Commentary: Your spouse or your parents? Who should decide when to take you off life support?
Plan how to leave well, if we want to live well, say NUS' Sumytra Menon and NUHS' Dr Noreen Chan.
SINGAPORE: Last month, 42-year-old Vincent Lambert made headline news around the world when his relatives split into two camps and fought bitterly in court over whether his life should be sustained artificially or withdrawn so he could pass away.
Mr Lambert, who has since died, had been in a vegetative state for more than a decade since a 2008 motorcycle accident left him with quadriplegia and irreversible severe brain injury.
Lambert’s wife, Rachel, wanted to pull his life support – agreeing to doctors recommendation to do so as efforts to improve his conditions were in vain, and that her husband had previously expressed his wish not to be kept alive if he was in a vegetative state. But Lambert’s parents and some other relatives disagreed despite some of Lambert’s siblings taking Rachel’s side.
Lambert’s case has gotten many to ponder over who should decide when to take you off life support.
If you are ever in Lambert’s position, the best person to decide is yourself.
But the reality of being in a coma or a vegetative state is you are incapacitated and unable to communicate your wishes. It would then be left to the healthcare team and your loved ones to work out the best way forward.
To avoid misunderstanding, guilt and conflict, one should have discussed and communicated their values, goals and wishes ahead of time.
Understandably, talking about death and dying is still a taboo topic in Singapore, as it is in many societies. But holding back wouldn’t do us any good.
Lambert was in his thirties when he lost the mental capacity to make his own medical decisions due to the accident, which was probably the last thing he was expecting to happen. But it did.
How many of us have planned for something like that? Have we made a will, or bought ourselves accident or life insurance?
All of us will die one day, it is only a matter of when, where and how, yet for a phenomenon that is universal, we spend very little time planning for it.
There are ways you can plan for circumstances like Lambert’s.
For example, by agreeing to let the doctor decide whether or not to prolong your life through the signing of an advance medical directive (AMD), or planning the management of your affairs in advance through a lasting power of attorney (LPA).
But these plans have their limitations. An AMD only applies if you are terminally ill, experiencing imminent death, and the provision of extraordinary life-sustaining treatment will only postpone the moment of death.
It wouldn’t apply if you were in Mr Lambert’s position as he was still breathing unaided even at his vegetative state.
Meanwhile you can appoint a proxy decision-maker, called a donee, to make your medical decisions through an LPA, but the donee is not completely empowered to decide what treatment you should get.
Rather, those decisions are left to the doctor who must make the decision based on the person’s best interests.
This means that if you were Lambert and had made an LPA, your donee cannot decide to take you off life support - only the doctor can decide.
LIVING WELL AND LEAVING WELL
Last year, when the Ministry of Health announced the republic’s national severe disability insurance scheme, CareShield Life, it notes that one in two healthy Singaporeans aged 65 could become severely disabled in their lifetime, and about three in 10 Singaporeans are expected to live a decade or more with their disability.
These facts tells us that it is not just a good idea, but an imperative, that we begin these discussions sooner rather than later.
When you are fit and healthy, being disabled or dependent on others for your basic needs may seem like an unthinkable scenario or an unacceptable way to live; but human beings are adaptable, and people may find a way to cope with unwanted changes in their health status.
These discussions should raise questions of what it means to be living well before leaving well. The answer may vary, not just between individuals, but with same person across his or her life stages.
START TALKING ABOUT DEATH
Many people probably worry about burdening their family, emotionally and financially, but do not realise that this burden may be lessened by having conversations with their loved ones about their values and what a good life means to them.
Start the conversation with your loved ones at home, perhaps using guidance from the “Living Matters” website which was set up by the Agency for Integrated Care (AIC).
Take part in a discussion about your healthcare preferences with your healthcare provider.
Many healthcare institutions offer advance care planning (ACP) - the process of planning for future health and personal care - for patients to explore their beliefs, values and healthcare preferences.
Through ACP, reflect on and express your personal beliefs and wishes, and let your love ones know what constitutes a good and meaningful life to you.
Atul Gawande in his best-selling book Being Mortal said:
Well-being is about the reasons one wishes to be alive. Those reasons matter not just at the end of life, or when debility comes, but all along the way.
By having these ACP conversations, and by understanding what well-being means to you, your family and healthcare providers will be able to appreciate your values and preferences.
In this way too, you won’t be “burdening” your family if when you no longer have mental capacity, and the care you receive will also likely be aligned with your wishes and your best interests.
The time for these conversations, whether as individuals or as a society, is now. Otherwise, it is always too early, until it is too late.
Sumytra Menon is senior assistant director at the Centre for Biomedical Ethics, at the NUS Yong Loo Lin School of Medicine. Dr Noreen Chan is senior consultant and head in the division of palliative care at NUHS' National University Cancer Institute in Singapore.