Contents Recognising Dying...................................................................................................................................1 Signs of deterioration.......................................................................................................2 Communication..............................................................................................................................................3 Breaking bad news..............................................................................................................4 Individual Plan of Care.......................................................................................................................8 Support for patients and families....................................................................................10 Nutrition and Hydration....................................................................................................................11 Spiritual Care......................................................................................................................................................13 Chaplaincy........................................................................................................................................13 Symptom Management......................................................................................................................14 Why should anticipatory medicine be prescribed?..............14 Guidelines for anticipatory medication...................................................15 Bereavement Care.....................................................................................................................................16 Tissue Donation.............................................................................................................................................20 Additional Support....................................................................................................................................22 Telephone numbers............................................................................................................23 Staff support and development.........................................................................24
Recognising Dying It can be challenging to recognise when a patient is entering their last hours and days of life, and at times that uncertainty may act as a barrier to communication with the dying person and their loved ones. However, these uncertainties can often be shared as part of an open and honest conversation acknowledging that someone is deteriorating. Who can recognise that a patient is dying? Each member of a multidisciplinary team can help recognise a deteriorating patient, and often observations from the patient’s family or the patient themselves are invaluable. A doctor of ST3 level or above should be involved to evaluate whether reversible causes have been excluded, and the patient should be reviewed by a consultant within 24 hours. When we recognise someone is dying: • . • • . • . • . • • .
An individualised plan of care can be made with the input of the patient and their family. Symptoms can be monitored and managed. The patient and family can be supported appropriately through a pivotal time. Unnecessary investigations and interventions can be discontinued. It gives the patient and their family time to prepare, both emotionally and practically. It allows spiritual needs to be addressed. It improves the chance of people dying in the place of their choosing.
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How do you recognise dying? We have the opportunity to recognise dying in a patient with: • . . • .
A potentially reversible illness that has reached their ceiling of appropriate treatment and continues to deteriorate. A progressive, incurable illness that is deteriorating without reversible factors.
Factors to be taken into consideration include: • • . • •
The person’s underlying condition(s) Whether reversible causes of deterioration have been ruled out or treated Their ceiling of treatment The rate of their deterioration
What are some signs of deterioration? • . • . • • • . •
Increasing physiological dysfunction recognised by increasing Early Warning Score A progressive deterioration in function and reliance on assistance Increasing fatigue, spending more time asleep A lack of interest in food and drink Weakness and swallowing difficulties, including an inability to swallow secretions Changes in breathing pattern or skin colour
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Communication When a patient is dying it is important that they are given the opportunity to be included in conversations and to have open and honest discussions about their care. It can be good to start by exploring what the person already understands about their condition, if there is anything they want to discuss and anyone else they want to include in conversations. If the patient is likely to die soon then it is important to communicate this sensitively to them or to their family, if they are unable to take part in conversations. The level of detail you go into will vary from person to person. Some people like to have all information available and others will find it burdensome or confusing. Generally, people are far more likely to be distressed by lack of information than by open, honest discussions. What to consider when talking about dying: • • . • • .
Environment – quiet, private, avoiding interruptions Who is present – does the patient want people they are close to present for support? Know the patient’s history and information Ensure that your communication is clear, compassionate, open and honest
Language is important – it is much clearer to use the words ‘dying’ and ‘last few days of life’ than ‘poorly’ or ‘for TLC’, for example use: • • •
‘Plan of Care’ NOT ‘pathway’ ‘Review medication’ NOT ‘stop treatment’ ‘Died’ NOT ‘passed away’ 3
Breaking Bad News You cannot soften the impact of bad news. However, delivering this news will not only ensure the message is clear and understood but also helps the person adjust to the consequences of the news. PREPARE • . .
Find out what the patient already knows and find out how much the patient wants to know. Give a warning signal. Break the news using simple but clear language.
PAUSE •
Wait for a response.
ASSESS • . . . . • . .
Focus on the patient’s feelings. Encourage the patient to express their concerns. Check the patient understands. Make a plan of action with the person, including positive practical support but not false reassurance. Ensure a follow-up appointment is available. Give written information as appropriate. Check your own state of mind before seeing the next patient.
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A model to support you in Breaking Bad News Setting up the conversation: Gather relevant information and think about the terminology you will be using (it must be understandable by all involved), privacy and who needs to be there (staff, significant others). Consider how to open this conversation. Perception: Find out what the patient knows and how serious they think it is. Use open ended questions to ensure you get the information needed. -
What is your understanding of your illness? What did Dr X tell you when they sent you here?
Invitation: Patients have the right to hear every detail but they also have a right not to hear or want to know every detail. Unless you ask, you will never know how much information they need. -
Offer to answer any questions they may have.
Knowledge: Having found out what the patient already understands – clarify this and use this as your starting point. Build the conversation. Give information in small chunks and check that it has been understood. Simplify if needed. Listen to the person’s agenda, not just your own!
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Emotions: Respond to the person’s emotions – people react in different ways. Acknowledge what you see and ask about it – ‘what are you thinking’ – explore further if you need to. Empathy will offer support and allow the person to express their feelings and worries. Summary and Strategy: People will look to health professionals for help in making sense of confusion and offering plans for the future. Make a plan or strategy and explain it, for example preparing for the worst and hoping for the best. Help identify their coping strategies, other sources of support and incorporate them. DOCUMENT the conversation clearly in the notes!
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Talking to relatives
A guide to compassionate phone communication during COVID-19
Introduce
SPEAK SLOWLY
OPEN WITH A QUESTION
I’m calling to give you an update on your brother, Frank.
GRACE
WARD SISTER
Share info in small chunks
Honesty with uncertainty
We hope Frank improves with these treatments, but we’re worried he may not recover.
Is there anything you can tell me about Frank to help us look after him? What matters to him?
LISTEN
I am so sorry. Please, take your time.
EMPATHISE
Afterwards
Before I say goodbye, do you have any other questions about Frank?
I’m so sorry to tell you this over the phone, but sadly Frank died a few minutes ago.
We’ve been looking after him and making sure he’s comfortable.
ACKNOWLEDGE
It must be very hard to take this in, especially over the phone.
DON’T RUSH Ending the call
EUPHEMISMS JARGON
Frank is very sick and his body is getting tired. Unfortunately he’s now so unwell that he could die in the next hours to days.
Sick enough to die
Can you tell me what you know about his condition?
There are treatments that might help Frank get better, such as giving him oxygen to help with his breathing. But if his heart stopped, we wouldn’t try to restart it, as this wouldn’t work.
Hope for the best, plan for the worst
Allow silence
Are you OK to talk right now?
PAUSES SIMPLE LANGUAGE
Helpful concepts
Comfort and reassure
ESTABLISH WHAT THEY KNOW
I can hear how upset you are. This is an awful situation.
NEXT STEPS
Do you need any further information or support?
Chat with a colleague. These conversations are hard. #weareallhuman
Developed by Dr Antonia Field-Smith and Dr Louise Robinson, Palliative Care Team, West Middlesex Hospital
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Individual Plan of Care Planning for the last days of life When a patient is dying it is important to discuss their needs and wishes for the last days of life. Some patients will be able to discuss this themselves, but others may be too unwell or not have the capacity to do so. If the patient lacks capacity and is unable to participate in conversations then those people close to them should be involved in discussions and if appropriate, in making decisions in their best interests. It is important to ask if the patient has made or recorded any decisions in advance. They may have an advance decision to refuse treatment in place or may have appointed a lasting power of attorney. Some patients may previously have expressed wishes about where they would prefer to die. All decisions should be made in accordance with the principles of the Mental Capacity Act (2005). An individual plan of care Each patient who is recognised to be dying must have a plan for their care that considers their individual needs. The plan should be discussed openly with the person and those identified as important to them. The plan must be reviewed on a daily basis and altered if the patient’s needs have changed. Documenting the plan of care The ‘Individual Plan of Care for the Person in the Last Days and Hours of Life’ supports the documentation of care provided for a person in the last days and hours of life. It also contains a lot of useful guidance about things to consider when caring for a dying person.
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Important things to consider within the plan •
Preferred place of death
•
Symptom management
•
Nutrition and hydration
•
Practical needs
•
Social needs
•
Psychological support
•
Family involvement and support
•
Spiritual needs
•
Cultural needs
•
Religious beliefs
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Support for patients and families Practical Support: Guest beds We have guest beds that can be put next to the patient’s bed if they need someone to stay with them or if they are in the last days of life. They give relatives a chance to spend those precious last days or hours next to their loved one. Contact Logistics 82221 or bleep 417 to request a guest bed Pets As a general rule animals will not be allowed in clinical areas within the Trust; with the exception of trained and assessed therapy dogs and assistant dogs. In specialised circumstances (the dying patient) a pet may be permitted to visit if it is beneficial to the emotional and physical needs of the patient. This must be discussed with the Infection Control team and patient safety issues of the individual and other patients within the area fully considered prior to permitting the visit. If the patient/family would like a visit from Jasper (therapy dog) contact the chaplaincy team. Parking vouchers Parking vouchers are available to allow family members to park free of charge. These are available on OLI – Clinical Information – Palliative/End of Life. Anne Robson Trust The Anne Robson Trust helpline volunteers are here to listen and support you, if you or a loved one are facing the end of life at home, in a hospital, care home or hospice. Support line: 0808 801 0688 10
Nutrition and hydration Reduced oral intake is part of the dying process. This can be an emotive topic and should be discussed routinely with patients (where possible) and their families. Simple measures to support nutrition and hydration when someone is dying When a person is able to eat and drink, they should always be supported to do so as they desire. When someone is dying, the purpose of nutrition and hydration should be patient comfort and enjoyment. If the person has swallowing problems, discuss the benefits and risks of continuing to eat and drink. When someone only has a short time to live it may still be appropriate for them to eat and drink even if there is a risk of aspiration. •
Refer to Eating and Drinking with Risk of Aspiration information leaflet.
All patients should be offered frequent mouth care. Consider using a patient’s preferred drink in place of water during mouth care. Oral thrush is common – assess all patients and treat as necessary. Thirst or dry mouth can also be relieved by simple measures such as: • • •
Sucking on ice lollies or small chips of ice Assistance with brushing teeth or cleaning dentures Application of lip balm
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Clinically assisted hydration for dying patients Clinically assisted hydration, for example intravenous or subcutaneous fluids, may be of benefit for patients who are dying but whose condition is deteriorating slowly, or for those who are experiencing: • • •
Thirst not manageable by oral measures Nausea and vomiting Confusion and restlessness due to delirium
There are some risks associated with clinically assisted hydration in the last days of life, which must be balanced against potential benefits: • • • . • .
Increased pulmonary or peripheral oedema Increased chest secretions Increased frequency of urination, which may be distressing for some patients. Local discomfort from insertion of intravenous cannulas or subcutaneous infusions.
There is no clear evidence that either providing or withholding clinically assisted hydration has any effect on how long a patient will live. The decision to trial clinically assisted hydration in a dying patient must be individualised to the patient’s circumstances. Trials should be reviewed every 12 hours to assess for benefits and adverse effects. Patients who wish to die at home and require clinically assisted hydration can be supported with subcutaneous fluids in the community. For further details please see NICE Guidance NG31 – Care of dying adults in the last days of life.
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Spiritual Care The chaplaincy department is here to support all patients during their time in hospital and provides 24/7 cover for urgent call outs via Switchboard. As chaplains we seek to: • • . • • . •
Listen and be alongside patients Provide patients with the space where they can be truly honest if they wish, about how it really feels right now. Show empathy and kindness Help the patient draw strength from the things that matter to them Assist with religious needs, when asked to
As chaplains we do not: • • •
Preach or be judgemental Push religion onto people Visit for long periods of time
Please do offer the chaplaincy service to patients, perhaps simply saying: ‘If you need someone to talk to, our chaplains are good at listening’ If the person has a faith, perhaps ask: ‘Would you like one of our chaplains to say a prayer with you, or to give you a short blessing?’
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Symptom management Anticipatory medication Why should anticipatory medication be prescribed? NICE guidelines recommend we proactively manage symptoms in the last days of life, by prescribing medication in advance, so that if the patient develops a symptom, it can be managed promptly. There are five symptoms which occur most commonly in the last days of life, whatever the cause of the patient’s deterioration is: • • •
• Pain • Agitation Nausea and/or vomiting
Excess respiratory secretions Breathlessness
Explain to the patient and family why the medications have been prescribed and the indications. Prescribing guidance is given on the next page. Care of the dying – symptom observation chart and guidelines This chart assists healthcare professionals in assessing and managing symptoms in patients who are in the last days and hours of life. The chart should be completed by trained nurses. •
It aims to support high quality care to patients.
The chart should be used in conjunction with the Individualised Plan of Care and Support for the Dying Person in the Last Days and Hours of Life. Please refer to the Symptom Control guidance for more information. This can be found on the Palliative Care – End of Life OLI page under Clinical Information drop down box. 14
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Bereavement Care Good bereavement care is really important for both the patient and their loved ones when someone has died or is dying. Bereavement is everybody’s business – we can ALL make a difference. Often relatives say they remember the little things that staff did for them that made them feel cared for … very often we worry about ‘saying the right thing’ and that fear can stop us saying anything! It is important to listen to patients and families about what they want, involve them in discussions and offer choices. When health services get it right, showing empathy and providing good quality care, bereaved people are supported to accept the death and to move into the grieving process as a natural progression. However if we get it wrong, this can cause additional distress which can affect how someone grieves for a long time after a death. For example, families tell us they appreciate being offered the opportunity to care for their loved one after death – ask if they want to comb their hair or help to wash and dress them – and support them to do so. They might not want to, but it means a lot to relatives if they are asked.
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REMEMBER Children are in families too – it may be a parent, a grandparent or another family member who is in hospital – they are never too young to grieve and the way that they experience events around a death, particularly whether they are included, involved and listened to, can have a great impact on their bereavement journey. Research has demonstrated that early truthful conversations, using simple language and giving information in small amounts, are very important for children and young people. You can find more information: www.childbereavementuk.org www.winstonswish.org Both organisations have Freephone Helplines that can advise parents and carers or professionals about supporting bereaved children.
“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” - Maya Angelou
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QUESTIONS If you have any questions about bereavement care or you need any advice please contact the Bereavement Nurse Specialist for ELHT. The Bereavement Nurse: • . . • . . • . . • . • .
Provides support to families affected by expected and sudden deaths – this includes pre-bereavement advice and support where someone has a life-limiting illness Provides education about bereavement care, verification of expected death and advice on pre-bereavement support Offers advice around accessing bereavement support for families and professionals in hospital and community – including children and young people Champions bereavement support and the impact of bereavement work on staff Contact details: 01254 732825 (x82825 internal) or 07944 190 622 (Monday – Friday)
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Talking and being with people who are bereaved (adapted from Cruse Bereavement Care Scotland, 2014) DO
DON’T
Be aware of how to sensitively approach interactions with bereaved people – have the confidence to talk or just listen.
Hide away from the bereaved through fear or embarrassment.
Acknowledge their grief and offer sympathy – even saying you’re finding it hard to know what to say is okay.
Say you know how they feel – you can’t.
Take time to listen – attentively.
Talk about your own experiences.
Use clear language – has died, mortuary – people hearing bad news only hear key words so it’s important to use straightforward words that cannot be confused or misinterpreted.
Use euphemisms – passed, lost, Rose Cottage – they are often used because we feel uncomfortable but are not always helpful and can be confusing for those hearing them.
Suggest a quiet place to sit together.
Use platitudes like ‘time is a great healer’.
Use the name of the person who died.
Rush the conversation.
Handle and package belongings sensitively.
Hand possessions to a family in an unthoughtful manner.
Share resources – leaflets and contacts.
Promise what you can’t deliver.
Remember everyone is different.
Forget that you need support too!
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Tissue Donation TISSUE DONATION ASSESSMENT PRIOR TO REFERRALA GUIDE FOR HEALTH PROFESSIONALS The criteria below are to help staff carry out an initial assessment of the deceased to see if they might be a suitable donor. If you require further assistance please call: National Referral Centre (NRC) on 0800 432 0559 (opening times 08.00-20.00). MAIN CONTRAINDICATIONS TO ALL TISSUE DONATION: • . • . • • . • • • • . • •
Dementia, Alzheimer’s, Parkinson’s - Neurodegenerative disease of unknown aetiology Progressive memory loss of unknown origin - Risk factors for CJD or its variant dementia SARS-CoV-2 (Covid 19) History of haematological cancer (Lymphoma, leukaemia, myeloma). Thrombocytopenia of unknown cause History of malignant melanoma History of chronic viral hepatitis or HIV infection Diseases of unknown aetiology if cause unclear e.g. Multiple Sclerosis Previous Organ or Tissue Transplant Some behavioural/Lifestyle risks (e.g. current IV drug use)
SPECIFIC CONTRAINDICATIONS TO EYE DONATION: • • . • .
Primary and metastatic eye cancer Intrinsic Eye disease: e.g., active eye inflammation or infection. Sepsis due to a viral or fungal infection (NB. bacterial sepsis not a contraindication for eye only donation) 20
SPECIFIC CONTRAINDICATIONS TO MULTI TISSUE DONATION (EYE DONATION STILL POSSIBLE): • • . .
Any Sepsis/systemic infection Cancer — exceptions are: basal cell carcinoma, non-haematological pre-cancerous diseases e.g. Barretts oesophagus and cancer insitu fully excised.
Following review of the above contraindications your patient is a potential tissue donor:Following patient’s death please ask the Next of Kin/family if they would like more information about the possibility of tissue donation. This is something positive for the family and can give them comfort and pride in helping others. If the family agree to this obtain a contact number from Next of Kin and refer the patient to the National Referral Centre on the contact number above. Tell the family to expect a call from the National Referral Centre (in daytime hours) but if they do not receive a call it means that the patient has been assessed further and are not suitable for tissue donation. The National Referral Centre will also check the Organ Donation register to check if any known decision is registered by the patient. They will require some information about the patient’s hospital stay. If the patient dies between 20.00-08.00 you can still call the National Referral Centre and leave a message. A Tissue Coordinator will contact the ward after 08.00 the following day for the required information. Please ensure the notes are available for this on the ward however if not, they will call General Office. If the patient is not suitable the NRC will inform you and will not contact the family.
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Additional Support Local Support Please speak to the nurse in charge to identify the location of the below resources on your ward: • • . • .
Care of the Dying Person Symptom Observation Chart Discharge Checklist for the Person in the Last Days of Life (if the patient wishes to die at home) OLI → Clinical Information → Palliative / End of Life Care Clinical Practice Summary
National Support • • • . • . • . • . .
GMC: Treatment & Care Towards the End of Life RCN resources: www.rcneolnutritionhydration.org.uk One chance to get it right: Duties & Responsibilities of Health Care Staff, LACDP, June 2014 Leadership Alliance for the Care of Dying People via NHS England website NICE Guideline NG31 “Care of dying adults in the last days of life” Dec 2015 Pennine Lancashire Training Directory for Palliative and End of Life Care – available on OLI, CCG website or contact the team
Additional Resources for Those Important to the Patient Please speak to the nurse in charge to identify the location of the below resources on your ward: • . . • • . •
End of Life and Bereavement Resource Box: containing memory boxes, comfort packs, car parking voucher, memento resources, tissue donation information etc. Care and Support in the Last Days of Life leaflet Eating and Drinking with Risk of Aspiration Information leaflet Hospital Chaplaincy and Spiritual Care Services leaflet 22
Contact
Availability
Hospital Specialist Palliative Care Team Monday – Friday Contact for support and advice 08.30 – 16.30 Community Specialist Palliative Care Team Contact for support and advice
Monday – Friday 08.30 – 16.30
Out of Hours Advice Line Based at East Lancashire Hospice Contact for support and advice
Out of Hours
Tel Number Ext: 82652 or 01254 732652 Ext: 82316 or 01254 732316
Ext: 86326 or 01254 736326 Ext: 86428 or 01254 736428
07730 639 399
Ext. 82825 or 01254 732825 Mobile: 07944 190 622
Bereavement Nurse Contact for support and advice
Monday – Friday 08.30 – 16.30
Bereavement Care Helpline A dedicated contact for those important to the patient
Monday – Friday 08.30 – 16.30
Ext. 85287 or 01254 725287 Answerphone available out of hours
Spiritual Care Team Contact to provide emotional, religious and spiritual support to patients and those important to them
Available 7 Days 08.30 – 16.00
Ext. 83632 or 01254 733632 Out of hours: please contact switchboard and request to page the on-call Chaplain
Guest Beds (Logistics) To request a guest bed for relatives who wish to stay overnight with their loved one
Answerphone available out of hours
Available 24 hours Ext: 83436 or 01254 733436 7 days a week Bleep 417
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Additional Support for you Staff counselling services – 24-hour helpline available – 0800 716 017 Chaplaincy Services – the Spiritual Care services are available to provide support for all staff members. NHS Staff support line – national, confidential support line, available 7:00am – 11:00pm & days a week – 0800 069 6222 (Text FRONTLINE to 85258 for 24/7 support via text). Togetherall – an online safe space supporting your mental health – www.togetherall.com/en-gb Hub of Hope – an online mental health database, showing all support available in your area - www.hubofhope.co.uk
Version 1.0. Author: End of Life and Bereavement Team/Specialist Palliative Care Team. Issue date: January 2022. Review date: January 2024.
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Published by RNS Publications © Tel: 01253 832400 R0
