Hydration and Nutrition: Clinical and ethical issues · Hydration: Cochrane review 2014...

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Visit: www.pilgrimshospices.org pilgrimshospices @PilgrimsHospice Hydration and Nutrition: Clinical and ethical issues Andrew Thorns Consultant in Palliative Medicine East Kent Hospitals University Trust Medical Director Pilgrims Hospice in East Kent [email protected] @thornsandrew

Transcript of Hydration and Nutrition: Clinical and ethical issues · Hydration: Cochrane review 2014...

Page 1: Hydration and Nutrition: Clinical and ethical issues · Hydration: Cochrane review 2014 •Hydration at the end of life may •Improve sedation and myoclonus •Worsen fluid retention

Visit: www.pilgrimshospices.org pilgrimshospices @PilgrimsHospice

Hydration and Nutrition:

Clinical and ethical issuesAndrew Thorns

Consultant in Palliative Medicine

East Kent Hospitals University Trust

Medical Director Pilgrims Hospice in East Kent

[email protected]

@thornsandrew

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What the Papers Say“The end when it comes is distressing for all who witness it. When a patient is starved of food and water there is no question of lapsing peacefully into that good night. Dying becomes a misery of convulsions, bleeding and – if there is consciousness – fear and pain.”

Daily Mail Editorial. Dec 8th 2004

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Why are ethical problems around hydration and nutrition so challenging?

• Media attention

• Poor evidence base for decision-making

• Difficulties of predicting prognosis

• Team decision making and relations with colleagues

• Understanding moral theory and the law

• Challenging or finely balanced cases require a lot of resources

• Serious consequences if handled badly

• Having effective communication skills

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• Ethics is concerned with how we ought to react to each other. What is good and what is bad, what is right and what is wrong when acting toward another individual.

• Within the study of medical ethics, these questions are often equated with dramatic decisions about life and death, or the consequences of the latest advances within medical technology and research.

• Ethics, however, is not only concerned with the spectacular or with questions of life and death. In general wards of hospitals and nursing homes, particularly in the daily care of the elderly, lies a type of everyday ethics with countless small down to earth decisions concerning the various aspects of care. These actions are not subject to analysis every time they are performed. Rather, they reflect consciously or unconsciously the fundamental attitudes which carers express in their everyday actions.

• In seeking assistance in concrete situations, it is therefore imperative that we are aware of the values upon which we base our reflection.

• (Mattiason and Hemberg 1997 p1; The Cambridge Medical Ethics Workbook. Parker M and Dickenson D. Cambridge University Press 2001)

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Objectives

• To be able to describe the ethical challenges of hydration and

nutrition as patients and families approach the end of life

• To identify the relevant research and guidance in helping make the

best decisions

• To evaluate how we need to adapt our practice as a result of this

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Definitions and key resources

• Clinically assisted nutrition and

hydration (CANH)

Clinically-assisted nutrition and

hydration (CANH) and adults who

lack the capacity to consent

Guidance for decision-making in

England and Wales

BMA and Royal College of

Physicians

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How would you respond to this situation?

Mr A has advanced incurable cancer. He is in his last few weeks of life

and there are no more oncological treatment options. He has no

appetite, has lost a great deal of muscle bulk and he and his family ask

about tube feeding to help him feel better and live longer

a) Tube feeding should be trialled for a short period to see if it helps

b) Tube feeding will not help his life expectancy or quality of life at this

stage of his life

c) Tube feeding is likely to help and therefore should be implemented

as per their request

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How would you respond to this situation?

Mrs B has advanced dementia so she lacks capacity for almost all decisions. On most days she does not get out of bed or maybe transferred to the chair for short while. Her swallow is unreliable and she has episodes of aspiration pneumonia. The question is being raised whether to arrange for a PEG tube

a) As there is no advance decision by the patient it is up to the next of kin to decide

b) A PEG tube insertion is the right course of action to help prolong the life of Mrs B

c) Once someone with dementia can’t swallow they are close enough to

the end of life that we should not supplement their fluids in a clinically assisted means

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How would you respond to this situation?

Mr C is dying in the next hours or days. He is comfortable with no signs of distress or respiratory secretions. He appears neither over or underhydrated. He is no longer able to take anything by mouth. His family are asking about setting up some fluids for his comfort and to stop him dehydrating. Having listened to the family’s concerns your response would be

a) To agree and start some fluids with a plan to check they do not cause any complications

b) To explain the risks in terms of increased secretions, discomfort and complications from the cannula and that fluids at the end of life are not needed by the body. But agreeing to monitor the situation and offer exemplary mouth care

c) To explain that in your organisation the policy is not to give fluids at the end of life

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Would you agree with this statement?

• As people approach the end of their lives the enjoyment they get

from their food is more important than the calorific content or

nutritional quality

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10 things1. We do not need to prolong life at all costs

2. People cannot insist on CANH but if there is doubt we should act to prolong life

3. The evidence is not clear about fluids at the end of life – but we all agree we need more research

4. When people are approaching the end of their lives there are many reversible causes of poor appetite and weight loss which should be carefully looked at

5. Once people can’t swallow with advanced dementia then CANH is not likely to help

6. People with advanced cancer aren’t starving: distinguishing between starvation and cachexia

7. To focus on enjoyment from food rather than nutritional value is often a better approach

8. Religious and cultural aspects should be considered and each decision made on an individual basis

9. An approach to withholding and withdrawing CANH is helpful remembering a 2nd opinion is required if not in last hours or days of life

10. Communication is most important

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10 things1. We do not need to prolong life at all costs

2. People cannot insist on CANH but if there is doubt we should act to prolong life

3. The evidence is not clear about fluids at the end of life – but we all agree we need more research

4. When people are approaching the end of their lives there are many reversible causes of poor appetite and weight loss which should be carefully looked at

5. Once people can’t swallow with advanced dementia then CANH is not likely to help

6. People with advanced cancer aren’t starving: distinguishing between starvation and cachexia

7. To focus on enjoyment from food rather than nutritional value is often a better approach

8. Religious and cultural aspects should be considered and each decision made on an individual basis

9. An approach to withholding and withdrawing CANH is helpful remembering a 2nd opinion is required if not in last hours or days of life

10. Communication is most important

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We do not need to prolong life at all costs:GMC guidance• “…decisions concerning potentially life-prolonging treatment must not be

motivated by a desire to bring about the patient’s death, and must start from a

presumption in favour of prolonging life.”

• “This presumption will normally require you to take all reasonable steps to

prolong a patient’s life.”

• “However, there is no absolute obligation to prolong life irrespective of the

consequences for the patient, and irrespective of the patient’s views, if they are

known or can be found out.”

Treatment and care towards the end of life: good practice in decision making. General Medical Council 2010

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10 things1. We do not need to prolong life at all costs

2. People cannot insist on CANH but if there is doubt we should act to prolong life

3. The evidence is not clear about fluids at the end of life – but we all agree we need more research

4. When people are approaching the end of their lives there are many reversible causes of poor appetite and weight loss which should be carefully looked at

5. Once people can’t swallow with advanced dementia then CANH is not likely to help

6. People with advanced cancer aren’t starving: distinguishing between starvation and cachexia

7. To focus on enjoyment from food rather than nutritional value is often a better approach

8. Religious and cultural aspects should be considered and each decision made on an individual basis

9. An approach to withholding and withdrawing CANH is helpful remembering a 2nd opinion is required if not in last hours or days of life

10. Communication is most important

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People cannot insist on CANH but if there is doubt we should act to prolong life• An advance request to receive CANH should carry significant weight

as evidence of a patient’s past wishes and preferences, but cannot be

determinative of the doctor’s decision on best interests

• Burke v General Medical Council

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10 things1. We do not need to prolong life at all costs

2. People cannot insist on CANH but if there is doubt we should act to prolong life

3. The evidence is not clear about fluids at the end of life – but we all agree we need more research

4. When people are approaching the end of their lives there are many reversible causes of poor appetite and weight loss which should be carefully looked at

5. Once people can’t swallow with advanced dementia then CANH is not likely to help

6. People with advanced cancer aren’t starving: distinguishing between starvation and cachexia

7. To focus on enjoyment from food rather than nutritional value is often a better approach

8. Religious and cultural aspects should be considered and each decision made on an individual basis

9. An approach to withholding and withdrawing CANH is helpful remembering a 2nd opinion is required if not in last hours or days of life

10. Communication is most important

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Davies et al 2015

A cluster

randomised

feasibility trial of

clinically assisted

hydration in cancer

patients in the last

days of life

The evidence is not clear about fluids at the end of life – but we all agree we need more research

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Hydration: Cochrane review 2014

• Hydration at the end of life may

• Improve sedation and myoclonus

• Worsen fluid retention symptoms (pleural effusion, peripheral oedema and

ascites)

• Or may have no effect at all including on survival

The authors concluded:

• The studies published do not show a significant benefit in the use of medically assisted hydration in palliative care patients; however, there are insufficient good-quality studies to inform definitive recommendations for practice with regard to the use of medically assisted hydration in palliative care patients”

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However more recent studies

• CHELsea study : A cluster randomised feasibility trial of clinically assisted hydration in cancer patients in the last days of life

• Fulfilled recruitment though more in the non hydrated group

• Delayed agitation

• Fluids stopped because of death rattle but incidence of death rattle no different and probably delayed

• Survival 2 days longer with fluids 2.9 vs 4.26

• However study not designed for this and need to be cautious in interpreting this as a feasibility

• Davies et al 2018

• All agree more research is needed and look forward to the next step

• Amongst Pilgrims Hospice staff 80% of frontline nursing teams recognised need for more research • Cox at al 2019

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Staff and patient views

• Variation in views between staff and they may be at odds with

patients (Raijmakers et al 2011)

For example, thirst:

• ESPEN ethical guidance suggest thirst should not be an issue

• However….

• What do we think?

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10 things1. We do not need to prolong life at all costs

2. People cannot insist on CANH but if there is doubt we should act to prolong life

3. The evidence is not clear about fluids at the end of life – but we all agree we need more research

4. When people are approaching the end of their lives there are many reversible causes of poor appetite and weight loss which should be carefully looked at

5. Once people can’t swallow with advanced dementia then CANH is not likely to help

6. People with advanced cancer aren’t starving: distinguishing between starvation and cachexia

7. To focus on enjoyment from food rather than nutritional value is often a better approach

8. Religious and cultural aspects should be considered and each decision made on an individual basis

9. An approach to withholding and withdrawing CANH is helpful remembering a 2nd opinion is required if not in last hours or days of life

10. Communication is most important

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When people are approaching the end of their lives there are many reversible causes of poor appetite and weight loss which should be carefully looked at

• Pain

• Dry or sore mouth

• Difficulty swallowing

• Nausea or vomiting

• Constipation

• Fatigue

• Emotional worries

• Can you think of more I have missed?

• Environment

• Food and drink

preparation and

presentation

• Radiotherapy

• Chemotherapy

• Other medication

eg metformin

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10 things1. We do not need to prolong life at all costs

2. People cannot insist on CANH but if there is doubt we should act to prolong life

3. The evidence is not clear about fluids at the end of life – but we all agree we need more research

4. When people are approaching the end of their lives there are many reversible causes of poor appetite and weight loss which should be carefully looked at

5. Once people can’t swallow with advanced dementia then CANH is not likely to help

6. People with advanced cancer aren’t starving: distinguishing between starvation and cachexia

7. To focus on enjoyment from food rather than nutritional value is often a better approach

8. Religious and cultural aspects should be considered and each decision made on an individual basis

9. An approach to withholding and withdrawing CANH is helpful remembering a 2nd opinion is required if not in last hours or days of life

10. Communication is most important

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Once people can’t swallow with advanced dementia then CANH is not likely to help• No evidence that enteral tube nutrition is effective in terms of

• prolonging survival,

• improving quality of life

• leading to improved nutritional status

• decreasing the risk of pressure sores

• may increase the risk of developing pneumonia due to aspiration and increase

mortality

• Donnelly 2013 Druml 2016

• ESPEN suggest use of phrase “comfort feeding” rather than focussing

on stopping or withholding

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10 things1. We do not need to prolong life at all costs

2. People cannot insist on CANH but if there is doubt we should act to prolong life

3. The evidence is not clear about fluids at the end of life – but we all agree we need more research

4. When people are approaching the end of their lives there are many reversible causes of poor appetite and weight loss which should be carefully looked at

5. Once people can’t swallow with advanced dementia then CANH is not likely to help

6. People with advanced cancer aren’t starving: distinguishing between starvation and cachexia

7. To focus on enjoyment from food rather than nutritional value is often a better approach

8. Religious and cultural aspects should be considered and each decision made on an individual basis

9. An approach to withholding and withdrawing CANH is helpful remembering a 2nd opinion is required if not in last hours or days of life

10. Communication is most important

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People with advanced cancer aren’t starving: distinguishing between starvation and cachexia• Anorexia

• The loss of appetite

• Disease related malnutrition

• Activation of systemic inflammatory processes by the underlying disease process

• Causes anorexia, loss of body mass, with alterations in body mass composition

• Cachexia

• Multifactorial wasting syndrome characterised by loss skeletal muscle mass

with or without fat mass

• Cannot be reversed by conventional nutritional techniques

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Cachexia

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CANH in advanced cancer

• Surprised by how frequently PN and home PN is used elsewhere especially in ovarian and obstruction

• …few clinical studies have evaluated the risk-benefit ratio of artificial nutrition in the context of palliative care. Agreement exists among all healthcare professionals that it is not advisable or desirable to introduce artificial nutrition in an aphagic or hypophagic patient at the end stage of cancer, if their life expectancy is shorter than the expected duration that it would take to die of starvation (that is, less than 2 months)

• Conversely, it is unclear what should be done for such patients with incurable cancer when life expectancy is longer than 2 months.

• Pazart 2014

• Alim K study : Metastatic cancer with prognosis of <1 year

• PN group showed worst survival and increased toxicity• Boulenc 2018

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Should we hand out oral supplements?

• Studies have been limited and remain inconclusive as to the

effectiveness of oral nutrition strategies for the management of

weight loss in patients with cancer

• Arends 2017

• Need for a targeted approach depending on

• Stage of illness

• Cause for the weight loss

• Patient perspectives

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10 things1. We do not need to prolong life at all costs

2. People cannot insist on CANH but if there is doubt we should act to prolong life

3. The evidence is not clear about fluids at the end of life – but we all agree we need more research

4. When people are approaching the end of their lives there are many reversible causes of poor appetite and weight loss which should be carefully looked at

5. Once people can’t swallow with advanced dementia then CANH is not likely to help

6. People with advanced cancer aren’t starving: distinguishing between starvation and cachexia

7. To focus on enjoyment from food rather than nutritional value is often a better approach

8. Religious and cultural aspects should be considered and each decision made on an individual basis

9. An approach to withholding and withdrawing CANH is helpful remembering a 2nd opinion is required if not in last hours or days of life

10. Communication is most important

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To focus on enjoyment from food rather than nutritional value is often a better approach

• In end of life care nutrition is

primarily intended to support

comfort and quality of life

• Patients feel connected to others by

the thread of sharing food and drink

even if only in small or in a symbolic

way

• Meaningful interactions between the

patient, caregivers and medical team

are important to help fulfil each

patient’s specific needs

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10 things1. We do not need to prolong life at all costs

2. People cannot insist on CANH but if there is doubt we should act to prolong life

3. The evidence is not clear about fluids at the end of life – but we all agree we need more research

4. When people are approaching the end of their lives there are many reversible causes of poor appetite and weight loss which should be carefully looked at

5. Once people can’t swallow with advanced dementia then CANH is not likely to help

6. People with advanced cancer aren’t starving: distinguishing between starvation and cachexia

7. To focus on enjoyment from food rather than nutritional value is often a better approach

8. Religious and cultural aspects should be considered and each decision made on an individual basis

9. An approach to withholding and withdrawing CANH is helpful remembering a 2nd opinion is required if not in last hours or days of life

10. Communication is most important

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Religious and cultural aspects should be considered and each decision made on an individual basis• Hydration and nutrition when clinically assisted can be considered

basic care in some religions for example Roman Catholic, Jewish and

Islam

• However this is usually weighed against risks and harms from the

intervention

• The patient’s advance decisions will also influence this

• The authors also note: “in most north-western European nations the

treating physician does not need to adapt treatment to specific

religious beliefs in the majority of cases” owing to the changes in

attitude to end of life care

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10 things1. We do not need to prolong life at all costs

2. People cannot insist on CANH but if there is doubt we should act to prolong life

3. The evidence is not clear about fluids at the end of life – but we all agree we need more research

4. When people are approaching the end of their lives there are many reversible causes of poor appetite and weight loss which should be carefully looked at

5. Once people can’t swallow with advanced dementia then CANH is not likely to help

6. People with advanced cancer aren’t starving: distinguishing between starvation and cachexia

7. To focus on enjoyment from food rather than nutritional value is often a better approach

8. Religious and cultural aspects should be considered and each decision made on an individual basis

9. An approach to withholding and withdrawing CANH is helpful remembering a 2nd opinion is required if not in last hours or days of life

10. Communication is most important

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An approach to withholding and withdrawing CANH• Layer 1. The framework or facts. What we are bound by

• The law• Professional Guidance

• Evidence base• Resources available

• Layer 2. The patient.• Their capacity

• Their beliefs and preferences• Prognosis / outlook / likely changes in condition.

• Other nominated decision makers where appropriate.

• Layer 3. Formulate the ethical dilemma.• Ensure the correct question(s) is being asked.• Are we being influenced by our own perspective?

• Layer 4. Establish the options.• What are the potential moral justifications?• What are the practical solutions?

• What communication / negotiation / explanation is required?

• Layer 5. Communicating and coordinating• Communicating the options to those involved• Coordinating and putting into action the decision making

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BMA and RCP guidance • Only about clinically assisted with tubes, drips etc not about helping people to eat or drink by

normal means

• Does not apply to those approaching death – in last hours or days

• Strong presumption that the patient’s best interests are served by prolonging life – need to prove this is not the case

• GPs should be aware they will be required to make these decisions in various low consciousness states: multi-morbidity, frailty, stroke, brain injury and neurodegenerative conditions

• If not within hours or days of death then GMC requires a 2nd opinion

• The CCG or equivalent should pay for this

• “In patients with dementia, CANH is not usually clinically indicated where inadequate intake of nutrition is related to the advancing disease itself”

• Prognosis and awareness are important factors to consider

• Affirms Supreme Court ruling that there is no requirement for decisions about CANH to go to court, where there is agreement as to what is in the best interests of the patient, and the law and professional guidance have been correctly followed

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BMA and RCP checklist• Pre-stated wishes or proxy decision making

• Best interests decision-making meetings

• Have all the relevant people been involved

• Were they made aware of the likely prognosis for

recovery and range of possible outcomes

• The patient’s likely life expectancy if CANH is

continued

• Were the patient’s likely wishes (as they can be

known) taken into account?

• List of all those involved

• Clear record of decision and outcome

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10 things1. We do not need to prolong life at all costs

2. People cannot insist on CANH but if there is doubt we should act to prolong life

3. The evidence is not clear about fluids at the end of life – but we all agree we need more research

4. When people are approaching the end of their lives there are many reversible causes of poor appetite and weight loss which should be carefully looked at

5. Once people can’t swallow with advanced dementia then CANH is not likely to help

6. People with advanced cancer aren’t starving: distinguishing between starvation and cachexia

7. To focus on enjoyment from food rather than nutritional value is often a better approach

8. Religious and cultural aspects should be considered and each decision made on an individual basis

9. An approach to withholding and withdrawing CANH is helpful remembering a 2nd opinion is required if not in last hours or days of life

10. Communication is most important

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Communication is most important

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Starting with the person not the procedure or intervention• What is / was your job?

• How was your life before you came ill?

• Now you find yourself in this situation what is most important?

• Or asking the family if patient unable

• Tell me about your mum / dad / etc

• If they were able to communicate with us what do you think they would have wanted in this situation?

• What sort of person are they when well?

• Chiarchiaro 2016

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10 things1. We do not need to prolong life at all costs

2. People cannot insist on CANH but if there is doubt we should act to prolong life

3. The evidence is not clear about fluids at the end of life – but we all agree we need more research

4. When people are approaching the end of their lives there are many reversible causes of poor appetite and weight loss which should be carefully looked at

5. Once people can’t swallow with advanced dementia then CANH is not likely to help

6. People with advanced cancer aren’t starving: distinguishing between starvation and cachexia

7. To focus on enjoyment from food rather than nutritional value is often a better approach

8. Religious and cultural aspects should be considered and each decision made on an individual basis

9. An approach to withholding and withdrawing CANH is helpful remembering a 2nd opinion is required if not in last hours or days of life

10. Communication is most important

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• Good nutrition is important in caring for patients with life-limiting

illness, not only for meeting the body's physical requirements but also

because of its associated social, cultural and psychological benefits.

• So need early individual discussion

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Resources and further reading• ESPEN guidance: European Society for Clinical Nutrition

and Metabolism www.espen.org

• Clinically-assisted nutrition and hydration (CANH) and

adults who lack the capacity to consent Guidance for

decision-making in England and Wales. Royal College of

Physicians and BMA. Endorsed by GMC. 2018

• Nutrition, older people and the end of life. Donnelly G,

Wentworth L, Vernon MJ. Clinical Medicine 2013, Vol 13,

No 6: s9–s14

Episode on hydration and

nutrition in 7th series

Page 45: Hydration and Nutrition: Clinical and ethical issues · Hydration: Cochrane review 2014 •Hydration at the end of life may •Improve sedation and myoclonus •Worsen fluid retention

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