It is legal to refuse food and fluid. It is also legal to refuse further treatment. Before VAD became legal, some people chose to stop eating and drinking as their only way to stop continued suffering. Since VAD has been legalised, the strict criteria mean that some people still find that they are not eligible for VAD and have chosen this as an alternative path.
The information provided here is general in nature. It is provided to assist those who have decided to take this path.
Thanks to Dying With Dignity Victoria (DWDVic) for this information.
Voluntary Refusal of Food and Fluid (VRFF)
The late Dr Rodney Syme included this note as Appendix A in “A Completed Life”, a book completed by him in 2019 and published by DWDVic.
“… It shows that, with suitable assistance, you can achieve a good death even if you do not qualify for VAD.”
Protocol for Voluntary Refusal of Food and Fluid (VRFF)
– also known as Voluntary Stopping of Eating and Drinking (VSED)
There has been virtually no discussion about VSED in Australian medical literature. It should be clear that death occurs by dehydration, not starvation. Refusal of artificial nutrition and hydration is legal, and withdrawal of oral food and fluids is commonly used in palliative care (in association with terminal sedation). There are judicial determinations in Australia that a competent person can refuse artificial hydration, and can also refuse oral food and fluids. Forced feeding is illegal and this is endorsed by the AMA.
There is considerable literature to confirm that VSED may not be as distressful and painful as might be expected. For people with extreme suffering, who only have a short time to live, it is not an attractive option. Its acceptance may be found in a significant group of people who are dying slowly, and do not qualify for VAD. Many are aged and frail, living alone at home or in an institution.
It is critically important to understand that this approach should only occur after careful discussion with family or carers, and the strong and educated support of the doctors and nurses involved in care. Engagement with community palliative care services can be valuable. Additional expert nursing care can be arranged in aged care.
It should be stressed that this can be a completely legal decision by any competent person, and it can be included in advance care plans and advance directives. It is not considered suicide in judicial judgments. Because of the serious nature of the decision, some doctors may request an expert psychiatric assessment of competence.
The key issues are good communication in preparation, followed by a graduated process involving control of thirst, management of bowel and bladder, social support, and appropriate medication.
All life sustaining medications should be ceased, and only palliative medications for the relief of symptoms (essentially sedatives and pain control medications) prescribed.
Sequence of Events in VRFF
- Initially some hunger may be appreciated but usually rapidly disappears as ketones increase in the blood.
- Thirst develops after 24-48 hours and is appreciated as a dry mouth and dry lips.
- Some confusion develops after 3-5 days, followed by drowsiness.
- Physical weakness makes mobility difficult and dangerous after 3-4 days.
- Coma ensues after 5-7 days, depending on the original state of health and medication.
- Death occurs in 5-10 days, occasionally more, depending on the rigour of the cessation of fluids (and to a lesser extent, food).
Management of Bowel
Distressing bowel incontinence, and the need to mobilise to the toilet can be avoided by emptying the bowel prior to ceasing fluids. Start by ceasing eating solids, combined with a mild laxative, to empty the bowel before commencing cessation of fluids. At the same time, gradual reduction of fluid intake can start. The fluids taken at this time can be energy rich to diminish hunger.
Management of Bladder
Once fluid restriction commences, urine output will diminish, but the need to void will continue up to 5-6 days after fluid cessation. A commode chair beside the bed is valuable while mobilisation is still possible. A catheter avoids the need to mobilise to the toilet but is invasive, and to be avoided if possible. In the later stages, absorbent incontinence pads avoid wet clothes and bed, or voiding can occur into a towel, or bottle for the male.
Management of Thirst
A gradual reduction of fluid intake can precede complete cessation. Start with 2000 ml/day, then 1500 ml, then 1000 ml, then 500 ml, before complete cessation (with minimal exceptions for essential palliative medication and oral care). The more complete the cessation of oral fluids the shorter the process. A dry mouth is the principal symptom of thirst, and dry lips follow and can be painful. Dry lips can be avoided by regular application of a lip balm.
There are various ways to alleviate a dry mouth.
- A mouth spray of water can be used as needed.
- Ice chips can be sucked.
- There are proprietary products for keeping the mouth moist (Biotene).
- Moist gauze swabs are used in nursing to moisten the tongue and mouth.
- Small quantities of lemon juice, grapefruit juice or orange juice will stimulate saliva.
Medication
Pain is not necessarily an issue for VRFF but may be present for other reasons. Pain relief can be obtained without significant fluid by using oral morphine (2-10 mg/ml – ordine). Sedation can be provided orally, rectally, or by injection if desired, or if indicated by restlessness and confusion. Oral medication for fungal infection may be needed.
Social Support
Perhaps the hardest part of this journey is the psychological and existential aspect. People need to be accompanied as much as possible – engagement with family and friends, shared memories, care and love. Soft familiar music in the background may be valuable.
Many people would reject VSED from an emotional perspective – yet for those who have no other option, there is clear evidence that, properly managed, VSED can proceed without physical suffering, and for some, the slow nature of the process allows for a surprisingly positive farewell.