Stroke accounts for 11% of all deaths in England and Wales and is the single largest cause of adult disability.2 Dysphagia is a term used to describe swallowing difficulty associated with foods, liquids or saliva and is common post-stroke. The reported incidence has varied in different studies depending on definition but is commonly quoted at around 40%.3
Malnutrition and stroke
Multiple factors may contribute to a high risk of malnutrition after stroke including physical, social and psychological issues, which all impact on quality of life, these include:
- Swallowing problems (dysphagia)
- Restricted arm function, ability to self-feed/drink
- Communication problems
- Cognition problems (memory, attention, perception)
- Visual problems
- Absence of teeth and dentures
- Poor mouth hygiene
- Unfamiliar foods/environment
The study demonstrated that dietary intake predicted rehabilitation outcomes, flagging the importance of a timely and accurate assessment of nutritional status, nutritional requirements and dietary intake; equally important is individually targeted nutritional management as part of stroke therapy.5
National and local guidance
NICE Clinical Guideline 68 (2008) recommends:
- Patients with acute stroke who are unable to take adequate nutrition and fluids orally should have NG feeding initiated within 24 hours of admission.
- RCP National Clinical Guidelines for Stroke 2012 recommend people with acute stroke who are unable to take adequate nutrition and fluids orally should be:
- Considered for tube feeding with a nasogastric tube within 24 hours of admission
- Considered for a nasal bridle tube or gastrostomy if they are unable to tolerate a nasogastric tube.
- Patients with acute stroke if clinically appropriate and agreed by the medical team, should be given a nasogastric tube and feed commenced within 24 hours.6
An 89-year-old woman with dementia from a nursing home was admitted to the stroke unit with a left anterior circulation infarction. She was fully dependant on nursing care for personal hygiene and was disorientated in time and place. She also had urinary and faecal incontinence, limited verbal communication (yes/no responses) and required encouragement and assistance with feeding. The nursing staff’s swallow assessment on admission stated that she was too drowsy to assess and was placed nil by mouth. She was unable to be roused for the subsequent speech and language therapy (SALT) assessment and remained nil by mouth.
An NG tube was inserted by the nursing staff, as per the local stroke protocol. Dietician assessment recommended NG feeding to full requirements for 12 days.
Mrs X was discussed in the multidisciplinary (MDT) meeting; the patient presented with expressive and receptive dysphasia, not following commands, a hoist was needed for transfer and no clinical improvements were noted.
The patient did not have mental capacity to make decisions on artificial feeding and it was agreed that long-term gastrostomy feeding was not in her best interest. The stroke team discussed Mrs X’s care with the next of kin regarding a decision to remove the NG tube; a trial of oral feeding was agreed.
‘At risk’ feeding with a puree diet or yogurt via a teaspoon, with oral intake of <300kcal was commenced. The patient was discharged back to the nursing home and the GP and nursing home manager were made aware of the consultant’s decision on feeding.
A 75-year-old fit and well man was admitted to the stroke unit with a left-sided anterior circulation intraparenchymal haemorrhage. A swallow screen was carried out by nursing staff on his admission and he remained nil by mouth as he was not following commands.
A SALT assessment concluded a functional swallow was present and advised normal fluids and a soft diet. Dietetic assessment indicated an oral intake of <300kcal/day; he was drowsy at meal times and was often not compliant while being fed. An NG tube was inserted, as per protocol. The patient and the family were in agreement with this decision.
He was NG fed for 10 days in order to supplement his oral intake, which remained at ~500kcal/day maximum. He made slow progress with physiotherapy and was not engaging with SALT or occupational therapist (OT) assessments. Mr Y pulled out his NG tube and was reluctant for a new tube to be inserted on two occasions.
His progress was discussed in a stroke MDT and a best interests meeting was arranged, which recommended the need for gastrostomy in order to meet his nutritional requirements and to aid his rehabilitation potential.
His capacity was assessed by the consultant and he was deemed not to have capacity to make a decision on artificial feeding. The stroke team met with his wife and son and explained the need for gastrostomy insertion to fulfil his nutritional requirement and the family were in agreement. The consultant completed the appropriate consent form for a percutaneous endoscopic gastrostomy (PEG) and this was carried out successfully. Four days post PEG insertion, Mr Y’s oral intake had improved to 1000kcal a day, he was also engaging with physiotherapy, OT and SALT, thus showing improvements. Mr Y was discussed in the MDT meeting six days post PEG insertion and rehabilitation goals were agreed.
The stroke team met with the family who were in agreement for a referral to be made to the local rehabilitation unit.
Feed or not to feed: ethics dilemma
The concept of a distressing death, caused by starvation or dehydration as a result of a fatal condition, understandably leads to the commonly held belief that nutrition must be achieved by all means possible. This is a valid belief if the patient is able to perceive artificial nutrition support as beneficial. On the other hand, if cognitive capacity is seriously impaired and likely to be progressive, and if there is no potential for achieving the objectives of improving duration or quality of life, no benefit can accrue from imposing artificial nutrition support, which would be unethical.7
Scottish Intercollegiate Guidelines Network (SIGN) Dysphagia Management Guidelines8 addressed the ethics of tube feeding. The problems that may be encountered with tube feeding combined with the high mortality in enterally fed patients, emphasise the importance of weighing carefully the risks and benefits for each patient. There is no evidence that PEG feeding actually improves quality of life.
In patients with limited life expectancy there should be good indications for PEG placement, as feeding may merely slow the rate of decline or prolong an imminent death. The decision to place a PEG should balance the risks and benefits and take into consideration individual patient needs. Patients should also be given the opportunity to decide whether they want to go ahead with the procedure.
The Mental Capacity Act
Clinicians are often confronted with decisions about mental capacity. The Mental Capacity Act 20059 is the first statutory law in this area, protecting people who lack capacity to make decisions and provides help for clinicians in dealing with capacity problems.10
The Mental Capacity Act impacts on all healthcare workers who may, at any time, work with patients who need to make decisions at any level and could permanently or temporarily lack capacity to make that decision. The Mental Capacity Act sets out five core principles, which should guide all decisions made regarding capacity:
- A person must be assumed to have capacity unless it is established that they lack capacity. This applies to each decision.
- A person is not to be treated as unable to make a decision unless all practicable steps to help them to do so have been taken without success.
- A person is not to be treated as unable to make a decision merely because they make an unwise decision.
- An act done or decision made under this Act, for or on behalf of a person who lacks capacity, must be done or made in their best interests.
- Before the act is done or the decision is made regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action.9
If a person has been assessed as lacking capacity then any action taken, or any decision made for or on behalf of that person, must be made in his or her best interests (principle 4). The person who has to make the decision is known as the ‘decision-maker.’ The ‘decision maker’ must follow the checklist for best interests given in the MCA Code of Practice.9
The Mental Capacity Act enables people who have capacity to set out their wishes to refuse medical treatment in the future should they lose capacity. If an advanced decision has been made, the instructions in it must be followed after the person has lost mental capacity unless there are sound reasons to think that the individual has changed their mind. Where possible, staff should make every effort to find out if a service user has made an advanced decision.
Details of any advanced decision should be recorded in the patient’s medical notes and on the alert sheet and shared with the appropriate health and social service colleagues if the individual loses capacity.9
Advanced decisions to refuse life sustaining treatment
This is a legal document and must be in writing. It must be signed by the patient and witnessed; it must also be signed by a witness. The advanced decision must apply specifically to the treatment in question.9
East Sussex healthcare tube feeding in stroke patients care process
At East Sussex Healthcare Trust (ESHT) the stroke team carry out weekly multidisciplinary team meetings chaired by the stroke consultant and attended by the stroke dietician, SALT, physiotherapist, OT, stroke specialist nurse, nurse matron, discharge liaison sister, community stroke rehab team representative and social worker. At the MDT open discussions are had regarding patients post-stroke medical care, rehabilitation goals and nutrition.
The stroke team follows the principles set out in the MCA9 involving patients and/or family/friends, to any decision made regarding NG and/or PEG insertion.
For patients who have capacity and agree to artificial feeding, which the clinician feels is medically indicated, there is generally little controversy. If a patient is deemed to lack capacity, in the case of making a decision for gastrostomy insertion, it is the consulting doctor in charge of patient care who would be the ‘decision-maker’ supported by the Stroke MDT team.
Conflict of interest: none declared
1. Department of Health (2007). National Stroke Strategy. Assessed online: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_081059.pdf Accessed 10/10/14
2. National Institute for Health and Clinical Excellence (2008). Stroke (CG68) Diagnosis and initial management of acute stroke and transient ischaemic attack (TIA). Assessed online: http://publications.nice.org.uk/stroke-cg68 Accessed 10/10/14
3. Royal College of Physicians (2012). National clinical guideline for stroke. Assessed online: http://www.rcplondon.ac.uk/resources/stroke-guidelines Accessed 10/10/14
4. National Institute for Health and Clinical Excellence (2008). Stroke (CG68) Diagnosis
and initial management of acute stroke and transient ischaemic attack (TIA). Assessed online: http://publications.nice.org.uk/stroke-cg68 Accessed 10/10/14
5. Nip WFR, et al. Dietary intake, nutritional status and rehabilitation outcomes of stroke patients in hospital. Journal of Human Nutrition and Dietetics 2010; 24: 460 – 469
6. Rahmani MJR et al (2010). Acute Stroke Pathway, Integrated Care Pathway Document. East Sussex Healthcare Trust.
7. Neild P, Stroud M (2010). Ethics and artifical nutrition towards the end of life. Clinical Medicine 2010; 10: 607–10
8. Scottish Intercollegiate Guidelines Network (2010). Management of patients with stroke: Identification and management of patients with dysphagia. Accessed online http://www.sign.ac.uk/guidelines/fulltext/119/ Accessed 10/10/14
9. Mental Capacity Act ‘2005 Code of Practice.’ Accessed online http://www.justice.gov.uk/protecting-the-vulnerable/mental-capacity-act Accessed 10/10/14
10. Nicholson T, et al (2008). Assessing mental capacity: the Mental Capacity Act. British Medical Journal 2008; 336: 322–25