Having a good death in our ICU

 

family_about_bed_landscape-mr

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

IMG_0661

 

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

IMG_0663

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

Communications

  • 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