The WELPICUS study group have used an interesting approach (using the Likert scale to assess a number of statements) to try to gain international consensus (from more than 30 countries) on what matters in end of life care in the ICU.
Autonomy and decision making
There was considerable support for respecting advanced directives (AD), but not necessarily for doctors to encourage patients to write them. There is little current use AND low medical adherence. Patients with capacity may change their mind. Don’t break the law to follow an AD! So, know the law.
Decision making and capacity key elements reaffirmed.
- Possession of necessary values,
- ability to communicate and understand,
- ability to reason.
Strong support for 3-tier model:
- Autonomous decision making where possible;
- Acknowledge previously communicated views when capacity is lost;
- Elsewhere, act in best interests.
Capacity is felt to be conditional – ICU collects complex cases and complex decisions for which a basic level capacity may be insufficient. (America/Europe historical disparity on this is lessening). Patients known preferences trump relatives preferences.
Gain consent for invasive procedures when possible.
Use shared decision making
Large international variation in involvement of surrogates in decisions about EOL. Europe very keen on shared decision making.
Life-sustaining treatments
Consensus gained on withdrawal of treatment when chances of surviving are very low or patient’s wishes against it are known. Includes CPR!
Not yet complete consensus on details of withdrawal/withhold/palliative issues due to legal issues in various countries. Again, know the law!
Decisions regarding end of life care should be made in by the multi-disciplinary ICU/home team AND in discussion with patient/family.
The intent must never be to shorten life, even if this is allowed by law.
Brain death
Near consensus on discontinuation of all therapy after BD. If the family does not accept brain death then most countries allow discontinuation anyway, but if their wishes are honoured then the patient is NOT required to remain on the ICU.
Palliative care
Physical, social, spiritual and emotional needs attended to – in order to facilitate as much autonomy as possible.
Inadvisable actions
Non-beneficial treatments and investigations should be avoided. Difficulty with what ‘beneficial means’.
Documentation
Document decisions and their rationale.
Education
Everyone needs educating and teaching should be culture/law/religion specific.
Clinical ethics committees
These committees can be useful for advice where opinions differ.
Uncontested statements
Keep families included, informed and happy
Maximise life-saving but bear in mind long-term QOL
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The global mind-set on end of life principles appears to be converging but some interesting differences remain.
Emphasis on shared-decision making is evident.
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Personally, I find the comments about ‘very low chance of surviving’ unhelpful. On the whole we can make death on the ICU humane and largely dignified. But, in many cases we don’t have reliable markers of long-term outcome for individuals. We know that it almost always ends badly but to aim for the improbably tiny ‘bulls-eye’ of a good outcome you risk hitting the far larger surrounding zone of drawn-out death or unacceptable quality of life.
Consequently I often find, in discussions with patients and families regarding withdrawing, withholding or limiting treatment that the following elements need to be explained:
- Death is most probable whatever we do.
- There may be a tiny chance of survival, but…
- what is much more likely, if we continue aggressive treatment, is that death will be protracted and potentially unpleasant or the quality of long-term health will be (unacceptably?) low.
Any advice on handling these discussions?
