Case 18 Starving to death

Doris Evans is an 84 year-old lady with a history of rheumatoid arthritis and cognitive impairment. She has been resident in Parkview care home for six years, over which time her level of dependency has gradually increased. Until a couple of months ago, Mrs Evans was able to mobilize with her Zimmer frame approximately 20 metres to get to the residents’ lounge and dining room. However, following a particularly bad cold, she has become bedbound. Her oral intake has been much reduced for some weeks and Mrs Evans now exhibits little interest in the world around her.

The nursing home staff ask a GP registrar to see Mrs Evans on his routine round of Parkview as she has begun to suffer skin break down with two areas of pressure damage over the sacrum and the left heel. Her regular GP is on extended leave. The registrar reviews Mrs Evans and assesses the areas of pressure damage. He looks at her Parkview records and notes that there has been no prior discussion as to what she, her GP and her family would wish to do in relation to hospitalization and the intensity of medical intervention. He is unable to contact Mrs Evans’ next of kin (her cousin) and elects to send her to the medical take.

Dr Esposito is the medical registrar on-call. He makes a brief medical assessment of Mrs Evans. She is malnourished and mildly dehydrated. She has two areas of early pressure damage (grade 2) as documented by the GP registrar and there is no sign of frank infection. Haemodynamic indices are within the normal range. Mrs Evans is conscious but withdrawn. She appears to have underlying cognitive impairment and is not orientated.

What course of action should Dr Esposito follow?

Dr Esposito believes that Mrs Evans is extremely frail and that her long term outlook is not good. There is no evidence of an ‘acute’ medical problem in terms of infection. It seems unlikely that she will die imminently. Mrs Evans has evidence of skin breakdown and in Dr Esposito’s view, appropriate nutritional support and fastidious nursing care will be required if this skin breakdown is to be halted.

Dr Esposito arranges for admission. He prescribed VTE prophylaxis and organizes for a fine bore nasogastric feeding tube to be passed and for Mrs Evans to be placed on the unit’s emergency nasogastric feeding regime until reviewed by the dietician. She is at liberty to take oral food and fluid should she wish and should her conscious level be sufficient. There does not appear to be a specific neurological issue with swallowing. A pressure relieving mattress is acquired and a nursing care plan completed. Dr Esposito is conscious of the need to strike an appropriate balance in relation to the intensity of investigation. He sees no indication for an intravenous line or radiology assessment and does not order any blood tests. He places Mrs Evans as ‘not for resuscitation’.

What are your thoughts on this plan?

The next morning, Mrs Evans’ care plan is in progress and enteral feeding is in place. She seems comfortable and stable although she remains disorientated and withdrawn. Her cousin (Mrs Kempson) arrives and asks to see the doctor. The FY1 doctor on ward cover, Dr Blewitt, attends half an hour later. Mrs Kempson is keen to receive an update from Dr Blewitt but quickly focuses upon the presence of the feeding tube. She states that Mrs Evans had always said that she wanted to die peacefully and that she would not want ‘to be kept alive as a vegetable’. She had been consistent in this view for as long as Mrs Kempson could remember, having helped to nurse her own mother following a disabling stroke. Mrs Kempson asks that the artificial feeding be stopped.

What is your view?

Dr Blewitt feels that it is not his call to stop the feed and is worried that once an intervention such as feeding has been commenced, it may be unlawful to withdraw it. Moreover, he agrees with the approach taken by Dr Esposito, and ratified by the consultant on the post-take ward round, the day before: Mrs Evans is not competent to participate in the decision, she is not dying imminently, skin breakdown would constitute an unpleasant and undignified death and it is therefore in her best interests – in the absence of a formal advanced directive – to receive nutritional support.

Do you agree with Dr Blewitt’s thought processes?

Dr Blewitt is on ward cover once again 48 hours later, and is called to the ward about Mrs Evans. The nursing staff have found her to be unresponsive. When last seen half an hour prior, all had been stable. All were aware that she was ‘not for resuscitation’.

What would you put down as the cause of death?

Dr Blewitt fills in the death certificate and elects to write 1a dementia and 2 rheumatoid arthritis. Later on that month, the departmental morbidity and mortality (M&M) meeting considers Mrs Evans’ notes. It is noticed that no blood tests were undertaken on admission and the team considers that the most likely cause of death was a cardiac arrest secondary to re-feeding syndrome.

Expert opinion

Had Mrs Evans’ regular GP seen her, it might have been decided that her best interests were served by palliation in the care home setting – irrespective of the pressure sores. Given the paucity of information available to the GP registrar, the course of action was reasonable. Her decline sounds as though it was consistent with advancing dementia, although a depressive element was possible. Mrs Evans was let down by a lack of advance care planning.

She was clearly at risk of re-feeding syndrome and it is imperative to ensure that the information required to manage an intervention (enteral feeding) safely is to hand when embarking upon it. It is likely that Mrs Evans was hypokalaemic and that potassium and magnesium replacement might have prevented her death.

Whilst Dr Esposito’s decision-making processes were generally sound, the oversight in relation to bloods clearly violates the Trust’s enteral feeding policy. Whilst it can be argued that the outcome was not a bad one for Mrs Evans (given her cousin’s comments), the Trust will need to closely examine its processes to ensure that the risk of this sort of incident recurring are minimized.

Legal comment

Advance decisions

Under the Mental Capacity Act (MCA) 2005 statutory rules were introduced with clear safeguards to confirm that people may make a decision in advance to refuse treatment if they should lose capacity in the future. It means that whilst a person retains mental capacity, they can make a decision in advance about medical treatment they might not want in the future when they lack capacity. A patient can use an Advance Decision (also called an Advance Directive) to indicate their wish to refuse all or some forms of medical treatment if they lose capacity in the future. A ‘living will’ is not a legal term.

From October 2007, to be a valid Advance Decision it will need to:

• be made by a person who is 18 or over and has the capacity to make it;
  
• specify the treatment to be refused (in lay terms);
  
• specify the circumstances in which this refusal would apply;
  
• include an express statement that ‘the decision stands even if life is at risk’;
  
• not have been made under the influence or harassment of anyone else;
  
• not have been modified verbally or in writing since it was made;
  
• include the date the document was written;
  
• include the person’s signature;
  
• include the signature of the person witnessing the signature, if there is one.

The code of practice provided to healthcare professionals regarding the MCA states that it would be helpful for information about the name and address of the person’s GP to be included and for a copy to be lodged with the GP.

The MCA states that an Advance Decision to refuse treatment must refer to a specified treatment(s) that may set out the circumstances when the refusal should apply. A statement that indicates a general desire not to be treated would not constitute an Advance Decision, but an Advance Decision refusing all treatment in any situation (for example, where a person explains that their decision is based on their religious or personal beliefs) may be valid and applicable.

If doctors are alerted to the possibility that a patient might have made an Advance Decision, reasonable efforts such as contacting relatives of the patient and the patient’s GP, should be made to establish whether this is the case. Treatment should not be delayed while attempts are made to establish whether an Advance Decision has been made, if the delay would prejudice the patient’s health.

Once the healthcare professionals who are considering treatment have been informed verbally of the existence of an Advance Decision or presented with a written Advance Decision, they need to consider:

• whether it is an Advance Decision within the meaning of the MCA;
  
• whether it is valid;
  
• whether it is applicable to the treatment.

An Advance Decision to refuse treatment is not valid if the patient has withdrawn it (this does not need to be in writing), or if the patient has done something clearly inconsistent with the Advance Decision.

There are two issues that should be considered in this case. Firstly, although the next of kin should be consulted about the patient’s treatment she does not have any legal authority to make decisions on the patient’s behalf. There was a failure to establish in advance whilst she had capacity what her end of life care wish was.

It might be very difficult for a treating doctor to be confident that the patient who has said to have made an oral Advance Decision during the course of the conversation with a relative, had the mental capacity to make a decision at the time and was provided with sufficient information to enable an informed decision to be made.

Also it would be difficult to establish whether the person is subject to the undue influence of the relative at the relevant time. Indeed it may be difficult to establish whether the reported conversation took place at all. Disputes about the existence, validity or applicability of an Advance Decision can be referred to the Court of Protection.

Withdrawal of treatment

The law places withdrawing treatment in the same category as withholding treatment, not in the category of killing. A doctor may withdraw treatment on the same grounds as they may withhold treatment. The law draws a distinction, as examined in the case of Bland (Airedale NHS Trust v Bland (1993) between where a doctor decides not to provide, or not to continue to provide, treatment or care for his patient which could or might prolong life, and where the doctor decides, for example by administering a drug, to actively bring the patient life to an end. Even if the doctor intends the death of a patient by withholding or withdrawing treatment, then it may be lawful to do so in the best interests of the patient. The British Medical Association Guidelines state there is no ethical distinction between withdrawing and withholding treatment.

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