provision of hydration and nutrition by ‘artificial means’ has become an issue of controversy in relation to persistent vegetative state, palliative care and ‘terminal sedation’. The latter is increasingly seen as an alternative to euthanasia. There is a balance between cherishing life and accepting the inevitability of death. Whilst life need not be maintained at all costs and in all circumstances, the deliberate withdrawal of basic life-sustaining measures such as hydration and nutrition with the aim of ending the patients’ life is morally unacceptable.
Moral requirement for hydration and nutrition There is a duty for carers always to offer patients basic care such as food and hydration, warmth, shelter, nursing care, relief of distressing symptoms, companionship and psychological and spiritual support. This care is owed out of respect for the human dignity of the patient. The provision of hydration and nutrition, however administered, constitutes ‘basic care’1.
“Medical treatment has as its end the maintenance or restoration of health: nutrition and fluids have as their end the support of life. Nutrition and hydration, whether provided in the usual way or with medical assistance, do not of themselves remedy underlying disease and are a normal expression of our solidarity with the helpless”.
The moral position relating to the provision of hydration and nutrition, even to patients with persistent vegetative state (PVS), was clearly stated by Pope John Paul II in 2004 2:
"I should like particularly to underline how the administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act.
Its use, furthermore, should be considered in principle ordinary and proportionate, and as such morally obligatory insofar as and until it is seen to have attained its proper finality, which in the present case consists in providing nourishment to the patient and alleviation of his suffering”. He continued, “death by starvation or dehydration is in fact the only possible outcome as a result of their withdrawal. In this sense it ends up becoming, if done knowingly and willingly, true and proper euthanasia by omission" (John Paul II, 2004. Care for patients in a permanent vegetative state).
Provision of ‘artificial’ or ‘assisted’ hydration and nutrition.
Patients may require ‘artificial’ or ‘assisted’
hydration and nutrition when they are unable to swallow e.g. after a stroke or where there is a gastrointestinal disorder rendering enteral feeding impossible e.g. those with short bowel syndrome.
The number of patients requiring total parenteral nutrition (TPN) on a long-term basis is relatively small. There can be no doubt that TPN constitutes medical treatment, is not without some risk and requires specialist input and monitoring. There are few if any instances where it would be performed without the patient’s consent except perhaps for short-term TPN in an unconscious patient in an intensive care context. The ethics of TPN apply to other medical treatment and will not be considered further.
There is an important clinical distinction between those who are unable to swallow e.g. due to stroke and those who are able, though reluctant, to swallow. The latter category would include those with cognitive impairment e.g. dementia who need encouragement and assistance with oral feeding and those whose appetite and perhaps thirst are reduced because of terminal illness. The overwhelming majority of terminally ill patients have no swallowing problems per se. The main ethical issues arise in the context of gastrostomy and nasogastric tube feeding. This is almost exclusively for those who are unable to swallow yet have an intact gastrointestinal system.
Tube and gastrostomy feeding
Tube feeding either by nasogastric tube or an endoscopically or radiologically placed gastrostomy feeding tube (PEG) or (RIG) will be considered in four clinical situations. These include
mentally competent patients with swallowing disorders (dysphagia); mentally incapacitated patients, including those with PVS who are unable to swallow; psychiatric patients with eating disorders and palliative care patients who are usually able to swallow but may require assistance with feeding and/or short term hydration.
1. Tube feeding in mentally capable dysphagic patients.
By far the largest group of patients who require medium or long-term tube feeding are patients unable to swallow for neurological reasons e.g.
stroke victims and those with motor neurone disease. Most would agree that placement of a PEG or a RIG constitutes a medical treatment or procedure for which consent ought to be obtained3. Gastrostomy placement in a mentally competent patient is unlikely to occur against the patient’s wishes. Whilst placement may be treatment, feeding through the gastrostomy constitutes care.
2. PEG placement for eating disorders.
PEG placement is occasionally required for those with eating disorders under mental health legislation. These patients will usually, if not invariably, be unable to consent to, or refuse treatment. In English case law, treatment of eating disorders can be regarded as part of the treatment of psychiatric illness. Hence, in the case of those with eating disorders, malnutrition in so far as it is a consequence of the primary psychiatric disorder, can be treated under the Mental Health Act 1983.
In twenty years as a consultant gastroenterologist I have only been involved in one such case in which I have place a PEG after application to the High Court4. The court accepted that the patient “W”
“suffers from a mental illness, namely somatoform disorder. It was described as being persistent in nature and severe in degree. That evidence is not challenged…….For some time now the manifestation of her mental illness has been an irrational belief that she cannot swallow and a consequent inability to maintain adequate levels of nutrition and hydration leading to loss of weight which was at one point considered to be life threatening”. The PEG was inserted against the patient’s wishes, under general anaesthetic and the patient survived.
Society has long recognised the legitimacy of compulsory treatment, often with restraint or detention of the patient where the treatment is for the underlying psychiatric disorder and its sequelae.
In the case of “W” there was a clear risk of dying from dehydration or malnutrition. It was also apparent that by reason of her somatoform disorder she was also mentally incapable of a valid refusal
of treatment by virtue of her belief that she could survive without nutrition.
3. PEG feeding in mentally incapacitated patients, including those with PVS, who are unable to swallow.
Where a mentally incapacitated patient is unable to swallow, e.g. after a stroke, tube feeding is usually necessary. The Mental Capacity Act 2005 permits placement in the ‘best interests’ of the patient.
Hitherto, placement would have been justified under common law following the Principle of Necessity established in the case of Re F [1990] 2 AC1.Feeding will normally be achieved by nasogastric tube in the first instance but may require PEG feeding in the long-term.
The moral and legal issues surrounding the provision of ‘artificial’ or ‘assisted’ nutrition and hydration in those with PVS arose with the case of Bland in 1993. In a written submission to the House of Lords Select Committee on Medical Ethics5, the Catholic Medical Association expressed concern that6:
“Hydration and nutrition could be withdrawn from those in PVS with the intention of causing their deaths…In the case of Airedale NHS Hospital Trust v Bland the Law Lords, or at least a majority of them, seem to have accepted the proposition that those who have the care of patients in a condition such as the judges had described might rightly adopt a pattern of care with the intention, purpose or aim of terminating the lives or bringing about the deaths of those patients”.
“The adoption of a pattern of care with the intention of ending life is contrary to Catholic teaching. Elderly and disabled people, some suffering from progressive diseases which may cloud their minds, must be assured that the care they receive will be adequate and in their best interests”.
4. Tube feeding and artificial hydration and nutrition in the dying
Most patients who are terminally ill are able to swallow but may have increasing problems as death approaches. Such difficulties will usually be managed by assistance with oral feeding. The dying may experience both anorexia and diminished thirst. Fluid requirements may be less because the patient is bedbound and less active and has reduced skin, respiratory, renal and gastrointestinal fluid losses. Dying patients may also be in a catabolic state and generate more
‘metabolic water’ especially from fat breakdown.
The development of ketonaemia and a rise in endogenous endorphins may reduce appetite.
Hyponatraemic dehydration which may occur in some patients who are dying may be associated
with a reduced thirst, compared to hypernatraemic dehydration.
Ethical difficulties in relation to the provision of hydration and nutrition.
In recent years the provision of hydration and nutrition has been questioned in relation to the feeding of patients with persistent vegetative state (PVS) and in palliative care. Increasingly, terminal sedation involving the cessation of hydration coupled with continuous sedation is seen as a form of euthanasia. John Paul II described Euthanasia as
"an act or omission which of itself or by intention causes death, with the purpose of eliminating all suffering"7. The deliberate withdrawal of hydration as part of ‘terminal sedation’ would foreseeably end in the death of the patient unless they were already imminently dying within 1-2 days and the further provision of fluids was physiologically irrelevant to survival. The deliberate withdrawal of hydration however administered cannot easily be justified, if at all.
‘Artificial’ hydration and nutrition in PVS patients
In 1993 the House of Lords in the case of Bland8, ruled that tube feeding could be lawfully withdrawn from Tony Bland who had sustained a devastating head injury at the Hillsborough football stadium disaster. He was diagnosed as being in a persistent vegetative state (PVS) and it was recognised by the court that he might live for months or even years unless his hydration and nutrition was withheld.
All four judges acknowledged that the withdrawal of hydration and nutrition was intended to cause Tony Bland’s death. “The proposed conduct has the aim for equally humane reasons of terminating the life of Anthony Bland by withholding from him the basic necessities of life”……. "the conduct....is intended to be the cause of death" (Lord Mustill).
"The whole purpose of stopping artificial feeding is to bring about the death of Anthony Bland" (Lord Browne-Wilkinson): "The intention to bring about the patient's death is there" (Lord Lowry). "It will (as it is intended to do) cause his death" (Lord Goff). However, it was judged that whilst the mens rea (or ‘guilty mind’) was undoubtedly present the actus rea (or ‘guilty act’) was not present because the withdrawal of hydration was an omission rather than an act. Tony Bland was considered to have no
‘best interests’‘ in remaining alive and hence there was no longer any duty of care towards him.
Corresponding cases in America include that of recognised in statute. The legal status of positive advance statements in which the competent patient declares how he or she would wish to be treated in the event of becoming mentally incapacitated was tested in the case of Burke in 200513. Leslie Burke had cerebellar ataxia and foresaw circumstances in which he might become both mentally incapacitated and unable to make decisions for himself and with the progression of his disease, unable to swallow. Under such circumstances he wished to be fed by tube. Lord Phillips remarked at paragraph 34 that in such a situation “that has caused Mr Burke concern, that of the competent patient who, regardless of the pain, suffering or indignity of his condition, makes it plain that he wishes to be kept alive, no authority lends the slightest countenance to the suggestion that the duty on the doctors to take reasonable steps to keep the patient alive in such circumstances may not persist. Indeed, it seems to us that for a doctor deliberately to interrupt life-prolonging treatment in the face of a competent patient's expressed wish to be kept alive, with the intention of thereby terminating the patient's life, would leave the doctor with no answer to a charge of murder”.
Withdrawal of hydration and ‘terminal sedation’ in palliative care.
In jurisdictions where euthanasia and assisted suicide are outlawed it has been argued by Right to Die Societies that death could be brought about through the cessation of hydration and the use of
‘terminal sedation’. For example in 1984, Dr Helga Khuse famously said that "if we can get people to accept the removal of all treatment and care-especially the removal of food and fluids-they will see what a painful way this is to die and then, in the patient's best interests, they will accept the lethal injection"14.
The term ‘terminal sedation’ has been defined as the use of continuous sedation to render the patient unconscious until death when coupled to the withdrawal of hydration and nutrition. For example, in a paper by Rietjens et al.(2004) from the Netherlands, ‘terminal sedation’ was defined as
“the administration of drugs to keep the patient in deep sedation or coma until death, without giving artificial nutrition or hydration” 15. The Royal Dutch Medical Association issued guidelines for palliative sedation in 2005 (updated in 2009)16. The guidelines define terminal sedation as “the use of drugs in the last two weeks of life to induce deep unconsciousness for patients who have “refractory
symptoms”, combined with the withdrawal of nutrition and hydration.”
In England dying patients are increasingly being placed on the Liverpool Care Pathway (LCP) when they are deemed to be in the last few hours or days of life. Hydration in the terminally ill patient is often considered unnecessary in the LCP as are routine observations, tests and active interventions.
Continuous deep sedation with intentional dehydration is often practiced as part of the LCP where only 16% of patients are continued on artificial fluids and where artificial hydration is only commenced in 2% of patients17.
The distinction between ‘palliative’ and ‘terminal’
sedation is important as the latter is regarded by some as ‘slow euthanasia’. This is succinctly stated in a paper by Rietjens et al:
“Continuous deep sedation has possibly increasingly been used as a relevant alternative to euthanasia. The use of euthanasia had decreased from 2.6% of all deaths in 2001 to 1.7% of all deaths in 2005 (a decrease of 1200 cases), while continuous deep sedation increased by 1800 cases from 5.6% to 7.1%. This increase took place mostly in the subgroups in which euthanasia is most common: patients attended by general practitioners and those with cancer. In 9% of the patients, the use of continuous deep sedation was preceded by a request for euthanasia that was not granted.
Although euthanasia and continuous deep sedation generally address different clinical problems, this suggests that substitution might be possible in some situations. This is in line with the finding that many Dutch physicians have been found to consider high quality end of life care as an alternative to remarked: “It seems that there is substitution from the practice of euthanasia to the practice of continuous deep sedation”. Furthermore she went on to say “We can see in our study that those sub-groups where we saw an increase of continuous deep sedation - just in those sub-groups - we saw a lowering of the frequency of euthanasia.” Professor Clive Seale has suggested that continuous deep sedation is far from uncommon across the UK.
Indeed, according to Seale “the surprising thing was that in the UK the prevalence of continuous deep sedation until death was very high indeed, 16.5% of all UK deaths." This is twice as high as in Belgium and the Netherlands.
Dr Michael Irwin, a past President of the Voluntary Euthanasia Society in the UK (now Dignity in
Dying) equated “terminal sedation” to “slow euthanasia” and stated that “‘compassionate physicians, without publicly declaring the true intention of their actions, often speed up the dying process in this way. Many thousands of terminally-ill patients are so helped globally every year.’”19 Dr Irwin argued that terminal sedation without hydration is tantamount to euthanasia “‘because the comatose patient often dies from the combination of two intentional acts by a doctor – the induction of unconsciousness, and the withholding of food and water.’
There are two situations when tube feeding and/or hydration might be required in the context of palliative care. Dying patients may not be able to access hydration and nutrition because of their frail state and will need assistance. However, patients may be rendered incapable of oral intake if they are sedated or otherwise become confused or disorientated as a result of medication. Dr Gillian Craig20 has rightly argued that once a doctor decides that sedation is needed, “the doctor must try to find a drug regime that relieves distress but does not prevent the patient from taking fluid and nourishment, does not prevent verbal communication with friends and relatives, and does not lead to toxic side-effects or expedite death.” If death is imminent it is not essential to initiate artificial hydration; however, “ethical problems arise if sedation is continued for more than one or two days, without hydration, as the patient will become dehydrated…If naturally or artificially administered hydration and nutrition is withheld, the responsible medical staff must face the fact that prolonged sedation without hydration or nutrition will end in death, whatever the underlying pathology.”
Patients without dysphagia will normally be able to satisfy their requirements for fluids unless they are physically incapable of doing so. If a dying person does not desire food or drink or is unable adequately to ingest them, then they should be offered what they want by mouth; all other comforts including companionship and spiritual support should never be abandoned21.
The ethics of ‘palliative sedation’.
Pius XII addressed the question as to whether it could ever be morally legitimate to relieve suffering by rendering the patient unconscious22. To render someone unconscious is to deprive them of their ability to act as moral agents. In short, he answered that whilst there is a “moral obligation not to be deprived of consciousness without true need” it would be legitimate to relieve intolerable suffering in exceptional circumstances by rendering the patient unconscious if there were no other means to
relieve the suffering and with the agreement of the patient. “It would be obviously illicit to practice anesthesia against the express will of the dying (when he is sui .iuris”).
“Thus the Church asks that the dying should not be deprived of consciousness even if they fall into the state of unconsciousness. When nature does it, men must accept it; but they must not do it in their own initiative, unless they have serious reasons for that.
It is also the desire of the dying who have the faith
It is also the desire of the dying who have the faith