How people die remains
in the memory of those
who live on…
(Dame Cicely Saunders)
Sunshine Care Training
Sarah Yorwerth & Tara Hollinshead
The End of Life Care Strategy
The End of Life Care Strategy, published by the Department of
Health in 2008, identified a number of significant issues affecting dying and
death in England:
Some people die as they would have wished, but many do not. Many
people do not die in the place they would choose to; many do not receive
quality care at the end of their lives; and there are reports that people have
not been treated with dignity and respect
In the past, the profile of end of life care across the NHS and across society
has been relatively low, leading to variability in access to and the quality of
end of life care across the country and in different communities
People are uncomfortable talking about dying and death,
meaning that when they come to the end of their lives friends and loved
ones are not aware of their preferences
The End of Life Care Strategy announced the formation of a new
national coalition…Dying Matters.
 To support implementation of the strategy
 Raise public awareness
 Change attitudes towards dying, death and bereavement.
The Department of Health End of Life Care Strategy acknowledges
that there are many challenges to be overcome to ensure that
everyone attains ‘a 'good death’ irrespective of their background.
Everybody deserves ‘a good death’. Also, to be:




Being treated as an individual, with dignity and respect
Being without pain and other symptoms
Being in familiar surroundings
Being in the company of close family and/or friends
How many people die each year…
 500,000 people die in England each year, and it is predicted that this will
rise to 590,000 within the next 20 years.




Heart failure, cancer, COPD, stroke and Dementia are the biggest killers.
One in four people in the UK will die of cancer.
2/3 of Deaths are over 75.
Around 30% of people over the age of 85 with cancer will also have
dementia.
Where do people want to die?
Research shows that around 70% of people would prefer to die at home, yet
around 60% currently die in hospital.
18% die at home, 17% in care homes, 4% in hospices and 3% elsewhere.
Does Dying Matters support hospice care?
Yes. Dying Matters fully supports hospice care as it sets a gold
standard that needs replicating in care homes, hospitals and all
settings.
STATS
Why talk about Death?
Isn’t it morbid?
Not at all. We all live and we all die. Life is something to celebrate about the
whole way…
Yes, people feel awkward/uncomfortable talking about Death, but we have to
do it at some point… else we may not get what we want. Talking about Death
doesn’t make it happen!
We are actually quite fortunate to live in a society where most live healthy lives
through to old age. Think about 100 years ago, what was available then? They
were also much younger and suffered from communicable diseases.
Most people died at home.
Fear of the unknown means sometimes people avoid other that are dying,
because they do not feel the can help or support them.




Do you know what your loved ones preferences are?
What do they not want?
How do you help them?
What about will’s an funeral wishes?
The Liverpool Pathway
The Liverpool Care Pathway (LCP) was developed to spread the hospice model of
end of life care into hospitals and other healthcare settings and it has enabled
thousands of people to have a dignified death.
However, press reports and feedback from families indicated that not everyone was
getting the high quality care that the public has a right to expect.
In November 2012…
Marie Curie called for the independent review of the LCP to be brought forward and
for an action plan to be put in place to ensure improvements where care is below
the highest standards.
In July 2013…
The findings from an independent review, led by Baroness Neuberger, into the
Liverpool Care Pathway (LCP) were published. The report highlighted failings in the
implementation of the LCP and recommended that the Government replaces it with
individual care plans over the following 12 months
As a result of these findings the review recommended that the LCP be phased out
over the following 12 months and replaced with individual care plans for people who
are approaching the end of life.
Palliative Care
What is Palliative Care…
 The active holistic care of patients with advanced
progressive illness.
 Management of pain and other symptoms and provision
of psychological, social and spiritual support is paramount.
 To achieve the best quality of life for patients and their
families.
What is Supportive Care…
 Helps the patient and their family to cope with their
condition and treatment of it – from pre-diagnosis,
through the process of diagnosis and treatment, to cure,
continuing illness or death and into bereavement.
 It helps the patient to maximise the benefits of treatment
and to live as well as possible with the effects of the
disease.
 It is given equal priority alongside diagnosis and
treatment.
End of Life Care
What is End of Life Care…
 End of life care is about caring for people who have
an advanced, progressive and incurable illness so
they can live as well as possible until they die.
 It is about providing support that meets the needs of
both the person who is dying and the people close to
them.
 This care has a strong focus on managing symptoms
to keep a person comfortable, helping them to
adapt to the changes in lifestyle and cope with the
emotional impact of their illness.
 End of life means different thing to different people
but generally refers to the last weeks and days in life
when the person’s illness becomes too much for their
body to cope with and death can no longer be
postponed through treatments.
End of Life Care
Changes occur as a person’s illness progresses because of the impact of
the illness on the body’s ability to function normally.
GP’s and Nurses monitor the persons physical condition and symptoms.




The impact that symptoms are having on a person’s well being
Increasing weakness of muscles and dependency on others.
Loss of appetite and inability to swallow tablets
Level of consciousness.
During the last few days or hours:
 Generally become weaker and sleepier (it is good to talk to them to reassure
and comfort them)
 Nil by mouth- people generally do not want to eat
 Nauseas.
 May lapse into unconsciousness.
 Passing less urine, or it is darker in colour. Incontinence can occur.
 Skin changes- hot, cold, dry, moist or clammy. Skin may look bluish or patchy, the
underside may become dark as a result of blood circulation slowing down.
 Restlessness, agitate or confusion due to dehydration. Unusual behaviour.
 Breathing may become difficult, or the pattern may change. Being shallow or
irregular. Long pauses, and the abdomen may rise and fall.
Personal Care
Various items of equipment may be available to assist people at home, such as pressure- relieving
mattress or a commode.
The NHS provides equipment through Occupational Therapy, Physiotherapy or District Nursing team’s
and alternatively have equipment on loan from the British Red Cross.
A baby monitor can allow the carer, to stay aware of how the client is, whilst they get on with other
activities.
Other items such a drinking straws, non-spill beakers, a urine bottle or bedpan.
Washing
It is important to maintain personal hygiene, for comfort and preventing infection.
 It is important to be gentle, especially with the presence of sores.
 Soap must be rinsed off completely, and skin should be tried gently.
 The water must be changes several times during the wash
 Only thee parts of the body being washed should be exposed.
 Moisturising creams may be applied gentle to dry areas such as your elbows, heels and soles of the
feet.
 An occasional alternative using wet wipes If the client does not feel up to it.
 Using dry shampoos as well.
 A no-rinse, waterless hair-washing cap which allows a shampoo without water.
Remember: Appearance can have a positive affect on how your client feels, Fresh clothes, A shave,
Make-up or wearing jewellery can make a huge difference. Imagine if this was you.
Mouth Care
Many people who are seriously ill have problems with their mouth such as:
• Dryness
• Ulcers
• Bleeding Gums
• Excess Saliva
• Altered taste
A soft baby toothbrush is best if your clients mouth is sore and use only a small amount of
tooth paste.
Rinse with water, a saline solution (1tsp salt in pint of water) or a mouth wash.
Do not use bicarbonate of soda or baking powder.
False teeth should be cleaned as usual.
Reliving a dry mouth with ice cubes, frozen fruit, lemonade or tonic water. Tinned,
unsweetened pineapple can cleanse the mouth and help with dryness.
Oral thrust is common in people who are ill. Which causes a very sore mouth and tongue,
and white patches on tongue, gum and inside of cheek. Report to DN.
Inform their GP, Nurse or Specialist for suitable medication.
Breathlessness
Breathless can occur during illness can occur at a much lower level of
physical exertion. Even crossing a room can be a struggle.
It is important to understand the changes in the breathing, and taking
everything at a pace.
Breathing Control…
 A method of taking normal breaths
 Slower, controlled breathing that doesn’t involve taking deeper breaths.
 Breathing using the lower chest whilst keeping the upper chest and shoulders
relaxed
To reduce the effort of breathing
To obtain a sense of control over breathing
Improve the efficiency of all respiratory muscles
Improve tolerance.
How do you do it?
By sitting in a chair and place one hand on upper chest and abdomen, take a
normal breath and feel the hand on abdomen rise up and out.
If in bed, try propping up with pillows (high sided lying)
Constipation
Constipation is one of the most common digestive problems due to
insufficient water in the stools, leaving them dry, hard and difficult to pass.
Symptoms include
 Going to the toilet to pass stools less often
 A feeling that the bowel is not empty after going to the toilet
 Having to strain to pass
 Faeces that are dry and hard and look like rabbit pellets
 Loss of appetite or feeling bloated
 Stomach ache, and cramps, sometimes accompanied by headache and
nausea.
 A furred tongue
 Fatigue.
Sometimes constipation can alternate with diarrhoea. When this happens,
the diarrhoea is an overflow of liquid stools that passes around the hard
stools and is mistaken for diarrhoea.
Conscious Patient
•
•
•
•
•
Monitor bowel habit in terms of frequency
of actions and consistency and amount of
motion.
Encourage fluids
Encourage high-fibre foods if tolerated:
wholegrain cereals and bread, porridge,
pulses, fruit, vegetables or dried fruit.
Drinks such as prune juice can be useful
but this may cause colic in some patients
Ensure laxatives are taken as prescribed
and monitor their effect report to the GP or
CNS or Community Nurse, if remains
constipated.
Severe constipation can sometimes cause
‘Overflow diarrhoea’: that is runny faeces
around a very hard stool.
If this happens, GP or District Nurse needs to
be contacted.
Unconscious Patient
Once the patient is in dying phase, and they
are settled, regular bowel actions may cease
• Check the patient at every visit for faecal
incontinence,
• Assist them with a wash as necessary,
using a protective barrier cream such as
conotrane, sorbaderm or cavilon.
If the patient is agitated, and your suspect
constipation, refer to the community nurse.
Loss of Appetite
Loss of appetite is very common from your clients condition, treatment
of medication.
 Changes in the taste buds
 Changes in the stomach- making them feel fuller
 Nausea, retching or gagging.
Swallowing difficulties
It is recommended by Marie Curie.
 Eat little and often,
 Large portions can be off putting
 Eating breakfast, when appetite Is normally best
 Try new foods and flavours.
 Small glass of sherry or brandy to stimulate appetite (check with GP)
 Finger foods or supply of snacks
 Do not rush and rest afterwards.
 Have food for pleasure, rather than survival!
Loss of Appetite
There are nourishment alternatives such as fluids and soft foods:
 Full fat milk or home made smoothies
 Full fat yoghurts or milk puddings
 Ice cream- put in drinks or milk puddings.
 Soups which can be liquidised
 Commercial supplements such as Complans and Ensures which can
be available on prescription.
Pain Management
Care workers are key to good pain control for clients, as you are the most regular
and frequent visitors.
You role is to assess pain control at each visit, encourage compliance with taking
their prescribed painkillers, and liaising with GP, Community Nurse, or Hospiscare
CNS if pain is not adequately controlled.
Breakthrough dose of medication
The client should have a prescription for a breakthrough dose of medication,
normally equivalent to one sixth of their daily dose. Encourage them to take this, if
they complain of pain, and reassess their pain score 30 minutes later. You need
to contact GP
Pain control in unconscious patient
When you are caring for an unconscious patient, always observe for signs of pain
when moving and handling that person: groaning, tensing up, flinching,
grimacing, shouting out, could all be indicative of pain, and should be referred to
GP, Community Nurse and CNS.
Pain Assessment
Consider…
Ask…
Where is the pain?
Are they able to locate the pain?
Can they tell you what they think the pain is?
When did it start?
Have they recently had pain relief?
Is it on going?
Does it come and go?
What does it feel like?
Stabbing? Cramping? Burning?
Score 0-10
Timings
When was your last dose of pain relief?
What did you take?
Have you had your breakthrough medication?
Changing
Have you eaten?
Is it too hot or cold?
Time of day?
Change positions?
A Syringe Driver is a small battery powered pump that
delivers medication from a syringe, through a soft
plastic tube under the skin.
It is used to deliver a continuous dose of medication to
control symptoms such as pain, sickness and fitting.
The nurse will explain to the carer why it is used.
The driver will make a gentle whirring noise which is
normal.
 Keep the syringe driver and area around the
needle dry.
 Look out for signs of redness or discomfort where the
needle meets the skin
 Don’t drop it.
 Let the nurse know if the alarm goes off
 Tell nurse or GP about the symptoms.
If the machine stops working, don’t panic. The
medication will remain active for a while. If the alarm
sounds, call the DN straight away,
Syringe Driver
Pain Management
Cultural Issues
Religious beliefs and attitudes
regarding death.
Towards the End of Life, people often become more aware of Religious beliefs or
spiritual feelings.
Death can challenge what we believe in, in so many ways.
Some people find that, often for the first time in their lives, they feel the need to think
about and discuss the meaning of life, their own experience and relationships.
People with strong religious faith, often find comfort in prayers of meditation.
Many people gain a lot of support from knowing that other people are praying for
them.
Cultural Issues
Religious beliefs and attitudes
regarding death.
Buddhism
General Beliefs
Not one God, but many Gods acknowledged although as lesser beings than Buddha.
Believe in rebirth and that the present life influences the next.
Following the teachings of Buddha brings them closer to Nirvana (enlightenment)
Beliefs regarding Care of the Dying
Time for meditation which brings enlightenment is important.
Patient may be reluctant to take medication that clouds the mind and impairs
meditation.
May appreciate a visit from Buddhist monk/sister.
Generally calm and accepting of death.
Handling and preparation of the body
Incense ay be lit in the room
The family may choose to wash the body
Cremation is usual.
Attitudes towards organ Donation/Autopsy
Usually no objection to post mortem
No consensus regarding organ donation
Cultural Issues
Religious beliefs and attitudes
regarding death.
Hindu
General Beliefs
Three Supreme Gods worshipped along with numerous others. Belief in a soul that needs to be
freed to join the supreme being. Believe in reincarnation. Different sects have different beliefs.
Beliefs regarding care of the Dying
Ritual of washing gives physical and spiritual cleanliness but modesty should be preserved.
Time for prayer and meditation is important
Pictures, beads or charms may be kept close to the patient.
Water from the River Ganges may be given
A Hindu priest may tie a threat around the wrist of neck which should not be removed.
Handling and preparation of the Body
Non-Hindus may touch the body if it is wrapped in a sheet or they wear gloves. The family may
wish to wash the body and have it placed on the floor while incense burns.
All are cremated as soon as possible.
Attitudes towards Organ donation and Autopsy.
No objection to organ donation. Post mortems generally objected to as considered
disrespectful, unless legally necessary.
Cultural Issues
Religious beliefs and attitudes
regarding death.
Islam
General Beliefs
Believe in one God, Allah.
Believe in life after death and resurrection of the body. Judgement by God according to a person’s
deeds delivers him to heaven or hell.
Five religious duties are: Faith, Prayer, Almsgiving (charitable giving), Fasting and Pilgrimage (visit)
to Mecca.
Beliefs regarding Care of the Dying
Family and friends provide emotional support. Prayer is said five times daily facing Mecca.
The face of a dying person should be turned towards Mecca. Readings from the Koran may be
said close to death.
The patient may wish a religious leader to visit. Modesty should be preserved.
Handling and preparation of the Body.
Non- Muslims touching the body after death should wear gloves. The head is turn to the right
towards Mecca.
The family may wish to wash the body. Muslims are buried as soon as possible.
Organ donation is acceptable.
Autopsy is only permissible for legal or medical reasons.
Cultural Issues
Religious beliefs and attitudes
regarding death.
Judaism
General Beliefs
Believe in one God, an afterlife and physical resurrection of the dead.
Strong sense of the value of human life.
Orthodox- Traditional, Non-Orthodox- make religious observance to fit into modern society.
Beliefs regarding Care of the Dying
No Last rites but a visit from Rabbi (leader of synagogue) may be requested.
Psalms and prayers are recited by the patient and family.
Powerful grip on life can produce ambivalence to a dying person
Handling and preparation of the Body.
Traditionally, the body is left for 8 minutes with a feather over the nose and mouth to confirm
death. The jaw is then bound and the arms placed by the side.
This may be done by the family. The body is placed on the floor, feet towards the door with
candle at the end.
The body should not be moved on the Sabbath but this is rarely practicable. The body should not
be left alone.
Funeral occurs as soon as possible.
Orthodox Jews are buried, Non-Orthodox Jews may be cremated.
Post Mortem resisted by Orthodox Jews unless ordered by Civil Authorities and Organ
Donations are frowned upon.
Cultural Issues
Religious beliefs and attitudes
regarding death.
Sikhism
General Beliefs
Believe in one God. Individuals, by doing good and find the route to Salvations.
Believe in reincarnation and a path towards perfection.
Strong community aspect.
Wear 5 symbols of Sikhism: Kesh (uncut hair), Kangha (comb), Kara (steel bangle), Kirpan
(dagger), Kaccha (long under-shorts)
Beliefs regarding Care of the Dying
Near Death, the family pray at the bedside an read from the holy book.
Some may prefer to pray privately.
Tend not to be very scared of death because of the doctrine of reincarnation.
Handling and preparation of the Body.
Non-Sikhs may touch the body but the family may wish to prepare the body themselves in which
case the body should be wrapped in a plain sheet.
The family will wash and dress the body.
The 5 K’s should be left intact.
Apart from neonates (newborns), all are cremated and should be as a soon as possible.
Cultural Barriers to Communication
Religious beliefs and attitudes
regarding death.
The Environment
It is important to maintain the characteristics of a ‘normal’ environment. Special equipment and medical
supplies can make it seem ‘hospital like’.
Photos, cards and art can make the surroundings seem less clinical.
It is natural for a person to feel anxious or depressed when they are ill. These feelings may become
worse towards the end of life.
People who are ill can feel isolated or fear abandonment, especially if they have a period of respite care
away from home and may need reassurance that they wont be left alone.
As a carer you may notice:
 Apathy or loss of interest
 Loss of appetite
 Anger or irritability with other people, especially the carers.
 Unexpected or extended episodes of crying
 Sleep problems
Denial is a very common emotion to experience, your client may not admit their feelings, or express in a
negative way.
Communication
No-one wants to talk about dying
We need to face the facts: Many people don’t die as they might have wished.
They may be kept alive longer than they’d have wanted, or die somewhere they don’t want to be.
They may not have left a will, or expressed wishes about their funeral, they may have dependents.









The type of Care someone would like towards the end of their life
Where they would like to die
Remember: We are all dying, it is good to
Whether they want to be resuscitated or not
talk about plans, fears and hopes.
Funeral arrangements
Try not to fill silences, or answer for them.
It may help them to bring up subjects
Care of dependants.
important to them.
Save other lives, through organ donation.
How they’d like to be remembered.
Whether they have any worries.
Anything else they would like to say
Look for invitations to talk. Maybe when talking about future arrangements.
Encourage conversation- e.g. ‘Do you really think so’ or ‘How do you mean;
Communication
Life is for living
So it goes against every instinct we have to start planning for our death: in fact, only 1/10 of us
have talked to anyone about how or where we’d like to die. But every adult, of whatever age,
needs to look ahead and ask ‘What if?’
What if I was told I had a week to
live?
Would those around me know what I want?
What about my wishes?
Have I made a will?
Would those I love, know that?
Would anyone know my plans after death?
Would you want to spend your last days
worrying?
Communication
“It was the little acts of kindness and thoughtfulness
that meant most to us when Joan was dying. Some of
them, like people bring around old pictures, made us
laugh and cry at the same time”
Communication
That D word!
Conversations around ‘dying’ are very sensitive- staff try to avoid conversation with dying people.
The anticipated ‘rise’ in the death rate, and increasing number of people dying in the communitymeans more training.
Although the word ‘dying’ or ‘death’ can be replaced by many common euphemisms/sayings .
Although, these should be actively avoided- as we need to express clear and concise
communication.
Try and list many euphemisms that are used:
Death is near…
After Death
After Death
Bereavement
Bereavement