Category Archives: After-care

Having a good death in our ICU



What is a good death?

(Andrej Michalsen)

‘Decent farewell’

  • End of life without pain (not force-fed but without thirst; medication for pain, anxiety, dyspnoea; comfortable positioning)
  • Comforted, peaceful (secure as to personal cultural, spiritual and religious values)
  • With dignity and respect
  • Closeness to family (potentially difficult if absent / estranged/ also feelings of guilt or pressure in relatives for contributing to medical decisions)


Challenges and pitfalls

  • Blurred language used around death / dying
  • Cultural negligence
  • Irresoluteness of healthcare team and burden of unnecessary suffering (by not making a decision on extent of treatment)


There is often conflict between doctors and nurses about a dignified death, and also between family and medical team about what treatment is / isn’t indicated (any treatment given has to be given willingly by a healthcare professional)


Good end-of-life care for patient and family

(Dominique Benoit)


More aggressive ICU care at EOL over last decades (associated with guilt and depressive symptoms in family afterwards); 10-30% pts on ICU are receiving excessive care and will not be alive in 1 year

Outcome in patients perceived as receiving excessive care across different ethical climates: a prospective study in 68 intensive care units in Europe and the USA


Goals of good EOL care:

  • Shift from cure to care, holistic, dignified, responsive to spiritual/emotional needs
  • Sensitive, timely, open communication
  • Interdisciplinary collaboration
  • Being able to spend time with family / die at home if possible
  • Overall is protective of patient AND the family


CAESAR (CAESAR: a new tool to assess relatives’ experience of dying and death in the ICU.)

  • tool to assess relatives’ experience of death and dying in the ICU
  • 3/6/12 mths
  • Anxiety / depression / complicated grief / PTSD



Quality of death affected by timeliness of clinical decisions, this should be part of the aim of treatment!


Up to 80% pts wish to die at home

  • palliative care referral to facilitate when feasible
  • Very Uncommon occurrence in reality
  • Advanced directive helpful
  • Also responsibility of referring team PRIOR to ICU admission


Which conflicts to expect at the end-of-life?

(Hanne Irene Jensen)


Good ICU death is possible. Conflicts:

  • No psychological support
  • Suboptimal decision-making process
  • Suboptimal symptom control
  • Patient +/- Family preferences disregarded
  • Futile treatment
  • EOL decision made too early or late

Prevalence and factors of intensive care unit conflicts: the conflicus study.


Majority of conflicts believed to be preventable


Most common conflict between doctors and nurses: both acting to different goals, but think it is in the patient’s best interests – effect of personal perceptions and preferences


Conflict between pt and family – pt with capacity may need help mediating with family if different views; pt without capacity but with advance directive (when was it written and is it still in keeping with family’s perceived wishes of the pt?)


Consequences of conflicts

In practice:

  • Communication and shared decision-making
  • In complex situations, discuss between referring team + ICU, agree on best management then speak to pt /family (avoid presenting conflicting views)
  • Conflicts can escalate – seek communication early +/- mediation if necessary


Withholding therapies: Ethical and legal aspects

(Andrej Michalsen)


Epidemiology of withholding and withdrawing treatment:


A treatment is appropriate when it is both INDICATED and CONSENTED

Indicated Consented Appropriate
Yes Yes Yes
Yes No No
No Yes / No No
Indicated Demanded Appropriate
No Yes No


Ethically, withholding is equivalent to withdrawing treatment, as supported by many critical care societies and regulatory bodies

  • psychologically it may be harder to withdraw than withhold
  • if treatment no longer needed, stop giving it
  • if significant doubt about prognosis, treatment trial may be helpful (look for improvement / deterioration within relatively short period, not a prolonged number of days)
  • helpful to discuss Morbidity and QOL with pt and family in specific terms e.g. being able to sit down at table for dinner / engage in hobby


Global variability regarding limitation of life-sustaining therapy i.e. No withdrawal bundles as such – depends on individual and on team


No common morality – there will always be some tension between what we think is ethical and what someone else believes


Legal stipulations vary across and within countries

  • prioritising pt-related clinical factors over stipulations can have severe consequences


Everything is easier with a more human environment

(Maria Cruz Martin Delgado)


Pts often experience depersonalisation during prolonged admission



Early assessment for Palliative care needs can alleviate suffering in critically ill pts

  • ideally, if unfit for aggressive treatments – transfer to acute palliative care units / hospice / home


A mixed model combining primary care of ICU physicians with specialist palliative care physician input can help, although this rarely occurs in practice


Palliative care in intensive care units: why, where, what, who, when, how


Humanising ICU care

‘Open’ ICU

  • flexible hours / open-doors policy
  • also removal of unnecessary barriers (masks, gowns, gloves)
  • visits from children with appropriate support and supervision by psychologist if available


  • New media tools to allow long-distance communication with empathy, compassion and intimacy
  • Augmentative and assistive communication strategies for those who cannot speak / write
  • Family conferences with medical team (often fragmented and limited by time)

Wellbeing of pt

  • At the least, need to address the basics of pain / thirst / temperature / noise / rest / positioning comfort / speech / isolation / vulnerability / privacy / lack of information
  • Reassess as situation progresses – dynamic

Presence and participation of family

Caring for the healthcare professionals

Caring for pt and family after ICU

Education in ICU Palliative Care


How do I humanise patient care?

Image result for Humanising

(Nancy Kentish-Barnes)

Critical illness and ICU environment (culture, priorities and architecture) have significant impact on patient and relatives


Arriving in ICU

  • Signs / way-finding systems (Davidson Crit Care Med 2007)
  • Waiting: initial communication and reassurance, estimating time before pt is ready for visit
  • Seeing pt: touching / talking to pt – encourages togetherness
  • ICU team: introduction, name badges
  • Place: privacy, natural lighting, furniture, positive distractions (art or photos to personalise room), clock (visible to pt)

Patient experience

  • Discomforts: question pt, noise from alarms and verbal communications
  • Thirst bundle (oral swab, cold water spray, lip moisturiser (Thirst Bundle – Puntillo ICM 2014)
  • Restraint alternatives (bed net, sleeper bag, surveillance)
  • Psychological distress: music, 5-minute foot massage, relaxation / hypnosis
  • Technology: look at patient before machines, eye contact, empathy


  • Lack of agency: encourage pt choice to promote sense of control over decisions and own body
  • Lack of memory: Post ICU burden include nightmares, memories
  • ICU diary: multiple contributors, factual narrative, written messages of caring, transparency


  • Vulnerable relatives: anxiety, depression common, understand 50% of medical info
  • Visiting policy: prolonged time in waiting room prevents relatives from leaving ICU to self-care, worry re pt welfare / transparency when they can’t see pt
  • Child visits: Adapted leaflets for children, also to guide ICU team, child psychologist


  • Communication: by far non-verbal cues are picked up over words; family-support pathway (daily nurse communication and at least 2 multidisciplinary team-family meetings)


  • Relatives participation in care: listen to pt, relatives


Leaving ICU

  • Ward transfer: positive indicator of progress but anxiety/stress due to reduced presence of healthcare team
  • Information in anticipation of ward environment: written, family conference, video


End-of-life in ICU:

  • Pt’s wishes, spiritual support, family needs
  • Acknowledge emotions, elicit questions, understand pt as a person
  • Discontinue unnecessary monitoring, tests and treatments
  • Increases satisfaction and trust
  • Decreases risk of PTSD, anxiety and depression following death


In practice, for units that have not specifically adopted ‘humanising care approach’, start by creating an ICU workgroup to create a dynamic around humanisation – this allows addressing of staff concerns e.g. visiting policies / timing of EOL care etc.

LIVES 2018 – Johannes Mellinghoff – Patient Outcome in ICU

Mr Aidan Baron interviews @JMellinghoff

Johannes is a Senior Lecturer within the School of Nursing at Kingston and St George’s University London, United Kingdom.
Johannes’s academic interests are in the area of outcome and process management of patients admitted and discharged from Intensive Care Units. Over the years he has participated in interventional & observational research trials focusing on neurological outcomes, family satisfaction and hemodynamic monitoring.

He is an elected member of the Nursing & Allied Healthcare Professional Committee of the European Society of Intensive Care Medicine and active member in the congress committee which organises the yearly scientific affairs.
Takeaway points:
• 15 minutes of BRIGHT light in the morning
• We don’t know how ICU lighting is impacting staff
• There are serious impacts on older people and their families after discharge from ICU.

How do I estimate the chances of survival? State of the Art Session


Risk assessment: The basics

(Hannah Wunsch)

Risk models usually incorporate age, co-morbidities, diagnosis, some form of vital signs (perhaps leave out physiology for simplicity)


Current models balance pragmatism and need for certain data; creating a good risk assessment model is hard (include a statistician!)


Often missing:

  • Patient preferences for care e.g DNR, choice to withdraw
  • Physician autonomy choice to withdraw
  • Support availability upon discharge e.g. family, care system


Small changes to things like outcome choice can have an impact


External validation of severity of illness models

(Hannah Wunsch)


External validation is important

  • describe severity illness in quantifiable way
  • knowledge of care in a hospital / region
  • ability to compare outcomes
  • assess changes in care


External validation will show if model performs well in other places / datasets

  • discrimination (ability of test to correctly classify those with and without disease/outcome)
  • calibration (whether or not the observed event rates match expected event rates in subgroups of the model population)


Don’t blame quality of care / case mix / decision-making before investigating why external validation is not working


Take into account any upstream issues (unrelated to ITU care itself) causing data to ‘appear different’ from expected

e.g. delay to ITU admission might mean more / better care while pt still on ward

e.g. transfer to Long Term Acute Care hospital for pt to die (hospital mortality rate looks better)


Consider Recalibration, and ask Why recalibration is needed… but sometimes a model truly isn’t good enough to use



Predicting Quality of Life in survivors

(Philipp Metnitz)


Focus on health aspects – function and feelings / wellbeing


>200 articles and >200 instruments published: numerous unique instruments available

– 29% articles used Baseline assessment of QOL

– 63% articles used Short Form-36; 19% used EQ-5D-3L


Short Form-36: patient-reported, 36 item survey covering physical / emotional / social functioning, mental health, pain, health perceptions


EQ-5D: health state description (mobility, self care, usual activities, pain, anxiety/depression) and evaluation using VAS


Physical QOL impacts on return to work, carer burden, cost to care system


Physicians tend to be over-optimistic in predicting QOL with approx. 30% error



Long term cognitive impairment in ICU survivors

(Arjen Slooter)


Cognitive impairment after intensive care unit admission: a systematic review. (Wolters et al., Intensive Care Med 2013; 39:376-86)

  • 19 studies
  • heterogeneous population (elderly, ARDS, sepsis)
  • duration of follow up 2months – 13 yrs)
  • variation in tests applied
  • limitations – no premorbid baseline, no correction for educational level


Cognitive impairment frequent (11-62%)

  • impairment depends on Pre-admission function
  • duration of delirium related to cognitive impairment


Mechanisms in sepsis:

  • neuroinflammation (this persists in the older brain where microglia are pre-primed)
  • microcirculatory changes, hypotension, microthromboses/haemorrhages, endothelial dysfunction
  • increased NO activity
  • viral reactivation through immunosuppression (CMV / HSV)


Assessment currently:

  • Neuropsychological test with neuropsychologist in clinical setting (artificial situation)
  • Cognitive complaints (subjective based on emotional state, may not relate to ADL impairment ß most important aspect!)


Future assessment:

  • Functional testing e.g. shopping in supermarket using Virtual Reality (requires language, attention, memory, executive function)
  • VR can also be applied to training in tasks à directly relevant to patient’s ADLs



Predicting outcome one week after admission

(Dylan W. de Lange)


Assessing severity of illness with scoring systems: is the trend of repeated scores over time more relevant than the magnitude of a single score?


Designing a model for ICU pts staying > 7 days to predict 1-year mortality and QOL (EuroQOL-5D form to pts post-discharge)


Simple (can be used bedside) vs Detailed model: helps ‘gut feeling’ about pt for shared decision making with pt and family (but not very helpful for individual prognostication)