The Right to say NO


We all have the right to refuse medical treatment.  If it is carried out without our consent then it can constitute an assault and give rise to both civil and criminal proceedings.  But what is the position if we are unconscious at the time or otherwise lacking in mental capacity?  If we do lack mental capacity are our rights any less than when we enjoy full capacity?

As part of Dementia Awareness week I delivered a lecture on this subject to staff at West Suffolk Hospital on the 19th May.  My lecture notes are set out below.  All cases will turn on their own merits, my notes should only be taken as guidance and advice should be obtained on any specific issue.  Please see the site Disclaimer under More for further details

“Any medical treatment must be lawful”dentist

“Any medical treatment must be lawful.  The question for the court is not whether its lawful to withhold treatment, but whether its lawful to give it.  Without consent (or a best interests decision if a person lacks capacity) medical treatment is unlawful”.  Aintree NHS Trust v James 

We all have the right to say NO.  You don’t lose that right just because there are questions over your mental capacity.

“It is a basic right to be able to manage your own property and affairs and no lawyer or court should rush to interfere with that right.” Kennedy LJ Masterman v Jewell 2003

 We have the right to be foolish.  You don’t need the approval of the “prudent the wise or the good.”  Bird v Luckie 1850

“People with disabilities, both mental and physical, have the same human rights as the rest of the human race.  Far from denying them the State must take reasonable steps to cater for their special needs.”  Lady Hale P v Cheshire West 2014

The Mental Capacity Act 2005

 Where it is suspected a person may be lacking mental capacity then the Mental Capacity Act 2005 (‘MCA’)and the accompanying Code of Practice must be considered.

Principles of the Act

    • There is an assumption you have the capacity to make a decision until its proved otherwise. This must be considered on a case by case basis.
    • You must be given all practicable help to make that decision.
    • You have the right to make unwise decisions.
    • All acts done on your behalf must be in your best interest.
  • Before any act is done consideration must be given as to whether there is a better way to implement it.

The Code of Practice sets out detailed guidance on the implementation of the MCA

Lacking mental capacity

 People who lack capacity

Lack of capacity cannot be established merely by reference to age or appearance or by a condition, or aspect of behaviour which might lead to an unjustified assumption.

 Inability to make decisions

You cannot make a decision if you are unable to, understand relevant information, retain it, consider it as part of the decision making process and communicate your decision.

Best Interests

All decisions made on behalf of a person lacking capacity must be made in their best interest.  They should not be based on age or appearance or by a condition, or aspect of behaviour which might lead to an unjustified assumption.

 All relevant circumstances must be considered.  Is capacity likely to be regained and if so when?

The person concerned must be helped to participate in any decision where possible.  Any decisions on life sustaining treatment must not be motivated by a desire to cause death.

Where possible regard should be had to the persons past and present wishes and any written statement made when they had capacity, their beliefs and values and any other factors they would consider if able to do so

Where appropriate and possible, anyone caring for a person lacking capacity should consult anyone named by the person as someone to be consulted, any carer  or other person interested in their welfare and attorneys under an LPA and any court appointed deputy.

Standing in the shoes of the patient

 In Aintree University Hospital v James 2013 the Supreme Court restated a number of established principles under the MCA.  The Court looks to do what the patient would do for himself but cannot do any more.  Patients can’t demand treatment which a doctor considers inappropriate.  We are all individuals and our own likes dislikes and values must be respected.  A persons own wishes are fundamental when considering best interests.

In considering life sustaining treatment the court considered:

‘Futile treatment’ whichis treatment that is ineffective or of no benefit to the patient.  A benefit may arise even though it has no curative effect.

‘Recovery’ means the resumption of a quality of life which the patient regards as worthwhile not that which doctors or anyone else would regard as worthwhile.  It is no a question of averting death by giving the life sustaining treatment

 ‘Best interests’ will always be an elusive concept.  Welfare should be considered from medical, social and psychological perspectives.  What will any medical treatment involve and will it succeed?  What will be the outcome for the patient?   How would they view it?  Anyone with a relevant opinion should be consulted.

The test is entirely subjective – there is no reasonable patient test.  We don’t need to be reasonable when we have capacity why should we be burdened by it when we don’t.  However we are not  entitled to any additional rights just because we lack capacity.  We can’t always have what we want.  It wont always be possible to know what a patient wants.  Past views may have been coloured by the stresses and strains of their current predicament.  The best that can be said is that we believe the course of conduct proposed is what they would have wanted.  Where a person wishes and feelings and their beliefs and values can be ascertained they should be taken into account as they are a component in making the choice which is right for the person as an individual human being

Recording you wishes in writing

The Mental Capacity Act 2005 and Code of Practice provide a statutory framework.  As with all aspects of the law it is better to express your views than have them implied by law.  you can do this in a number of ways:

Make a Lasting Power of Attorney

Create an Advance Decision to refuse medical treatment

Prepare an end of life care plan

Powers of Attorney

There are a number of different powers of attorney and the differences between them can be misunderstood.  When a person claims they can make decisions for a third party under a power of attorney its important to establish what kind of power of attorney they have and when it was created.  There are four main kinds, but when it comes to taking part in any medical decision only the Lasting Power of Attorney for Health and Welfare will be relevant.  These can only be made after the 1st October 2007.  We list below the main kinds:

General Power of Attorney 1971 to date

This is a simple document which allows A to appoint B to manage his financial affairs.  They are only valid while A has mental capacity.

Enduring Power of Attorney 1985-2007

To be valid they must have been granted prior to the 1st October 2007.  They only deal with financial issues.  An attorney under an EPA cannot make decisions concerning a persons personal welfare.  An EPA did not need to be registered at inception to be valid.

 Lasting Powers of Attorney 2007 -to date

These came in effect on the 1st October 2007.  They are not valid until registered with the Office of the Public Guardian.  There are two kinds:

  •  Financial affairs
  • Health and welfare

 Lasting Power of  Attorney  for Health and Welfare (‘Health LPA’)

The Act simply states that a person (‘the donor’) can appoint attorneys to make general or specific decisions about the donors personal welfare.  It only applies when an individual has lost capacity and is case specific.  The authority granted can be very wide. If it is to be limited, the power of attorney must specifically say so.  Amongst the decisions that can be made are:

  •  Deciding where your should live and with whom
  • Deciding what care, medical treatment or procedures or therapies you should or should not receive.  This will only include life sustaining treatment if you specifically say so
  • Making decisions about your dress, diet or personal appearance
  • Choosing your social and cultural activities
  • Making decisions over any work, education or training you receive
  • Deciding where you go on holiday
  • Controlling who you meet
  • Deciding who has access to your personal papers, correspondence, medical records and other personal information
  • Agreeing an end of life care plan on your behalf

Life sustaining treatment

This is any treatment that a doctor consider necessary to keep you alive.  The treatment can range from cardio pulmonary resuscitation to a simple course of antibiotics.

Advance Decision to refuse medical treatment

An Advance Decision is generally a signed and witnessed written statement which sets out the medical treatment to be carried out or continued when a person loses mental capacity.  It won’t apply where unspecified treatment is required or any circumstances specified in the Advance Decision are absent or where unanticipated circumstances arise e.g. medical advances which could help the condition.

They don’t cover life-sustaining treatment unless they contain a specific statement that it is to apply even if life is at risk and the Advance Decision has been signed and witnessed.  They can  be invalidated by a later Health LPA or end of life care plan if the two conflict with each other.

An Advance Decision cannot refuse basic nursing care essential to keep a person comfortable, such as washing, bathing and mouth care.  You also can’t refuse the offer of food or drink by mouth or measures solely designed to maintain comfort such as pain relief.  You cannot demand treatment that a healthcare team considers inappropriate or ask for anything that is against the law such as euthanasia or assisting someone in taking their own life.

Advance care plan — End of life care

These are a less formal document and should be considered by a persons health care team where,  death may be imminent, they are living with dementia or it is anticipated they may die in the next 12 months.  When considering such a plan it’s important to consider a persons rights under the MCA.  Regard should also be had to any Health LPA or Advance Decision that has been made.  An Advance Decision can be invalidated by the preparation of a later care plan which is inconsistent with it.  This has the potential to cause a significant problem if previous decisions have been made about the refusal of life sustaining treatment.  While a patient is entitled to change their mind it is important not to inadvertently invalidate a document a person is wanting to rely upon.



 Advance decision to refuse medical treatment and S.63 Mental Health Act 1983 (‘MHA’)

 Notts Healthcare Trust v J (2014)

 J was a 23 year old male prisoner and Jehovah’s Witness detained under the MHA.  He had a severe personality disorder that caused him to self harm which resulted (due to anticoagulant medication) in profuse bleeding.

He’d signed an Advance Decision refusing blood transfusions.  S.63 MHA states consent is not required for medical treatment prescribed for a mental disorder.  This would include the treatment of physical conditions arising from the mental disorder.  He could therefore be treated notwithstanding the Advance Decision.  This would include a blood transfusion.

The Doctor concerned said they had ethical issues about overriding the Advance Decision.  The Court said it wasn’t in the ethics business.  It was there to state and apply the law.

The Trust sought a declaration that it would be lawful to ignore S.63 and follow the Advance Decision.  It being clearly understood that in the absence of preventative action J might cause further bleeding which could result in his death whether this was his intention or not.

The court held the hospital could follow the Advance Decision

Personality and capacity

 Wandsworth CCG v IA and TA (2014)

 IA was 59 with Type 2 diabetes mellitus, partially blind and with limited mobility.  He also had kidney disease and anaemia  with further complications arising from diabetes which put him at risk of severe infection. In 2007 he was the victim of a savage assault which resulted in skull fractures and a brain haemorrhage resulting in a loss of mental capacity.  He was said to have been left with memory problems, inflexibility of thought, impulsivity and problems with mood control. This was affecting his ability to make decisions.

In 2013 he was hospitalised following an episode of diabetes related hypoglycaemia.  The court had to consider if he had the mental capacity to take part in organising his care plan on discharge from hospital.

 The court held:

  1.  There was no  need to set the threshold in relation to capacity to understand unduly high
  2.  It was sufficient for IA to understand the relevant facts

There had ben repeated assessments of IA’s capacity  over the previous 2 years, many of which hadn’t involved AI personally due to his refusal to take part.

Notwithstanding that assessments on the basis of case notes are an inadequate substitution for clinical interview, there was a body of opinion stating IA lacked capacity, although this view was not universal.

It was agreed a further consultant neuro-psychiatrist would be instructed and that IA could take part in their appointment.  This resulted in the appointment of Dr Anjum Bashir who IA co-operated fully with.

Dr Bashir found IA had capacity in the relevant domains.  The 2007 brain injury wasn’t necessarily a static condition and he had direct experience of victims of such attacks improving their decision making capacity over time.

The court found that on the three issues they were adjudicating on IA had mental capacity.  These were medical treatment, accommodation and finances.  IA had benefited from receipt of carefully explained advice from a medical professional he trusted.

The court went on to say they noted previous unwise decisions about medical treatment and accommodation.  These didn’t necessarily demonstrate lack of capacity, but reflected his challenging personality.  In part they predated his brain injury and so couldn’t be attributed to loss of mental capacity.

He has an inherent distrust of social workers which was probably due to a long standing grievance over the compulsory purchase of his house.

The case is important for not leaping to assumptions in respect of IA’s eccentric behaviour and also for following the precepts of S.1(3) MCA 2005 which provides that lack of capacity is not to be presumes until all practical steps have been taken to help a person make a decision and they have failed.

Heart of England NHS v JB (2014)

 JB was a paranoid schizophrenic with many physical health problems including hypertension, badly managed insulin dependent type 2 diabetes, diabetic retinopathy and anaemia, foot ulcers and a gangrenous right foot.  She declined surgery, the foot mummified and detached from her leg.  She refused a further amputation of part of her leg which was required to prevent the possible spread of infection.

Her psychiatrist stated she lacked capacity because her ability to weight the relevant information was compromised  by her tendency to minimise and disbelieve what her doctors said.  An independently instructed psychiatrist and surgeon concluded JB had capacity to decide about amputation.

The court said JB needed to have no more than a general understanding of her condition as would be required from the population at large.  A comprehensive understand of her condition wasn’t required.  The common strategy of dealing with the unpalatable by hoping it will go away are not to be confused with incapacity.  We can’t ask more of the incapacitated than we can of the capacitated

The court held Surgery was the only sensible course of action but we are all free to ignore sensible advice. There was no evidence of a link between her mental illness and alleged incapacity.  Isolated incidents of eccentric behaviour couldn’t imply it.  The requirement to presume capacity and then on the balance of probabilities establish incapacity had not been applied.  The psychiatrist has started from the presumption of a lack of capacity and looked to JB to prove otherwise.  The fact of a psychiatric disorder  was not sufficient in itself to show that any defects in her reasoning capacity demonstrated incapacity within the meaning of the MCA

Refusal of blood transfusion for Jehovah’s Witness honoured despite lack of written Advance Decision

Newcastle upon Tyne NHS v LM (2014)

LM a Jehovah’s Witness since the 1970’s  suffered from depression and paranoid schizophrenia.  In January 2014 a consultant psychiatrist reported her mental health was as good as he’d known it for a number of years.  On 6th Feb she was admitted to hospital having been found wandering in a confused state outside her home.  Bruising suggested recent falls.  Her medical records were marked from the outset that she was a Jehovah’s Witness and wasn’t to receive blood products.  On the 11th February she began to bleed from a large duodenal ulcer.  She was assessed as being mildly confused but there was no evidence of active psychotic illness, she was not psychiatrically unwell.

On the 12th Feb LM informed the  medical staff she didn’t want any blood transfusion.  They were satisfied she had full capacity and understood the consequences of her decision.  The hospital had forms to make an Advance Decision but there was no evidence she was offered this and there was no record of her wishes other than in her notes.

On the 13th Feb LM’s condition deteriorated, she had to be incubated, ventilated and sedated resulting in a loss of capacity

The trust sought a declaration it would be lawful to withhold blood transfusions from LM.  She had made her wishes known with knowledge of risk of death and it was in her best interests having regard to her wishes and beliefs

An urgent decision was required due to LM’s failing health

The Court held that it would be lawful to withhold transfusion.  It did so on two grounds

  1.  That LM had made a valid decision to refuse blood transfusions while she had capacity and that decision continued even after she lost capacity.  This has ‘raised some eyebrows’ as the MCA makes it clear that decisions to refuse like sustaining treatment must be in writing, signed and witnessed S.25(5) MCA 2005.
  2.  The second ground was one of best interests under S.4(6) MCA 2005 having regard to her beliefs and values.

Withholding of life sustaining treatment notwithstanding patients wishes

 An NHS Foundation Trust v VT (2014)

 VT was housebound following a stroke.  He suffered a cardiac arrest which caused loss of oxygen to the brain for 17 minutes resulting in a serious deterioration of his condition.

The Trust sought declarations it would be unlawful to provide intensive care and or resuscitation other than bag and mask resuscitation to address any acute episode in the event of any further deterioration in VT’s condition.

His family wanted such treatment.  They believed VT would have wanted to survive no matter what his circumstances or quality of life and regardless of pain or any prospect for long term survival.  Only Allah could be make any decision to end life.  VT’s suffering would cleanse him of his sin and would prepare him for death and would be borne by him with stoicism in recognition of that process.

All medical opinion including that for the family stated VT was minimally conscious and had suffered a severe brain injury.  There was very little prospect of a meaningful recovery. At most he may survive for a further 12 months.

The Doctor treating VT stated that even if VT’s family had expressed his wishes accurately pursuit of them would be against all of his medical ethics.

The court held that any intervention would be wholly contrary to the central medical objectives of intensive care.  To administer CPR would cause pain for no justifiable medical reason other than to accommodate religious belief.  It would cause those whose aim in life is to help a patient to cause him harm and this was neither ethical or lawful.

Admission to intensive care would be wholly futile:

  1.  It would be likely to cause distress, discomfort and pain.
  2.  It wouldn’t achieve any positive medical benefit.
  3.  It would be life threatening in itself.
  4.  It would further compromise VT’s medical organs and was therefore medically harmful.

VT couldn’t require doctors to provide futile and harmful treatment.