Presented by: Dr Jo Preston, Dr Iain Wilkinson
Faculty: Jackie Lelkes, Claire Ferneyhough, Vicky Payne,
Broadcast Date: 18th June 2019
Iain: Life begins at 60 — the rise of the ‘Young-Old’ society https://www.ft.com/content/de2ce58c-6b40-11e9-a9a5-351eeaef6d84 (subscription needed)
- To be able to define CANH
- To recall the evidence base and lack thereof around artificial feeding.
- To recall the pros and cons of NG feeding
- To understand the ethical and legal frameworks within which decisions should be made.
- To recognise when the provision or withdrawal of CANH may pose an ethical or legal dilemma.
- To positively engage families in conversation about the potential benefits, and harms, of CANH.
- To consider when CANH may not be in a person’s best interest
CANH is a medical treatment and refers to all forms of tube feeding, examples include nasogastric tube, percutaneous endoscopic gastrostomy (PEG) and parenteral nutrition.
We will discuss
- The common scenarios encountered around CANH in older adults, pros, cons and common myths
- The evidence base, or lack thereof, around this from a research perspective
- The legal and ethical framework for decision making, including some recent court cases and a summary of the BMA/RCP guidance.
During this episode we will not be discussing:
- TPN (Total Parenteral Nutrition) which is nutrition via a large vein, usually used for non-functioning gut.
- Hydration specifically: principles behind feeding decisions are similar but there are often more complexities with hydration and this really needs it’s own discussion [episode 1.8]
- Risk feeding in any great detail: again, worthy of its own episode
We will be discussing primarily decisions around NG use, because much of the approach can be applied to decision making around PEG use as well. The major difference being, in simple terms, short term and long term use. We will discuss PEGs later in the episode but for the beginning, when we say NG, you can think about PEG at the same time and consider what the differences might be.
Scenarios in which artificial nutrition is often considered
- Acute medical decompensation
- NG: Often used in short term while fact finding e.g. PD
- PEG: decision would ideally be made in advance
Deterioration in oral intake with reversible cause. Could include too drowsy to eat and drink.
- Nutritional benefits
- to maintain nutritional intake
- we’ll explore some evidence around this later
- Prevention of loss of nutritional status
- Reduction in risk of oropharyngeal aspiration
- Facilitates aspiration free period for swallow rehabilitation
- Delivery of medication: nod to PD
- Bridging acute decompensation to support recovery of function
- Culturally reassuring
- Risks associated with NG insertion
- eg. pneumothorax, lung collapse
- Practicalities e.g. multiple x-rays
- Aspiration of feed
- Refeeding (but this may happen with oral feeding too)
- Implications for quality of life – tube feeding and absence of oral intake
- Invasive / may worsen delirium
- May require restraint to deliver safely (i.e. keep in place) e.g. mittens
- Can distract from decisions around longer term feeding: may provide false hope
- May have implications for residence
Myth 1: Feeding via NG (or PEG) removes risk of aspiration
- Severe dysphagia: secretions still aspirated
- Aspiration of feed through reflux / regurgitation
Myth 2: People can’t eat if they have an NG or PEG
Myth 3: Enteral feeding causes diarrhoea
Myth 4: NG = PEG
Myth 5: That will improve appetite
Myth 6: That if you NG feed someone, that it will restore their previous baseline (functional, swallow, nutritional etc).
Evidence base and Gaps
Much of the evidence includes patients with various stages of cognitive impairment and using predominantly PEG to evaluate longer term benefits, because of the potential confounding with studying NG use in the acute setting – there are some though. So, we need to extrapolate that evidence to our decision making for NGs as well.
- Seldom effective in improving nutrition, maintaining skin integrity, preventing aspiration pneumonia, improving functional status, extending life (RCP 2010)
Teno et al 2012: Pressure ulcers and healing – Grade 2 PEG and non-PEG. Matched Cohort Study
- Those with PEGs were more likely to develop pressure ulcers, less likely to have healed at 30 days.
- Mortality: no difference at 30 days, higher in PEG group at one year
- Acute placement of PEG could contribute to mortality – need to wait 1-2 months
|Mortality Rate post PEG insertion||Advanced Dementia %||Non-Dementia %|
Teno 2012: PEG vs no PEG
- 1,957 had a feeding tube inserted within 1 year of developing eating problems.
- No difference was found in survival between the two groups – adjusted hazard ratio (AHR) = 1.03, 95% confidence interval (CI) = 0.94–1.13
Ticinesi et al 2016: Prospective Observational Cohort
- Adjusted for age, dementia type and stage and discharge setting
- Longer survival in those without PEG P<0.0001
- ‘Quality of life rather than length of life should be prioritised’ (Alzheimer’s society)
Interplay with delirium
Dementia: Cochrane Review 2009: Artificial Feeding in Advanced Dementia
There is insufficient evidence to suggest that enteral tube feeding is beneficial in patients with advanced dementia. Data are lacking on the adverse effects of this intervention.
- Only 7 trials
- 4 of which looked at NGT as their study group
- Of the 3 trials looking at PEG feeding all have sampling/control issues.
- Only looking at advanced dementia
Less severe dementia
- Recommend tube feeding for a limited period of time to overcome a crisis situation in mild-moderate dementia with markedly insufficient oral intake if low nutritional intake is predominantly caused by a potentially reversible condition.
- NICE/SCIE Dementia Clinical Guidelines (2007) state CANH ‘should not commence if disinclination to eat or inability to swallow is considered part of the disease, and will not change in the future’
- CANH should always be in line with meeting therapeutic goals i.e. prolonging life without prolonging suffering or discomfort at the end of life
ESPEN (European Society for Parenteral Nutrition) (2015): guidelines on nutrition in Dementia
Durations of feeding and bounce back (compare with ITU)
Ethics and Legalities
In line with the Human Rights Act (1998) doctors must be aware of how human rights will impact on their decision-making. The courts have confirmed that decisions to withdraw CANH are compliant with human rights law if they are made appropriately.
MCA / BIM
The MCA does not identify a particular individual as having legal responsibility for decision-making, instead taking a collaborative approach and following the principles of the MCA, which requires all attempts to be made to involve the patient, to consult with anyone named by the person to be consulted with, the family and anyone who expresses and interest in the person welfare i.e. professionals involved. In practice, this will fall to the individual with overall clinical responsibility for the patient’s care, as part of their duty of care to ensure that the care being provided is in the person’s best interests. For example in hospital this is likely to be the consultant, in the community the GP.
Lady Hale, Aintree v James “In considering the best interests of this particular patient at this particular time, decision-makers must look at his welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question, what it involves and its prospects of success; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude to the treatment is or would be likely to be; and they must consult others who are looking after him or interested in his welfare, in particular for their view of what his attitude would be.”
It is important that a ‘balance sheet’ approach is taken identify benefits and risks, a view supported by the BMA and the supreme court who in Aintree v James. identified that even for patients in a permanent VS, the benefits side of the balance sheet needs to be considered. For example, they may have expressed a strong view with respects to the sanctity of life and the intrinsic value in being alive. This should be taken into consideration in making a best interests decision on whether to provide treatment aimed at prolonging his or her life. In all cases the decision should be about what is in the best interests of that individual, and not a blanket approach to particular categories or groups of patients.
The court of protection:
Where the person lacks capacity and there is a dispute about what is in the person’s best interests in relation to the withdrawal of fluids or nutrition then the ultimate decision maker is the court of protection
Legal cases: 2018 NG feeding
The Supreme Court (in Aintree v James) reiterated that treatment (including CANH) should only be provided where it is in the patient’s best interests and that the correct question should be whether it is appropriate to provide or continue to provide treatment, rather than whether it is appropriate to withdraw it.
In July 2018 the supreme court confirmed that there is no requirement, for patients in a permanent vegetative state (VS) or minimally conscious state (MCS), to seek approval from the Court of Protection in any cases where there is agreement as to what is in the best interests of the patient, and where both the Mental Capacity Act 2005 and good practice guidance have been followed.
And this can be extrapolated into the more routine cases that we see in neurodegenerative conditions.
Lady Black, An NHS Trust v Y
The case identified a number of significant points on how decisions are to be made, which need to be reflected in decision-making:
– reinforced the message from Aintree v James that the correct question to ask is appropriate to provide or continue to provide treatment.
– an increasing emphasis on patient-centred decisions. The courts emphasising ‘the very strong presumption in favour of the preservation of life’, but that this can be mitigated against by the principle of self-determination – clear evidence that the individual would not want CANH provided under the circumstances
– an unequivocal statement that a patient’s best interests incorporate not just their medical interests, but their welfare in the widest sense – medical, social, and psychological.
Legal Case April 2018 – Long term NG use in End Stage Dementia PW vs Chelsea & Westminster NHS Trust
RW had been cared for by his sons at home until September 2017, when he was admitted to a hospital and was acutely ill. A nasogastric (NG) tube to provide clinically assisted nutrition and hydration (CANH) was inserted as part of his treatment. By late November he [still had the NG] but was ready for discharge as he was clinically stable and had no active infection, but disagreement between the trust and his sons prevented it. It was agreed that RW could be discharged into his sons’ care, had he not needed a NG tube. But the Clinical Commissioning Group (CCG) said it could not provide care in respect of CANH or the NG tube. The issue was solely whether, as the trust contended, he should be discharged home for palliative care and oral comfort feeding only, having had the NG tube removed before discharge, or with the tube in place, as the sons contended.
In April 2018 a Court of Protection judge, having heard evidence from RW’s treating clinician, his family, the CCG, the Official Solicitor and an independent medical expert, decided that it was in RW’s best interests to have the NG tube removed and return home for palliative care only. She took into account the fact that if RW were to be discharged with an NG tube in place, as the sons wished, it would become regularly dislodged requiring his regular return to hospital for its replacement, which would be “highly burdensome” to him. Being discharged home with an NG tube was therefore not an “acceptable or appropriate treatment course for RW”.
The applicant (one of the sons) submitted, in relation to the best interests decision, that the judge had erred in her appraisal of the evidence and the weight she had given to some of the factors, particularly RW’s wishes. These were, contrary to the judge’s findings, ascertainable; they pointed to the fact that he was a “fighter”, to the value he ascribed to life and to his desire to “hold fast to it” no matter how “poor” or “vestigial” in nature it was.
The independent medical expert told the court that offering potentially life lengthening treatment in the form of CANH is no different ethically in this scenario than offering other forms of treatment.
The Court of Appeal refused to interfere with the Court of Protection’s decision that it was not in the best interests of a 77-year-old man with end stage dementia to be discharged home with a nasogastric tube inserted for feeding purposes. The COP judge said that she was not bound to continue life. The sanctity of life is not absolute.” Palliative care “would make [the patient] as comfortable as possible and ensure his dignity and comfort. He will pass away with palliation in a dignified way.”
Ethics of life prolonging vs life enhancing. Do no harm: quantify and clarify the harms to the individual.
There is no statutory right for health professionals to claim a conscientious objection to participating in the withdrawal of CANH. Nevertheless, it is in nobody’s interests for health professionals to be forced to participate in making or implementing such decisions (or to simply avoid making them) and it would be appropriate to involve a doctor who is willing to make a best interests decision for the patient. If there is a conflict of interests then the healthcare professional should declare this early on.
Withdrawal of feeding
Need to establish if there is a valid and applicable ADRT in place that cites to CANH and if yes it must be respected. When a person lacks capacity it must be assumed they had capacity when they made the ADRT unless you have grounds to question this. The fact that the patient who now lacks capacity appears content, or even happy, with their quality of life does not mean that their ADRT is invalid.
If there is a valid and registered LPA for health and welfare then they are the lawful decision maker and their view should be respected.However it is important to remember they do not have the power to insist on treatment that is not clinically indicated.
Does not cover decisions about CANH in situations when
- Death is expected in the following hours or days
- Starting or continuing CANH is not clinically indicated
- A decision to start, or to stop providing, CANH is part of a broader decision about life-sustaining treatment
- [There is a valid ADRT in place]
In these circumstances: individual clinical decision making.
Part 1: General guidance
- Capacity assessment – general principles of MCA and Best Interests
- Clinical assessment of benefits of CANH in relation to level of recovery that can be expected
Part 2: Next 3 sections cover common scenarios
- Neurodegenerative conditions including Dementia
- Multiple comorbidities or frailty who suffer brain injury e.g. Stroke
- Previously healthy in Vegetative State or Minimally Conscious States
Neurodegenerative Conditions – includes PD, Huntington’s, Dementia – described as
“Conditions which are likely, eventually, to result in the patient being unable to take sufficient nutrition orally. “
It states that, particularly with respect to Dementia
“CANH is not usually indicated where inadequate nutrition is related to the advancing disease itself… May be indicated for a relatively short period for a potentially reversible co-morbidity such as acute infection”
“In the limited circumstances in which CANH is clinically indicated and where a decision is needed about whether to continue CANH that has already started.”
Advocates use of second opinions: “When it is proposed to stop or not start CANH and the person is not within hours or days of death”
Use of second opinions is advocated strongly in the guidance, suggesting a proportionate approach taking into account
- The prognosis
- Potential for future recovery or deterioration
- Expected survival time
- The level of certainty with which this can be predicted.
- The impact of making the wrong decision resulting in either CANH
- Being withdrawn too soon – thus depriving the opportunity to live a life they would value or
- Of it being continued for too long – forcing the individual to continue a life that they would not have wanted.
For those with progressive neurological condition including dementia – Does not need to be from a separate department but may be advisable if prognosis is several years
For those with multiple comorbidities or frailty who suffer brain injury – External to the treating department
For those previously healthy in Vegetative State or Minimally Conscious States – Expert specialising in Prolonged Disorders of Consciousness (PDOC), external to organisation if possible and previously uninvolved in care.
A case to discuss
Jim is a 74 year old gentleman with moderate dementia – he lives with his partner and has no formal care. He attends a day centre twice a week. He has been admitted to the acute medical unit with a right basal pneumonia. He is having periods of both hyperactive and hypoactive delirium. His nurse reports that he is too unsteady to transfer to the chair with assistance of 2, he needs prompting and assistance to eat or drink but seems to have very little appetite and after having a cup of tea is coughing and his voice is wet.
Functional baseline: walks with a stick most of the time, independent transfers, needs prompting but not assistance to wash and dress. Partner cooks meals
Swallowing baseline: Avoids very solid foods like steak but otherwise no issues. Never seen SLT before.
Nutritional baseline: Eats regularly but little
- NHS Knowledge Skills Framework
- HWB7 – Interventions and Treatments – level 2
- HWB8 – Biomedical investigation and intervention – level 2
- Foundation curriculum
- Recognises, assesses and manages patients with long term conditions – Nutrition
- Core Medical Training
- Decision making and clinical reasoning
- Principles of medical ethics and confidentiality
- Weight Loss
- Geriatric Medicine Training Curriculum
- 17 – Principles of medical ethics and confidentiality
- 37 – Nutrition