A young patient with a relapsed, refractory haematological malignancy was advised review with palliative care. He was having severe pain and weakness in both the legs, which had been attributed to disease progression. He was subsequently started on symptom directed treatment.

While his pain improved, his disease seemed to have worsened and it was time to revisit the ceiling of care. His mother who had broken down irrevocably after hearing about his prognosis, had been candid about her preference for not admitting the patient to the ICU. However the patient’s resilience and retained capacity vouched for him an as active participant in the decision making process.

The question of capacity has been an intriguing one and has challenged my interpretation of palliative care principles time and again. It has also demanded a close exploration of existing literature on the subject and a lot of it continues to remain unsaid.

I had been informed about the deterioration in his general condition prior to the review, that he had tachypnoea and tachycardia.

The conversation at the patient’s bedside proceeded as follows

Enquiries were made about the name, address, general well being and understanding of the situation.
Was he in pain?
Had he passed stools today?

The questions then proceeded towards informing him that his prognosis was poor and that escalation of care at this point in his trajectory (that of relapsed recurrent disease with his declining counts and increasing symptom burden) was potentially inappropriate and expected to be associated with poor survival.
Poor outcomes with Cardiopulmonary resuscitation were also explained.

When asked whether he would have liked to go the ICU – the answer was no

When asked what would happen if his heart was not restarted after it stopped functioning, he said that he would like to be on a ventilator.

When asked again what if his heart was not started after it stopped beating – he said that he was aware he would die.

When asked what should be done if his heart stopped beating – he muttered ventilator.

The mother who was at the bedside and seemed thoroughly distracted was able to muster up some courage and stay put on no ICU admission.

This exchange raised multiple questions about the nature of capacity.
Was my conversation suggestive of intact capacity or had an important question integral to capacity determination been missed.

What about capacity in the ICU setting? What if an otherwise sedated patient wakes up and appears lucid for a certain period of time, does he possess capacity to take part in medical decision making.

What if the patient with a deterioration in his general condition, with drowsiness, answers a set of questions, correctly but keeps coming back to answering ventilator (as above)?

Can one be sure that he understands the repercussions of his decision or is it merely preservation of the self that kicks in?

What happens in his head in that fraction of time between any two sets of successive questions (both pointing towards an outcome that he has been dreading but would like to fight nevertheless?). Does this appear to go against the dictum that repeatability ought to be assessed, that the patient should be able to understand and repeat whatever he has been spoken to about.

What is the effect of religious doctrines on this discussion? These ideologies which have been fed to the believers both consciously and sub-consciously are bound to come to the fore. There are very few individuals who are prepared to accept the issue of their impending death with silence and this response might also be considered as a valiant fightback against their imminent extinction.

How does one address the patient’s father who does not resist signing the ceiling of care but continues to demand component transfusion – has he really understood what comfort-focused care means or are these boundaries in danger of getting blurred in advanced haematological malignancy? That there might be other causes of breathlessness such as infection, leucostasis or cardiac involvement and that correction of anaemia might not be a solution. Some might consider the presence of tachypnoea and tachycardia as pointers in support of utility for transfusion.

Was the rapidity of the clinical decline an indicator that disease progression was to be considered the underlying driver?

Out of the four components of capacity determination – understand, retain, weigh, communicate – on how many premises had the patient failed – one or two?

Was the refusal to accept death to be considered a valiant, perhaps short-lived fight back or the absence of comprehension?

Capacity may be decision specific – did he have capacity for refusing ICU admission but not for refusing CPR?

What is the importance of completing another assessment at the bedside? Do we really have time for another assessment?

The UK setting clearly states that the retention only be long enough in order for the decision to be made. Section 3(3) of the Mental Capacity Act states that the fact that the person is able to retain information for a short period only does not prevent him from being regarded as able to make the decision. A person may retain information for a short duration of time (few minutes) and make a decision within that window.

The decision for ventilation could have been separate from that of CPR, however the fact that both would require ICU admission, and would go against the ceiling of care (maximal ward based management) requires further scrutiny.

Brief retention does not mean loss of capacity.

The fact that understanding and decision did not coincide might not imply loss of capacity.

Disclaimer

Artificial intelligence tools have been employed for conceptual engagement and language refinement. They do not replace critical scholarship, clinical experience, or editorial judgment. Final responsibility for all interpretations, factual accuracy, originality of synthesis, and the quality of the published material rests entirely with the Founder and Editor.