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Doc, Don’t Procrastinate . . . Rehabilitate, Palliate, and Advocate

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Related Article, p. 300

n a recent dialysis meeting, one of our col-leagues commented “there is so much more

o living than just not dying.” On reflection, thesere words that apply not only to the individualialysis patients and their families, but also to uss health care providers. We often subcon-ciously direct treatments to fulfill our own expec-ations and treatment goals. It is highly likelyhat we overestimate the benefits of dialysis carend underestimate the burden to our patients. Aecent study of patients who were residents inursing homes at the time of dialysis initiationhowed that dialysis initiation was associatedith a 58% 1-year mortality rate and a rapidecline in functional independence.1 Perhaps evenore strikingly, in a smaller single-center series,

ven individuals who were previously indepen-ent experienced a high rate of functional de-line in the first few months after dialysis initia-ion.2 In this issue of the American Journal ofidney Diseases, Thakar et al3 add another per-

pective to the burden of chronic illness carriedy dialysis patients.4 They performed a retrospec-ive observational study of all patients dependentn dialysis who were admitted to a single long-erm care hospital (LTCH) and followed themhrough until their discharge. Their results wereobering, in that only 31% of patients were ableo return home from the LTCH. In fact, patientsere more likely to be discharged to a nursingome (40%) or to transfer back into an acute careospital (24%) than to return home, suggesting aailure of holistic care.

Acute illness makes even healthy individualseel lousy, albeit for a short period of time. Acutellness associated with hospitalization is natu-ally worse. Studies in the geriatric literaturelearly show that even 1 hospitalization is predic-ive of subsequent functional decline and theuture need for placement in a long-term carenstitution or nursing home.4-6 In the dialysisopulation, the associations are less well de-cribed; however, over the last 5 years there haseen an explosion in the number of publicationsescribing an unexpectedly high burden of dis-

bility, sensory impairment, and cognitive de-

merican Journal of Kidney Diseases, Vol 55, No 2 (February), 20

line.7-16 Hospitalizations, even when only for aew days, have been shown to be associated witheterioration in multiple aspects of daily living,trength, and cognitive function.17 Perhaps moretriking is the observation that even 1 week afterischarge, patients do not return to their previousevels of functioning.

In patients with chronic kidney disease, thessumption has long been that clearing the ure-ic toxins is beneficial and that, after the initial

ew dialysis sessions, patients should see anmprovement in energy, reduction in symptomurden, and a return to more normal life. How-ver, none of the data available support thiselief. Previous reports dating as far back as994 suggest that most dialysis patients do noteturn to the same level of functioning as theyreviously had, while 2 recent publications exam-ning patients aged 80 years or more and thoseesiding in nursing homes actually suggest thatatients experience an accelerated decline inunctional status after dialysis initiation.1,2,18,19

What then is the solution? Why are so manyialysis patients now residing in nursing homes?hy do so many patients admit to staying mostly

nside their homes unless traveling to or from theialysis units? Our personal experience in To-onto has been that active inpatient rehabilitationith integrated dialysis care is one possible solu-

ion. Active rehabilitation appears to be as effec-ive in dialysis patients as in nondialysis patients.n our experience, over 70% of seniors returnack to their private homes after completion ofhe rehabilitation program, with most continuingo enjoy more active lives for months to yearsfterwards.20 Why then did Thakar et al3 findTCH outcomes to be so disappointing? LTCHsrovide care to chronically ill, elderly, and dis-bled persons in an effort to promote indepen-ent living and offer rehabilitation services. Mostim to promote continuity of care between acute,re- and post-acute, and continuing care in insti-

Address correspondence to S. Vanita Jassal, 8N857, 200lizabeth St, Toronto, M5G 2C4 Ontario. E-mail: Vanita.assal@uhn.on.ca

© 2010 by the National Kidney Foundation, Inc.0272-6386/10/5502-0003$36.00/0

doi:10.1053/j.ajkd.2009.12.002

10: pp 209-212 209

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utions, the community, and the home. However,t is unlikely that LTCH services integrate withialysis services or vice versa and therein mayay the problem. Dialysis sessions at set timesrather than at varying times) are known to haveetter rehabilitation outcomes.21 Other factorsuch as short daily dialysis or staff cross-trainingay be helpful. Additionally, combined clinical

nd teaching rounds may lead to an appreciationf the other disciplines. Examples include thehysiotherapist who notes increased respiratoryate during exercise and suggests increased ultra-ltration at the next dialysis session, or theharmacist who notes that the pain medicationequired for the formal rehabilitation sessions iseading to mild drowsiness and may be exacerbat-ng falls and unsteadiness in the immediate post-ialysis period.One alternative viewpoint is that patients with

igh premorbid functional and symptom burdenshould be advised to not start dialysis but opt for

more conservative approach. Certainly, thevidence emerging from some UK centers sup-orts the role of nondialysis care for kidneyailure22-24; however, many nephrologists feelncomfortable making such decisions and fearhe medicolegal implications of doing so. Manyeel insufficiently trained to either have suchiscussions or to provide medical and psychologi-al care at the end of life.25,26 Yet fewer pro-rams have dedicated resources to manage theare of patients who have opted to not undergoialysis, despite an appreciation that oftentimesot providing dialysis care is more resourcentense than simply initiating dialysis therapy.27,28

herefore, an additional strategy is to developrograms within each medical care center tollow better discussion around palliative carend create better support systems for familiesnd patients opting to go this route. Treatmentlanning should include all aspects of care foridney failure without necessarily including rou-ine dialysis sessions. Protocols and clinical path-ays which focus on pain relief, and symptomanagement with erythropoietin, scopolamine,

r fluids can be shared with patients and families,llowing them to feel involved and in control.he risk of hospitalization, the impact on day-to-ay life, and commonly experienced symptomshould also be included as part of the education,

nsuring all involved are aware of both the m

dvantages and the burdens of treatment. In thenal stages of life, families often find it reassur-

ng to keep a symptom response kit at home.hese kits may contain medications that areommonly used to manage symptoms. Familiesr visiting nurses can be instructed on how andhen to use these medications to help ease therocess of dying at home.For patients and families who, despite a high

omorbid or functional burden, wish to proceedith dialysis, it seems reasonable to offer a trialf dialysis with a specified duration, explicit endoints, and clear expectations.29 In this respect,are of the vulnerable dialysis patient parallelsare of the cancer patient. Survival rates areimilar for kidney failure (end-stage renal dis-ase) and many of the common types of cancers.he symptom burden in both diseases is high. In

act, the main difference is that cancer patientsften have time–limited oncology treatmentshile patients with kidney failure are generally

ooking at a lifetime of treatment. Thus, a trial ofherapy may allow a better understanding of theisease, the treatment itself, and the anticipatedymptom burden before decisions around continu-tion or discontinuation are made. For the patientith kidney failure, a trial of dialysis may give

he patient and family a sense that they arefighting” the disease (akin to a trial of chemo-herapy).30 It may help them understand what its like to need to travel to and from dialysis 3imes weekly, how fluid shifts affect the sense ofellness, and what sort of dietary restrictionsill be required. Compiling this experience al-

ows patients to make an informed decision aboutheir treatment in much the same way someatients chose to continue or to stop chemo-herapy. Proactive discussions around the signsr symptoms of distress that would necessitatehat the dialysis session be stopped early, oreferred, may lower the tension between healthare staff and families and lead to a gradualcceptance that dialysis is futile. Such signs maynclude frequent low blood pressure requiringepositioning of the dialysis chair, pain, cramp-ng, moaning, or discomfort which requires ongo-ng medication. Communication in such trials isey, as misunderstanding and miscommunica-ion regarding prognosis may lead to overesti-ated expectations and a sense of disappoint-

ent.31 Patients and families need to understand

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Editorial 211

hat not having dialysis does not equate to notaving care.29,32,33 It is a shift in care to priori-ize management of different symptoms. To thisffect, the oncology literature suggest patients,amily members, and team members all be givenwritten plan which clearly documents progno-

is, the goals of therapy, and the treatment op-ions. Expecting patients to understand, or eveno trust, that care is “futile” is unrealistic. Theoncept of futility is difficult to grasp, and particu-arly when a loved one is ill, it can be too much tosk of families. Ongoing open, honest communi-ation with all team members giving the sameessage is crucial and allows families, and pa-

ients, to acknowledge and express their fearsnd concerns as well as their preferences.

To conclude, we welcome the shift withinephrology that is being seen in recent articles,ncluding that by Thakar et al. Outcomes are noonger being equated to survival alone. Studiesre now addressing quality of life, functionality,ehabilitation, and the question of whether pa-ients die “good deaths” or “bad deaths.” We, ashe nephrology team, have a responsibility to ouratients to assist them with the best possibleiving, or if appropriate, the best possible death.

hether we like it or not, death is the onlyutcome that is guaranteed, regardless of whate do. What we need to learn is that it is not

bout the dying, it is about the living beforehand.

S. Vanita Jassal, MB, MDDiane Watson, RN(EC), MSc, CNeph(C)

University Health NetworkOntario, Canada

ACKNOWLEDGEMENTSFinancial Disclosure: None.

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iency of care. Arch Phys Med Rehabil. 2005;86(10):949-1952.

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