Who decides on care when a patient is dying?

When it comes to end-of-life decisions, existing rules stress patient autonomy - but family members often insist on a role. What's a doctor to do?

By Andy Ho, The Straits Times, 1 Nov 2012

TWO local studies show that doctors here tend to defer to the family in end-of-life scenarios. But the law and practice regulations see decision-making authority as being vested only in the adult patient of sound mind, not the family.

This sometimes places doctors in difficult situations. By contrast, Hong Kong and China have laws that allow for the family's role in medical decision-making. It may be time to see if Singapore's laws need similar updating.

Family members' role in health-care decisions is in fact already entrenched in health financing. Singaporeans may use their own individual Medisave funds - and those of their immediate family members (up to 10 accounts) - to pay for hospitalisation, day surgery and certain outpatient treatments.

That Medisave funds may be transferred within one's family implies it is official policy that responsibility for long-term care rests primarily with individuals and their families, not the state.

But when it comes to treatment options, Singapore's laws and practice guidelines for decision-making stress patient autonomy, not familial decision-making, so long as the patient is an adult who has not lost mental capacity.

Family decisions come in when the patient has lost mental capacity. But even in such cases, a just-published National University of Singapore (NUS) survey of 147 health-care professionals in a local cancer centre reports that 60 per cent of them said they would defer to families in end-of-life care - even when family decisions went against preferences previously expressed by the patient while still competent.

So "collusion between family members and... health-care professionals is evident".

In a 2011 study where 78 doctors here were interviewed by four NUS dons for the Lien Foundation, the "frequent scenario of collective family decisions and doctor-family collusion" was noted too.

It reported that doctors dreaded family requests to withhold the diagnosis from dying patients since they were legally obliged "to give full and frank disclosure to their patients", there being no "default legal authority" for families to decide for adult patients.

But "the Singapore family favours collective decision-making, (rendering) the principle of patient autonomy hard to apply", it surmised.

What the law says

A SLEW of Singapore laws and regulations highlight the principle of personal autonomy for end-of-life decision-making.

First, it is implicitly recognised in two statutes, namely, the Advance Medical Directive Act and also the Mental Capacity Act, according to NUS law professor Tracey Evans Chan who was involved in the Lien study.

Second, patient autonomy is upheld in case law. Prof Chan noted a case In re LP (2006) where the High Court "seemed to recognise the primacy of patient self-determination" in regard to consent for treatment. In 2005, Madam LP, who had diabetic gangrene, was urged to have her right leg amputated, which she refused, insisting that her limbs be saved at all cost. The infection in her gangrenous parts spread into her blood system and she became comatose.

As her only known relative was a 16-year-old son, Mount Alvernia Hospital doctors petitioned the courts to authorise various amputations needed to save her life.

The court ruled that the adult patient "was entitled to give or withhold consent to any medical treatment and doctors are obliged to respect that person's decision", adding: "No one else, however close by reason of kinship or friendship, was legally entitled to make that decision for the patient"; and, specifically: "The best interests of the family are not to be confused with the best interests of the patient."

If the patient is incompetent, the court ruled, a third party may apply to the courts to have a person appointed to act in her best interests. However, if time was of the essence, the court had jurisdiction to authorise attending doctors to decide in the patient's best interest, medically speaking.

Eventually, the doctors thus authorised by the court amputated both her legs below the knees in order to save her life.

So, by statutory and case law, the decision-making matrix on medical options puts the competent patient first; followed by the courts if the patient becomes incompetent. The family is not included.

Finally, in the National Medical Ethics Committee guidelines, patient autonomy is explicitly highlighted as follows: "The primary ethical principle in advance care planning is respect for the individual's autonomy (so) family members and loved ones (are to be made to) understand the individual's wishes". The guidelines advise that "family involvement is usually inevitable (so) sufficient time should be provided for discussions between individuals and their family members to acknowledge and respect the goals, values and wishes the individual chooses".

That is, whatever the family may want, doctors are to always and eventually regard the patient as having the final say.

Family members' roles

YET as studies show, doctors here break this very rule in deferring to families who override the patient's expressed wishes.

In other words, supremacy of patient autonomy is assumed in the law and practice regulations, where the family has actually no legal standing. But local medical practice suggests doctors and family members are making decisions that do not always accord with this principle.

Other societies have adapted their laws to recognise the family's role in these scenarios. For example, the Hong Kong Hospital Authority 2002 guidelines on life-sustaining treatment for the incompetent elderly explicitly require that "the health-care team should work towards a consensus with the family".

In a 2004 study, City University of Hong Kong ethicist Chan Ho-Mun found empirically that end-of-life decision-making in the city saw family involvement so taken for granted that there was the "presumption that patient consent is not (even) required for disclosure of (his) information to the family".

This family-oriented model of decision-making is all the more accentuated in China where a 1982 law permits consent for treatment to be given by either the competent patient or his family.

Under a 1994 law, a family member's signature suffices if the patient is incompetent.

Finally, a 1998 law permits the family to give consent for a patient to participate in research involving experimental treatments.

Thus, China and Hong Kong laws affirm the family's authority for its members. By contrast, it is an anomaly that the law and regulations here put patient autonomy at the centre of medical decisions, when family members, in practice, are crucial partners, and doctors end up deferring to them instead.

The Lien report wondered "whether our current laws should be reviewed" to take into account this reality.

A review could allow for but also prescribe limits to family involvement. Also, practice guidelines for dying patients could be tweaked to strike a balance between the avowed theory of patient autonomy and the actual practice of active family involvement in decisions.

Doctor-family engagement on end-of-life decisions for patients needs to be legitimised, with suitable safeguards.