Let's talk about Advance Care Planning to die with dignity

Such planning helps patients and families talk through options in end-of-life care

Just last month, the state of Victoria in Australia legalised euthanasia with effect from 2019. Proponents appear to be driven by a human rights perspective to uphold self-determination and to relieve suffering.

While euthanasia is illegal in Singapore given its inherent intent to end life, Advance Care Planning (ACP) has been advocated in Singapore, particularly for people suffering from advanced illness to allow them to make important future healthcare decisions before they lose the capacity to do so.

The issues encompassed in ACP include life-sustaining treatments in Do Not Resuscitate (DNR) Orders and artificial ventilation, tube feeding, use of antibiotics in terminal illness, and one's preferred place of care and death.

ACP is pertinent not only for people with a prognosis of weeks to months, such as in life-limiting advanced cancers; it is also relevant for those with a protracted course of an incurable illness that may span several years in neurodegenerative diseases such as dementia and motor neuron disease.

ACP not only promotes self-determination in enabling people to decide autonomously what they desire for themselves, but it also helps family and friends navigate complex decisions for their loved ones, and allows the healthcare profession to safeguard ethical practice that upholds autonomy in the best interest of the patient.

In essence, ACP provides a guide to the journey from serious or terminal illness to death, helping patients and family members talk through and prepare for various options.

Like euthanasia, it puts patient autonomy at the centre of end-of-life decisions; but unlike euthanasia, it is not prescriptive of a certain final outcome, but responsive to what may arise.


Advance Care Planning is meant to uphold personhood and dignity in securing a good death. Medical and social care
professionals need to be mindful that it is the patient's choice and not theirs, says the writer. PHOTO: ISTOCKPHOTO

Despite its benefits to help end-of-life patients cope with the difficult journey, the uptake of ACP has generally been modest in developed countries despite its embrace by the healthcare and some legal fraternities, with only about 20 per cent of suitable patients adopting it.

In Singapore, a more limited form of ACP in the Advance Medical Directive (AMD), which is confined to only life-sustaining treatments, was first introduced in 1997. As of 2015, less than 25,000 people had signed an AMD.

 

END-OF-LIFE CONVERSATIONS

For several years now, we have been advocating ACP for people with early cognitive impairment who retain mental capacity to make informed decisions in Khoo Teck Puat Hospital. We published separate studies in 2015 and this year which showed that less than half of the 158 patients we engaged were willing to partake in further conversations on the subject, and eventually only 22 per cent went on to formally document advance directives.

Those who had not been married and hence had limited family relations were more likely to embrace ACP. Likewise individuals who were better educated or had higher executive function which encompasses the ability to plan and make complex decisions.

Major reasons for unwillingness to engage included a preference to delegate end-of-life decisions to family members, inability or refusal to engage in such conversations, and an attitude of acquiescence to what the future holds.

Importantly, the modest uptake of ACP calls for deeper exploration into the complexities that underlie the issue.

AMD MAY LIMIT CHOICES

For example, it is possible that a formally documented advance directive may actually limit one's freedom in some contingencies. The very uncertain nature of illness, even for an incurable condition, calls for latitude to make critical decisions that impact life and death.

Take, for example, a patient with advanced cancer, struck by an acute life-threatening pneumonia which is amenable to treatment with antibiotics and artificial ventilation. Or another patient with advanced dementia who was eating well, but is struck by a viral illness that renders her unable to eat and drink adequately on her own.

In these instances, a course of antibiotics and tube feeding respectively are viable treatment options.

However, advance directives can include withholding the use of antibiotics; or an advance directive may say no tube feeding. A strict adherence to these directives means that the first patient won't get antibiotics to treat the pneumonia; and the second won't get temporary tube feeding that may help her tide over the phase of acute illness while awaiting the return of some degree of eating function.

In the two cases above, one can see that while advance directives are meant to free one from burdensome treatments that are seemingly futile, they may in some situations limit possibilities by consigning the person to a self-imposed bondage.

Therefore, while ACP may reduce the need for difficult end-of-life decisions, it would serve us well to remember that good decisions in such circumstances often result from thoughtful conversations and elaborate deliberations that ACP may not always anticipate and encompass, given that ACP discussions are by their nature hypothetical.

DIALOGUE AND DIGNITY

In the absence of advance directives, the time-honoured practice of active listening, respectful dialogue, mutual trust and understanding between healthcare professionals and surrogate decision makers acting in the interest of the patient is often the best recourse.

Ultimately, ACP is meant to uphold personhood and dignity in securing a good death that respects a person's values and preferences.

Advance Care Planning not only promotes self-determination in enabling people to decide autonomously what they desire for themselves, but it also helps family and friends navigate complex decisions for their loved ones, and allows the healthcare profession to safeguard ethical practice that upholds autonomy in the best interest of the patient... Like euthanasia, it puts patient autonomy at the centre of end-of-life decisions; but unlike euthanasia, it is not prescriptive of a certain final outcome, but responsive to what may arise.

Conversations need to be initiated early and tailored to the particular needs and situation of the person.

For those who are not ready to engage, a willingness to pace with them and revisit the issue is appropriate. As for those who have made advance directives, flexibility and openness to new conversations and change in plans are necessary.

Within the medical and social care fraternity, there is a risk of being dogmatic in ACP engagements so it is crucial that professionals not impose their own values or be overly prescriptive.

We need to be constantly mindful that it is the patient's choice and not ours. For those who may not be able to engage in discussions on specific care plans, a general discussion to know the person, his values, wishes and preferences might suffice to guide decision making for surrogates if the need arises in future.

Although ACP and euthanasia espouse self-determination, there may be tension between one's individual choices and the choices of our immediate families and the larger community, as our personal choices impact not just ourselves but also those around us. The freedom to make choices for ourselves does not remove the need to be responsible to others.

Just as euthanasia can hurt our loved ones if it is not a collective decision, advance care plans should be made in concert with one's closest associates where appropriate, especially in an Asian society like ours where collective familial decision making have socio-cultural roots.

As we continue to promote ACP given its benefits in helping to fulfill a person's wishes, it is necessary to be cognisant that advance directives may not appeal equally to everyone. Adhering to the adage "to each his own" will do us well, as does learning to live without certitude what manner or time of death.

A colleague remarked that the most important things in life are often beyond our control after her patient's wish of wanting to pass on at home was not fulfilled.

If euthanasia or even ACP is symptomatic of man's quest for complete agency, then being open to what life or death brings would be wise, given what the limited human mind can fathom or wish for.

A few years ago, I received a Christmas card from the daughter of a patient who had passed on. Her mother had been suffering from advanced dementia and had lost the ability to eat and swallow well. Her mum had mentioned when she was still mentally lucid that should she one day be bedfast and completely dependent, she would like her life to be terminated. What her daughter wrote in the card amounted to this: "My mum's last gift to me was her dementia. I would not have learnt to love through the travails of caregiving if I had not given of myself to caring for her until the very end."

Life and death hold lessons for us, and it is good not to close doors on the possibilities that time alone will unveil.


  • The writer is director, geriatric centre, and senior consultant at Khoo Teck Puat Hospital.
A version of this article appeared in the print edition of The Straits Times on December 16, 2017, with the headline 'Let's talk about Advance Care Planning to die with dignity'. Print Edition | Subscribe