Sunshine Care Training Sarah Yorwerth & Tara Hollinshead

1. How people die remains in the memory of those who live on… (Dame Cicely Saunders) Sunshine Care Training Sarah Yorwerth & Tara Hollinshead Dying Matters

2. 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

3. 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

4. STATS • 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.

5. 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?

6. 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.

7. 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.

8. 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.

9. 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.

10. 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.

11. 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.

12. 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)

13. 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.

15. 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!

16. 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.

17. 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.

18. Pain Assessment

19. Syringe Driver • 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,

20. Pain Management

21. 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.

22. 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

23. 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.

24. 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.

25. 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.

26. 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.

27. Cultural Barriers to Communication Religious beliefs and attitudes regarding death. Volume of Voice: Consider other cultures and how loud they speak. For example, people in Israel are more accustomed to speak louder than people in England. This may be seen as rudeness and being abrupt. But also consider physical implications (deafness). Tone of Voice: Can be easily misinterpreted and assumptions can happen. In cultures where people tend to speak more sternly. It could relay intimidation or being over bearing. Tone of voice can also be based on speed, pace and rhythm. E.g. Some American people perceive the English accent as being intelligent and sophisticated. Gender Expectations: All cultures have their own ideas of appropriate gender behaviour and roles. In many countries, women are sub-ordinate to men, some women are deferred to making eye contact with male superiors which can cause difficulties with genders of carers. Cultural Tension: Assumptions about other cultures, some can be merit or unrealistic, political/ social conflicts can cause tension within the care practice and overall have a barrier. ReligiousViews: This can affect ideas and philosophical outlooks which can be strong and opposed to the other. E.g. Orthox Jews may have an aversion to working in restaurant that serves pork or shrimp due to the prohibited diet in the Torah. Personal Space: Some cultures value little personal space and others value more. Consider what is best for your Service User and other physical barriers such as sight and hearing.

28. 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.

29. 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 • Whether they want to be resuscitated or not • Funeral arrangements • Care of dependants. • 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; Remember: We are all dying, it is good to talk about plans, fears and hopes. Try not to fill silences, or answer for them. It may help them to bring up subjects important to them.

30. 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?

31. Communication During the Conversation: Try and gauge how much they want to talk Treat them as you normally would: people still think of you in the same way. If you feel you need to change the subject- this is natural Try not to rush them. Help the family, they often appreciate some time off, or even offer. Bear in mind that its nearly always better to do something than nothing- no silences. Making contact is very important. Try not to worry about saying the wrong thing. Try not to make assumptions of what the person wants. “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”

32. 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 community- means 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:

33. Biting the biscuit Belly Up Breathed the last breath Ceased to be A changed form Expired Fallen off the perch Game over Gone south Gone West In limbo In repose In the crisper Kicked the bucket Left the building No more Passed over Shuffled off the Mortal Coil Stiff Turned up the toes Pushing up the daisies Reached Nirvana Flatlined Pulled the plug Bite the Dust Crow bait Worm food Horizontal phone booth 6ft under Taking a dirt nap Bumped off Snuffed it Danced the last dance Last curtain call Baste the Turkey Gone to sleep City Returned to sender Immortally challenged Passed the sell by date Winning one for the reaper Checked out Croaked Closed Shop Crossed over And it goes on….

34. Death is near… As a person approaches the very end, there are physical changes and spiritual/emotional changes that happen. The Physical changes… Cooling- Hands, arms, feet and legs begin to cool as the circulation of blood decreases. Changes in circulation also cause the skin to become discoloured in areas. Sleepiness/loss of consciousness- People become very drowsy, sleeping more and become harder to wake. Less able to communicate. We still do not know what their level of awareness might be. It is important to let them know you are still there, holding hands, or speaking to them. Confusion/delirium- There may be disorientation or agitation. This can occur as less blood flows to the brain, or due to other physical changes. Calm reassurance is needed. The Health Care Team may be able to manage the symptoms with medication, signs of agitation, is normally indicating pain.

35. Reduced intake of food/fluid- The person may not want anything, there is no need to force this. Loss of ability to swallow- Swallowing becomes difficult as weakness increases. As saliva and other secretions build up, there may be a gurgling or rattling with each breath. It may sound like choking, changing the persons position may help drainage and reduce the noise Loss of bowel or bladder control- As muscles weaken, the person who is dying may no longer be able to control functions. It is important to maintain hygiene and comfort. Changes in breathing- Patterns begin to change. There may be periods of shallow and deep breathing. There may be a delay of 10-20secs between breaths. Changes might also show signs of discomfort. Visions- We all go through life relying on the evidence from our senses and we are quick to reject the things that we feel are not normal. Your client may say that a deceased relative has spoken to them, we are likely to dismiss this. Your client may say things that make no sense, for example, ‘Where are my car keys?’ ‘I’ve missed the train, I’m going to be late’

36. When a person dies: The heart stops beating Breathing stops Body colour becomes pale The body cools Muscles relax Urine and stools may release They eyes may remain open The Jaw can fall open The trickling of internal fluids may be heard.

37. After Death It is very difficult to ascertain how you will react at this time. It is important you communicate to the office regularly so the appropriate support can be arranged. It is important we consider what was part of their Advance Care Plan to ensure we follow the wishes of pour client. Whilst it might be clear, that they person has died, at some point an appropriate health care professional will need to verify death. They do this by making certain checks to be sure that they person has died. Usually a GP will need to carry this out and completion a medical certificate of cause of death. This paperwork will be needed to register the death, obtain the death certificate and arrange the funeral. It is important to contact the Palliative Care Team at this time. They are there to support everyone. After the death has been formally verified, the next stage depends on Funeral Director arrangements. They normally come within an hour of being contacted, but there is no rush. Funeral directors tend to take the body away promptly, but in most cases they do not have to do so. It is a legal requirement that a death is registered with a Registrar within 5 days in England, Wales and Northern Ireland, and 8 days in Scotland.

38. After Death Burial Check the person’s papers to see if a document can be found (possibly called a ‘deed of grant’) or receipt indicating that a burial space has been prearranged. Costs vary depending on whether the person live in that area at the time of death. Most churchyards are no longer open for burial because there is no more space. Alternative sites can include nature reserves and woodland burial sites. A Certificate for Burial or Cremation includes a tear off slip that needs to be returned to the Registrar. Cremation Certain forms need to be completed before cremation. An executor needs to complete an application form prior from the Funeral Directors. Two doctors need to complete these- and there is normally a charge for this. There are some restrictions of what you put in the coffin because of regulations and emissions. Disposal of ashes The person may have already specified where they want their ashes to be scattered or buried. In the UK you can generally scatter ashes anywhere, but ask landowner permission if on private land. You will need to contact the Local Environmental agency is scattering on water.

39. Bereavement Disbelief Anger Confusion Shock Denial

40. Bereavement Do not grieve alone… Turn to Friends Draw comfort from faith’s or beliefs Join a support group Talk to a therapist/ support group. Take care of yourself.