Document Type. Adult End of Life Care Guidelines. Document Description. Lead Author(s) Palliative Care Education Coordinator

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1 Document Title Adult End of Life Care Guidelines Document Type Service Application Version Name Kathryn Halford Sharon Yates Document Description Guide Lines Trust Wide New Lead Author(s) Job Title Director of Nursing Palliative Care Education Coordinator Change History Version Date Comments 1 July 2015 Links with External Standards End of Life care Strategy Independent review of the Independent review of the Liverpool Care Pathway: More Care Less Pathway Changing Gear: Guidance for managing the last days of life Leadership Alliance for the Care of Dying People Engagement with patients, families, carers and professionals. Leadership Alliance for the Care of Dying People. One chance to get it right: Improving people s experience of care in the last few days and hours of life. Mental Capacity Act Key Dates DATE Ratification Date Review Date (2008) (2013) (2006) (2013) (2014) (2005)

2 Document Title: Please Tick () as appropriate Executive Summary Sheet Adult End of Life Care Guidelines This is a new document within the Trust This is a revised Document within the Trust What is the purpose of this document? Guidelines to support staff in the delivery of End of Life Care What key Issues does this document explore? These guidelines provide: An overview of End of Life Care initiatives Focus specifically on the key components End of Life Care Who is this document aimed at? Medical staff working within Walsall Healthcare NHS Trust Registered nurses working within Walsall Healthcare NHS Trust Clinical Support Workers/Health Care Assistants working within Walsall Healthcare NHS Trust Provides awareness for all staff across Walsall Healthcare NHS Trust What other policies, guidance and directives should this document be read in conjunction with? Local Advance Care Planning Policy Local Syringe Pump Policy Local Do t Attempt Cardiopulmonary Resuscitation Policy End of Life care Strategy (2008) Independent review of the Liverpool Care Pathway: More Care Less Pathway (2013) Changing Gear: Guidance for managing the last days of life (2006) Tissue Donation Policy Organ Donation in Critical Care and ED Policy Mental Capacity Act Policy Breaking Bad News Guidelines How and when will this document be reviewed? This policy will be subject to review every three years or earlier in light of new evidence by lead writer Palliative Care Education Coordinator 2

3 Key individuals involved in developing the document Name Sharon Yates Designation Palliative Care Education Coordinator Circulated to the following for consultation Name/Committee/Group/Designation Heads of Nursing Practice Education Facilitator Care Group Manager/Professional Lead, Palliative Care Clinical Operations Manager, Specialist Palliative & Cancer Care Head of Community Nursing Services Interim Clinical Team Leader Intermediate Care Services Clinical Lead Community Nursing Services Palliative Care Clinical Nurse Specialists Specialist Nurse Organ Donation Palliative & End of Life Strategic Delivery Group members Quality Boards Policies and Procedures Members Version Control Summary Version Date Comments on Changes Author 1 July 2015 New guidelines Sharon Yates 3

4 Document Index 1 Introduction, End of life approaches and 5 enablers 2 Background Gold Standards Framework Advance Care Planning AMBER Care Bundle Rapid Discharge Pathway Home to Die 8 3 Priorities for the care of the dying person Priority Priority Priority Priority Priority Care after death 12 5 Roles & responsibilities Director of Nursing Care Group Manager/Professional Lead 13 Palliative Care 5.3 Palliative Care Education Coordinator Heads of Service Team Leaders/Ward Managers Clinical staff 14 6 Monitoring 14 7 Training 14 8 Definitions 15 9 Legal & professional issues References Related policies 16 Page Appendices 12 Appendix 1 Symptom management algorithms Appendix 2 - End of life mouth care standard 22 operating procedure 14 Appendix 3 - End of life care audit template Appendix 4 - Checklist for the review and 26 approval of procedural document and equality impact assessment tool Page 4

5 1. Introduction Dying is an important and individual event, achieving holistic care which incorporates psychological and spiritual care as well as good symptom control is essential. Over the last few years a major drive has been underway to ensure that all dying patients, their relatives and carers receive a high standard of care at the end of their lives (End of Life Care Strategy 2008). The following guidance has been adapted from the National Council for Palliative Care recommendations outlined within the Changing Gear report: Guidelines for managing the last days of life in adults (2006) and incorporates the five priorities outlined by the Leadership Alliance for the Care of Dying People (2014). 2. Background End of Life care is defined by the National Council for Palliative Care (2006) as: Care that helps all those with advanced, progressive, incurable illness to live as well as possible until they die. It enables the supportive and palliative care needs of both the patient and family to be identified and met throughout the last phase of life and into bereavement. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support. In addition to this definition end of life care should incorporate comfort, dignity, preferred place of care taking into account the persons wishes. It is acknowledged that the term end of life care has many different meanings; it covers the last year of life of a person with a chronic and progressive disease, but can also refer to the last months, the last weeks, the last days or hours of life. In order to deliver high quality End of Life Care the following approaches and enablers have been developed. Key elements of End of Life Care include: planning at all stages of the dying process, rapid discharge models to enable patients who wish to die in the community to be discharged from hospital in good time, and electronic co-ordination systems which enable clinicians to access and contribute to the patients record online at any time and from any setting. Diagram 1 illustrates how these approaches fit across the end of Life and dying phase. 5

6 Diagram 1: End of Life Care Approaches & Enablers across timescale Approaches Enablers GOLD STANDARDS FRAMEWORK END OF LIFE CARE PLANNING (ADVANCE CARE PLANNING & PREFERRED PRIORITIES OF CARE) ELECTRONIC PALLIATIVE CARE CO-ORDINATION SYSTEMS & RECORDS AMBER CARE BUNDLE RAPID DISCHARGE MODELS INDIVIDUALISED END OF LIFE CARE PLAN THE END OF LIFE THE DYING PHASE At risk of dying in 6-12 months but may live for years MONTHS 2-9 months SHORT WEEKS 1-8 weeks LAST DAYS 2-14 days LAST HOURS 0 48 hours DISEASE (S) RELENTLESS Progression is less reversible CHANGE UNDERWAY Benefit of treatment less evident harms of treatment less tolerable RECOVERY LESS LIKELY The risk of death is rising DYING BEGINS Deterioration is weekly/daily ACTIVELY DYING The body is shutting down, the person is letting go (More Care, Less Pathway: A review of the Liverpool Care Pathway 2013) Within Walsall Healthcare NHS Trust following approaches/ enablers are in place: Gold Standards Framework, Advance Care Planning, Amber Care bundle, End of Life Care 6

7 2.1 Gold Standards Framework The Gold Standards Framework (GSF) is a systematic approach to improving the quality and organisation of care for all people nearing the end of life leading to better patient outcomes in line with their needs and preferences. The key benefits include: Improved delivery of high quality patient care aligned to patient choices More dying in preferred place Improved cost effectiveness by reducing hospital admissions Improved identification, coordination and earlier planning of care More patients with advance care planning discussions Workload teams working smarter, making life easier and more satisfying Increased confidence and team working with evidence of progress made (National Gold Standards Framework Centre 2012) 2.2 Advance Care Planning Advance care planning is defined as a voluntary process of discussion about future care between an individual and their care providers, irrespective of discipline. If the individual wishes, their family and friends can be included. It is recommended, with the individual s agreement, that this is documented, regularly reviewed, and communicated to persons involved in their care (NHS End of Life Care Programme 2008) Advance care planning can help to: Resolve difficult end of life issues Relieve carers and relatives from unwanted responsibilities regarding treatment decisions Respect the principle of patient autonomy Support individuals with capacity to anticipate future decisions should they lack capacity. 2.3 The AMBER care bundle The AMBER care bundle is a simple approach used in hospitals when clinicians are uncertain whether a patient may recover and are concerned that they may only have a few months left to live. It encourages staff, patients and families to continue with treatment in the hope of a recovery; while talking openly about people's wishes and putting plans in place should the worst happen. It consists of four elements: talking to the person and their family to let them know that the healthcare team has concerns about their condition, and to establish their preferences and wishes deciding together how the person will be cared for should their condition get worse documenting a medical plan Agreeing these plans with all of the clinical team looking after the person. The person s condition is then monitored closely and followed up on daily basis to record any changes and address any concerns that they or their family may have. The AMBER care bundle contributes to people being treated with dignity and respect and enables them to receive consistent information from their healthcare team. It helps people and their carers to be fully involved in making decisions and knowing what is happening with their care. 7

8 By having conversations about preferences and wishes and ensuring that everyone involved is aware of care plans, people are more likely to have their needs met. (Guy's and St Thomas' NHS Foundation Trust 2013) 2.4 Rapid Discharge Pathway Home to Die The aim of the rapid discharge pathway for patients at end of life is to facilitate a safe, smooth and seamless transition of care from hospital to community for patients who are in the end of life phase who choose to be cared for in their preferred place of care for their last hours and days of life. 3. Priorities for the Care of the Dying Person The five priorities for end of life care make the dying person themselves the focus of care in the last few days and hours of life and exemplify the high level outcomes that must be delivered for every dying person. The way in which the priorities for care are achieved will vary, to reflect the needs and preferences of the dying person and the setting in which they are being cared for (Leadership Alliance for the Care of Dying people 2014). 3.1 Priority 1 The possibility that a person may die within the next few days or hours is recognised and communicated clearly, decisions made and actions taken in accordance with the person s needs and wishes, and these are regularly reviewed and decisions revised accordingly. It is acknowledged that it can be difficult to predict when death will occur; low and deteriorating performance status can be a predictor of short survival. Studies have found that dying patients will manifest some or all of the following: Profound weakness, normally bed bound, requiring assistance with all care Gaunt physical appearance Drowsiness or reduced cognition Diminished intake of food and fluids Difficulty swallowing medications With cancer patients these signs usually develop over several weeks, in some non-malignant diseases such as heart failure and chronic respiratory disease patients experience a less predictable illness trajectory. They are likely to experience episodes of acute deterioration on a background of slower decline. It can be more difficult to predict the course of the disease for these patients. Please note that patients should be assessed on an individual basis and that reversible causes of deterioration should be excluded. When a person s condition deteriorates unexpectedly and it s thought they may die soon i.e. within a few hours or a very few days, they must be assessed by a doctor who is competent to judge whether the change is potentially reversible or the person is likely to die. If the doctor judges that the change in condition is potentially reversible, prompt action must be taken to attempt this, provided this is in accordance with the person s wishes or in their best interests if it is established that they lack capacity to make the decision about treatment at that time. Identifying end of life as mentioned can be difficult, it is recommended that a collaborative approach to diagnosing dying is adopted, this collaborative approach must include the named Consultant or General Practitioner and a registered nurse as well as the wider team. In order for this team approach to be successful there must be clear, open communication and documentation regarding the patient s plan of care, this plan of care should be clearly documented within the medical notes, nursing assessment or single assessment folder. 8

9 The condition of patients who are reaching the last stages of life can change very quickly. They require regular, frequent and on-going assessment of their needs. It is a recommended minimum standard that Community patients are reviewed by a doctor/nurse once during a 24 hour period. Within the Acute Trust it is acknowledged that patient care will be reviewed by a doctor/nurse as frequently as required as a minimum this should be four hourly. 3.2 Priority 2 Sensitive communication takes place between staff and the person who is dying, and those identified as important to them. The starting point of communication between professionals and the family and carers of the person who is approaching the last days of life must be that all parties wish to act in the person s best interests/overall benefit. Differences in opinion about how this is achieved should be discussed openly and alternatives, including a second opinion, actively sought if there is a continuing difference of opinion or if additional reassurance would be helpful (Leadership Alliance for the Care of Dying People 2013). Open and honest communication between staff and the person who is dying and those identified as important to them, including carers, is critically important to good care. Clear, understandable and plain language must be used verbally and in all other forms of communication with the dying person and those important to them. If the dying person needs additional support to understand information, communicate their wishes or make decisions these needs must be met. Communication must be regular and pro-active, i.e. staff must actively seek to communicate, not simply wait for the person or those important to them to ask questions. It must be two way communication and staff must listen to the views of the person and those important to them. It is important that communication is sensitive, respectful in pace and tone and take account of what the dying person and those important to them want and feel able to discuss at any particular point in time (Leadership Alliance for the Care of Dying People 2014). Many dying patients will be too ill to participate in decisions about treatment and care. The mental capacity Act (2005) provides a framework to protect vulnerable patients who are unable to make their own decisions. It enables patients to plan ahead for a time when they may lose capacity. Patients are able to appoint someone as a lasting power of attorney to make decisions about their treatment and care on their behalf at the time when they lose capacity (MCA 2005). For further guidance on the mental capacity act please refer to local policy. Sensitive discussions should take place with the patient (relative/friend) regarding the change in their condition which indicates they are approaching death. This communication should be ongoing relatives should be kept up-to-date with everything that is happening. The content and outcome of discussions with individuals and their family and carers should be clearly documented. This information should be easily accessible and understood by other professionals within and beyond the immediate team involved in caring for this person. This includes conversations that have taken place about prognosis, treatment goals and care plans at each point in time, and particular concerns that the person and/or family and carers have expressed (Leadership Alliance for the Care of Dying People 2013). 9

10 3.3 Priority 3 The dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants. Individuals vary in the context to which they wish to be involved in decisions about their own treatment, though most would want to make or influence decisions about the care they receive, and the way this is delivered. This includes day to day decisions about food, drink and personal care, as well as clinical and treatment decisions. Individuals also vary in the extent to which they wish their families and those important to them to be involved in decision making. Sensitive communication is needed to ascertain the wishes of the dying person and those important to them, they must be informed of the senior doctor who is responsible for their treatment and care whether in hospital or in the community and the nurse leading their care (Leadership Alliance for the Care of Dying People 2014). Where it is established that the person lacks capacity to make a particular decision, the decision made or the action taken on their behalf must be in their best interests and they should still be involved as far as possible in that decision. Advance care planning and an understanding of the patient s wishes are essential to their care; it is recommended that advance care planning where possible is completed as early on in the patient s journey, as this will help to guide care in the future when the person lacks capacity to make decisions for themselves. Professionals must ensure they respect valid and applicable advance decisions and familiarise themselves with the patient s wishes regarding their future care. 3.4 Priority 4 The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible. Families and those important to the dying person, including carers have their own needs which they and others can overlook at this time of distress. They often feel tired, both physically and emotionally, and may be anxious and fearful, especially if they are the dying persons main care giver at home. Even those who may appear to be coping well appreciate an acknowledgement that the imminent death of somebody they love is hard and that they have a role in ensuring that their loved one receives a good standard of care as they near the end of life. Where they have particular needs for support or information, these must be met as far as possible. Although it is not always possible to meet the needs or wishes of all family members, listening and acknowledging these can help. If a person who is dying lacks capacity to make a decision, the decision-making process should be explained to those people who are supporting the person and they should be involved as much as possible (Leadership Alliance for the Care of Dying People 2014). 3.5 Priority 5 An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, coordinated and delivered with compassion. A plan of care and treatment must be developed to meet the dying persons own needs and wishes in relation to how their care should be managed and any treatment preferences they may want to express. This plan should include attention to symptom control, and the person s physical, emotional, psychological, social, spiritual, cultural and religious needs. The person must be supported to eat and drink as long as they wish to do so and their comfort and dignity prioritised. 10

11 There must be prompt referral to, and input from, Specialist Palliative Care for any patient and situation that requires this, referral to the Specialist Palliative Care Multidisciplinary meetings can also be made if required. This plan of care must be documented so that consistent information about the person s needs and wishes is shared with those involved in the persons care and available at the time this information is needed (Leadership Alliance for the Care of Dying People 2014). The Walsall Healthcare NHS Trust individualised end of life care bundle, care plan and patient/carer leaflet should be utilised Reviewing drugs being taken The aim of all treatments at the end of life is to relieve any symptoms which are distressing for the patient and all therapies should be tailored to the needs of the individual patient. Many medications which had been regarded as essential until this stage of the patient s illness can now be reviewed and non-essential medication discontinued. Stopping treatments requires discussion with the patient and family. Some drugs require special consideration before discontinuing them as they can play a significant part in achieving symptom control. At this time most of the symptoms a patient is likely to experience can be controlled by subcutaneous injections of medication or via a syringe pump. As a general rule the drugs needed in the final days of life include: Analgesics to relieve pain, breathlessness Anxiolytics/sedatives to relieve distress, breathlessness Anti-secretories to relieve respiratory tract secretions Anti-emetics to relieve nausea and vomiting It is recommended that the above drugs are prescribed as subcutaneous bolus injections and/or via a syringe pump over 24 hours if required; please refer to the symptom management flow charts appendix 1 (please note that symptom control suggestions contained in these algorithms are not applicable to all patients at the end of life). Further symptom management guidance can be obtained from the Specialist Palliative Care Team and the West Midlands Palliative Care Guidelines (2012) Nutrition and Hydration The dying person should be supported to eat and drink as long as he/she is able, wishes to do so, and is not at risk of harm, choking or aspiration. If he/she is unable to swallow, decisions about the use of clinically assisted hydration and nutrition should be taken in the person s best interests/overall benefit, in consultation with any known prior wishes, and in consultation with the person s family and carers and other members of the team (Leadership Alliance for the Care of Dying People 2013). Hydration and nutritional management must be reflected in the person s individualised plan of care. Complex discussions in relation to feeding and hydration can be discussed at the Walsall Healthcare NHS Trust nutritional multidisciplinary team meeting Mouth care In the final days of life the mouth can become dry and sore as a result of mouth breathing, limited oral intake and as a side effect of medication. The symptoms of thirst and dry mouth are often relieved by good mouth care; the mouth can be kept moist and clean by the use of foam stick applicators and water. Please see the standard operating procedure for end of life mouth care - appendix Do not attempt cardio-pulmonary resuscitation Cardio-pulmonary resuscitation (CPR) could be attempted on any individual in whom cardiac or respiratory function ceases. When a patient is in the final stages of an incurable illness and death is expected within a few days, CPR is very unlikely to be clinically successful. In these 11

12 circumstances most patients want a natural death without unnecessary interventions that most consider to be undignified (RCN, Resuscitation Council and BMA 2007). As part of end of life care planning clinicians should utilise appropriate evidence based multidisciplinary care for the last days of life; clinicians need to consider and document the patient s resuscitation status. Earlier discussions with patients about their general care for example as part of advance care planning may have addressed this issue. Further information can be found within the local Do t Attempt Cardiopulmonary Resuscitation Policy Organ and tissue donation Approaching the subject of organ and tissue donation should be normal practice. It is important to remember that donation is a positive act of giving in an otherwise tragic situation and that the subject should not be taboo but a continuation of care and respecting the patient s wishes. In relation to organ/tissue donation staff should: Check the Organ Donor Register, particularly in incidences where the patient is unable to answer for themselves, this can be done by telephoning the NHS Blood and Transplant Duty Office on Three points of identification are required: i.e. full name (ensure correct spellings), date of birth, postcode. Before withdrawal of treatment and if a patient is mechanically ventilated then the patient should be referred to the Specialist Nurse - Organ Donation (pager ), to assess their potential for organ donation and discuss this option with the patients relatives/carers. Following death, if a patient is not mechanically ventilated the patient should be referred to the National Referral Centre (pager ) to assess their potential for tissue donation and discuss this option with patients relatives/carers Spiritual and religious needs It is essential that the spiritual and religious needs of the patient, their families and carers are fully assessed as early as possible. These should be kept under regular review to take account of changing needs and priorities. The assessment should identify: the individual s usual sources of strength and hope, and whether they need additional support; their need to explore their feelings, such as hopes and fears, and how they might look for meaning and understanding of the situation; any particular religious beliefs and whether they would value prayer and other forms of ritual; ways of helping them make peace with themselves and others; whether they wish to make funeral or other practical arrangements. Where the issues identified cannot be met by the immediate care team, referrals should be made to the relevant professional, such as spiritual leader or chaplain, counsellor, psychologist or complimentary therapist. 4. Care after death Care after death should be performed, his/her body must be cared for in a way that is respectful of the deceased person and the process of verifying and certifying the death carried out in a way that is supportive of the person s family and mindful of their recent bereavement, for further information on the verification of an adult death please refer to local policy. Cultural and religious beliefs 12

13 should be taken into account. Family/carers should sensitively be offered bereavement advice and support, the Walsall Healthcare NHS Trust bereavement leaflets and what to do in the event of a death in England and Wales booklet should be provided. Diagram 2 outlines best practice in the last days/hours of life BEST PRACTICE IN THE LAST DAYS/HOURS OF LIFE Clear identification that the person is dying (team approach involving the lead clinician for the patient). Clear open communication regarding prognosis and treatment plans. The insights of the patient, family and carers into the patient s condition are identified. Advance care plan reviewed and patient wishes regarding care identified. A plan of care is explained and discussed with the patient, family and carer. Regular reassessments/reviews must be undertaken by medical and nursing teams (4 hourly in hospital / daily within the community). Current medications are assessed and non-essentials discontinued. Decisions are taken to discontinue inappropriate interventions, including blood tests, intravenous fluids and observation of vital signs. As required subcutaneous medication is prescribed to manage pain, agitation, nausea and vomiting, respiratory tract secretions and breathlessness. Patient s resuscitation status reviewed. Organ and tissue donation discussed with the patient, family and carers. The ability of the patient, family and carers to communicate in English assessed. Religious, cultural and spiritual needs of the patient, family and carers are assessed. Dignified care after death performed. Sensitive bereavement advice and support offered. 5. Roles and Responsibilities 5.1 Director of Nursing It is the responsibility of the Director of Nursing to: - Ensure that ward Managers / Team Leaders release staff to access training. Escalate and report issues around the Care of the Dying to board level. 5.2 Care Group Manager/Professional Lead, Palliative Care It is the responsibility of the Care Group Manager/Professional Lead, Palliative Care to:- Ensure the implementation of the Care of the Dying guidance across Walsall Health Care NHS Trust Identify and guide best practice within Palliative and End of Life Care 13

14 5.3 Palliative Care Education Coordinator It is the responsibility of the Palliative Care Education Coordinator to: - Facilitate guidance development and supporting procedures. To provide training on end of life care to support the guidance. 5.4 Heads of Service It is the responsibility of Heads of Service to:- Ensure that all their clinical areas have access to the end of life guidelines. Ensure that all employees are released to attend training on end of life care, and that their attendance is recorded on either ESR/OLM. 5.5 Team Leaders/Ward Managers It is the responsibility of Clinical Team Leaders / Ward Managers to:- Ensure that all employees identified on the teams training needs analysis attend training on end of life care. 5.6 Clinical Staff All healthcare professionals must exercise their own professional judgement when using these guidelines. Clinical Staff should: Practice within their scope of practice. Read and adhere to related Trust policies and procedures Make the care of people their first concern, treating them as individuals and respecting their dignity (Nursing and Midwifery Council 2008). Identify any areas for skill update or training requirements and notify their line manager of these requirements. 6. Monitoring Monitoring Process Who Standards Monitored When How Presented to Monitored by Completion/Exception reported to Requirements End of life practitioner acute setting Palliative Care Named Nurses Community. Patient care will be audited against set end of life care audit standards audit template can be viewed on appendix 3. This will be completed on a monthly basis. This audit of end of life care will be completed retrospectively. X 10 sets of patient notes for the acute and community setting will be audited against set criteria. Audit data will be presented to the Palliative & End of Life Strategic Delivery Group members Relevant Quality Team meeting End of Life Care Strategic Delivery Group Meeting/Quality Team meeting/ Director of Nursing 7. Training All non-medical clinical staff working within Walsall Healthcare NHS Trust will receive an education session highlighting the core priorities for Palliative and End of Life Care as part of their clinical 14

15 update session. A variety of in-house education programmes are available for staff to access, service area clinical leads will be responsible for identifying which courses are appropriate for staff to attend. The education sessions available include: Palliative Care Foundation Programme which covers: Symptom control Comfort measures Basic communication skills McKinley Syringe Pump Training setting up the syringe pump in practice Syringe pump session 2 Understanding the medication used in Palliative and End of Life Care Advance Care Planning and Communication Skills Training Principles of End of Life Care (for clinical support workers/healthcare Assistants) Cluster/practice based General Practitioner education sessions Grand round education sessions FY1/FY2 education sessions 8. Definitions MDT = Multi-Disciplinary Team GP = General Practitioner SAP = Single Assessment Process Syringe Pump = these pumps are the preferred choice for lower volume and low flow rate infusions. Syringe pumps drive the plunger of a syringe forward at a controlled rate to deliver the substance to the patient. The McKinley T34 syringe pump is a small, portable, battery driven pump, which continuously administers medication via a butterfly infusion set into a subcutaneous site over a given length of time. 9. Legal & Professional Issues Once it has been recognised that a patient is in or is approaching the dying phase of their illness, a multi-disciplinary discussion should take place and agreement reached that it is appropriate to commence end of life care. The recognition and diagnosis of dying is always complex irrespective of previous diagnosis or history. Changes in care at this complex, uncertain time are made in the best interest of the patient and relative/carer for a specific moment in time. This needs to be reviewed regularly and discussed within the MDT caring for the patient. If following assessment the patient s condition has improved and it is felt they are no longer in the dying phase of their illness then end of life care plans should be discontinued. 10. References British Medical Association, the Resuscitation Council (UK) & Royal College of Nursing (2007) Decisions relating to cardiopulmonary Resuscitation. Guy s & St Thomas NHS Foundation Trust (2013) (last accessed 2 nd vember 2013). Leadership Alliance for the Care of Dying People (2013) Engagement with patients, families, carers and professionals. Leadership Alliance for the Care of Dying People (2014) One chance to get it right: improving people s experience of care in the last few days and hours of life. 15

16 Mental Capacity Act (2005) (last accessed 2nd vember 2013). National Gold Standards Framework Centre (2012) (last accessed 2 nd vember 2013). Neuberger, J et al (2013) Independent review of the Liverpool Care Pathway. More care less pathway: A review of the Liverpool Care Pathway. Speakman, J (2012) West Midlands Palliative Care Physicians: Palliative care guidelines for the use of drugs in symptom control. University Hospital Birmingham: Birmingham. The National Council for Palliative Care (2006) (last accessed 2 nd vember 2013). The National Council for Palliative Care (2006) Changing Gear: guidelines for managing the last days of life in adults. Hobs the printers: Hampshire. The NHS End of Life Care Programme (2008) Advance Care Planning: A guide for Health and Social Care Staff. Department of Health: London. 11. Related Policies McKinley Syringe Pump Policy Adult Death Verification Policy Care after Death Policy Adult Do t Attempt Cardiopulmonary Resuscitation Policy Tissue Donation Policy Organ Donation in Critical Care and ED Policy Advance Care Planning Policy Mental Capacity Act Policy Breaking Bad News Guidelines 16

17 12. Appendix 1 - Symptom management algorithms Guidelines for the Management of PAIN in the Dying Phase Has the patient been taking Morphine for pain? Guidelines for the Management of PAIN in ADVANCED KIDNEY DISEASE te: If the patient is already on opioids contact Specialist Palliative Care Team for advice. 1. If on oral Morphine and unable to swallow prescribe Morphine injection by S/C infusion via syringe pump Calculate the amount (mg) of oral Morphine normally taken in 24 hours Divide this total by 2 to calculate the equivalent of S/C Morphine for 24 hours (eg. patient taking 60mg oral Morphine BD = 120mg over 24hrs = 60mg S/C Morphine /24 hours via syringe pump) 2. Prescribe PRN S/C Morphine for break through pain Calculate this dose by dividing the total 24 hour dose of Morphine by 6 (eg. 60mg 6 = 10mg PRN) Titrate the dose of Morphine in the syringe pump: Add the total dose of S/C Morphine given PRN in the previous 24 hours to the amount in the syringe pump Is the patient taking any other strong opioid? Contact Specialist Palliative Care Team for further advice. Is the patient currently in pain? Assess for cause, consider: Full bladder or rectum Pathological fracture Administer Morphine S/C 2.5mg Prescribe PRN Morphine S/C 2.5-5mg If two or more doses required commence a syringe pump with Morphine: Usual starting dose Morphine S/C 5-10mg/24 hours) Continue Morphine S/C PRN The dose in pump may need titrating up against symptom control Administer: Oxycodone 1-2mg S/C Or Morphine mg S/C Prescribe: Oxycodone 1-2mg S/C PRN Or Morphine mg S/C PRN Is the patient in pain? Prescribe: Oxycodone 1-2mg S/C PRN Or Morphine mg S/C PRN If two or more doses are required over 24 hours commence a syringe pump with Alfentanil. Alfentanil is less likely than other opioids to cause problems in renal failure. It does not have active metabolites and has a short acting effect, however because of this short acting effect it is not suitable for PRN doses. Usual starting dose of Alfentanil in a syringe pump 0.5-1mg over 24 hours (Equivalent to mg of Morphine injection and 4-8mg Oxycodone injection). Continue with PRN Oxycodone S/C or PRN Morphine S/C in reduced doses (as advised in box above) Be aware the effect may last longer than in patients with normal renal function Alfentanil 0.125mg = Morphine injection 2mg = Oxycodone injection 1mg Dose in pump may need titrating up against symptom control Symptoms persisting Symptoms persisting Symptoms persisting Contact Specialist Palliative Care Team for further advice. Contact Specialist Palliative Care Team for further advice.

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21 Guidelines for the Management of BREATHLESSNESS in the Dying Phase Is the patient breathless and distressed? Guidelines for the Management of BREATHLESSNESS in ADVANCED KIDNEY DISEASE Is the patient breathless and distressed? Consider non-pharmacological interventions: Position Fan therapy Manage respiratory tract secretions Is the patient already taking oral opioids? In anticipation of future breathlessness prescribe: Morphine S/C 2.5-5mg PRN Or rmal PRN dose of S/C Morphine if using it regularly And Midazolam S/C 2.5-5mg PRN for symptoms of distress/anxiety caused by breathlessness Contact Specialist Palliative Care Team for advice. Consider non-pharmacological interventions: Position Fan therapy Manage respiratory tract secretions Is the patient already taking oral opioids? Prescribe: Oxycodone 1-2mg S/C PRN Or Morphine mg S/C PRN And Midazolam mg S/C PRN for distress/anxiety symptoms associated with breathlessness Contact Specialist Palliative Care Team for advice. Symptoms persisting Administer Morphine S/C 2.5-5mg Prescribe: Morphine S/C 2.5-5mg PRN Midazolam S/C 2.5-5mg PRN for symptoms of distress/anxiety caused by breathlessness If the patient has required two or more doses in 24 hours commence a syringe pump: Usual starting dose of Morphine S/C in syringe pump 5-10mg/24 hours Add Midazolam if breathlessness is associated with distress/anxiety Continue PRN medication Dose in pump may need titrating up against symptom control Symptoms persisting Contact Specialist Palliative Care Team for further advice. NB. Depending on the patient s individual needs the doses for pain and dyspnoea may be different and the medication sheet needs to be specific so that the correct dose and frequency is prescribed and given appropriately. Administer: Oxycodone S/C 1-2mg or Morphine S/C mg Prescribe: Oxycodone S/C 1-2mg PRN or Morphine S/C mg PRN And Midazolam S/C mg PRN for distress/anxiety associated with breathlessness If two or more doses are required over 24 hours commence a syringe pump with Alfentanil. Alfentanil is less likely than other opioids to cause problems in renal failure. It does not have active metabolites and has a short acting effect, however because of this short acting effect it is not suitable for PRN doses. Usual starting dose of Alfentanil in a syringe pump 0.5-1mg over 24 hours (Equivalent to mg of Morphine injection and 4-8mg Oxycodone injection). Alfentanil 0.125mg = Morphine injection 2mg = Oxycodone injection 1mg Consider adding midazolam for distress/anxiety associated with breathlessness Continue with PRN Oxycodone S/C or PRN Morphine S/C in reduced doses (as advised in box above). Be aware the effect may last longer than in patients with normal renal function. Dose in pump may need titrating up against symptom control Symptoms persisting Contact Specialist Palliative Care Team for further advice. 21

22 13. Appendix 2 End of Life Mouth Care Standard Operating Procedure Standard Operating Procedure (SOP): End of Life Mouth Care Procedure Written By: Sharon Yates Palliative Care Education Coordinator Procedure Approved for Use By: Procedure : Date of review: October 2016 Document replaced: Next review date: October 2018 Version: 2.0 Page 1 of 3 This standard operating procedure is to be used in conjunction with: The Royal Marsden Hospital Manual of Clinical Procedures 7 th Edition (2008) section relating to mouth care Walsall Healthcare NHS Trust standard operating procedure for mouth care (2011) NHS Walsall mouth care formulary Introduction Patients in the final stages of life may have a diminished swallow reflex and be unable to take liquids (Sykes 2004). Even though a patient may have reduced consciousness they will still be aware of discomfort, including symptoms such as xerostomia. The mouth is vital to the maintenance of oral communication and breathing and any problems with the mouth will result in unnecessary additional distress and suffering especially if a dry mouth prevents the patient from being able to speak to his/her family and friends. The principles of mouth care for the dying patient are essentially the same as for any other patient and are aimed at keeping the mouth moist and clean. The major difference is that the dying patient is unlikely to be able, or want to take active measures to remedy the situation for his or herself. This means that it is essential for mouth care to be provided by a nurse/carer (Ellershaw & Wilkinson 2003). There is little evidence available regarding how frequent oral care should be performed. Traditionally mouth care has been performed 4 hourly by nurses (Sheey & Shaw 2012). On the basis of limited evidence it is advised that oral care is administered every 2 hours or as required. This is particularly the case in the presence of dehydrating stressor such as mouth breathing, oxygen or medications that can cause a dry mouth. Many patients at the end of life fall into this category. If the patient is able to perform/assist in the delivery of mouth care then refer to the mouth care standard operating procedure, the following procedure has been designed to assist staff in the delivery of mouth to the patient who is unable to perform mouth care or is semi/unconscious. 1. Explain and discuss the procedure with the patient/family/carer. 2. Family/friends of the dying patient may be concerned about the condition of the person s mouth, if they wish they can be involved in performing oral hygiene. However it is important that nurses explain the procedure fully to family/friends who wish to perform mouth care. 3. Wash hands with bactericidal soap and water and dry with a paper towel. Put on disposable gloves. 4. Prepare solutions as required. 5. Remove dentures if in place, using a tissue or piece of gauze, grasp the upper plate at the front teeth with the thumb and second finger and move the denture up and down slightly. Lower the upper plate, remove and place in denture pot.

23 6. Lift the lower plate, turning it so that one side is lower than the other, remove and place in denture pot. 7. Remove a partial denture by exerting equal pressure on the border of each side of the denture. 8. Carry out oral assessment using a reliable oral assessment tool. 9. Inspect the patient s mouth, including teeth, with the aid of a torch, spatula and gauze, paying special attention to the lips, buccal mucosa, lateral and ventral surfaces of the tongue, floor of the mouth and the soft palate. If the patient is able to respond check if they have any of the following: taste changes, change in saliva production, oral discomfort or difficulty swallowing. 10. To clean the mouth use a foam stick with either 0.9% sodium chloride or diluted chlorhexidine, using a rotating action rub on tooth surfaces morning and night to prevent plaque. 11. To moisten the mucosa use foam sticks and water. This should be performed at least 2 hourly or more frequently if required. 12. Each swab should only be used once and then disposed of, please refer to the medical device alert (2008) regarding the use of foam sticks. 13. Avoid iced water as this can be a shock for semiconscious patient especially if they have sensitive teeth. 14. Apply artificial saliva to the tongue if appropriate and suitable lubricant (Aquagel/KY Jelly) to dry lips. 15. Dentures should be removed at night brushed and kept in cold water. 16. If oral candida species are present dentures should be removed at night, brushed and soaked in a diluted antifungal solution for at least 4-6 hours. 17. It is important to highlight that caution should be taken when performing mouth care on a patient who has a history of seizures or is agitated / distressed. Specific reference point MHRA Medical device alerts reference: MDA/2008/017 Foam heads of oral swabs may detach from the stick during use. This may present a choking hazard for patients Check the foam head is firmly attached to the stick before use in line with infection control procedures Do not soak the oral swab in liquid before use as this may effect the strength of the head attachment References Dougherty, L & Lister, S (2008) The Royal Marsden Hospital Manual of Clinical Nursing Procedures. Oxford: Wiley Blackwell. Ellershaw, J & Wilkinson, S (2003) Care of the Dying a Pathway to Excellence. Oxford: Oxford University Press. Sheey, L & Shaw, J (2012) Xerostomia in Terminally Ill and Dying Patients; Best Practice. London: End of Life Journal: London. 23

24 14. End of life care audit (Based on the five key priorities for end of life care) Demographics Patient initials: Age: Primary Disease group: neoplasm; circulatory; respiratory; genitourinary; digestive; other. (Please circle; refer to examples over the page) Secondary Disease group (if applicable): Dementia: Ethnicity: GP/Consultant: Date identified as dying: Date of death: Detail of community nursing involved: PCNN; Community Palliative Care Clinical Nurse Specialist; Community Matron (please circle) Place of death: Home; Nursing /Residential Home (Do not include St. Giles Walsall Hospice) Recognise 1: Evidence of an MDT discussion/ recognition of the possibility that the patient may die / 2: Evidence of preferred place of care documented? 3: Was preferred place of care met? If not, why not? 4: Is there a clear management plan in place for the patient who is dying? Communicate 5: Evidence of a discussion with the patient/carer/nominated person regarding the possibility that the patient may die / 6: Is a DNAR in place? 7: Has a DNAR been discussed with patient? 8: Has a DNAR been discussed with nominated person? 24

25 Involve 9: Was there evidence to suggest the patient was able to make decisions in relation to EOL plan? / If not please circle reason: 1. Patient displayed longstanding lack of mental capacity eg: Dementia 2. Patient displayed acute lack of mental capacity eg: Delirium 3. Patient semi- conscious or unconscious 4. Patient asked not to be involved in decision 5. reason recorded 6. Other 10: Was a formal capacity assessment completed? Eg: DOLS, best interest, mental capacity assessment. 11: Evidence of on-going communication with nominated person? Support 12: Has the patients religious/spiritual needs been documented? / 13: Has the religious/spiritual needs of the nominated person been documented? 14: Evidence that patient had opportunity to discuss concerns? If not please circle reason: 1. Patient displayed longstanding lack of mental capacity eg: Dementia 2. Patient displayed acute lack of mental capacity eg: Delirium 3. Patient semi- conscious or unconscious 4. Patient asked not to be involved in decision 5. reason recorded 6. Other 15: Evidence that the nominated person had opportunity to discuss concerns/issues? Plan and do 16: Was current medication assessed? n essentials discontinued? / 17: Was anticipatory medication prescribed 18: Is there evidence of MDT discussion around artificial feeding/hydration? 19: Is there evidence of on-going review? 25

26 Care after death / 14: Evidence of discussion with family/nominated person regarding what to do after next? 15: Bereavement information given? Comments/themes: Signature/Print: Primary Disease groups: Examples of ICD 10 codes: Neoplasm : any cancer diagnosis n cancer diagnosis: Circulatory: Heart Failure; heart diseases; pulmonary heart disease; CVA Respiratory: COPD; pneumonia; respiratory infections Digestive: diseases of liver, gallbladder, peritoneum, colitis etc Genitourinary: Renal failure; disorders of kidney, ureter; female pelvic organs Other: septicaemia 26

27 15. Appendix 4 - Checklist for the Review and Approval of Procedural Document To be completed and attached to any procedural document that requires ratification Title of document being reviewed: / Comments 1. Title Is the title clear and unambiguous? It should not start with the word policy. Is it clear whether the document is a guideline, policy, protocol or standard? 2. Rationale Are reasons for development of the document stated? This should be in the purpose section. 3. Development Process Is the method described in brief? This should be in the introduction or purpose. Are people involved in the development identified? Do you feel a reasonable attempt has been made to ensure relevant expertise has been used? Is there evidence of consultation with stakeholders and users? 4. Content Is the objective of the document clear? Is the target population clear and unambiguous? Are the intended outcomes described? Are the statements clear and unambiguous? 5. Evidence Base Is the type of evidence to support the document identified explicitly? Are key references cited? Are the references cited in full? Are supporting documents referenced? 6. Approval Does the document identify which committee/group will approve it? If appropriate have the joint Human Resources/staff side committee (or equivalent) approved the document? N/A 7. Dissemination and Implementation Is there an outline/plan to identify how this 27