Dr. Edel Duffy

Senior Dietitian

Nutricia Medical

The Role of Nutrition

at End of Life

“It is not death, but the dying that

scares us.”

Henry Fielding

Some of the most important things

people want at the end of life

• To be surrounded by people I love

• To be free from pain

• To be conscious and able to communicate

• To be at home

• To have medical and nursing support readily available

• To have spiritual support available

• To be in a private space

The Irish Hospice Foundation

The Irish Hospice Foundation

The Surprise Question

Would you be surprised if this patient died in the next 12 months?’

This is an intuitive question that is helpful for clinicians to recognise

when a patient with an advancing life-limiting illness may be near

the end of his/her life.

Earlier recognition of people nearing the end of their life leads to

earlier planning and better care.

• Patients are ‘approaching the end of life’ when they are

likely to die within the next 12 months.

• This includes patients whose death is imminent

(expected within a few hours or days) and those with:

(a) advanced, progressive, incurable conditions

(b) general frailty and co-existing conditions

that mean they are expected to die within 12

months

(c) existing conditions if they are at risk of

dying from a sudden acute crisis in their condition

(d) life-threatening acute conditions caused by

sudden catastrophic events

General Medical Council - End of Life

Care Guidance

Diagnosing that someone is dying is a process with

significant implications and one which is best carried

out by a team of professionals.

Patterns of dying – dying trajectories

• Thinking about the different common patterns of

dying allows us to anticipate particular needs for

patients and families.

The Irish Hospice Foundation

Diagnosing Dying

The Irish Hospice Foundation

The Irish Hospice Foundation

The Irish Hospice Foundation

Goals of Care

• Appropriate

• Attainable

MUST Screening Tool

MUST Score >2

Standard 16: End of Life Care:

Each resident continues to receive care

at the end of his/her life which meets

his/her physical, emotional, social and

spiritual needs and respects his/her

dignity and autonomy.

HIQA

• The resident’s palliative care needs are assessed,

documented and regularly reviewed.

• The information is explained to, and options discussed

at regular intervals with the resident, his/her family or

representative, in accordance with the resident’s wishes.

• Where the resident can no longer make decisions on

such matters, due to an absence of capacity, his/her

representative is consulted.

Section 16: Criteria

No specific mention of nutrition at end of life

Purpose of Nutrition

• Maintain/restore weight

• Maintain/regain health

• Maintain/restore strength

• Reduce infection

• Reduce pressure sores

• Correct specific nutritional deficiencies

• Increase muscle mass and function

• Disease management e.g. Diabetes

Purpose of Food

• Enjoyment

• Social

• Rituals, celebrations

• Expression of care

• Expression of friendliness

• Hospitality

• Nurture

• ANH requires invasive procedures

– patient’s nose and throat (nasogastric tube)

– veins (IV line)

– stomach (PEG / gastrostomy)

– intestine (jejunostomy)

– major vessel into the heart (hyper-alimentation)

• ANH is ethically controversial

- Is ANH a form of universal human care and so

always morally obligatory?

- Can be considered an optional treatment

based on a benefit-burden judgement?

Artificial Nutrition and Hydration (ANH)

• Patient choice

• Informed consent

• Problem when patient not autonomous

• Role of the clinical expert- information, advice

Who Decides?

Percutaneous Endoscopic

Gastrostomy does not prolong

survival in patients with dementia

Murphy and Lipman

Arch Int Med 2003, 163. 1351-3

Murphy and Lipman 2003

• 41 patients suitable for PEG

• 23 had PEG – median survival 59 days

• 18 no PEG – median survival 60 days

PEG Feeding

No evidence of reduction in pressure sores,

infection, improved function, comfort, survival.

Finucane, Christmas, Travis

JAMA, 1999 282(14) 1365-70

Limits of Nutritional Support in

Terminally Ill Patients

• Primary objectives of nutritional support during the last

weeks of life of an elderly person are pleasure and

comfort.

• Implementing nutritional support by the

parenteral or enteral routes is not

recommended, especially as intubation may

be a source of discomfort.

• This decision must be explained to the nursing team

and the elderly person’s close relatives.

• Good oral health through routine mouth care is

important to maintain the pleasure of oral feeding.

• All symptoms that may reduce the desire to eat or the

pleasure of eating such as pain, nausea, glossitis and

dryness of the mouth should be relieved.

Cochrane Systematic Review

Enteral tube feeding in older people with advanced dementia

Enteral tube feeding for people with advanced dementia who have difficulty swallowing and poor nutritional intake is common. Potential benefits or harms of this practice are unclear and the authors aimed to evaluate the outcomes of this intervention.

METHODS:

A full literature review was undertaken in April 2008. Randomized controlled trials (RCTs), controlled clinical trials, controlled before and after studies, interrupted time series studies and controlled observational studies that evaluated the effectiveness of enteral feeding via a nasogastric tube or via a tube passed by percutaneous endoscopic gastrostomy were selected. The study population comprised adults aged 50 and over with a diagnosis of advanced primary degenerative dementia who had poor nutritional intake and/or developed problems with eating and swallowing. The primary outcomes were survival and quality of life (QOL).

RESULTS:

No RCTs were identified. Seven observational controlled studies were found; six assessed mortality. There was no evidence of increased survival in people with dementia receiving enteral tube feeding. The other study assessed nutritional outcomes. None of the studies examined the effect on QOL and there was no evidence of benefit in terms of nutritional status or the prevalence of pressure ulcers.

Int J Palliat Nurs. 2009 Aug;15(8):396-404.

CONCLUSIONS:

There is insufficient evidence to suggest that enteral tube feeding

is beneficial in people with advanced dementia.

Data is lacking on the adverse effects of this intervention.

Nutrition at the End of Life

• Clinical - benefit vs. burden

- patient goals vs. clinician goals

• Ethical - do the right thing

- influenced by culture, religion,

society, laws

- clear method of making decision

- involve relevant people

- clear documentation

• Purpose is to facilitate hospice-type care for

terminally ill patients in acute hospitals.

• LCP was developed by the Royal Liverpool

University Hospital and the Marie Curie Hospice

in the late 1990s

• Initiated for the palliative care of terminally ill

cancer patients and was later extended for other

terminal patients.

Liverpool Care Pathway

• The first stage of the pathway involves making a

decision on whether the patient is actually dying

or not.

• Palliative care options are provided for the next

course of action, which may involve the

discontinuation of non-essential treatments and

medications if the patient is not responding, or

responding negatively to them.

Liverpool Care Pathway

• LCP is not part of the National Palliative Care Clinical

Programme.

– no calls for the pathway to be adopted in Ireland

• The IAPC supports an individualised, inclusive and

collaborative approach to all decision making at the

end of life

– “All decisions to continue or to discontinue each

medical treatment and intervention are based on a

detailed and dynamic assessment of the relative

benefits and burdens of each intervention in each

specific instance”.

Liverpool Care Pathway - Ireland

• Did not ultimately prove suitable for patients in the

Hospital

• “It was too little, too late, the Liverpool Care Pathway

only comes into effect for the last stages of a patient's

life. We found this was too narrow and didn't address

the breadth of cases we saw.”

Dr. Eoin Tiernan

• New tool- VIP Compass piloted in the Blackrock Clinic

– Will replace Liver Pool Care Pathway in St.

Vincent’s in coming months.

Liverpool Care Pathway – Trial in St.

Vincent’s Hospital 2005

NICE Dementia Guidelines

NICE

• Health and social care staff should encourage people with

dementia to eat and drink by mouth for as long as possible.

• Nutritional support, including artificial (tube) feeding, should be

considered if dysphagia is thought to be a transient

phenomenon, but artificial feeding should not generally be

used in people with severe dementia for whom dysphagia or

disinclination to eat is a manifestation of disease severity.

• Ethical and legal principles should be applied when making

decisions about withholding or withdrawing nutritional support.

NICE

Irish Hospice Foundation

• ‘Nutrition and hydration are basic needs of human

beings’.

• All patients are entitled to be provided with

nutrition and hydration in a way that meets their

needs’ (par.19.1).

Irish Medical Council Code of Ethics (2009)

Previous Code

‘all reasonable and practical efforts should be made

to maintain’ nutrition and hydration.

Current Code

‘if a patient is unable to take sufficient nutrition and

hydration orally, you should assess what alternative

forms are possible and appropriate in the

circumstances.’

Irish Medical Council Code of Ethics (2009)

Medical professionals are reminded that they should ‘bear in

mind the burden or risks to the patient, the patient’s wishes if

known, and the overall benefit to be achieved.’

Medical Council of Ireland 2010

“No obligation to start or continue

futile treatment, including artificial

nutrition and hydration”

• The current evidence about the benefits,

burdens and risks of artificial nutrition as

patients approach the end of life is not clear-cut

• Nutrition and hydration provided by tube or drip

are regarded in law as medical treatment, and

should be treated in the same way as other

medical interventions.

• Nonetheless, some people see nutrition and

hydration, whether taken orally or by tube or drip,

as part of basic nurture for the patient that should

almost always be provided.

General Medical Council - End of life

care guidance

• When someone with dementia is close to dying

the main issue of concern should be quality of life

and quality of death, not length of life.

• Losing the ability to swallow can be part of the

dying process in some cases and artificial

nutrition and hydration in these cases may not be

appropriate.

Alzheimers Society UK

• The HSE is currently developing an advance care

planning document and rapid discharge

guidelines.

• Irish Hospice Foundation develop an Ethical

Framework for End-of-life Care

• Irish Hospice Foundation and the Palliative Care

Clinical Programme is piloting a national audit and

review system to enable healthcare providers to

assess the quality of end of life care provided

regardless of setting

Future Developments

• NICE guideline Nutrition support in adults: oral

nutrition support, enteral tube feeding and

parenteral nutrition (Feb 2006)

(www.nice.org.uk)

• The British Association for Parenteral and Enteral

Nutrition provides advice on meeting the needs of

patients at home and in different healthcare

settings (www.bapen.org.uk)

• Oral feeding difficulties and dilemmas: A guide to

practical care, particularly towards the end of life

(Jan 2010) Royal College of Physicians, co-

published with the British Society of

Gastroenterology (bookshop.rcplondon.ac.uk)

Resources

• An explanation of the different techniques for providing

nutrition and hydration by tube or drip can be found in the

NICE guideline Nutrition support in adults: oral nutrition

support, enteral tube feeding and parenteral nutrition. (Feb

2006).

• Artificial Nutrition and Hydration: guidance in end of life care

for adults. National Council for Palliative Care (2007).

• For a detailed discussion of evidence on the benefits,

burdens and risks when nutrition or hydration is provided by

drip or tube, refer to Improving Nutritional Care. A joint

action plan from the Department of Health and Nutrition

Summit stakeholders (October 2007) (www.dh.gov.uk).

Resources

Patient

Clinicians Family

Ethics Legal

The role of nutrition at end of life

• Primary objectives - pleasure and comfort

• Parenteral or enteral routes is not recommended,

especially as intubation may be a source of discomfort

• Decision must be explained to the nursing team and

relatives

• Good oral health - maintain the pleasure of oral feeding

• Symptoms that may reduce the desire to eat or the

pleasure of eating such as pain, nausea, glossitis and

dryness of the mouth should be relieved

Thank You