Post Liverpool Care Pathway End of Life
Conference
14th May 2014
Nutrition and Hydration
Presented by
Catriona Brooks and Carolyn Stapely
Macmillan Dietitians at WSHFT
Aim of this session
To empower you to feel confident with
managing food and drink concerns at the end
of life……
Diagnosing dying is not easy – it is not a precise science
Accurate prediction in non-cancer patients is especially difficult as
there is no accurate way of telling when it’s the last few days of life
This makes knowing what’s the right thing to do even harder for
health care professionals
Are they allowed to eat and drink?
If so, what can we give them?
How much should we give them?
Their oral intake is poor, should
we start them on artificial
nutrition or hydration?
Nutrition at
the end of
life
Should we be maintaining a
nutrition care plan?
Weight / MUST / food charts etc?
What do we tell the family when
they ask what we are doing
about their relatives poor food
and fluid intake?
Should we refer them to the
Dietitian due to their poor
dietary intake?
Is there any evidence available
to support what we are doing?
Will they die in discomfort
from hunger or thirst?
Are we affecting the dying
process by giving / withholding
food or fluids?
The length of the dying
process depends on which
cells are deprived of
oxygen – reducing organ
function
Changes in respiration,
loss of sphincter
control, reduction in
blood perfusion and
renal function
Loss of ability to swallow
due to neurological
dysfunction increasing
risk of choking
Weakness and fatigue - sleep
more to conserve energy
What happens
physiologically
when we die?
Gastric emptying, digestion and
absorption and peristalsis decline.
This reduces the body’s ability to
be able to tolerate food
Lose the desire
to eat and drink
– loss of appetite
can happen
weeks before
last hours of life.
There are many
causes for this,
most of which
become
irreversible close
to death.
Will they die in
discomfort from hunger
or dehydration?
Loss of appetite is normal and hunger is
not felt. Food is often not appealing or
may be nauseating. People who are dying
will eat and drink if they want to. Ketosis
due to reduced food intake may help to
enhance a euphoric effect which can calm
the person and help with pain.
Most experts believe that
dehydration in the last hours of
life does not cause distress and
may stimulate endorphin release
which adds to the persons sense
of well being
Studies have shown that terminally
ill patients do not experience
hunger or thirst and for those that
do this is satisfied with small
amounts of food and sips of fluid
Recent study (Bruera, Hui et al.)
comparing 100ml subcutaneous
fluid with 1L saline found no
difference in fatigue, sedation,
hallucination, muscle spasm or
overall survival between the groups
Dry mouth is usually due to mouth breathing
and medications and can be effectively
managed with good mouth care
What do we tell the family when
they ask what we are doing
about their relatives poor food
and fluid intake?
Check that the family know that their relative is dying and help them understand what
happens physiologically when we die, so that they can start to understand why their
relative is not eating or drinking much.
Let the relatives and family know what you are doing to keep their loved one comfortable
and how they can help with this too. Suggest other activities that encourage touch and
being present.
Are they allowed to eat and drink? What can we give them? How
much should we give them?
☺Always offer food and drink – rarely do people need to be strictly NBM
☺Take into consideration the personal and cultural preferences of the individual
and their family
☺ Focus on personal choice, taste and tolerance rather than the nutrient content
☺ Encourage independence (OT,SLT, Dietitian)
☺ Small quantities are better tolerated – may only be a few mouthfuls or sips
☺ Provide help with eating and drinking
☺ Softer food consistencies may be better tolerated
☺ Sucking on ice lollies or ice chips may relieve a dry mouth
☺ Optimise the presentation of food and drink so that it looks good. Think about
the size of plates, cups, crockery etc. to make eating/drinking easier
☺ Nutritional supplements are often unnecessary unless desired
Are we affecting the dying process by giving/withholding food or fluids?
The offer of food and drink by mouth is part of basic care as is the offer of washing and
pain relief. It must always be offered to patients who are able to swallow without serious
risk of choking or aspiration.
There is a genuine concern that dehydration accelerates death particularly in the elderly and
frail where maybe their symptoms resemble dying
We know that if you withhold fluids death usually occurs within 3-14 days
Withholding food alone with adequate hydration death occurs within 57-90 days
There is very little good quality research to answer this question
Much of the research that is available particularly focuses on the use of clinically assisted
nutrition and hydration (rather than food or drink by mouth) – but even with this research it
is often not of good quality.
The majority of people who are imminently dying do so comfortably without the assistance
of CAN/CAH. In the last days the lack of food or fluid will not contribute to the death.
Good communication with the medical teams, patient, family and carers is essential to
ensure patients get the right care.
Clinically Assisted Nutrition and Hydration (CAN/CAH)
The law does not distinguish CAN from any other forms of medical
treatment. A medical treatment is started for a specific purpose and
discontinued when failing to achieve or maintain this purpose. In
patients where death is believed to be inevitable and where nutrition
intervention is not considered to be of benefit, it can be withdrawn or
withheld.
Cochrane reviews have examined evidence on the effects of CAN/CAH upon the
quality and survival length of palliative care patients. To date there remains
insufficient good quality trials to make any recommendations for routine practice. It
therefore remains unknown whether this treatment helps people to live longer or
feel better. Clinicians therefore need to make decisions based on the perceived
benefits and harms of CAN/CAH in individual patient circumstances.
REFERENCES
British Medical Association (2007) Withholding and withdrawing life-prolonging medical
treatment: Guidance for decision making. London. Blackwell publishing
Good P, J Cavenagh et al. (2008a) “Medically assisted nutrition for palliative care in adult patients”
Cochrane Database Systematic Review 4
Good P, J Cavenagh et al. (2008b) “Medically assisted hydration for palliative care in adult
patients” Cochrane Database Systematic Review 2
Treatment and Care Towards the End of Life: Good practice in decision making. (2010) GMC.
Royal College of physicians and British Society of Gastroenterology (2010) Oral feeding difficulties
and dilemmas: A guide to practical care particularly towards the end of life. London: Royal
College of Physicians.
Bruera, ED. Hui, et al. (2013) “Parenteral hydration in patients with advanced cancer: A multicentre, double-blind, placebo controlled randomised trial” Journal of Clinical Oncology 31(1):
111-118
Parry et al. (2013) Evidence Briefing Pathways for the Dying Phase in End of Life Care
Independent review of the Liverpool Care Pathway. More Care Less Pathway (2013)
https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/212450/Liverp
ool_Care_Pathway.pdf
Leadership Alliance for the Care of Dying people. Engagement with patients, families, carers and
professionals. (2013) Gateway reference no:00616
To conclude…
“Palliative care affirms life but recognises dying as a natural
process; neither intentionally hastening nor postponing death”