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.