you might feel liketaking a long walk. You should try dif-ferent methods of stress management,but as always, be sure to talk with yourhealth care team to discuss which onesmight be best for you.

Acknowledgements: Specialthanks to Robert Scales, PhD andSusan Weitkunat, RD of theUniversity of New Mexico for theircontributions regarding educationon stress management.

FF

Why Stress About Stress?continued from page 4

USEFUL TIPS:1. Look children in their eyes when

talking about important topicsand pay attention to what theysay, what they do not talk about and their non-verbal communication, such as theexpressions on their faces.

2. Encourage children to ask questions.

3. Answer children’s questions ashonestly as possible usingwords they can understand.

4. Use diagrams, graphs, chartsand pictures as often as possible.

5. Allow children to express bothpositive and negative feelingsregarding their life and illness.

USEFUL TIPS:1. Before a health care visit or

phone call, list concerns in order of importance and presentthe most important concern first so that there will be enough time to take care of themain problem.

2. When you go to a medicalappointment or talk to a healthcare worker on the phone, bringspecific information about theproblem your child is having and what you have done to try to resolve it. Also, bring a list ofyour child’s current medicationsand medication dosages to eachhealth care visit.

3. Speak with your doctor andother health care providersabout the best way to contactthem about any new medicalconcerns. For example, somehealth care professionals havebegun to prefer to correspondwith parents through e-mail; other providers prefer more tra-ditional forms of communica-tion, such as the telephone.

4. If you have difficulty under-standing treatment recommen-dations, ask for further explana-tion. There is no such thing as a dumb question.

5. When possible, leave other sib-lings at home and turn off yourmobile telephone and beeperduring appointments.

FF

About the AuthorArlene C. Gerson, PhD, is a pediatric behavioral psychologist at the Johns HopkinsHospital in Baltimore, Maryland, and an Assistant Professor of Pediatrics in theDivision of Pediatric Nephrology at the Johns Hopkins University School of Medicine.

relaxation

music

friend

7


WHAT IS THE HISTORY OF SOCIALWORK IN KIDNEY DISEASE?

Medicare has paid fordialysis and kidney trans-plants since 1973. Rules fordialysis and transplant pro-grams since 1976 say thatclinics need to have doctors,nurses, dietitians and socialworkers to help patients livewell. The social workersmust have master’s degreesin social work. They mustalso have counseling skills.Their role has always beento find out what people ondialysis or who are trans-planted need emotionally,socially, financially andvocationally. They strive,through counseling andsupport, to help you over-come hardships that kidneydisease can bring.

Treatment for kidneyfailure has changed since1976. In 1976, transplantrecipients stayed in the hos-pital for weeks or months.Many people did dialysis athome. Most dialysis clinicswere non-profit, hospital-based and staffed with RNs.Dialysis treatments wereoften five hours or longer.Social workers and dieti-tians had more time to workvery closely with patientsand their families.

Today, transplant recipi-ents are in the hospital fordays, not weeks. Most peo-ple do dialysis at a clinicoutside of a hospital andrun by a for-profit corpora-tion with more techniciansthan RNs. Most dialysistreatments last four hoursor less. Many dietitians andsocial workers work in morethan one clinic. Some travela long way to see individualswho are on dialysis. Thoughpeople on dialysis and whohave transplants today havejust as many hardships asin the past, most social

workers have much lesstime to spend with themand their families.

WHAT DOES A SOCIAL WORKER DO?

Soon after you start dial-ysis or when you are beingevaluated for a transplant,you will meet a social work-er. He or she will ask youquestions about your healthand psychological back-ground, education, workhistory, support system,how your health affects yourlife and goals and concernsthat you or your family mayhave. Beginning with thismeeting, your social workerwill work to:• Keep what you share with

them in confidence• Work with fellow health

care providers to improveyour care

• Offer you and your familyemotional support andcounseling

• Empower you to solvemany of your own prob-lems. For example, he orshe may give you infor-mation about communityresources to help you getthe services you need.

WHAT DO PEOPLE ON DIALYSIS ORWHO HAVE A TRANSPLANT SAYABOUT THE NEED FOR SOCIALWORKERS?

About 10 years ago in anational survey, people ondialysis they said they want-ed social workers to helpwith a variety of services.They thought social workerscould help them cope withthe burden of kidney dis-ease, return to activities,understand treatment, dealwith concerns about sexual-ity and problems or com-plaints about treatment.Those who responded alsowanted social workers tohelp with insurance ques-tions and payments fortreatment, transportation,

home care, equipment andvacation and travel. Almost91 percent of them said theyneeded social workers forthese needs. Yet 40 percentsaid they did not haveaccess to a social workerwhen they needed one.

HOW CAN YOU GET TO SEE ASOCIAL WORKER WHEN YOU NEED ONE?

1. Ask your social worker ifyou can schedule a timeto meet. Tell your socialworker what topics youwant to discuss. Thisway, he or she can pre-pare to advise you andgive you his or her fullattention.

2. Tell the manager of yourdialysis clinic or trans-plant program that hav-ing ready access to asocial worker is impor-tant to you. Sharing thisinformation with unitstaff will help to ensurethat social work serviceswill continue tobe made avail-able to you andothers who areon dialysis orhave a kidneytransplant.

3. If your socialworker is notthere when youneed him or herand does notanswer yourmessages, tellthe clinic man-ager. Call orwrite a letter toyour local ESRD(End StageRenal Disease)Network and/orthose who gov-ern your dialy-sis or transplantprogram. Askto see your facil-ity grievancepolicy. Voiceyour concern.

Tell your clinic managerwhat you need and whatyour social worker can do(or has done) to help you. Ifyou do, he or she may giveyour social worker moretime to do what he or shewas trained to do and wantsto do—help you live a betterlife with kidney disease.

About the AuthorBeth Witten has been anephrology social workersince 1978 and is a pastchairperson of the NationalKidney Foundation Councilof Nephrology SocialWorkers. She is a consultantwith the Life Options Rehab-ilitation Program and theMissouri Kidney ProgramPatient Education Program.

1 Siegal BR, Witten B, Lundin AP.Patient access and expecta-tions of nephrology socialworkers. Nephrol NewsIssues. 8(4)32-33, 40, 1994.

Social Work Services and How to Connect With Your Social Worker

By Beth Witten, MSW, ACSW, LSCSW

FF

JUMPSTART

H O P E .There are lots of reasons to donate a car

to the National Kidney Foundation. A possible tax deduction* is only one.

Call 1-800-488-CARSMake Your Car a Kidney Car.

Cars That Save Lives.

*Consult your tax advisor for details.


8

Some days it seems asif a lot of the people ina dialysis clinic are

simply not getting along witheach other, or are thinkingup ways to make each othercrazy. This description is notjust about people on dialysisor the dialysis staff, buteveryone, including familiesand other visitors.

The TransPacific RenalNetwork in northernCalifornia is one of 18 EndStage Renal Disease (ESRD)Networks under contract tothe Centers for Medicare &Medicaid Services (CMS) toprovide leadership and guid-ance to dialysis and trans-plant facilities. We get morecalls from staff and peopleon dialysis complaining about behaviors on bothsides of the dialysis chair

than we can handle. Thewords callers use to tell usabout the problems some-times do not give a real pic-ture about what is happen-ing. Yet the importance ofcorrect reporting is crucialwhen attempting to developsolutions for the problems.

A dialysis facility is like asmall town where everybodyknows everybody, everybodysees what is going on andeverybody has an opinion. Asuccessful small towndepends on respect amongthe inhabitants, good andfair rules and laws, law-abiding behavior by all citi-zens and having the lawsapplied equally to everybody.

What goes wrong in thesmall town of the dialysiscenter is that individuals on

dialysis and the staff are notalways clear on the rules,may not apply the rules orhave forgotten the rules ofcorrect behavior. Becausepeople come to dialysistreatment three times aweek for years, these peopleand staff may become toocasual with each other, orthink that the rules do notapply to them.

Our Network broughttogether people on dialysisand dialysis professionals tocome up with ideas on howto describe and deal with theincreasing numbers of nega-tive situations that were

reported to us. We quicklyunderstood that definitionsand rules about behaviorsshould be applied to bothstaff and people on dialysis.

Our first task was tolook at the words that aremost often used to describenegative behaviors to allowus to agree on descriptionsthat could be easily under-stood. Using the wrongwords to describe behaviormay result in harmful“labels,” making it difficultfor an individual on dialysisto travel or transfer toanother facility. Below aresome examples of the behav-iors we described:

WORDSCanHelp By Arlene Sukolsky, Executive Director

VERBAL ABUSE:Someone on

dialysis or a staff member who intentionally uses language to intimidate, frighten or cause discomfort or emotional distress.

Wordscanhelpwordscanhurt WordscanhelpwordscanhurtWordscanhelp

Examples:Name-calling, shouting,

use of obscenities and useof disparaging remarks.

THREATS:Behaviors or

actions by individ-uals on dialysis or staff that com-municate intent to inflict harm or the fear of harm on others.

Examples: Verbal statements,physical actions or gestures thatconvey intent to commit harm andreferences to possession or accessto weapons with the intent tointimidate.

FAILURE TO CONFORM:(Replaces the

phrase noncompliantbehavior) Failure of a competent adultperson on dialysisand/or a staff member toadhere to thepolicies andprocedures of a facility.

Examples of People onDialysis: Interference with thetreatment of others who are ondialysis, not cooperating withreimbursement requirementsand unreasonable refusal to betreated by a particular staffmember.

Staff Examples: Unreasonablerefusal to care for a particular individ-ual on dialysis or to enforce policiesand procedures and unauthorizedmanipulation or change of a pre-scribed treatment or physician’s order.

ATTENTION-SEEKING BEHAVIOR:Someone on

dialysis or a staffmember who usesnegative behaviorsor uses the expression of negative emotions to get attention.

Examples of People onDialysis: Showing up late or earlyand demanding dialysis, demean-ing remarks about the staff orclinic to others who are on dialy-sis and refusal to let staff takevital signs.

Staff Examples:Failure to comply withEnglish-only policies,inappropriate words or behavior.

9


and WORDSCanHurt TransPacific Renal Network

We then grouped all ofour definitions into three“catch-all” categories: (1)those by people on dialysisthat result in placing theirown health, safety and well-being at risk; (2) those bypeople on dialysis and staffthat put the safe and effi-cient operations of the facil-ity at risk and (3) those thatplace the health, safety orwell being of others at risk.It is easy to see how thesecategories can help staff andindividuals on dialysis betterunderstand how a certainbehavior might affect others,as well as how the responsesof the facilities might vary.The response of the dialysisclinic, for example, will bevery different to people whochoose to make bad personalhealth decisions that canharm themselves, versus

those who pose a threat toothers. This is where wordsreally make a difference.

A second goal of thegroup was to plan a modelsafety program for a dial-ysis clinic. We want-ed to set up anenvironmentfree of hazardsthat couldcause physicalor mentalharm and/ordeath, stress-ing that vio-lence andintimidationwill not betolerated.

A “zero tolerance” policyshould not be used to singleout individuals on dialysis orstaff, but to keep a violence-free environment. It must be

applied equally to all whodialyze and to employees andaddress behaviors or actionsthat are not allowed ina dialysis facility.

The dialy-sis facilityhas a respon-sibility to tellpeople whodialyze aboutits rules andexpectations.This “treat-ment agree-ment” or“town rules,”should clear-ly describe

what happens if either partyhas violated the rules.

The next step for ourNetwork is to create a

teaching program for dialysisfacilities. We also plan tomake our report and sugges-tions widely available in thedialysis community.

If we hold ourselves,those on dialysis, and dialysisstaff to the same reasonableand fair standards of behav-ior, the small town that isyour dialysis facility and all ofits citizens, will thrive.

The opinions expressed in thisarticle are those of the author whoassumes full responsibility for theideas presented. The work was per-formed under Contract 500-00-NW17sponsored by the Centers for Medicareand Medicaid Services.

About the AuthorArlene Sukolsky is theExecutive Director of theTransPacific Renal Network,located in San Rafael,California.

Wordscanhelpwordscanhurt Wordscanhelpwordscanhurt Wordscanhelp

What’s an ESRD Network, Anyway?By Roberta Bacchelder, MA, Patient Services Manager

ESRD Network of New England (Network 1)

Whether you arenew to dialysis orsomeone who has

been on dialysis for a while,you may have heard aboutESRD (End Stage RenalDisease) Networks . . . butthe chances are you havenever heard of ESRDNetworks. Officially ourname under the Centers forMedicare and MedicaidServices (CMS) is ESRDNetwork Organizations.When referring to us, folksoften say “Network,” “TheNetwork” or just “ESRD.”But for those who know us,we are correctly referred toas: ESRD Network … fol-lowed by a number (1through 18). The numbersare assigned to the 18regional ESRD Networksaround the country servingclusters of states, from Eastto West.

When Medicare startedpaying for dialysis treat-ments back in 1973 underthe ESRD program, theESRD Networks wereformed to do four main jobsfor Medicare: collect andprocess “2728s,” or MedicalEvidence Reports, (that isthe form that records yourlab values, which you wereasked to sign when youwent on dialysis), assurequality of dialysis care, pro-vide educational resourcesregarding Medicare’s role inkidney replacement thera-pies, and respond to com-plaints from the kidneycommunity. The Networksemploy staff, which mayinclude nurses and socialworkers, to do all of thesejobs. Medicare establishedand directs our work, withquality of care for people ondialysis and with kidney

transplants as the centralpurpose of ESRD Networks.As a current example ofwhat ESRD Networks do,please see the article in thispublication regarding nega-tive situations in the dialy-sis unit (“Words Can Help,”page 8).

If you are on dialysis orare a kidney transplantrecipient and you have aproblem of any sort youshould go to the staffmembers in your facilityfirst for help in resolving it.If they cannot assist withyour need, you can call the ESRD Network closestto you.

Is that the only reasonto contact your ESRDNetwork? Not necessarily.You can also contact theNetwork if:

• you need informationabout kidney disease

• you need referral for aparticular problemrelated to health care

If you want or need tocontact your ESRDNetwork, your dialysis ortransplant clinic can giveyou information on how todo so, or you can go towww.esrdnetoworks.organd click on the statewhere you live, or call 804-794-2586 for the telephone number of theESRD Network in yourregion.

The opinions expressed in thisarticle are those of the author whoassumes full responsibility for theideas presented. The work was per-formed under Contract 500-00-NW17 sponsored by the Centers forMedicare and Medicaid Services.

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10

Hospitals that performkidney transplantsurgery have trans-

plant teams made up of sur-geons, nurse coordinators,social workers, financialcounselors and nephrolo-gists (kidney specialists).They each specialize intransplantation and are agood group of people toknow. Learn to contactthem. They can answerquestions you have aboutkidney transplantation.

If you have kidney fail-ure and are on dialysis, youhave most likely asked thisquestion. Trans-plantation should bediscussed early inthe diagnosis of kid-ney disease.

Not everyone who haschronic kidney disease(CKD) is a transplant candi-date. Generally, people withCKD have to meet certaincriteria. The ideal transplantcandidate is less that 60years old and does not haveheart disease, severe compli-cations from diabetes orother serious health risks.Also, transplant candidatesmust be compliant with diet,doctors’ appointments, dial-ysis and medications. Theseare just general “qualifica-tions.” You should talk withyour doctor and preferably atransplant nurse coordina-tor about whether you canpursue a kidney transplant.

If you are interested infinding out if you are eligiblefor a kidney transplant, besure to discuss it with yournephrologist. If you still

want more information, askyour nephrologist or dialysisnurse about the nearesttransplant hospital. Trans-plant teams work with hun-dreds of transplant candi-dates and recipients and willgive you information.

Ask to talkwith thetransplantnurse coor-

dinator. The coordinator willmeet with you to discussyour medical condition andexplain the evaluationprocess. He or she can also connect you with other people who have hadkidney transplants. Manytransplant centers have support groups that meetand welcome new peopleseeking information. Thelocal National KidneyFoundation affiliates arealso good resources for people with CKD seekinginformation about kidneytransplantation.

Kidney transplantationcan be done before startingdialysis. This is called “pre-emptive transplantation,”and usually requires a livingdonor, because the waitinglist for a non-living donorcan take several years. You

can also be put on thetransplant waiting list beforeyou start dialysis. Talk withyour nephrologist aboutthis. When you finish yourevaluation and are placedon the waiting list, youcould be called any time.

To be on the list youmust complete an extensivemedical and psychosocialevaluation by the transplantteam. Your nephrologist willsend you to the transplantcenter for the evaluation.Each member of the trans-plant team will meet withyou. They will then meet asa group to review your case,decide if you are a good can-didate for transplantationand then inform you andyour nephrologist of theirdecision.

Keep asking questions.Call the transplant center asoften as you want to be sureyou understand. If you arestill not satisfied, you cansee the transplant team atanother transplant hospital.Be sure that the transplantcenter is on your insuranceplan. If you decide to go toanother center, you will beallowed to take your recordswith you so that all of thetests you have already haddo not have to be repeated.Remember, the transplantteam is working to make thebest recommendation foryou. If transplantation is toorisky for you, they will tellyou and you need to fullyunderstand this.

Once you finish yourtesting and the transplantteam has reviewed yourcase, the transplant coordi-nator will notify you anddraw lab work so that youare on the list. You will beinstructed to stay availableat all times so you do notmiss a call that a kidney isavailable for you. You maybe given a pager so you canbe contacted when you areaway from your phone. It isimportant that you stay intouch with the transplantteam and have your blooddrawn and sent to the localtransplant lab monthly. Ifyou do not have this bloodsent on time, you will beineligible that month if akidney comes up for you.

Communication alsoincludes letting the trans-plant team know of anychanges in your health, or ifyou are going to be out oftown. If you are leavingtown, you should let themknow how you can be con-tacted and if you will beavailable if a kidneybecomes available. You alsohave the option of comingoff the list temporarily, and then being activatedagain later.

You need to be free fromany infections or most otherillness to get a kidney. If youget a cold, flu or are in thehospital, it is important thatthe transplant team knowthis. Call the coordinatorand let him or her knowwhat is going on. You will

Communication with the Transplant Team:By Linda Harte, RN

How do I know if Ican get a kidney

transplant?

Who do I talk to if Iwant a kidney?

Do I have to waituntil I start dialysisto get a transplant?

How do I get on thetransplant list?

What if I do not agreewith or understand

their decision?

How do I know if I am on the trans-

plant list?

What if I am on thelist and get sick?

continued on next page

The NKF booklet WaitingFor a Transplant discussesthe issues facing trans-plant candidates. For acopy, call 800-622-9010.

11


probably be listed as tem-porarily inactive on the list.As soon as you are overyour illness, whoever treatedyou should send yourrecords to the transplantteam to review. If they feel itis safe to give you a trans-plant at that time, you willbe placed back on the activelist. You will not lose yourplace on the list.

This depends a lot onhow far you live from thetransplant center. Eachtransplant center is differ-ent, but they usually like tofollow you very closely for

several weeksafter your trans-plant surgery.When your kid-ney function andthe medicationsyou take to pre-vent rejection arestable, you maywant to go backto the kidneydoctor who tookcare of youbefore yourtransplant. Of course, if youlive close to the transplantcenter, you can continue tobe followed there.

The transplant centerwill always want to keeptrack of your progress andwill need records from yourdoctor regularly. There are

many med-icines thatinterferewith youranti-rejec-tion medi-cine. Anytime yousee a doc-tor, for anyreason,who is notfamiliar

with kidney disease andtransplantation, do not takeany medication without theokay of the transplant cen-ter. Your anti-rejection med-cines can react negatively

with other medicines andmany doctors are not famil-iar with this. Also, if youneed surgery or are inanother hospital for any rea-son, you or your doctormust let your transplantteam know.

Communication with thetransplant team is vital,both before and after thetransplant. You are the mostimportant member of theteam. It is your responsibili-ty to ask questions and toinform your transplant teamof any changes in yourhealth. Communication isthe key to ensure consistenthealth care that is the bestfor you.

Who Do I Ask, What Do I Ask, When Do I Ask?

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Who takes care of meafter the transplant?

The transAction Council www.kidney.org/recips/transaction/index.cfm Official Web site for the NKF’s transAction Council, a group dedicated to the needs and concerns of all individuals who have received or await a transplant of any type. Includes information about becoming a member, which is free.

United Network for www.unos.org UNOS administers the country’s Organ ProcurementOrgan Sharing and Transplant Network. The Web site contains searchable

data about every transplant in the U.S., as well as information about the transplant waiting lists and the matching process.

Home for Living www.kidney.org/recips/livingdonors The NKF has developed a new online resource for living Donors Online donors that includes answers to frequently asked questions,

message boards and the opportunity to chat with living donors or potential living donors.

Coalition on Donation www.shareyourlife.org This is an alliance of national organizations from throughout the U.S. which are dedicated to inspiring all people to become organ and tissue donors.

National Transplant www.transplantfund.org A resource that provides fundraising ideas and guidance Assistance Fund for patients raising money for uninsured medically related

expenses, $1,000 challenge grants for eligible patients and educational information regarding organ/tissue donors.

Department of Health www.organdonor.gov The government’s Web site on transplantation,and Human Services, focused on encouraging organ donation.Division of Transplantation

The U.S. Transplant www.transplantgames.org The largest sports event in the world for people with Games life-saving organ transplants. The Olympic-style event is

held every two years, celebrating the second chance at life for thousands of athletes.

Web Resources on Transplantation

Transplant Chronicles is the free NKF newslet-ter for transplant recipi-ents. To subscribe, call 800-622-9010.


12

There is a teambehind everysingle person

who receives dialysis. Itis your team! And youhave the right to callthem into action anytime you need. It is thedietitian’s function onthat team to give youinformation about thefood you eat, how it canaffect you and help youto chart a pathwaytoward feeling the bestyou can.

The dietitian usuallyreviews your monthlylab work. We have allheard the phrase,“Knowledge is power.”Well, we bring youknowledge of how thattasty morsel thatyou ate andenjoyed has affect-ed your lab resultsand how you feel.The dietitian looksat those labresults andsuggests foodchoices thatmight be bothavailable andappealing toyou, as well as good foryou. This gives you thepower to make healthyfood choices. There is noargument about theimportance of and need for an adequate,well-balanced daily meal plan.

Most of you areaware of the need tomonitor and control theeating of certain nutri-ents. When you arediagnosed with kidneydisease, it is very impor-tant to be aware of thefoods you eat every day.If you were never giveninformation about foodsand nutrients, such aspotassium, phosphorousand salt, and how they

affect people with chron-ic kidney disease, now isthe time to ask for it.This information is yourkey to that gatewaywhich opens to the pathof feeling good. It willgive you an idea of howmuch of a certain foodand/or food group youcan eat.

Your dietitian hasinformation about foodsthat might not be on thetypical menu plan. Byfinding out in advanceabout foods you may beoffered at a specialevent, such as a wed-ding, anniversary cele-bration or Bar Mitzvah,you can empower your-self to enjoy the occasion

to its fullest extent. Aphilosophy shared bymany dietitians is,“There are no foods thatshould not be con-sumed, only foods thatshould be consumed inmoderation.”

Part of the nutrition-al education processincludes learning how toread a label. By law,food manufacturersmust reveal the ingredi-ents of a food item andbreak down the nutri-ents per serving.However, some of thelabeling on foods can beconfusing. Recently, anindividual in the dialysisunit pointed out twogood examples of con-

fusing food labels. Thefirst case was a labelthat said “low sodiumsoy sauce.” It did notspecify how much sodi-um—it just said “low.”This individual thoughtthat because it was low,it could be used safely.After further examina-tion, the dietitian discov-ered that this particularbrand had lowered thesodium to seven gramsper serving, which is stillvery high. Another inci-dent occurred with alabel that said “NOSUGAR ADDED” in bigbroad letters. Of course,the individual thoughtthat she could use itand could not under-stand why her blood

sugars were alwaysrunning greater than400. However, justbecause the manufac-turer did not add moresugar did not meanthat there was nosugar in the product.

Your dietitian cananswer the questionsyou have about labels

or about food in general.Try not to think of thedietitian as someonewho tells you what youcannot eat. Think of thedietitian as the personwho tells you what youcan eat, and how youcan feel your best.

EAT TO LIVE!

About the AuthorWilliam A. Craig, MS, RD,CDN, is employed as arenal nutritionist at theAvram Center for KidneyDisease in Brooklyn, NY.He has been a clinicianwithin the field of renalnutrition for the last 14years, and in the field of nutrition for the last 30 years. His health care career began as a pharmacist.

FF

Helping to Achieve Well-BeingBy William A. Craig, MS, RD, CDN A Presumed Lack

of ControlBy Dale Ester

One problem I often hear about, from those on dialysis

and from those who care forthem, is related to the question of whyso many people with chronic kidney dis-ease (CKD) feel a lack of control when itcomes to their health care. Keeping anopen mind will help us as we examinereasons why this feeling might occur forso many individuals with CKD.

Although dialysis care has changedfrom a mere decade ago, have we, aspatients, become more successful intalking with doctors about the treatmentof kidney disease? Have we become bet-ter at understanding the medical condi-tions by educating ourselves through theInternet and other resources? Do we stillbelieve that “Doctor always knows best”?

In my opinion, people who partnerwith their health care team do betterthan those who choose to “go it alone.”Learning how to use language to educateyourself will give you the power you needto be an effective communicator with themembers of your health care team.Communication through the use ofappropriate language skills will help staffmembers understand your thoughts onhow you are feeling. Asking questionsabout topics you do not understand letsthe team know you want to be an impor-tant part of improving your health.Remember that the way in which youconvey ideas and perceptions will deter-mine the kind of relationship you havewith others in the dialysis unit.

You must place trust in professionalswho say, “I know best.” They, too, mustplace the same trust in you too. Workingtogether should not be difficult nor aproblem.

Finally, control your attitude.Attitude is a personal choice of how youreact to things around you. If your atti-tude is sour, try thinking cheerful ideasto help yourself feel more up. Do not pre-tend the face scowling back at you fromthe mirror is going to hide itself whenyou go outside to greet the world. If yousmile, the world will smile back at you! Ifyou grumble, growl and bicker, well, youwill at least know what to expect fromthose with whom you come in contact.Your attitude influences—everyone including yourself!

By finding out inadvance what will beserved at specialevents you can enjoyyourself more.

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13


Communication and AdvocacyBy Dolph Chianchiano, JD, MPA

We know that healthcare workers maynot be able to

address our needs if we failto communicate those needsto them. Similarly, we mustmake our needs clear to gov-ernment decision makerswhen we expect their help.Communicating with govern-ment leaders to convincethem about a certain courseof action is known as advo-cacy. Members of Congressand state legislatures haveto hear, first hand, about“true to life” experiences ofpeople with kidney diseaseso that they can fully under-stand the need to supportlife saving therapies that isso obvious to us. Unfortun-ately, too few people withkidney disease and membersof their families engage inthat kind of advocacy withgovernment leaders on aregular basis. Fortunately,we can learn from the success of advocacy cam-paigns by people who have other illnesses andbuild upon the recent advocacy efforts by the kidney community.

Advocacy does not nec-essarily require a lot of effortor special training. Phonecalls and letters to legisla-tors are the cornerstone ofadvocacy. For those who arewilling to go to the nextstep, speaking up at townhall meetings or testifying atpublic hearings can have avery powerful impact.Another way to get theattention of government offi-cials is by contactingreporters or writing articlesfor local newspapers.

Advocacy letters do nothave to be fancy. In fact,they are most effective whenthey are hand-written. TheNational Kidney Foundationmight provide sample lettersthat individuals or families

could simply copy, sign andmail but, frankly, these arenot as effective as lettersthat state detailed informa-tion about specific cases.For example, the UnitedStates Forest Service isrejecting public commentson proposed regulationswhen the comments comeon preprinted postal cards.The agency is also barringother “duplicative materials,”like form letters, from con-sideration.

All that many govern-ment decision makers knowabout dialysis and trans-plantation is that they arerare and expensive treat-ments. To dispel misconcep-tions, the AmericanNephrology NursesAssociation (ANNA) startedEnd Stage Renal Disease(ESRD) Education Day onAugust15, 2003. ESRDEducation Day was designedto encourage members ofCongress and state legisla-tures, and their staff assis-tants, to tour dialysis clin-ics. In the three weeks afterAugust 15, 66 dialysis facili-ties hosted such visits. Intotal, 101 government offi-cials participated in thesevisits, including 19 membersof Congress, 22 state legisla-tors and 49 legislative assis-tants. Those participating inthese tours not only had theopportunity to observe dialy-sis treatments but they alsogot the chance to meet peo-ple who are on dialysis.

ESRD Education Day was aremarkable accomplishmentthat should serve as a modelfor future advocacy efforts.

The kidney communityhas additional success sto-ries. Clamor for enhancedbenefits from transplantrecipients resulted in theextension of Medicare cover-age for immunosuppressivedrugs that was enacted in2000. As part of the advo-cacy effort, one person with

chronic kidney dis-ease wrote an

article thatappeared inNewsweekmagazine,explainingthat hewould liketo go backto work butneeded tomaintaindisabilitystatus so

that he could continue to beeligible for drugs under theMedicaid program. Anothertransplant recipient agreedto be interviewed by the WallStreet Journal about theextreme methods to obtainimmunosuppressive drugsto which people with trans-

plants may resort afterMedicare coverage ceases.

Hundreds of people whoreceive dialysis treatment,alarmed by a 1997 change inMedicare reimbursement foranemia therapy, wrote totheir Congressional represen-tatives. They were concernedthat, as a result of the lowerreimbursement for anemiatreatment, many dialysisproviders world lower dosesof anemia medicine (erythro-poietin). This direct advocacyvery likely contributed to thegovernment’s decision toreverse that policy.

If you want informationabout becoming a healthcare advocate, you can view“Public Policy Tips and Info”that is part of theGovernment Relations pageon the Web site of theNational Kidney Foundation,www.kidney.org or call theNKF’s Washington, DC,office at 1-800-889-9559.

About the AuthorDolph Chianchiano, JD, MPA,is the National KidneyFoundation’s Vice Presidentof Health Policy andResearch.

JoinTo find out about the many services and

activities offered in your community or

to become a member of the Patient

and Family Council, call the National

Kidney Foundation at

1-800-622-9010 or visit us at

www.kidney.org☞ MEMBERSHIP IS FREE

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Letters to your representa-tives in Congress are most

effective when they are hand-written.


14

After you visit yourdoctor, do you feel better or worse? Are

you prepared for the visit? Isyour doctor prepared for thevisit? How can you make themost of each doctor visit?Here are some suggestionsfor what you can thinkabout before walking intothe office or clinic.

The first thing to thinkabout is the type of visitplanned. Is this a routinefollow-up visit, or is thisappointment to deal with anew or complicated set ofproblems, such as symp-toms you have not dis-cussed before or a reactionto a new medication? Youshould let the clinic staffknow which it is and what

questions you have whenyou make your clinicappointment. Routine clinicappointments usually meanthat a checklist of your rou-tine problems will bereviewed and a generalexamination will be done. Ifyou have a specific problemor complaint, a more direct-ed review and examinationwill be done. If you have anumber of complicatedproblems to deal with, makesure your appointment islong enough to deal with allof them. Most appointmentsfor routine examinations are 10–15 minutes long. Thismight not be enough timefor complicated problems.

Next, think about whatinformation you will want tohave with you to help yourdoctor make diagnoses andmake treatment decisions.Make a list of your medi-cines and the times you takethem. Include all over-the-counter non-prescription

medications, herbal andvitamin supplements, homeremedies and any new med-ications prescribed byanother doctor. Make a listof your allergies and drugsensitivities. Give your doc-tor a copy of these lists tokeep in your record andkeep a copy for yourself.This will save a lot of timeand confusion overyour medicine. Makinga list of the medicinesyou are taking will alsogive you a chance toreview all of your medicationand supplements. If youkeep track of any personalhealth information (bloodpressure recordings, bloodsugar records, insulinrecords, lab work from otherhealth care providers, dates

and times of any new symp-toms), make sure to bringyour records with you.

If you have received caresomewhere else or fromsomeone else since your lastvisit, make sure your physi-cian has a copy of thoserecords and that they makeit to your chart. Records arenot automatically sent fromhospital to clinic chartunless there is a specificrequest to do so by you oryour doctor. Recent privacyrequirements of federal lawmake this transfer ofrecords more difficult forhealth care providers,unless approved by you.

It is also important toupdate any family historyyour doctor may need. Forexample, if one of your closerelatives has a new illnessand you have not previouslyshared this with your doctor,it’s a good idea to mention it. Recent travel history can

be important if you have any symptoms of infection or fever.

All visits with your doc-tor should be absolutelyconfidential. If your doctor’soffice or clinic is part of auniversity or teaching hospi-

tal, a student, intern or resi-dent may visit patients withyour doctors. This is howlearning to care for patientstakes place, but it does notchange the privacy rules. Ifyou feel you need privacy foryour visit, please be surethe clinic staff are aware ofthis and let the doctorknow. All offices shouldhave a privacy statement,which should be given toyou with your first visit tothe clinic

At the end of the visit,be sure all of your needshave been addressed andyour questions answered. Ifthey have not, please let yourdoctor know. If they can betaken care of in the timeavailable, your physician maychoose to do so. Sometimesanother appointment may beneeded. Your doctor mayneed to get more information(e.g., lab work or records) toanswer certain questions.

Answers to complicatedmedical problems mayrequire some research bythe doctor. Consultationwith other doctors, review ofarticles in medical journalsor simply further time mightbe needed to review a casein order to make a good rec-ommendation for care.Unless the problem is anemergency, taking some

time to watch the course of anew symptom or complaint isoften a better approach thanjumping to conclusions andrecommending the wrongtreatment.

Obviously, there aremany things to think aboutwith any trip to the doctor’soffice, but if you considerthe above recommendations,most visits with your physi-cian should be pleasant andhelpful. I find that individu-als who take an active rolein their own medical caremake me a very good doctor.I learn from every one ofthem.

About the AuthorLeslie Spry, MD, practicesconsultative nephrology andis the medical director of theDialysis Center of Lincoln inLincoln, Nebraska. Dr. Spryis an active member of thePublic Policy Committee atthe National KidneyFoundation.

Talking to My DoctorBy Leslie Spry, MD

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“If you have received care somewhere else or from someone else since your

last visit, make sure your physician has a copy of those records and

that they make it to your chart.”

All visits with your

doctor should be abso-

lutely confidential.

15


Happy ValentineBy Ralph Mobley

I have realized through the years that there are all types of love—

for family and friends, lover and spouse, and then you.

Your compassion and kindness have to come from up above.

Your treatment of me has been tried, tested and found true.

Your dialysis sessions have given me hope and made me strong.

Your kindness and caring has made me believeThat here in this Center I do belongAnd with your care that I can achieve.Your smiling faces always put me

at ease.When a problem arises, it is taken care

of right thenAnd you continue to smile, even when

I tease.Your strong constitutions never bend.I can’t imagine getting a treatment

any other place.I simply perish the thought.Without you, I couldn’t run this raceFor this battle I have long foughtAnd I am winning and I owe that to you,The staff at this great Center.You have turned my gray skies totally blueSo life, once again, I may enter.The mere thought of you all brings a tear

to my eye.You save my life three times a weekAnd I know on you, staff, I can always relyBecause your professionalism will never reach

its peak,It just continues to get better and better each

time I am there.I just feel so safe and secure, it astounds me.All the nurses have such zest and flairI love having all of them around me.The entire staff welcomed me with open armsAnd I think I appreciated that the most.The doctors just bowled me over with their charms.When I speak of this Center, I just have to boastThe kind of love I feel for this place can’t be seen

on any chart.It is overflowing with gratitude and coming straight

from the bottom of my heart.

Ralph Mobley of Queens, New York, wrote thisValentine’s Day poem for the staff at his dialysis unit.

Friends in DialysisBy Rosa Whittington

Here at the dialysis center I have found friends left and right

And when there are times I want to give up the fightAnd all I can do is cry in the nightWhen the next day back to the center I goI see all my new friends—what a wonderful sight

Here at the center everyone is the sameAnd they know how to help you get through

the painWho would ever have thought this would happen

to meTo find so many friends in one place,

you see

They are so kind and wonderful to allAnd when you are hurting and almost

fallThey are there to pick you up, sit you

downAnd tell you there is no use to sit and

frown

They tell you to hang in there and live day by day

And things will get better along the wayThey are very sincere in what they sayAnd tell me all that is left is to pray

You have in the office when you come inJudy with a smile to let you know she is your friendYou have Joyce, who is the dietitianShe is there to tell you about your nutritionThen there is John who is the social worker to help

with financial needsAnd anything else he can do, you see

The caregivers who work in the backThey are there to keep you on trackThey hook you up to the machines to save your lifeThey are the best and so very niceThere are too many names to mention hereBut I hold each and every one so very dear

Here is hoping I live a long timeWith my friends here at the center; that suits

me just fineHere is to thank each and every oneAnd hope we will always be friends ‘til my life

is done

Rosa Whittington wrote this poem when she began dialysis in January 2002. She lives in Clearwater, Florida.

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The poems on pages 15 and 16 were specially selected to highlight posi-tive relationships in the dialysis unit for this issue on communication.


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The Dialysis NurseBy Gregory A. Christmas

For so many years, I have been so blessedTo be able to travel, from east to west,

To a place that I can not explain.To a place that sometimes I even felt pain,

To have my health returned to meBy those who care so passionately.

The ones I speak of have hearts of gold,While doing their job, your hands they’ll hold.They wipe your head, hands and arm,And with a cool towel, they show their charm.They bring comfort to the patients they care for so much.They are always giving, the angels’ gentle touch.They do their job with love and care.The love they have, so willingly they share.

So many have come and gone these years,So many have left, it brings us to tears.But their names and compassion will always stay,Reminding us of when they had to go away.

Our lives are touched by the skill they possess.This skill they share with such willingness.I hope I never forget the loving hearts and caring smilesOf those who lived so close, and those who traveled miles.Kindness, compassion, love and care were firstOn the hearts of the precious dialysis nurse.

Dedicated to all the dialysis nurses, techs and helpers.

Gregory Christmas, of Tell City, Indiana, hasbeen on hemodialysis since 1988. A

framed copy of this poem hangs inhis dialysis unit.

NursesBy Charles Joseph Nelson, III

They are here to help you, no matter what the task.Most of the time they’re in the process, even before you

get a chance to ask.What they deal with each day is more than you can take.

A lot of the duties at hand, there’s quite a bit at stake.Some people take them for granted, give them a hard time.

One day, you never know, they could save your life, or mine.Nurses put up with a lot of guff if you don’t get your way.You better have second thoughts about the nasty things you say.Put yourself in their shoes, then maybe you’ll understand.The job they do every day isn’t always grand.They work so hard to fulfill our needs and always do their bestNo matter how rude some people are, they never take it out on

the rest.You have to give them credit, where credit is due.Unless you’re a nurse, you’ll never understand what they have

to go through.They comfort you when you’re ill, no matter what the time.Obviously they care for us, to keep our health in line.Nurses deserve the utmost respect, but some people don’t

seem to care.They go way out on a limb to make sure when you need

them, they are there.If that’s not dedication, I don’t know what to say.So the next time you see your nurse,

you should throw a “Thank you” their way!!

Charles Nelson, of Pierrepont Manor, New York, has been on dialysis since

February 1999. He is 27.

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page 8 page 13 the inside word on communication …who responded talk with their nurse once per...

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