Management at the end of

lifeDr Katalin Urban

Staff Specialist in Palliative MedicineConcord Hospital

• How do these patients die?• What is a ‘good death’?• Diagnosing dying• Communication• Symptom management

‘Catherine’• 83 yr old woman• ESKD due to T2DM• On APD for 4 years – no complications• PMH:

o IHD, previous stentingo PVD – left fem-pop bypasso OA

SH• Lives with very supportive daughter (assists with

APD)• Independent with ADLs and mobility• QOL related to being at home with family• Daughter assists with shopping and cooking• Widowed 12 years prior• From the Philippines• Catholic, strong faith

• Presented with right calf ulcerating lesion• Very painful• Causing reduced mobility• Suspicious for calciphylaxis

o Confirmed on biopsy

• Patient declined haemodialysis• PD optimised• Commenced on sodium thiosulphate• Vascular team consulted

o Suggested amputationo Patient reluctant – requesting alternativeo Debridement with VAC dressing to lesiono IV antibioticso Noted at the time also poor blood supply to left foot with

ischaemic toes

• Further breakdown of wound• Increasing pain• AKA recommended – however patient refused,

accepting only BKA• Patient now bedbound for 1 week

• Palliative care consulted for pain management• Regular hydromorphone commenced• Family meeting suggested

• BKA failed with further wound breakdown and ischaemia

• Return to theatre twice for debridement and VAC dressing change

• Patient continuing on PD, for ‘all active measures’• Concern about hydromorphone due to increased

drowsiness – dose reduced

• Family meeting organised – daughter and granddaughter present

• Patient unwilling to participate due to distress and poor performance statuso Bedboundo Drowsyo Poor oral intakeo Some mild confusion

• AKA recommended as only hope for return home with prosthesis and pain control

• Palliative care team suggested alternative of no further surgery, focus on comfort given dire prognosis of condition, consider discharge with support

• “How can we do nothing and consign this woman to certain death?”

• “There is a chance she can have rehab and get a prosthesis”

• Proceeded to AKA• Patient deteriorated overnight, MET call• Decision made that ICU inappropriate• Died early morning in 4 bedded room on ward

o Daughter present

Outcome• >5 weeks spent in hospital• Patient went to theatre 5 times• Multiple IV access • Daily blood tests• No EOL medications charted• Psychosocial and religious needs not addressed

Barriers• Prognosis not discussed with patient• Failure to have discussions in clinical teams about

the need to transition to palliative care• False hope of cure/recovery• Difficulty of ‘standing back’ in acute situation and

reviewing the whole clinical course• Professional hierarchies• Fear of causing distress/removing hope

The ‘how’• Sudden death• Withdrawal from dialysis

o ‘social’o ‘medical’

• Death in patients on a conservative pathwayo From renal failureo From other causes

• Death from a major non-renal sentinel event

The 37th Annual ANZDATA Report

(2014)

HD PD Tx0%

10%20%30%40%50%60%70%80%90%

100%

OtherInfectionCancerWithdrawalCardiovasc

Deaths on HD by age group

0-44 45-64 65-74 75+0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

otherinfectioncancerwithdrawalcardiovasc

Reasons for withdrawal

(ANZDATA)Reason HD PD Tx

psychosocial 171 28 8

Refused further Tx

10 2 0

suicide 5 0 2

Cardiovasc co-morb

94 12 3

Cerebrovasc co-morb

36 11 2

PVD co-morb 50 13 1

Malignancy 90 14 2

Access issues 18 3 0

Withdrawal• Rates vary across studies• Many definitions

o Any death where a decision was made to stop dialysis

o Deaths with evidence of uraemiao Deaths >3 days after last HD/>7 days after

last PD

o E Murphy, MJ Germain et al ‘International variation in classification of dialysis withdrawal: A systematic review’ Nephrol Dial Transplant (2014) 29:625-635

Suggested classification

• Death preceded by withdrawal o Patient choiceo No other significant medical problemso Active decision by patient

• Death preceded by withdrawal + other causeo Shared decision due to significant other medical problemo High co-morbidity/frail patient

• Death on dialysiso No decision to withdraw

• E Murphy 2014 Nephrol Dial Trnasplant

A ‘good’ death?• Symptoms well managed• Being in control• Preparation for death• Avoid prolongation of dying• Relief of burden on loved ones• Strengthening relationships• Emotional support (pt and family)

• T Hughes et al ‘Confronting Death: Perceptions of a Good Death in Adults With Lung Cancer’ Am Journal of Hospice & Pall Med (2008) 25(1):39-44

• KA Kehl ‘Moving Toward Peace: An Analysis of the Concept of a Good Death’ Am Journal of Hospice & Pall Med (2006) 23(4):277-286

Diagnosing dying• Culture of hospital is focus on cure and life

prolongation

• Many deaths of renal patients occur during hospital admission, high rates of ICU

• Dying often not recognised• Hope for recovery• Fluctuating trajectory

• Can lead to a poor deatho Patient/family unpreparedo Inappropriate interventions near the end of lifeo Inadequate symptom management in terminal

phaseo Inability to chose place of deatho Inadequate attention to

spiritual/social/psychological needso SP McAdoo, EA Brown et al ‘Measuring the quality of end of life management

in patients with advanced kidney disease: results from the pan-Thames renal audit group’ Nephrol Dial Transplant (2012) 27:1548-1554

Consider…• Disease activity • General functioning• Nutritional state• Specific clinical parameters• MDT/nursing input

• Palliative vs Terminal phase

Diagnosing dying• Semi-comatose• Unable to take fluids• Unable to take tablets• Bedbound

• Tends to occur 24-48 hours before death

• J Gibbins et al ‘Diagnosing dying in the acute hospital setting-are we too late?’ Clin Med (2009) 9(2):116-119

Time to death from

diagnosis/anticipation of dying in

inpatients

Hours Number of cases

<12 32

13-24 17

25-36 17

37-72 17

>73 17

• Some active management can continue alongside

symptom management and planning for end of life care

• Requires honest discussion with patient/family and acknowledgement of uncertainty

• If dying is diagnosed too early, the patient will live on (provided care is proportionate and matched to symptoms)

Communication• Communication with patient and family essential• Poor communication is the most common cause

of complaints• Aligns health care team and patient/family

expectations• Enables discussion of preferred priorities of care

o Avoid inappropriate interventionso Prepare for deatho Patient can die in accordance with their wishes

Discussing EOL issues

• Clinicians need to provide information in a way that assists patients/families to: o make appropriate decisionso understand the potential outcomes of treatmentso be informed to the level that they wisho set goals and prioritieso cope with their situation

Barriers to good communication

• Lack of experience with death and dying• Insensitivity to the situation

o interrupting communicationo not allowing patients and their families the opportunity to express their

own views

• Fear of eliciting emotion• Fear of not being able to answer a question• Disagreeing with patient/family decision• Personal grief issues

General communication skills

• Ensuring privacy and time• Interpreter if required• Allowing patient to choose who is present• Open questions to start• Allow patient to talk• Empathy• Ask what is their biggest concern• Cultural sensitivity

Ask-tell-ask• Ask:

“What is your understanding of what is happening with your illness?”

• Tell: o Provide information in a straight forward wayo Use clear languageo Only three facts at a time, then pause, check ino Be honest without being blunto Avoid giving more details than desired by the patient

and/or family

• Ask: o Check if the person has understood what has been

discussedo Consider caregiver’s distinct information needs

Accept, validate and acknowledge emotions and concerns

• Name (suggestion not declaration)

“I wonder if you are feeling angry..”

• Understand“Sounds like this has been a really difficult time”

• Respect “You’ve been doing a wonderful job caring for your mum”

• Support“Our team will be here to support you”

• Explore“How are you feeling about what we have discussed”

“What worries you the most about this”

Common Pitfalls• Talking only about physical issues• Avoiding/not picking up emotional cues• Giving premature reassurance

(before ensuring you understand what is upsetting the person)

• Minimizing or blocking concerns• Interrupting patient• Using jargon

Authors: Josephine ClaytonKaren HancockPhyllis Butow Martin TattersallDavid Currow

Funding: NHMRC Strategic PC Research Grant

Key recommendations: PREPARED

• Prepare for the discussion

• Relate to the person

• Elicit understanding & preferences

• Provide information

• Acknowledge emotions and concerns

• Realistic hope

• Encourage questions

• Document

Specific treatments - ‘no CPR’ orders

• Unfortunately often done in situations where a patient is deteriorating eg at MET calls

• Better done in advance when patient is not in crisis and there is time to discuss this properly

• Ideally involving next of kin and senior clinician

CPR…• Should not be discussed in isolation• Part of a larger discussion about prognosis and

goals of care• IF CPR is judged to be clinically futile do

NOT ask the patient/caregiver “what do you want done” when the patient arrests/dies, as this creates inappropriate burden of choice

• Rather give clear recommendations about care during the dying process

CPR• Can be helpful to discuss three broad treatment

pathwayso Restorativeo Palliative o Terminal

• Then explain which is appropriate, likely to lead to acceptable quality of life and aligns with patient values

• Specific discussion may not be required if dying and a good death are openly discussed

Don’t forget• Pre-emptive discussion around nutrition and

hydration can prevent family distress

• Different information needso Some people will want to know what to expect in greater

detail

• Ask about spiritual/religious needs

Symptom management• Symptoms common in ESKD

• Can increase towards the end of life

• Renal death no longer thought to be an ‘easy death’

Symptom management• Many unnecessary treatments/investigations may

be ceased

• Some treatments should continue as long as possibleo Fluid and salt restrictiono Anti-anginalso Diuretics

• Anticipatory prescribing for common symptoms at the end of lifeo Paino Dyspnoeao Agitationo Myoclonuso Nausea

• Supportive Care for the Renal Patient Second Edition 2010 Oxford University Press

• Guidelines for prescribing for common symptoms at the end of life on St George Renal website

• https://stgrenal.org.au

• Consensus among palliative care physicians regarding 4 essential drugs for management of symptoms near the end of lifeo Morphineo Midazolamo Haloperidolo Anti-muscarinic

o O Lindqvist et al ‘Four essential drugs needed for quality care of the dying: A Delphi study based international expert consensus opinion’ Journal Pall Med (2013) 16(1)38-43

• Adjustment may be required in patients with CKD

• Pharmacokinetics• Increased permeability of BBB

Pain• Important to continue any regular pain relief

o May require a change of route

• PRN analgesia by a parenteral route should be charted even if patient not in pain

• Preferred opioids include fentanyl, methadone or hydromorphone

• Pain of rejected kidney or uraemic pericarditis may respond to steroids

• Clonazepam may assist with neuropathic pain

o H Hughel ‘Clonazepam as an adjuvant analgesic in patients with cancer-related neuropathic pain’ Journal of Pain and Symp Manag(2003)26(6):1073–1074

Pain• Intermittent pain

o Hydromorphone 0.25mg s/c prn q2ho Fentanyl 12.5mcg s/c prn q1h

• Constant paino Regular hydromorphone q4ho Fentanyl via syringe driver

• Already on strong opioido Continue if possibleo Convert to suitable opioid

Opioid conversionDrug Equivalent dose

(po)Equivalent dose (parenteral)

morphine 10mg 5mg

hydromorphone 2mg 0.6-1mg

oxycodone 6mg 3mg

fentanyl N/A 0.05mg

tramadol 100mg N/A

Fentanyl• Metabolised in liver• No active metabolites• Not dialysed• If patient on fentanyl patch – continue• Not ideal to start in the dying phase…

o Risk of toxicity in opioid naïveo Takes ∼12 hours to become effectiveo Difficult to titrate

• Can be used prn or in a syringe drivero Very short acting so cannot be used q4hourly

Hydromorphone• Metabolised in liver• H3G (active metabolite) renally excreted and can

accumulate• H6G neuro-excitatory in rats• Much better tolerated than morphine in ESKD• Start low, careful monitoring

Methadone• Potent Mu agonist as well as MAO/5HT3 reuptake

inhibitor and NMDA receptor antagonist• Metabolised in liver via CYP3A4• Mainly excreted via faeces and urine

o But does not accumulate in renal failure

• Metabolites not clinically significantly active• Use challenging due to complex pharmacokinetics

and risk of accumulation

• MP Davis and D Walsh Support Care Cancer 2001

Dyspnoea• Non-pharmacological measures

o Positioningo Fano Pursed-lip breathing

• Oxygen• Opioids at 25-50% of analgesic dose• Benzodiazepines for associated anxiety• Consider GTN/diuretics/ultra-filtration

Secretions• Retained secretions can be

distressing to observeo Educationo Re-positioningo Ensure no increased WOBo Anti-cholinergic drugs…o Antibiotics?

Anti-cholinergics• Glycopyrrolate often used

o Does not cross BBB

• Evidence for use of anti-cholinergics in terminal secretions is poor

• May stop upper airway secretions from worsening but won’t get rid of them

• Won’t treat secretions due to infection or overload• Potential for side effects

o Dry moutho Constipationo Urinary retention

Restlessness/agitation• Treat any potential cause

o Paino Constipationo Urinary retentiono Spiritual issues

• Benzodiazepineso Anxietyo Myoclonus

• Antipsychoticso Confusion/deliriumo Hallucinations

Haloperidol• Delirium and uraemic nausea• Hepatic metabolism• Renal excretion of metabolites• No dose reduction required• 0.5-1mg s/c prn bd-tds• Can put into syringe driver

Midazolam• For agitation/anxiety• Consider for pruritus if unable to swallow• Hepatic metabolism

o But may require some dose reduction due to BBB permeability in ESKD

• 2.5-5mg prn s/c q4h• BUT short half life• If required regularly – syringe driver• If no SD – consider clonazepam

Nausea and vomiting• Continue anti-emetics – change route• Haloperidol prn for nausea related to uraemia• Metoclopramide if gastric stasis• Levomepromazine• Caution with cyclizine

o But can cause cardiac problems and dry mouth, also neuro-excitatory

• Mouth care• Bowel care

Levomepromazine• ‘Dirty drug’ - Multiple receptor activity

o Dopamine antagonisto Anti-cholinergico Histamine antagonist

• Very sedating• For refractory terminal agitation• 12.5-50mg bd-tds (max 200mg/24hours)

‘Tom’• 66 yr old man• ESKD due to T2DM (on insulin)• In centre HD 3 times a week since

2009 via L forearm AVF• Referral to Renal Supportive Care

clinic for symptom management January 2015

PMHo IHD, previous CABG, re-stenosis and stenting

August 2014, no further intervention possibleo Moderate aortic stenosis o PE 2006o Osteoarthritis, bilateral THRo Previous septic arthritis of right shouldero GORD and achalasiao Depression

Initial symptomso Frequent angina on minimal exertiono Chronic bilateral hip paino Painful peripheral neuropathyo Exertional dyspnoeao Syncopal episodes when using GTN sprayo Constipationo Distress +++

ManagementoGabapentin 300mg dailyo Fentanyl 25mcg/hr patchoHydromorphone 2mg po prno Sertraline 100mg dailyo Lorazeapm 0.5mg tds and prn

Also taking…• Perhexiline 150 mg bd• Pantoprazole 40 mg daily• Nicorandil 10 mg bd• Ivabradine 7.5 mg bd• Clopidogrel 75 mg mane• Calcitriol 0.25 µg mane• Atorvastatin 40 mg nocte• Aspirin 100 mg daily• Lanthanum 1g tds• Lantus 36u nocte• Movicol 1 sachet bd

ACP• Good insight into situation• Goals:

o Symptom controlo Time with family

• Continue HD for now…but thinking about when to stop

• Treat reversible things• Not for ICU/inotropes/intubation/CPR• Prefer hospice death

Progress• Over the next 2 months:

o Crescendo anginao Several syncopal episodeso Increased fatigueo Worsening mobilityo Requiring increased care from wife

April 2015• Patient decided to cease HD• Discussion with patient, family, palliative care

and renal teamo Patient deemed competent, not depressed

• Admission to Palliative Care ward 2 days after last HD

• Analgesia titrated, medications rationalised• PRN EOL meds charted• Psychologist and SW input for pt and family

• Deterioration over 3 days• Bedbound• Difficulty swallowing oral medications and food

o Family distressed by lack or oral intake and requesting nutrition/hydration

• Drowsy• Becoming agitated

o Requiring midazolam 2.5mg 3-4 times/24 hours

• Examination revealed a firm tender mass in the lower abdomen

• Bladder scan requested - >500ml (!)• IDC placed• Agitation improved

• Catholic priest attended as per patient and family wishes

• Died peacefully with family present

Conclusion• Renal patients frequently die in hospital• A good death starts with the diagnosis• Communication is essential• Anticipatory prescribing• Patient and family education/counselling

References• The 37th Annual ANZDATA Report (2014)• E Murphy, MJ Germain et al ‘International variation in classification of

dialysis withdrawal: A systematic review’ Nephrol Dial Transplant (2014) 29:625-635

• SP McAdoo, EA Brown et al ‘Measuring the quality of end of life management in patients with advanced kidney disease: results from the pan-Thames renal audit group’ Nephrol Dial Transplant (2012) 27:1548-1554

• T Hughes et al ‘Confronting Death: Perceptions of a Good Death in Adults With Lung Cancer’ Am Journal of Hospice & Pall Med (2008) 25(1):39-44

• KA Kehl ‘Moving Toward Peace: An Analysis of the Concept of a Good Death’ Am Journal of Hospice & Pall Med (2006) 23(4):277-286

• EA Brown ‘Quality of life at end of life’ Journal of Renal Care (2012) 38(Suppl 1)138-144

• AH Moss, NC Armistead ‘Improving end-of-life care for ESRD patients: An initiative for professionals’ Nephrol News Issues (2013) 27(10)30-32

References• LM Cohen, MJ Germain ‘Measuring quality of dying in end-stage renal

disease’ (2004) 17(5):376-379• J Gibbins et al ‘Diagnosing dying in the acute hospital setting-are we too

late?’ Clin Med (2009) 9(2):116-119• RL Thomas et al ‘Goals of care: a clinical framework for limitation of

medical treatment’ MJA (2014) 201(8)452-455• H Hughel ‘Clonazepam as an adjuvant analgesic in patients with cancer-

related neuropathic pain’ Journal of Pain and Symp Manag(2003)26(6):1073–1074

• O Lindqvist et al ‘Four essential drugs needed for quality care of the dying: A Delphi study based international expert consensus opinion’ Journal Pall Med (2013) 16(1)38-43

• Supportive Care for the Renal Patient Second Edition 2010 Oxford University Press