Is the voluntary refusal of food and fluid an alternative to assisted dying?

Two of the most influential right-to-die campaigners in the UK, Debbie Purdy and Tony Nicklinson, died after voluntarily refusing food and fluid, as well as refusing antibiotics. This sparked my interest in this method of suicide as a natural extension of my research into debates around assisted suicide (Richards 2012; Richards 2014).

It was reported in the press that both activists died after stopping eating and drinking, in combination with refusing all medical treatments such as antibiotics. This was despite the fact that travelling to Switzerland for lawful assistance with suicide was an option available to both of them. While travelling abroad when profoundly disabled would have presented practical challenges, other Britons have surmounted these challenges in the past and made the journey. With the help of a Swiss right-to-die organisation Nicklinson or Purdy would have been able to ingest a lethal and fast acting barbiturate. This would have enabled them to time their death to within an hour.

What I find interesting is that despite these two activists’ failure to secure a change in the law in the UK, when the time came and they felt they wanted to die, they were still able to exercise some control over the timing of their death by using this method.

I want to explore whether the refusal of food and fluid offers an alternative to physician-assisted suicide for some people.

This passive method of suicide tends to be reported in a negative way in the media. But what does the research evidence suggest about this particular method of suicide and whether it causes additional suffering at the end of life?

Cultural perspectives

Through the ages, different cultural groups have adopted variations of death by stopping eating and drinking.

For example, some Jains in India whose death is already pending (usually frail older people) have adopted a process called Santhara – fasting until death – in order to attain ‘moksha’ or liberation. A similar practice exists in Hinduism called Prayopavesa.

There are concerns about how painful this method of dying might be and about how long it can take. Such questions undoubtedly cause people uncertainty. However, it is a means of death that is potentially available to all because it does not require a prescription from a doctor. It also requires significant perseverance on the part of the individual to commit to that particular course of action which may be an indicator to others of the strength of their determination to die.

It is one method amongst many that I have heard debated at length in right-to-die activist circles, particularly amongst older activists.

Older people who are becoming increasingly frail are more likely to have multiple co-morbidities which may compromise their quality of life but which may not in and of themselves be life-limiting. This means that they may have a longer wait for ‘natural’ death than people who have a life-limiting or terminal illness. This is despite some people perhaps feeling that they are tired of life or that they have completed their life. Such individuals may look to voluntary refusal of food and fluid as one available method of suicide that would enable them to time their death.

It should also be added that these individuals would be unlikely to qualify for physician-assisted suicide under any prospective UK law. This is because laws currently proposed in England/Wales and in Scotland would require a person to have a diagnosable life-limiting disease in order to qualify for medicalised help to die.

Definitions

Voluntary refusal of food and fluid at the end of life (VRFF) is defined as action taken by a person, who has mental capacity, to voluntarily and deliberately stop eating and drinking with the intention of hastening their own death. This will be for reasons of what they perceive to be unacceptable suffering or an unacceptable quality of life (Ivanović et al. 2014).

It is seen as an expression of control by a competent patient and thus differs from other reasons people may have for stopping eating and drinking at the end of life, such as loss of appetite, an inability to eat and drink, or a general disinterest in food and drinks resulting from advanced disease.

Depending on a person’s underlying disease or overall health status, dying through voluntary refusal of food and fluid can take days or several weeks. Long-term right-to-die campaigner Jean Davis made headline news in 2014 when it was claimed that it had taken her five weeks to die using this method. Ms Davis was 86 at the time but did not have a life-limiting condition.

Abstaining from all fluid intake is more effective at hastening death than is abstaining from food. However, both methods are usually undertaken together.

Relief of symptoms

Some researchers have suggested that dying in this way is not painful (Bernat et al. 1993). However, the evidence tends to come from experience with people who have a life-limiting disease and are perhaps already close to death (Ganzini et al. 2003). This would make them far more susceptible to the weakening effects of any abstention from eating and drinking.

It is also suggested in both research and activist literature that people contemplating using this method of suicide need to be assured that they have access to symptom relief. For example, the symptoms most commonly reported are dry mouth, which requires appropriate mouth care, and headaches, which require pain relief. Such symptom relief need not come in the form of professional palliative care, although there is research literature suggesting that is should (Quill & Byock 2000).

It is also possible that an individual could accept medicalised symptom relief but refuse life-prolonging medical treatments, such as antibiotics.

Requiring access to and being supported by palliative care specialists somewhat defeats the purpose of this method being a non-medicalised way of hastening death accessible to everyone. Outwith medicalised support, a willing carer would require sufficient knowledge to effectively attend to any symptoms and the time to be on hand 24 hours a day.

In the case of Jean Davis, for example, symptom relief was provided by both her GP and by her daughter, who was a nurse by profession. Debbie Purdy refused food and fluid in order to hasten her death but was an in-patient in a hospice at the time and was therefore offered round-the-clock symptom relief. Similarly, an 80 year old South African woman with terminal cancer who chose to die in this way was an in-patient in a nursing home facility within her retirement community.

Distinguishing features

Voluntary refusal of food and drink is distinguished from other methods by the following:

• it is a legal option
• it does not require a doctor to deliberately bring about a person’s death
• dying using this method takes days if not weeks, giving a person and their family and friends more time to contemplate the decision, and the person more time to change their mind
• the dying period is likely to be protracted and of uncertain duration, with unknown additional symptom burden prior to death which is likely to dissuade many from using this method. Such factors could also cause distress to care givers
• there are fewer bureaucratic barriers than when applying to die with assistance from a doctor in countries where assisted suicide is lawful
• the method enables people to decide for themselves when the process should start (rather than, for example, being given a date and time to die at Dignitas)
• there are no legal repercussions for family members. This was the reason the activist Debbie Purdy gave for using this method rather than travelling to Switzerland and risking the possible prosecution of her husband

 A less morally controversial way to die than assisted suicide?

Bernat and colleagues argue that suicide by voluntary refusal of food and fluid is an alternative to a physician-assisted suicide which “avoids moral controversy altogether and has fewer associated practical problems in its implementation”.

I would challenge the authors on both of these claims. There appear to be significant practical problems of committing to this course of action, not least in finding someone who can give the requisite care and symptom relief and the uncertainties surrounding how distressing it is to die in this way even when assured of symptom relief.

The method also does not “avoid moral controversy”. Suicide by any method will always raise moral questions.

Healthcare professionals in the UK are legally required to respect a competent patient’s refusal of food and fluid; people cannot be force-fed. This is based on the jurisprudential conviction that everyone has the right to self-determination with regards to his or her own body.

But does a person who decides on this course of action have a right to expect that caregivers will provide symptom relief for them, even if they disagree with their course of action?

Carers may feel that they are “enabling” suicide by collaborating with the person who is trying to end their own life, even if that is only through providing comfort care.

However, in lieu of the availability of a “suicide pill” or lawful physician-assisted suicide, death by voluntary refusal of food and fluid exists as a self-directed intervention which everyone has recourse to at a time of their choosing.

Despite the two most high profile right-to-die British activists dying by this method, voluntary refusal of food and fluid does not often feature in the public debate about assisted suicide. From my review of the available literature, I can only conclude that more research is needed to improve the evidence base about the practicalities of dying via this method.

Dr Naomi Richards

If you would like to comment on this blog post, or have a personal experience of voluntary refusal of food and fluid which you would like to share, please do so below.

References

• Bernat JL, Gert B, Mogielnicki RP. (1993) Patient refusal of hydration and nutrition. An alternative to physician-assisted suicide or voluntary active euthanasia. Archives of Internal Medicine 153(24):2723-2728.
• Ganzini L, Goy ER, Miller LL, Harvath TA, Jackson A, Delorit MA. (2003) Nurses’ experiences with hospice patients who refuse food and fluids to hasten death. New England Journal of Medicine 349(4):359-365.
• Ivanović, N., Büche, D. and Fringer, A. (2014) Voluntary stopping of eating and drinking at the end of life – a ‘systematic search and review’ giving insight into an option of hastening death in capacitated adults at the end of life. BMC Palliative Care 13(1).
• Quill TE, Byock IR. (2000) Responding to intractable terminal suffering: the role of terminal sedation and voluntary refusal of food and fluids. ACP-ASIM End-of-Life Care Consensus Panel. American College of Physicians-American Society of Internal Medicine. Annals of Internal Medicine 132(5):408-414.
• Richards, N. (2012) The fight-to-die: older people and death activism. International Journal of Ageing and Later Life 7(1):7-32.
• Richards, N. (2014). The death of right-to-die campaigners. Anthropology Today 30(3):14-17).