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The dilemma of patients or family refusing to give consent to treat

 

Aga Khan University Hospital Ethics Committee chair, Dr John Weru. [File, Standard]

An elderly man reports to the hospital with Covid-19. Upon investigation a critical situation is noted: his oxygen level is hovering at 60 per cent - this is dangerous.

While the elderly man is conscious and can speak and hear, he won’t give consent to being intubated. Does he realise his life is threatened? His second-born son, who has brought him to hospital, is asked for consent but refuses to give it.

 It’s almost midnight. Desperate for a decision to intervene, the clinical team reach out to the Chair of the Hospital Ethics Committee. By the time he arrives, the son has left and nothing can be done at that moment.

The night goes by and luckily the man’s condition is stable, but he still won’t give consent. The clinical team meets with the hospital ethics committee chair, but what can they do?

First thing is to have a consultation with the family.  The son is called in and the grave situation regarding his father’s health is explained.

He cannot make a decision to intervene – it is not his place. What does that mean? Why not – we know the condition, the medical team is unanimous in its recommended approach, without treatment the father’s demise is certain, and it is a relatively straightforward decision to make.

 “You see”, the son explains, “my mum passed away a couple of years ago. Ever since then, it is my younger sister who tends to my father’s needs, makes decisions, and he very much relies on her counsel. “Without her say, we cannot do anything.”

Problem solved: the man’s daughter is contacted, she rushes to the hospital, signs off on the treatment, the intubation is performed and he recovers. Interestingly, the daughter – although neither male, nor the firstborn who normally makes such decisions – is named after a favourite sister of the patient, has her own family, and lives close to her father.

This story is not a one-off incident. Medical personnel face such dilemmas on a regular basis without much guidance or support. So, what is to be done?

To treat without consent when it is obvious what must be done, or support patient autonomy; wait for a medical condition to deteriorate to a point of futility, or intervene and take the consequences?

Or should one determine the patient and family’s goals of care when the advanced directive telling the clinician the patient’s wishes, or preserve the sanctity of life and the ‘do no harm’ principle of the profession?

The list of ethical conundrums goes on and on.

In this case, the social and kinship structures of the community, the context and culture, and the particular circumstances all came into play in the patient’s care. The family dynamics, the recent history of loss – unresolved grief, the severity of the condition, and the structures and decision-making at both the individual, family and hospital level all shaped the process of decision-making and the options on care.

 As patient autonomy to determine his or her own care swings the balance of power away from the medical professional’s knowledge and honoured place in unchallengeable decision-making, clinicians face such ethical dilemmas on a regular basis.

 Doctors, nurses, and ancillary staff need not just training and support to deal with cases that are challenging but also anticipatory thinking to determine the process of decision-making at the level of the hospital and medical facilities that are ultimately in the best interest of the patient.

 That still leaves other questions that must be confronted: are we moving towards an autonomy that privileges the individual about all other considerations?

How we consider the needs and care for each other as well as the people we live with as we confront these questions will depend on the institutional ethics we build. The institutional ethics will be shaped by the processes we develop as we confront new cases.

Dr John Weru is Chair, Hospital Ethics Committee, Aga Khan University Hospital

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