18

APPLIED AKI & CRITICAL CARE NEPHROLOGY · VOLUME 5

Chapter 18

The Whole Patient

Goals of Care, Conservative Care & Shared Decisions

Orientation & KnowledgeVisualise & MapClinical ReasoningSafety & EvidencePatient DecisionsApply & Test
Chapter Preamble

Signals declared

  • Sig-D — Diagnostic (primary). Prognosticate honestly in severe AKI, and distinguish what is effective care from what is a values-driven choice.
  • Sig-T — Therapeutic (strong). Conservative kidney management as an active treatment, symptom control, the time-limited trial, and the management of dialysis withdrawal.
  • Sig-E — Equipoise (strong). Whether to start, continue, or stop dialysis in a poor-prognosis patient is preference-sensitive, so the chapter builds the decision map and the shared-decision scripts.
  • Sig-V — Evidence-dense (strong). Conservative-management outcomes and the ethical equivalence of withholding and withdrawing rest on observational data and consensus, graded honestly.

Levels populated and omitted

Populated (20): L1–L5, L7, L8, L10–L22. As the shared-decision capstone it fires the preference-sensitive decisions map (L15) and the shared-decision scripts (L16); the therapeutic, evidence, and diagnostic signals fire the rest.

  • L6 / L9 mechanism levels — omitted. No Sig-M; this is a decision, communication, and whole-patient chapter, not a mechanistic one.
Phase A Orientation & Knowledge
01
Phase A · Level 1

Learning Objectives

By the end of this chapter you should be able to:

  • Define conservative kidney management as an active treatment choice, distinct from withdrawal of care.
  • Apply the shared-decision framework: prognosis, values, options, deliberation, and documentation.
  • Prognosticate honestly in dialysis-requiring AKI, using frailty and the surprise question.
  • Separate the effective-care decisions from the preference-sensitive ones in the poor-prognosis or dying patient.
  • Conduct a time-limited trial of dialysis with explicit goals and a review.
  • Recognise that withholding and withdrawing dialysis are ethically equivalent, and manage withdrawal.
  • Deliver symptom-focused conservative and comfort care for kidney failure.
  • Navigate capacity, surrogate decision-making, and cultural and religious values without abandoning the patient.
02
Phase A · Level 2

Executive Summary

  • Not every patient with severe AKI should receive every intervention; for some, the right care is conservative management or a focus on comfort.
  • Conservative kidney management is active, holistic care of kidney failure without dialysis — symptom control, residual-function preservation, and psychological, spiritual, and family support — not 'doing nothing.'
  • In the frail elderly and multi-morbid, conservative management can offer comparable quality of life and survival to dialysis, with fewer hospital days and death in the preferred place.
  • The decision rests on honest prognosis: severe AKI needing dialysis in the frail or multi-organ-failure patient carries high short-term mortality, and dialysis may prolong dying rather than restore a valued life.
  • The surprise question — would you be surprised if this patient died within a year? — and a frailty assessment anchor the prognostic conversation.
  • Shared decision-making proceeds in steps: establish prognosis, elicit values and goals, present options without bias, deliberate together, and document and revisit.
  • Some decisions are effective care — symptom control, honest prognostication, capacity assessment — and others are preference-sensitive — dialysis versus conservative management, a time-limited trial, withdrawal, and place of care.
  • A time-limited trial of dialysis — explicit goals, a review date, agreed criteria to continue or stop — is a legitimate way to handle prognostic uncertainty.
  • Withholding and withdrawing dialysis are ethically equivalent; withdrawal is appropriate when the burdens outweigh the benefits or the patient requests it.
  • After withdrawal, care becomes comfort-focused, with death usually following over days to weeks; palliative care is integrated, not deferred.
  • Symptom management addresses uraemic nausea, itch, restless legs, and fatigue, fluid overload, pain (with renally safe opioids), and breathlessness.
  • Decisions respect capacity, surrogate decision-makers, advance directives, and the patient's cultural and religious values, with family involved as the patient wishes.
  • Whatever the choice, the patient is never abandoned — 'we will care for you' is the constant.
  • This capstone integrates the AKI episode into the whole person and their illness trajectory, closing the volume on the patient rather than the kidney.
03
Phase A · Level 3

Main Narrative

This volume has spent seventeen chapters on how to treat the kidney. The last asks a different question: should we, and to what end? For some patients with severe AKI, the full apparatus of dialysis restores a life they value; for others, it only prolongs a dying they would not have chosen. Telling these apart is not a technical skill but a human one — honest prognosis, a genuine understanding of what the patient wants, and the humility to offer conservative care as the active, dignified treatment it can be. The chapter closes the volume on the whole patient.

Conservative kidney management is a treatment, not a default

The first idea to fix is that not dialysing is not the same as not treating. Conservative kidney management is an active, planned approach to kidney failure that withholds dialysis while doing everything else: controlling uraemic and fluid symptoms, preserving residual kidney function, treating reversible contributors, and supporting the patient and family psychologically, spiritually, and practically, with advance care planning woven through. It is a treatment choice with its own work and its own skill, and it must be offered as such — never presented as 'there is nothing more we can do.' For the right patient, it is not a lesser path but a different and often better one.

When conservative management serves the patient

The patient for whom conservative management may serve best is the frail, multi-morbid, often elderly person whose AKI sits within a larger decline, and who values quality and place of life over its mere extension. The evidence, largely observational but consistent, is that in such patients conservative management can deliver a quality of life comparable to dialysis and, in the very frail and elderly, a similar survival — with fewer hospital days, less of life spent attached to a machine, and a death more often in the preferred place. Dialysis in this group buys less time than its machinery implies and exacts a real cost in burden and dislocation. None of this argues against dialysis for the patient it serves; it argues for honestly comparing the two against what the patient actually wants.

Honest prognosis is the foundation

Every good decision here rests on a prognosis stated plainly. Severe AKI requiring dialysis carries a high short-term mortality, and that risk concentrates in the frail, the multi-organ-failure patient, and the very elderly — the same patients for whom dialysis may prolong dying rather than restore living. Prognostication is aided by frailty assessment and by the disarmingly useful surprise question: would you be surprised if this patient died in the next six to twelve months? A 'no' should prompt the goals-of-care conversation. The duty is not to predict with false precision but to be honest about uncertainty and trajectory, because a decision built on an over-optimistic prognosis is not truly shared — it is misled.

The shared-decision framework

Shared decision-making is a discipline with steps, not a single conversation. First, establish and communicate the prognosis honestly. Second, elicit the patient's values and goals — what they understand of their illness, what they hope for and fear, whether they prioritise longevity, function, comfort, or being at home. Third, present the options without bias: dialysis with its realistic burdens and benefits, conservative kidney management as an active alternative, and the time-limited trial as a way through uncertainty, using decision aids where they help. Fourth, deliberate together, respecting the patient's capacity, the role of surrogates and advance directives where capacity is lacking, and the family's place as the patient wishes. Fifth, document the decision and its reasoning, and revisit it, because goals change as illness evolves. Done well, this produces a decision the patient owns rather than one imposed on them.

The time-limited trial, withholding, and withdrawing

Two further tools deserve clarity. The time-limited trial, introduced in the dialysis chapter, starts dialysis with explicit goals and a defined review date, agreeing in advance what improvement would justify continuing and what would justify stopping — a way to act under uncertainty without an open-ended commitment, provided the review is genuine and not a formality that always continues. And the ethical bedrock: withholding and withdrawing dialysis are morally and legally equivalent. The fear that starting dialysis cannot be undone is mistaken and harmful, because it makes clinicians reluctant to offer a trial; if dialysis is started and proves not to meet the patient's goals, it can and should be stopped. Withdrawal is appropriate when the burdens outweigh the benefits, when it no longer serves the agreed goals, or when a patient with capacity requests it. After withdrawal, care turns wholly to comfort, and death usually follows over days to a few weeks, predominantly from uraemia — a course that can be made peaceful.

Conservative and comfort care: the symptoms

Choosing conservative or comfort-focused care commits the team to manage symptoms actively. Uraemia brings nausea, pruritus, restless legs, and a heavy fatigue, each of which has specific treatments. Fluid overload is eased with diuretics while they work and with fluid restriction. Pain is treated with opioids chosen for renal safety — avoiding morphine, whose metabolites accumulate, in favour of agents that do not, dosed cautiously as Chapter 17 described. Nausea, breathlessness, and the symptoms of the final days are anticipated and treated. Palliative care is a partner from the point of decision, not a service called only at the very end, and conservative management delivered well is busy, attentive care — the opposite of neglect.

Capacity, surrogates, culture, and not abandoning the patient

The decision must be made with the right person and in a way that honours who the patient is. Where the patient has capacity, their informed choice governs. Where it is lacking, decisions follow advance directives where they exist, then a surrogate exercising substituted judgment — what this patient would have wanted — and, failing that, their best interests. Cultural and religious values are central, not peripheral: patients and families bring deeply held beliefs about life, death, suffering, and the involvement of family in decisions, and good care respects and works within them rather than around them, involving family to the extent the patient wishes. Through all of it runs one non-negotiable commitment: whatever the patient chooses, they are not abandoned. 'We will care for you, whatever you decide' is the sentence that holds the whole framework together, and it is the note on which a volume about a frightening, often fatal syndrome should end — on the person, not the kidney.

Where the evidence is firm, and where judgement governs

As elsewhere, it helps to mark what is settled. That withholding and withdrawing are ethically equivalent is firm ethical and legal consensus. That conservative management can match dialysis on quality of life, and survival in the very frail, is supported by consistent observational data, though not by randomised trials, which are hard to do here. The prognostic tools are useful but imprecise. And the decisions themselves — whether to dialyse, when to stop, where to be cared for — are not the kind that evidence can settle, because they turn on values that are the patient's to weigh. The clinician's expertise is to bring honest prognosis and clear options to a conversation whose conclusion belongs to the patient. That is the proper close to a clinical volume: the science fully deployed, and then placed in the service of a human choice.

04
Phase A · Level 4

Reference Tables

Table 18.1 — Dialysis versus conservative kidney management

DimensionDialysisConservative kidney management
AimReplace kidney functionActive symptom and whole-person care without dialysis
Best fitsPatients for whom it restores valued lifeFrail, multi-morbid, valuing quality/place over extension
BurdensLines, time on a machine, hospital daysSymptom burden of uraemia, managed actively
In the very frailMay prolong dying; less time gained than impliedComparable quality of life and often survival

Table 18.2 — The shared-decision framework

StepAction
  1. Prognosis
Establish and communicate honestly (frailty, surprise question)
  1. Values
Elicit understanding, hopes, fears, priorities (longevity/function/comfort/place)
  1. Options
Present dialysis, conservative management, and the time-limited trial without bias
  1. Deliberate
Decide together; respect capacity, surrogates, advance directives, family
  1. Document & revisit
Record the reasoning; revisit as the illness evolves

Table 18.3 — Prognostic aids in dialysis-requiring AKI

AidUse
Short-term mortalityHigh in frail/multi-organ-failure/elderly dialysis-requiring AKI
Surprise question'Would you be surprised if they died within 6–12 months?' — a 'no' triggers the conversation
Frailty assessmentRefines prognosis and burden of treatment
Honesty about uncertaintyCommunicate trajectory and uncertainty, not false precision

Table 18.4 — Effective-care versus preference-sensitive decisions

Effective care (clinical duty)Preference-sensitive (the patient's values)
Honest prognosticationDialysis versus conservative management
Symptom controlA time-limited trial versus commit or decline
Capacity assessmentContinuing versus withdrawing dialysis
Not abandoning the patientPlace of care and death

Table 18.5 — Symptom management in conservative/comfort care

SymptomApproach
Uraemic (nausea, itch, restless legs, fatigue)Targeted symptomatic treatment
Fluid overloadDiuretics while effective; fluid restriction
PainRenally safe opioids (avoid morphine — metabolites accumulate); cautious dosing
Breathlessness / terminal symptomsAnticipate and treat; integrate palliative care early

Table 18.6 — Ethical and communication principles

PrincipleDetail
CapacityIf present, the informed patient decides
Surrogate decisionsAdvance directive → substituted judgment → best interests
Withhold = withdrawEthically and legally equivalent
Culture and religionCentral to the decision; respect and work within them
Non-abandonment'We will care for you, whatever you choose'
Phase B Visualise & Map
05
Phase B · Level 5

Imaging & Flowchart Specifications

Figure 18.1 — Two active paths, not one path and nothing
Figure 18.1 — Two active paths, not one path and nothing
Figure 18.2 — The shared-decision sequence
Figure 18.2 — The shared-decision sequence
Figure 18.3 — The time-limited trial
Figure 18.3 — The time-limited trial
Flowchart 18.A — Goals of care in severe AKI
Flowchart 18.A — Goals of care in severe AKI
07
Phase B · Level 7

Decision Pathways

R1
IF a patient with severe AKI has a poor prognosis, THEN offer conservative kidney management as an active treatment, not as 'nothing more to do.'
R2
IF you are deciding about dialysis in a frail or dying patient, THEN establish and communicate an honest prognosis first — the decision rests on it.
R3
IF the answer to the surprise question is 'no', THEN initiate a goals-of-care conversation.
R4
IF a decision is preference-sensitive (dialyse vs conservative, trial, withdrawal, place of care), THEN share it; if it is effective care (symptom control, prognosis, capacity), THEN provide it.
R5
IF prognosis is uncertain, THEN offer a time-limited trial of dialysis with explicit goals and a genuine review date.
R6
IF dialysis no longer meets the patient's goals or the patient requests it, THEN withdrawal is appropriate — it is ethically equivalent to withholding.
R7
IF a patient is on conservative or comfort care, THEN manage uraemic symptoms, fluid, and pain actively, with renally safe opioids and early palliative care.
R8
IF capacity is lacking, THEN follow advance directives, then substituted judgment, then best interests — honouring cultural and religious values and never abandoning the patient.

Clinical Reasoning

Phase C Clinical Reasoning
08
Phase C · Level 8

Clinical Cases

CASE 1CHOOSING CONSERVATIVE CARE

An active choiceConservative kidney management

Presentation

An 84-year-old man with advanced frailty, heart failure, and severe AKI is offered dialysis. After an honest conversation about prognosis and burden, he says he does not want to spend his remaining time attached to a machine or in hospital. The team worries that not dialysing means abandoning him.

Pause and reflect

Is declining dialysis the same as receiving no care — and what does choosing conservative management commit you to?

Analysis

Declining dialysis is not declining treatment. For this frail, multi-morbid man who values quality and place of life, conservative kidney management is the active, appropriate choice — and the evidence suggests it offers comparable quality of life, similar survival in his frailty band, and fewer hospital days. The worry about abandonment is exactly what conservative management answers: it is busy, attentive care.

Plan

Commit to conservative management: control uraemic symptoms, fluid, and pain; preserve residual function; integrate palliative care; support him and his family; and plan for care in his preferred place. Document the decision and revisit it as things change.

Teaching point

Conservative kidney management is a treatment, not a default. Offered well, it is the opposite of abandonment.

Cross-reference

Exercises rules R1 and R7; the two-paths figure (18.1); the L16 options script; Tables 18.1 and 18.5.

CASE 2THE TRIAL THAT DIDN'T WORK

A genuine reviewStopping a time-limited trial

Presentation

A critically ill patient with multi-organ failure was started on a two-week time-limited trial of dialysis, with the agreed goal of recovering enough organ function to leave intensive care. At review, she has deteriorated across every system, with no sign of recovery. The team feels unable to stop something already started.

Pause and reflect

The agreed goals have not been met — why does stopping feel harder than never starting, and is that feeling correct?

Analysis

The trial has done its job: it answered the uncertainty, and the answer is that dialysis is not achieving her goal. The reluctance to stop reflects the common but mistaken feeling that withdrawing differs from withholding — ethically and legally they are equivalent. Continuing now would be continuing a treatment that does not serve her, against the very terms agreed at the outset.

Plan

Honour the trial's terms: at the genuine review, with goals unmet, withdraw dialysis and move to comfort-focused care with palliative support, keeping the family informed and supported. Document the reasoning and the agreed goals that guided it.

Teaching point

A time-limited trial only works if the review is real. Withdrawing when the agreed goals are not met is ethically equivalent to never starting.

Cross-reference

Exercises rules R5 and R6; the time-limited-trial figure (18.3); the time-limited-trial script in Chapter 13.

CASE 3WITHDRAWING DIALYSIS

When it no longer servesDialysis withdrawal and comfort care

Presentation

A long-term dialysis patient develops a new terminal illness and tells the team, with full capacity, that he no longer wishes to continue dialysis. Some staff are uneasy, feeling that stopping dialysis 'causes' his death.

Pause and reflect

A patient with capacity asks to stop — whose decision is it, and what happens after?

Analysis

A patient with capacity has the right to decline any treatment, including dialysis, and his informed choice governs. Stopping dialysis allows him to die of his underlying disease; it is the withdrawal of a no-longer-wanted treatment, not the cause of death, and it is ethically equivalent to never having started. The team's unease is understandable but must not override his autonomy.

Plan

Confirm capacity and the informed, voluntary nature of his decision. Withdraw dialysis and provide comfort-focused care — anticipating and treating uraemic and terminal symptoms with palliative care — in his preferred place, supporting him and his family. Death usually follows over days to weeks.

Teaching point

A patient with capacity may stop dialysis. Withdrawal is the patient's right and the team's duty to honour, followed by active comfort care — not abandonment.

Cross-reference

Exercises rules R6 and R7; the L16 withdrawal script; Tables 18.5 and 18.6.

CASE 4THE FAMILY AND THE FAITH

Deciding with, not forCapacity, surrogates, and values

Presentation

A patient without decision-making capacity has severe AKI and a poor prognosis. The family holds strong religious and cultural values about end-of-life care and wishes to be closely involved. There is no written advance directive, but the patient had spoken about what mattered to him.

Pause and reflect

Who decides, on what basis, and how do the family's values fit in?

Analysis

With capacity lacking and no advance directive, the decision follows substituted judgment — what this patient would have wanted, drawing on what he expressed — and, where that is unclear, his best interests. The family's role is central, both as the source of substituted judgment and because the patient valued their involvement; their cultural and religious values are part of his values, to be respected and worked within, not around.

Plan

Engage the family in an unhurried, culturally sensitive conversation, reconstruct the patient's wishes through substituted judgment, and reach a decision together that honours his values and faith. Provide whatever care is chosen — dialysis, conservative management, or a time-limited trial — without abandoning him, and revisit as needed.

Teaching point

When capacity is lacking, decide with the family through substituted judgment and best interests, honouring cultural and religious values as part of who the patient is.

Cross-reference

Exercises rule R8; Table 18.6; the L15 preference map.

10
Phase C · Level 10

Clinical Pearls

Not every severe AKI should receive every intervention.
Conservative kidney management is active care without dialysis — not 'doing nothing.'
In the frail elderly, conservative care can match dialysis on quality of life and survival.
Conservative care gives fewer hospital days and death in the preferred place.
Honest prognosis is the foundation of every goals-of-care decision.
The surprise question ('would you be surprised if they died within a year?') triggers the conversation.
Shared decision-making: prognosis → values → options → deliberate → document → revisit.
Separate effective-care decisions from preference-sensitive ones.
Present dialysis, conservative management, and the time-limited trial without bias.
A time-limited trial needs explicit goals and a genuine review date.
Withholding and withdrawing dialysis are ethically and legally equivalent.
Withdraw when burdens outweigh benefits or the patient (with capacity) requests it.
After withdrawal: comfort care; death usually over days to weeks.
Manage uraemic symptoms, fluid, and pain actively; avoid morphine (metabolites accumulate).
Lacking capacity: advance directive → substituted judgment → best interests.
Honour cultural and religious values as part of the patient's values; involve family as they wish.
Integrate palliative care early, not only at the very end.
Whatever the choice: 'we will care for you' — never abandon the patient.

Safety & Evidence

Phase D Safety & Evidence
11
Phase D · Level 11

Red Flags & Never-Do

Panel A — Red flags

Defaulting to dialysis in a frail, dying patient without a goals-of-care conversation — stop and have it.
Presenting conservative management as 'nothing more to do' — reframe it as the active treatment it is.
Reluctance to stop a time-limited trial whose goals are unmet — withdrawal is equivalent to withholding.
Overriding a capacitous patient's refusal of dialysis — their informed choice governs.
Sidelining family or faith in a values decision — they are central to who the patient is.

Panel B — Never do

NEVER — present conservative kidney management as the absence of care.
NEVER — treat withdrawing dialysis as ethically different from withholding it.
NEVER — make a preference-sensitive decision for the patient that is theirs to make.
NEVER — abandon the patient, whatever they choose.
12
Phase D · Level 12

Common Pitfalls

Pitfall 1 — Conservative care as 'nothing'

WRONG Telling a patient 'there's nothing more we can do' when declining dialysis.
RIGHT Offering conservative kidney management as an active, supportive treatment.
WHY Conservative care is busy, attentive management — the opposite of abandonment.

Pitfall 2 — Defaulting to dialysis

WRONG Starting dialysis on a frail, dying patient because it is available.
RIGHT Establishing prognosis and holding a goals-of-care conversation first.
WHY Whether to dialyse a poor-prognosis patient is a values decision, not a default.

Pitfall 3 — The trial that never ends

WRONG Continuing a time-limited trial whose goals were not met.
RIGHT Honouring the agreed terms and withdrawing at a genuine review.
WHY Withdrawing is ethically equivalent to withholding; a trial without a real review is no trial.

Pitfall 4 — Overriding the patient

WRONG Continuing dialysis a capacitous patient has asked to stop.
RIGHT Honouring the informed refusal of a patient with capacity.
WHY A patient with capacity may decline any treatment, including dialysis.

Pitfall 5 — Working around the family and faith

WRONG Making the decision without the family or the patient's cultural/religious values.
RIGHT Deciding with the family through substituted judgment, honouring those values.
WHY Cultural and religious values are part of the patient's values, central to the choice.
13
Phase D · Level 13

Evidence Grading

GRADE

A

HIGH CONFIDENCE

The effect is real and the estimate is stable.

RCTs at low risk of bias; multiple concordant prospective cohorts; meta-analyses.

GRADE

B

MODERATE CONFIDENCE

The effect is likely real but may shift with new data.

Observational studies, registries, mechanistic human studies.

GRADE

C

LOW CONFIDENCE

Rests on physiology, reasoning, or consensus rather than outcomes.

Pathophysiological reasoning; extrapolation; consensus without outcomes.

Graded statements (by evidence type)

StatementGradeBasis (evidence type)
Withholding and withdrawing dialysis are ethically and legally equivalent.AEstablished ethical and legal consensus
Conservative management can match dialysis on quality of life in the frail elderly.BConsistent observational cohorts
Survival is similar to dialysis in the very frail/elderly with high comorbidity.BObservational comparisons
Conservative management yields fewer hospital days and more death in the preferred place.BObservational data
The surprise question helps identify patients for goals-of-care discussion.BValidation studies, modest accuracy
A capacitous patient may decline or stop dialysis.AEstablished ethics and law
Shared decision-making improves concordance of care with patient values.BObservational and trial evidence

Patient Decisions

Phase E Patient Decisions
14
Phase E · Level 14

Absolute Risk in Natural Frequency

Natural-frequency estimates for orientation, from observational cohorts; they vary greatly with frailty, comorbidity, and age. They convey the size of the goals-of-care decisions, expressed per 100 comparable patients.

Per 100 patients…OutcomeRoughly how manySee
Very frail/elderly, dialysis vs conservative careSurvive substantially longer on dialysisFew — the gain is small in this groupL13 row 3
On conservative kidney managementDie in their preferred placeMore than with dialysisL13 row 4
Frail, with dialysis-requiring AKIDie in the short termA high proportionL13 row 2
Offered structured shared decision-makingReceive care matching their stated valuesMore than with usual careL13 row 7

How to read these

Read these as orientation, not promises; outcomes vary enormously with frailty and comorbidity, and individuals are not averages. The stable signals: in the very frail, dialysis adds little time at real cost, conservative care more often achieves the preferred place of death, and shared decision-making better matches care to values. Communicate them as people out of 100, never as a hazard ratio — and always alongside what the patient wants.

15
Phase E · Level 15

Preference-Sensitive Decisions

First, what is NOT on this map. Some elements are effective care or clinical duty, not choices to be offloaded onto the patient: prognosticating honestly, controlling symptoms, assessing capacity, and never abandoning the patient. These are owed regardless of the decision.

What IS preference-sensitive. The decisions below are the patient's, grounded in their values and prognosis, and belong in a shared conversation.

DecisionThe optionsWhat it trades / whose values decide
Dialysis vs conservative managementReplace function vs active care without dialysisLength vs burden and quality — the patient's values
Time-limited trialTrial with a review vs commit or declineInformation under uncertainty — the patient's tolerance for a trial
Continue vs withdraw dialysisContinue vs stop and move to comfortBenefit vs burden as goals change — the patient's wishes
Place of care and deathHospital vs home vs hospiceComfort, family, and meaning — the patient's priorities
16
Phase E · Level 16

Shared-Decision Scripts

Language for the two conversations that complete this volume's equipoise arc (the watchful-waiting and time-limited-trial scripts are in Chapter 13). Adapt to the patient; the teach-back confirms understanding.

Script 1 — Presenting options, including conservative care

CLINICIAN “Your kidneys have failed as part of a serious illness. There are two real ways forward, and I want to walk through both honestly so we can choose what fits you.”

CLINICIAN “One is dialysis — a machine doing the kidneys' work, which can extend life but means a line, regular sessions, and time in hospital, and in someone as unwell as you it may add less time than it sounds.”

CLINICIAN “The other is what we call conservative kidney management. That is not giving up — it is active care: we treat the symptoms, keep you comfortable, support you and your family, and focus on the quality of your time, often at home.”

PATIENT “So one of them is just... stopping?”

CLINICIAN “Neither is stopping. Both are active plans, and whichever you choose, we will care for you the whole way. What matters most to me is what matters most to you — more time, or more comfort and time at home? Tell me how you think about that.”

TEACH-BACK “So I know I've explained it fairly — how would you describe the two options, and what's drawing you toward one?”

Script 2 — Withdrawing dialysis when it no longer serves

CLINICIAN “When we started dialysis, we hoped it would help you recover. I have to be honest that it isn't doing that — your other illnesses have advanced, and dialysis is now adding burden without giving you back the life you wanted.”

FAMILY “But if we stop, won't that be what kills him?”

CLINICIAN “I understand why it feels that way. Stopping dialysis lets his underlying illness take its course; it isn't what causes his death, and choosing to stop is no different, ethically, from never having started. If it's no longer helping him, continuing it isn't kindness.”

FAMILY “What happens to him then?”

CLINICIAN “We change the goal entirely to his comfort — treating any symptoms, keeping him peaceful, and caring for him in the place he'd choose, with you beside him. We are not withdrawing care; we are withdrawing a machine that has stopped serving him. We will be with him, and with you, throughout.”

TEACH-BACK “I want to be sure I've been clear and gentle enough — can you tell me how you understand what stopping dialysis would mean, and what our focus becomes?”

Apply & Test

Phase F Apply & Test
17
Phase F · Level 17

Documentation Templates

Paste-ready notes. Tick the boxes that apply and delete the rest; record the prognosis, the values, and the shared reasoning so the decision is auditable and revisitable.

Template 1 — Goals-of-care / shared-decision note

  • Prognosis discussed honestly: surprise question ☐ yes ☐ no; frailty ___ ; short-term mortality risk ___ .
  • Values elicited: priorities ☐ longevity ☐ function ☐ comfort ☐ place of care; fears/hopes ___ .
  • Options presented without bias: ☐ dialysis ☐ conservative kidney management ☐ time-limited trial.
  • Capacity: ☐ present (patient decides) ☐ lacking → ☐ advance directive ☐ substituted judgment ☐ best interests.
  • Cultural/religious values and family involvement honoured: ☐ yes.
  • Decision and reasoning: ___ ; review/revisit plan: ___ ; non-abandonment affirmed: ☐ yes.

Template 2 — Conservative / comfort care plan

  • Pathway: ☐ conservative kidney management ☐ comfort care after withdrawal ☐ time-limited trial (review date ___ ).
  • Symptoms addressed: ☐ nausea ☐ pruritus ☐ restless legs ☐ fatigue ☐ fluid overload ☐ pain (renally safe opioid) ☐ breathlessness.
  • Palliative care involved early: ☐ yes.
  • Preferred place of care/death: ___ ; family support: ___ .
  • If time-limited trial: agreed goals ___ ; criteria to continue/stop ___ .
  • Revisit as illness evolves: ☐ yes; patient never abandoned: ☐ affirmed.
18
Phase F · Level 18

Cheat Sheet

Two questions: should we treat the kidney, and to what end.
Conservative kidney management = active care without dialysis (NOT nothing).
Frail elderly: conservative care matches dialysis on quality of life / survival.
Conservative care: fewer hospital days, death in preferred place.
Honest prognosis first — the decision rests on it.
Surprise question 'no' → goals-of-care conversation.
SDM: prognosis → values → options → deliberate → document → revisit.
Separate effective care (prognosis, symptoms, capacity) from preference (dialysis vs CKM, trial, withdrawal, place).
Present all options without bias.
Time-limited trial: explicit goals + GENUINE review date.
Withhold = withdraw (ethically and legally equivalent).
Withdraw when burden > benefit or capacitous patient requests.
After withdrawal: comfort care; death over days–weeks.
Symptoms: uraemia, fluid, pain (avoid morphine), breathlessness; palliative care early.
No capacity: advance directive → substituted judgment → best interests.
Honour culture/faith and family; NEVER abandon the patient.
19
Phase F · Level 19

Flashcards

CARD 1

Q. What is conservative kidney management?

Show answer

A. Active, holistic management of kidney failure without dialysis — symptom control, residual-function preservation, and psychological, spiritual, and family support.

DETAILED. It is a treatment choice, not the absence of care.

CLINICAL. Offer it as an active alternative, never as 'nothing more to do.'

CARD 2

Q. When may conservative management serve a patient better than dialysis?

Show answer

A. In the frail, multi-morbid, often elderly patient who values quality and place of life; it can match dialysis on quality of life and survival with fewer hospital days.

DETAILED. Dialysis in this group may prolong dying at real cost.

CLINICAL. Compare both honestly against what the patient wants.

CARD 3

Q. What are the steps of shared decision-making?

Show answer

A. Establish prognosis, elicit values and goals, present options without bias, deliberate together, and document and revisit.

DETAILED. The surprise question and frailty anchor the prognosis.

CLINICAL. It produces a decision the patient owns.

CARD 4

Q. Which decisions are effective care and which are preference-sensitive?

Show answer

A. Effective care: honest prognostication, symptom control, capacity assessment, non-abandonment. Preference-sensitive: dialysis vs conservative care, time-limited trial, withdrawal, place of care.

DETAILED. Provide the first; share the second.

CLINICAL. Don't offload effective-care duties or make values decisions for the patient.

CARD 5

Q. What is a time-limited trial of dialysis?

Show answer

A. Starting dialysis with explicit goals and a defined review date, agreeing in advance what justifies continuing or stopping.

DETAILED. It handles prognostic uncertainty without an open-ended commitment.

CLINICAL. It only works if the review is genuine.

CARD 6

Q. Why are withholding and withdrawing dialysis ethically equivalent?

Show answer

A. Both are decisions not to provide a treatment that does not serve the patient's goals; stopping is no different morally or legally from never starting.

DETAILED. The fear that starting can't be undone deters appropriate trials.

CLINICAL. Withdraw when burdens outweigh benefits or the patient requests it.

CARD 7

Q. How is care managed after dialysis withdrawal?

Show answer

A. Care becomes comfort-focused — treating uraemic and terminal symptoms with early palliative care — with death usually over days to weeks.

DETAILED. It is the withdrawal of a machine, not of care.

CLINICAL. Support the patient and family in the preferred place.

CARD 8

Q. How are decisions made when the patient lacks capacity?

Show answer

A. Follow an advance directive if it exists, then substituted judgment (what the patient would have wanted), then best interests — honouring cultural and religious values and involving family.

DETAILED. The family is central to substituted judgment.

CLINICAL. Decide with the family, never simply for or around them.

20
Phase F · Level 20

One-Minute Preceptor

SCENE 1
The intern who said 'nothing more to do'
GET A COMMITMENT“You told the family there's nothing more we can do if he doesn't dialyse — is that right?”
PROBE FOR EVIDENCE“He declined dialysis” — ask: “What does conservative kidney management actually involve?”
TEACH A GENERAL RULEConservative management is active care — symptoms, support, place of care — not the absence of treatment.
REINFORCE WHAT WAS RIGHTRespecting his refusal of dialysis was right.
CORRECT A MISTAKEReframe it for the family as an active plan and set up symptom control and palliative support.
SCENE 2
The resident who can't stop the trial
GET A COMMITMENT“The trial's goals weren't met, but you're continuing dialysis — why?”
PROBE FOR EVIDENCE“It feels wrong to stop something we started” — ask: “Is withdrawing really different from never starting?”
TEACH A GENERAL RULEWithholding and withdrawing are ethically equivalent; a time-limited trial only works if you honour the review and stop when goals aren't met.
REINFORCE WHAT WAS RIGHTSetting up a time-limited trial in the first place was exactly right.
CORRECT A MISTAKEHonour the agreed terms: withdraw and move to comfort care, supporting the family.
21
Phase F · Level 21

Reflective Prompts

Genuine tensions this volume has built toward; sit with them rather than resolving them too quickly.

  • Population evidence says dialysis adds little in the very frail, yet the patient before you is an individual who might be the exception. How do you honour both the data and the person?
  • Offering conservative management well requires believing it is a real treatment. How do you guard against the institutional reflex that equates 'no dialysis' with 'no care'?
  • Withholding and withdrawing are ethically equivalent in principle, but they feel different at the bedside. How do you help a team — and a family — act on the principle when the feeling resists it?
  • Substituted judgment asks what the patient would have wanted, but the answer is often reconstructed by others. How do you weight family interpretation while guarding against projecting their wishes, or yours, onto the patient?
  • This volume taught how to rescue the kidney in every preceding chapter. What does it take, as a clinician, to set those tools down when rescuing the kidney would not serve the person — and to call that, too, good medicine?
22
Phase F · Level 22

Board-Style Questions

Q 01
A frail 84-year-old declines dialysis for severe AKI. The most accurate description of conservative kidney management is:

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Q 02
Which is a preference-sensitive decision rather than effective care?

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Q 03
A two-week time-limited trial of dialysis ends with the agreed goals unmet and the patient deteriorating. The correct action is to:

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Q 04
How do withholding and withdrawing dialysis compare ethically and legally?

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Q 05
A patient with full capacity asks to stop long-term dialysis after developing a terminal illness. The team should:

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Q 06
What anchors a goals-of-care decision in severe AKI?

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Q 07
Across 100 very frail, elderly patients, choosing dialysis over conservative management typically yields:

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Q 08
A patient without capacity and no advance directive needs a goals-of-care decision. The correct basis is:

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Q 09
Whatever path a patient with severe AKI chooses, the constant commitment is:

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