Who decides how you die: ‘Advance directives’ have yet to give patients legal autonomy over end of life care

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Often overlooked, advance directives are a means for individuals to control their end of life care.

Photo by Jimmy Chan.

Advance directives (AD) are a means for patients to make a prior refusal of life-sustaining treatments before they are no longer medically able to make those choices for themselves. In other words, patients choose in advance what directive they would like to provide to family and doctors when incapacitated, such as in a coma or unconscious state.

AD can cover three areas: no resuscitation, no artificial ventilation (breathing), and no artificial feeding and hydration. The Law Reform Commission (LRC) model form of AD is only applicable to an individual who “no longer has the capacity to make healthcare decisions and is terminally ill, in a persistent vegetative state or in an irreversible coma.”

Wishing on a star (or an AD)

In Hong Kong, an AD is not legally binding, which often results with family members disregarding patients’ wishes in order to prolong their lives.

Dr. Louise Hooi Seu Cheng, a geriatric care specialist who pioneered the Hospital Authority’s (HA) first use of AD forms, elaborates on the frequent disagreements she witnessed between the wishes of an individual against those of their families.

“A lot of the time patients’ families said they regretted putting their foot down…They didn’t want to take the blame for shortening their loved one’s life, so they fought [to preserve] it.”

She recalled incidents when families said that the quality of life was far more important than watching their loved ones suffer to postpone their deaths for a short period. This includes incidents when patients who did not want to undergo life-sustaining treatments such as the insertion of IV, food and urine tubes.

“They’re very lucid and clear [when deciding on their advance directives],” Dr. Hooi remarks, “You shouldn’t stop them, tie them down and push in the tube while the patients scream, ‘Please let me off, please give me my freedom.’ That is painful.”

Dr. Jean Woo, director of the S.H. Ho Centre for Gerontology and Geriatrics, noted that Hong Kong’s health care and society have made strides in promoting awareness of and ease-of-access to advance directives.

“There has been extensive public education about end of life (EOL) care [and] there are increasing demands for signing this document in the community with family doctors. Furthermore, the Hospital Authority has produced a document called the advance care plan (ACP), which incorporates the Advance Directive Section.”

The ACP facilitates a discussion between individuals and their doctors, so that patients’ wishes may be recorded using this form. This process may require more than one consultation with the doctor and would ideally include making patients’ family members aware of their pending decisions.

Dr. Woo would like to see the government legalise the aforementioned documents and consultation process, giving individuals the autonomy to control the conditions of their EOL care.

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