The Care of Adult Patients in the Last Days of Life

STANDARD OPERATING PROCEDURE For The Care of Adult Patients in the Last Days of Life

NAME TITLE DATE Author(s) Jo Beeching Clinical Lead Hospice at Home 19th February & Night Nursing Services 2016 Reviewer (s) David Leeson Clinical Education Lead 1st April 2016

Pat Upsall CHS Clinical & Operational 26th April 2016 Lead IM&T, Data Quality & IG

Authoriser Rachel CHS Directorate Director 8th March 2016 Bilsborough

8th March Effective Date: 2016 March Review Date: 2018

1 Table of Contents 1. Change History

2. Purpose

3. Introduction

4. National Targets and Local Priorities

5. Scope 5.1 Areas outside of scope 5.2 Key related documents

6 Definitions

7 Responsibilities

8 Specific Procedure

9 Forms / Templates to be used

10 Internal & External References 10.1 Internal References 10.2 External References

11 Training / awareness raising

12 Appendices

Appendix 1 - The Care of Adult Patients in the Last Days of Life (a document to support staff)

Appendix 2 - Prompt Sheet for the Care of Patients Who Are Likely to be in the Last Days of Life Appendix 3 Last Days of Life leaflet (in PDF format) Appendix 4 INITIAL SYMPTOM ASSESSMENT (Extract from SystmOne) Appendix 5 ONGOING SYMPTOM ASSESSMENT (Extract from SystmOne)

2 1. CHANGE HISTORY Effective Previous SOP no. Significant Changes Date SOP no. Initial version

2. PURPOSE The principle objectives of this procedure are to:  Ensure that the care of the adult patient in their last days of life is personalised and reflects their individual preference and need.  To ensure the adult patient in their last days of life has attention paid to the assessment and addressing of physical, emotional, psychological, social and spiritual needs  Provide clear requirements for accountability and review of the clinical situation when an adult patient is in their last days of life  To ensure LPT guidance for Caring for adults patients in the last few days of life, the recommendations, authorisations and requirements are day-to-day compulsory practice, to ensure patient centred care for all our patients and those identified as important to the patient in their last days of life  Act as a training tool for new staff or a refresher for existing staff  Form the basis for which an audit tool can be developed

3. INTRODUCTION The ‘Liverpool Care Pathway’ was discontinued in June 2013 and replaced with new documentation developed by LPT in partnership with LOROS, UHL and clinical commissioning groups, which went live 6th October 2014.

The NHS’s Leadership Alliance for the Care of Dying People is very clear that there must be improvement in people’s experience of care in the last days and hours of life and has developed prompts for practice to ensure that all health and care staff are aware of their duties and responsibilities.

3 The five key priorities are: 1. Recognising the possibility that a person may die within the next few days or hours. The patient must have been assessed by a doctor who has considered if the patient’s condition is potentially reversible or they are likely to die in the next few days. In the community hospitals, the ANP will often be the first contact for recognising and assessing this but they will discuss with the geriatrician for ongoing support and advice. 2. Communication must take place with the patient and family/those individuals identified as important to the patient. 3. Involving the patient and family/those identified as important to the patient in decisions about treatment and care. 4. Supporting the needs of the family/those identified as important at this distressing time. 5. Plan and Do – everyone should have an Individualised Care Plan of Care for symptom control, psychological, social and spiritual support. It should also include discussions on food and drink. This should be agreed, co-ordinated and delivered with compassion by all health and care services.

The new guidance for caring for adult patients in the last days of life, the recommendations, authorisations and requirements outlined in the documents that went live 6th October 2015 ensure all the priorities listed above can be met. Unfortunately within CHS the use of these documents has not been applied for all cases that involve caring for adults in the last days of life and service concerns and complaints have been received identifying poorly coordinated care with unfortunate patient and carer outcomes.

This document describes step-by-step the processes to follow, including as a minimum, the documentation to support the decision that a patient is likely to be in the last days of life, and their ongoing care.

4 4. NATIONAL TARGETS AND LOCAL PRIORITIES Priorities of Care for the Dying Person: Duties and Responsibilities of Health and Care Staff, Leadership Alliance for the Care of Dying People June 2014 Ambitions for Palliative and End of Life Care: A national framework for local action 2015 -2020, National Palliative and End of Life Care Partnership 2015 NICE 2015, Better Endings Right care, right place, right time NICE draft scope consultation – Improving supportive and palliative care in adults (update) – 31/12/15 to 29/01/16

5. SCOPE 5.1 Areas outside of scope – Children and young people under 18 years of age 5.2 Key related documents

6. DEFINITIONS LPT Leicester Partnership Trust GP General Practitioner GMC General Medical Council

7. RESPONSIBILTIES All practitioners must comply with their professional organisations Code of Conduct and nurses must follow the NMC guidance on expanding roles. To practice competently, staff must possess the knowledge, skills and abilities required for lawful, safe and effective practice without direct supervision.

Staff must acknowledge the limits of their professional competence and only undertake practice and accept responsibilities for those activities in which they are competent.

Staff have a responsibility to comply with the standard operating procedure.

5 8. SPECIFIC PROCEDURE

 Recognise: o The person whose condition has deteriorated unexpectedly must be assessed by a doctor to judge whether the person’s change in condition is potentially reversible or they are likely to die in the next few hours or days. o If it is clear that reversing the deterioration in a person’s condition is possible prompt action should be taken, if it is accordance with their wishes or best interests and their consent to treatment must be sought including discussion of the benefits, burdens and risks. o If the doctor judges that the person is likely to die soon s/he must clearly and sensitively communicate this to the dying person (if conscious). This must include explaining when and how death might be expected to occur and the basis for that judgement. The same communication must take place with family/those individuals identified as important to the dying person. o Staff must then initiate the Last days of Life documentation, both on SystmOne and patient held. o On SystmOne this is found using the End of Life Care Template and end of life care plans from the clinical tree: see appendices o Patient held documentation is found on e-source, under learning and development, care in the last days of life tab: see appendices 1& 2 o The person whose condition has deteriorated expectedly must be assessed by an appropriately trained and competent clinician who must discuss with a doctor whether the person’s change in condition is potentially reversible or they are likely to die in the next few hours or days. o If the appropriately trained and competent clinician and doctor judge the person is likely to die soon, s/he must clearly and sensitively communicate this to the dying person (if conscious) and their family/individuals identified as important to them. This should include explaining when and how death might be expected to occur and the basis for that judgement, acknowledging and accepting any uncertainties and giving the opportunity for those involved to ask questions. o On SystmOne this is found using the End of Life Care Template and end of life care plans from the clinical tree: see appendices o Patient held documentation is found on e-source, under learning and development, care in the last days of life tab: see appendices 1& 2 o The doctor or appropriately trained and competent clinician must consider whether involvement of a specialist would be helpful if there is uncertainty whether or not the person is dying. o The goals of treatment and care must be discussed and agreed with the dying person and or those individuals who have been identified as important to the dying person. These discussions must be clearly documented using the document ‘Care in Last Days of Life – individual assessment and care plan documentation, and accessible to all those involved in the care of the dying person. o The dying person must be reviewed daily using the ongoing assessment sheets in the document ‘Care in the Last Days of Life – individual assessment and care plan documentation, or sooner if there is an unanticipated change in the person’s condition – to assess whether they are still likely to be dying, by an appropriately trained and competent clinician. o After three ongoing assessments, if the doctor/appropriately trained and competent clinician judge the person is likely to die soon the process should be repeated on both system1 and with hand held documents. o After three ongoing assessments, if the doctor/appropriately trained and competent clinician judge the person is not likely to die soon the document ‘Care in the Last Days of Life-individual assessment and care plan documentation should be discontinued.

6 o All health care professionals and care staff responsible for the person’s care must seek out opportunity to communicate about deterioration or change in the dying person’s condition with those identified as important to that person. Communicate: o Staff must spend time to talk with the dying person and those identified as important to them, listening and responding sensitively to their issues and concerns. o Provide information in simple, appropriate and straight forward language without the use of euphemisms. o Ensure all conversations are in respect of the dying person’s and those identified as important to them expressed wishes. o Establish who the primary contacts are for the dying person and what information is able to be shared and captured clearly in relationships on system1. o The content and outcome of all discussions must be documented using the document ‘Care in the Last Days of Life- individual assessment and care plan documentation. o Difficult conversations should not be avoided and should include prognosis and goals for care plans at each point in time that change is identified. o When the dying person is cared for at home, clear, reliable and consistent information about how to seek urgent help when needed must be given. This should include who to ring, times of contact and key information they should provide that will enable the most appropriate response. o Ensure information is given about what to do when the person dies. o As soon as possible after death of the person, in accordance with family/those identified as important to the deceased, a health care professional should offer to attend the deceased to appropriately care for their body and ensure immediate practical and emotional support for those present and family/those identified as important to the deceased.

 Involve o The dying person and family/those identified as important to them must be given the name of the general practitioner/consultant and nurse responsible who has overall responsibility and is leading their care and explain who will cover in the event of absence or change in care arrangements/care settings. This must be clearly documented and accessible to all those involved in the person’s care using the ‘Care in the Last Days of Life – individual assessment and care plan documentation. o The dying person and family/those identified as important to them should be supported to make informed decisions as much as possible and to the extent they wish. o Before specific intervention or actions informed consent must be sought from the person and family/ those identified as important to them, must be consulted about making best interest decisions and documented clearly using the ‘Care in the Last Days of Life – individual assessment and care plan documentation. o Discussed differences in opinion, about what would be best for the dying person, must be openly and reassurance given, and seeking additional advice/ second opinion where needed.

 Support o The needs of families/those identified as important to the dying person should be assessed at the point of recognition of dying and daily thereafter and clearly documented on the ‘Care in the Last Days of Life- initial and ongoing symptom assessment sheets. o In in-patient units’ families/those identified as important to the dying person must be welcomed, facilities identified and enabled to spend time with the dying person, as they wish. o Family/those identified as important to the dying person must be supported to participate in caring for the person if they wish, taking in to account their observations and judgements. 7 o When death is close, family/those identified as important to the dying person, should be given information and explanation about what to expect and preference for support established and documented using the ‘Care in the Last Days of Life – individual assessment and care plan documentation. o When the person has died, the wellbeing of the bereaved family/those identified as important to the deceased must be considered and support for their immediate needs is available.

 Plan and Do Planning Care o The dying person and family/those identified as important to the dying person must be offered the opportunity to discuss and update their wishes and preferences regarding their end of life care. This must be clearly documented using the ‘Care in the Last Days of Life- individual assessment and care plan documentation. o If the dying person lacks capacity to make particular decisions about future care, then best interest decisions should be made taking in to account the observations and judgments of family and those identified as important to the dying person and documented using the ‘Care in the Last Days of Life – individual assessment and care plan documentation.

Assessment o The physical, emotional, psychological, spiritual, cultural and religious needs of the dying person must be assessed with respect for personal privacy and dignity, initially on recognition of dying and daily thereafter using the document ‘Care in the Last Days of Life – individual assessment and care plan. o If a need is identified a care plan should be formulated and personalised to address that need. These can either be formulated under end of life care plans on the clinical tree using system1 or taken from the ‘Care in the Last Days of Life – individual assessment and care plan documentation.

Food and drink o The dying person must be supported to eat and drink as long as they wish to do and there is no serious risk of harm (for example choking) o If the dying person makes an informed choice to eat and drink, even if they are deemed at risk of aspiration, this must be respected. o If the dying person is unable to swallow, decisions about clinically assisted hydration and nutrition must be line with the GMC 2010 guidance; Treatment and care towards the end of life: good practice in decision-making and relevant clinical guidelines and documented using the ‘Care in the Last Days of Life – individual assessment and care plan documentation.

Symptom Control o All medication, including anticipatory medicines must be available and when need indicates used to target specific symptoms, which must be assessed daily and are listed in the ‘Care of the Last Days of Life –individual assessment and care plan documentation. o Specific symptoms must have an individual care plan formulated with clear rationale for any medication and dose started. All symptoms and treatments must be reviewed at least daily and medication adjusted as needed for effect and documented using the ‘Care in the Last Days of Life – individual assessment and care plan documentation. o The reason for any intervention and likely side effects, including the use of a syringe pump and drowsiness, must be explained to the dying person and family/those identified as important to them and documented using the ‘Care in the Last Days of Life – individual assessment and care plan documentation.

8 o Ensure that all medications and equipment that can improve the dying person’s comfort and dignity are anticipated and obtained as soon as possible. o Clinical Teams must refer to specialist palliative care services, such as Hospice at Home, Clinical Nurse Specialist/MacMillan and LOROS, for advice or assessment when the dying person’s and family/those identified as important to them needs are beyond their competency to provide for, or when initial measures have failed to provide adequate relief within at most 24 hours. Spiritual and religious care o The dying person’s cultural and religious specific requirements must have been established and documented using the ‘Care in the Last Days of Life – individual assessment and care plan documentation. o Chaplaincy, local faith leaders and/or spirit provision information must be available for the dying person and family/those identified as important to them.

Co-ordinating care o All nursing and ancillary staff should provide accurate and timely handover to teams taking over the care of the dying person and clear instruction using the ‘Care in the Last Days of Life – individualised assessment and care plan documentation will highlight the person’s wishes and preference. o If the dying person has to move between care settings, a clear plan must be made and communicated and documented using the ‘Care in the last days of Life –individualised assessment and care plan documentation.

9. FORMS/TEMPLATES TO BE USED – see appendices

10. INTERNAL AND EXTERNAL REFERENCES 10.1 Internal references 10.2 External references

11. TRAINING/AWARENESS RAISING

12. APPENDICES

o Appendix 1: The Care of Adult Patients in the last Days - Document to support o Appendix 2: Prompt Sheet – For the Care of Patients Who Are Likely to be in the Last Days of Life (including an individual assessment and care plan documentation) o Appendix 3: Last Days of Life- Patient Leaflet o Appendix 4: Initial Symptom Assessment (Extract from SystmOne) o Appendix 5: Ongoing Symptom Assessment (Extract from SystmOne)

The Care of Adult Patients in the Last Days of Life (a document to support staff)

9 1. Introduction

1.1 This document aims to make sure that the care of the adult patient in their last days of life is personalised, reflects their individual needs and preferences and that attention is paid to assessing and addressing physical (including symptoms, hydration and nutrition, and skin and mouth care), emotional, psychological, social and spiritual needs of that individual, as well as his/her personal care needs and sense of dignity. It also sets out clear requirements for accountability and review of the clinical situation. This was revised in June 2014 following the issuing of definitive recommendations from the National Leadership Alliance for Care of the Dying.

1.2 The multi-professional team (MDT) should have made a face-to-face assessment and be in agreement that all reversible causes for a current condition have been considered and that the patient is likely to be dying within the next few days.

1.3 This document is to be used in conjunction with the Care Plan for Adults in the Last Days of Life and a prompt sheet which should be inserted into the clinical notes. These documents are available for downloading and printing via a link from SystmOne.

2. Scope

2.1 This document applies to all healthcare professionals employed by LPT, including those on bank, agency and honorary contracts who care for the dying person.

2.2 Responsibility and Accountability

2.2.1 Patients will have a clearly designated ‘senior responsible clinician’ and registered nurse responsible for their care. These staff will be responsible for ensuring that patients and their families/carers are involved in decisions about End of Life care wherever possible, and that decisions are made in a timely way.

2.2.2 Decisions that are needed to maintain the patient’s comfort and safety can, and should, be made by appropriately trained staff ‘on the spot’, including out-of-hours. However, those decisions that can wait for review by a senior responsible clinician, who has gathered the necessary information to inform his/her clinical judgement, should be deferred until the senior responsible clinician or their nominated deputy is available.

2.2.3 In hospital or a hospice, the ‘senior responsible clinician’ is the patient’s named consultant during their rostered hours. Outside of that period, this responsibility is taken on by the senior responsible clinician for that clinical area/ward. The patient’s named consultant has a duty to ensure that adequate information is available to the covering senior responsible clinician to support decision-making.

2.2.4 At home or in a care home, the ‘senior responsible clinician’ is their registered GP. Outside surgery hours, this is delegated to the GP’s Out of Hours (deputising) service. The person’s registered GP has a duty to ensure that the deputising Out of Hours service has been provided with, or has access to, adequate information to support the patient and carers.

10 2.2.5 The dying person and his/her family and carers, should know the name of the registered nurse who is responsible for leading the nursing care of that individual at any one time. This nurse is responsible for communicating effectively with the family, checking their understanding and ensuring that any emerging concerns are addressed.

2.2.6 In hospital, the ward sister or team leader will be given this overall responsibility. On each shift, the name of the nurse responsible for delivering care on each shift will be indentified and communicated to the patient (if this is possible) and their families when present.

2.2.7 The person’s ‘senior responsible clinician’ and any doctor who deputises for him/her, whether in hospital or in the community, as well as any nursing staff who need specific advice or support, have a duty to consult specialists in palliative care when the patient’s complex needs warrant it or if they need advice or support about management.

3. Clinical Guidance

3.1 PART 1: Multi-disciplinary assessment of a patient who is thought to be dying and in their last days of life The principles of the 2005 Mental Capacity Act should be applied throughout. Discussions and information should be tailored to individual’s preferences.

1. Recognition that the patient is dying Recognising that somebody is dying and It should be clearly communicated to the likely to be in the last few days of life patient and their family/carers’ who the can be a difficult decision. This decision ‘senior responsible clinician’ and should be made by a senior responsible registered nurse responsible for their care clinician in conjunction with other are. The names of the people members of the team who have specific communicated should be clearly information to contribute. It should be documented. done in consultation with the patient (where possible) and their families and/or carers (where present or contactable). Documentation of this decision should be clear about:  Who has been involved in the decision  Relevant diagnoses and specific clinical factors relevant to the decision  That reversible causes have been considered and acted upon if appropriate  Why the patient is considered to be dying.

11 2. Sensitive communication with the patient and family This should include: Family contact details should be clearly established.  What is happening and why you This should include: think the patient is dying  1st contact  Preferences and priorities for care  What to do if 1st contact cannot be  Likely prognosis and the clinical contacted – and is there a 2nd contact? uncertainties in the current situation  Does each contact want to be  Elicit any concerns they have and contacted at all times or only at certain how you have/will try to address times?  Communication should include the reason for any intervention or treatment changes, including the use of syringe drivers. More detailed guidance about treatment decisions is outlined below. If the patient or family do not want to discuss their deterioration and that they may die, their wishes should be respected, but they should be offered any opportunity to discuss. If a person does not have any friends or family and lacks capacity to be involved in discussions and decisions about their care in the last few days of life, an Independent Mental Capacity Advocate should be involved. Differences in opinions If there are differences in opinion between about what is in the best interests of the patient and/or the way in which care will be delivered, these should be discussed openly. Alternatives should be explored in a proactive way, including seeking a second opinion or consulting those with particular expertise (such as palliative care). 3. Patient preferences and decisions made in advance If the person retains mental capacity, If the person lacks mental capacity, it check their current preferences for care is appropriate to elicit the views of those and treatment. close to the patient and use these as part Check whether the patient has: of a best interests assessment. Establish whether there are any other  Any ‘advance care plan’ or relevant preferences. These should Emergency Health Care Plan include whether there are:  An Advance Decision to Refuse  Preferences for care at time of or after Treatment (ADRT) death

12  A Lasting Power of Attorney for  Any spiritual or religious needs – health and welfare decisions. Advice and support from LPT Department of Spiritual and Pastoral Care on 0116 2957569. 4. Review of treatments and investigations Current symptom needs should be Observations: review whether routine assessed. If symptoms are identified, observations are still appropriate. If a appropriate action should be taken to decision is made to continue certain address these. Any interventions, observation, their purpose, and what including the use of syringe drivers action should be taken if these are should be explained to the patient (if this abnormal, should be clear. is possible) and their family or carers. (Please note, this refers to routine However, treatments that are in a measurement. Therefore, for example, if patient’s best interest to promote a patient becomes unexpectedly comfort and dignity should not be breathless, measurement by a pulse delayed if reasonable steps to contact oximeter may still be of value in the dying the family or carers have been phase to help maintain comfort by guiding unsuccessful. appropriate oxygen therapy) Anticipatory prescribing for common Risks and benefits of current symptoms in the last days of life should treatments should be reviewed and be carried out so that if non-drug discussed: measures are not sufficient to help any  Any treatments which are now symptoms that develop, appropriate causing harm should be stopped treatments are available. This would (as in usual practice) usually include medication for pain, nausea, terminal respiratory secretions,  Continue treatments promoting breathlessness and agitation. Any comfort and dignity; check route of medication given should be targeted for administration is appropriate specific symptoms, used in the smallest  If there are treatments that are doses that work and their use regularly unlikely to be promoting comfort reviewed and adjusted, if needed. and dignity, these should be As with all treatments, explanations reviewed and stopped if should be given about the purpose and appropriate. intended benefits of anticipatory prescribing should be offered to patients Pressure relieving equipment (if this is possible) and their families or  Patients should be reassessed for carers. pressure-relieving equipment and See local guidance for specific drugs any necessary equipment must be and doses. provided in a timely way

DNA-CPR status should be reviewed. Please note, when someone is in the last Relevant discussions and the decision few days of life, cardiopulmonary about cardiopulmonary resuscitation resuscitation is unlikely to be successful should be clearly documented – or appropriate. including the separate completion of the regional DNA-CPR form when a DNA- In keeping with GMC guidance, a second CPR decision is made. opinion should be sought if there is disagreement between the clinical team Discussions about DNA-CPR should be and the patient\family. held in a sensitive and appropriate manner and patient and family Implantable Cardiac Defibrillator 13 preferences for discussions and If in situ, these should usually be treatments should be taken into deactivated to prevent potentially painful consideration. and distressing shocks in the dying phase. Record discussions and any action to be taken to deactivate device.

14 5. Food and Fluids Patients who are able, should be offered If a patient is unable to swallow, or there and helped to take fluids and/or food if is another reason to consider (such as they wish. symptomatic thirst not relieved by mouth Dying people may not have a desire to care), the potential benefits and burdens drink. The provision of mouth-care to of artificial hydration and nutrition should moisten the mouth and promote comfort be considered. If the patient has capacity, should be offered to all patients. this should be discussed with the patient. When the patient lacks capacity, Patients who are dying should not be decisions should be made in their best made nil by mouth (NBM). If a patient is interests, taking into account any known at risk of aspiration, the risks and should prior wishes and in consultation with the be discussed. The patient should be person’s family and carers and other allowed to accept the risks of eating and members of the team. All decisions drinking if they wish. If they lack should be made in line with GMC capacity, this should be discussed with Guidance. http://www.gmc- family\carers and taken into account uk.org/guidance/ethical_guidance/end_of when making an assessment of best _life_care.asp interests. All discussions and decisions about food and fluid should be clearly documented. 6. Needs of family and carer The needs of the family and carer at this stage should be assessed. They should be offered support and signposted to other relevant services (such as their GP) if appropriate.

3.2 PART 2: On-going review of dying patient 1. At every patient encounter The comfort and emotional wellbeing of The assessments should check for the patient should be assessed. If the the following needs and a plan put in family are present, their needs should place if any issues are identified. also be assessed. 1. Pain well controlled. If there are any concerns or symptoms, 2. Patient is not agitated. document what is being done to address 3. Patient does not have respiratory these, and whether the measures taken secretions. were helpful. 4. The patient is not nauseated or vomiting. In an inpatient setting 5. The patient is not breathless. It is expected that an assessment of the 6. The patients mouth is moist and patients will take place at least every four clean. hours. 7. The patient receives food and fluids In the community setting to support their individual needs. It is expected that a health care 8. The patient does not have urinary professional will assess the patient at problems. least daily, with more frequent 9. The patient does not have bowel assessments if there are unresolved problems. symptoms/issues. 10.Skin integrity is maintained. 15 11.Personal hygiene needs are met. 12. The patient’s emotional, psychological spiritual and religious needs are met.

16 13. The wellbeing of the relatives/those close to the patient is maintained. 14. Check the patient does not have other symptoms (document if there are any). 2. At least daily

 There should be a holistic review of the patient. This should include a discussion with the medical and nursing teams and a review of symptoms and treatments over the last 24 hours. Adjustments should be made, if required.  The individual’s need for food and fluids are assessed.  The relatives/those close to the patient, are contacted to update them and elicit and address their needs.  Any indications of improvement are noted and appropriate actions taken. If the person is no longer thought to be dying, the plan of care should be altered.

4. Education and Training The LPT Palliative Care Team, will support Clinical Education Leads with the launch of The Care of Adults in the Last Days of Life. This document aims to raise awareness and help structure normal clinical activity rather than develop new skills. However, it is anticipated that the new national guidance about education in this area will be issued and this policy and educational initiatives will be reviewed at that stage.

5. Monitoring and Audit Criteria All guidelines should include key performance indicators or audit criteria for auditing compliance, if this template is being used for associated documents (such as procedures or processes) that support a Policy then this section is not required as all audit and monitoring arrangements will be documented in section 8 of the Policy. What key Who will What method How often Who or what element(s) lead on will be used to is the need committee will the need(s) this? gather to monitor completed report monitoring as Name of evidence? each go to. per local lead and element? How will each approved policy what is the How often report be or guidance? role of is the need interrogated to (e.g. Policy other to identify the standards or profession complete a required actions objectives) al groups report ? and how How often thoroughly is the need should this be to share documented in the report? e.g. meeting minutes. Element to be Reporting Lead Method Frequency Monitored arrangements Care of Adults in Audit Annually as 17 the Last Days of part of Life record keeping audit

18 6. Legal Liability Guideline Statement Guidelines or Procedures issued and approved by the Trust are considered to represent best practice. Staff may only exceptionally depart from any relevant Trust Guidelines or Procedures and always only providing that such departure is confined to the specific needs of individual circumstances. In healthcare delivery such departure shall only be undertaken where, in the judgement of the responsible healthcare professional’ it is fully appropriate and justifiable - such decision to be fully recorded in the patient’s notes.

7. Supporting Documents and Key References This document has been produced in accordance with the recommendations from the July 2013 ‘More Care Less Pathway’ report and the proposed response to this from the National Leadership Alliance for Care of the Dying (June 2014).

8. Key Words End of life care, care of the dying, last days of life.

This line signifies the end of the document This table is used to track the development and approval and dissemination of the document and any changes made on revised / reviewed versions DEVELOPMENT AND APPROVAL RECORD FOR THIS DOCUMENT Author / Lead Officer: Job Title: Dr Rosie Bronnert Palliative Medicine Consultant and Adapted for LPT use by Jane Schofield End of Life Care Lead Palliative Care Service Lead Approved by: Date Originally Approved: LPT Clinical Effectiveness Group 9th July 2014 Latest Approval Date: Next Review Date: - On or before 14th July 2015 Version Details of Changes made during review: Number: 1

19 PROMPT SHEET For the Care of Patients Who Are Likely to be in the Last Days of Life (including an individual assessment and care plan documentation) The principles of the 2005 Mental Capacity Act should be applied throughout. Discussions and information should be tailored to individual’s preferences

It is expected that AS A MINIMUM, the documentation to support the decision that a patient is likely to be in the last few days of life, and their ongoing care, covers the areas set out in this prompt sheet. Detailed information is available in the Document for the Care of Adult Patients in the Last Days of Life A. Initial Multidisciplinary Assessment of a Patient who is thought to be Dying and in Their Last Days of Life

1. Recognition That the Patient is Dying

 Who has been involved in the decision?  Relevant diagnoses and specific clinical factors relevant to the decision.  That reversible causes have been considered and acted upon if appropriate.  Why the person is considered to be dying.  Names of responsible doctor and nurse communicated.

2. Sensitive Communication with the Patient and Family

 This should include what is happening and why you think the patient is dying, preferences and priorities for care (see Section 3), likely prognosis and the clinical uncertainties and how you will try to address any concerns.  Patient\carer wishes not to discuss should be respected but further opportunities to discuss offered.  Consult an Independent Mental Capacity Advocate (IMCA) if a patient lacks capacity and has no friend\family or carers.  Differences in opinions should be openly discussed and actively addressed e.g. by seeking a second opinion.  Family contact details should be clearly established.

3. Patient Preferences and Decisions Made in Advance

Check whether the patient has: If the person has capacity, discuss current  Any ‘advance care plan’ or preferences. Emergency Health Care Plan If the person lacks capacity, it is appropriate to  An Advance Decision to elicit the views of those close to the patient and Refuse Treatment (ADRT) use these as part of a best interests  A Lasting Power of assessment. Attorney for health and welfare decisions. APPENDIX 2

Prompt and Care Plan for Adults in the Last Days of Life Page 21 of 34 Version 1 July 2014 Review date July 2015 3. Patient Preferences and Decisions Made in Advance (continued) Discussions about preferences should include:  Preferences for care at time of or after death  Any spiritual or religious needs – advice and support from LPT Department of Spiritual and Pastoral Care on 0116 2957569. During Out of Hours there will be an emergency on call Chaplain on tel: 0116 2256000.

4. Review of Treatments and Investigations Current symptom needs should be Observations: review whether routine assessed. observations are still appropriate. Anticipatory prescribing for common symptoms at the end of life should occur. Risks and benefits of current treatments Refer to local guidance for specific drugs should be reviewed and discussed. and doses. Pressure relieving equipment Palliative care advice and input must be  Reassess and provide any necessary sought if difficult symptoms or advice is pressure-relieving equipment. needed for other aspects of the patient’s care. Please contact LPT Hospice at Home, LPT Macmillan Service or LOROS for complex specialist advice DNA-CPR status should be reviewed. Implantable Cardiac Defibrillator Please note, that for DNA-CPR decisions, If in situ, these should usually be deactivated the correct form must be completed. to prevent potentially painful and distressing shocks in the dying phase.

5. Food and Fluids Patients who are able should be offered and The potential benefits and burdens of helped to take fluids and/or food if they wish. artificial hydration and nutrition should be considered. It should be offered if it is If a patient is at risk of aspiration, the risks should be discussed. thought to be in the best interests and clinically appropriate. 6. Needs of Family/Carer The needs of the family and carer should be assessed

B. Ongoing Assessment of Patient who is thought to be in Last Days of Life

At Every Patient Encounter

The comfort and emotional well-being of the patient should be assessed daily. If family are present, their needs should also be assessed. Document any concerns or symptoms, what is being done to address these, and whether the measures taken were helpful. Ask for advice from a senior team member or the palliative care team, if it is difficult to consistently maintain comfort, dignity or any other aspect of well-being. Please contact LPT Hospice at APPENDIX 2

Home, LPT Macmillan Service or LOROS for complex specialist advice.

Prompt and Care Plan for Adults in the Last Days of Life Page 23 of 34 Version 1 July 2014 Review date July 2015 In an inpatient setting It is expected that an assessment of the patient’s well-being will take place at least every four hours - this will usually be conducted by nursing staff. In the community setting It is expected that a health care professional will assess the patient at least daily, with more frequent assessments if there are unresolved symptoms/issues.

At Least Daily

 There should be a holistic review of the patient. This should include a discussion with the medical and nursing team about symptoms (physical, emotional or spiritual) and any treatments or care needs over the last 24 hours. Adjustments should be made to the treatment/care plan, if needed, to try and maintain or improve comfort.  The individual’s needs for food and fluids are assessed.  The relatives/those close to the patient are contacted to update them and elicit and address their need.  Any indications of improvement are noted and appropriate actions taken. If the person is no longer thought to be dying, the plan of care should be reviewed and altered, as appropriate. APPENDIX 2

CARE IN THE LAST DAYS OF LIFE

PATIENT’S NAME: ______NHS NO: ______FAMILY / CARER CONTACT DETAILS

1st Contact Name: ______Contact any time? Relationship to Patient: ______Not at night? Tel No: ______Mobile: ______Other ______

2nd Contact Name: ______Contact any time? Relationship to Patient: ______Not at night? Tel No: ______Mobile: ______Other ______

ADVANCE DECISIONS PATIENT’S PREFERENCE OR WISHES REGARDING END OF LIFE CARE AT END OF LIFE OR AFTER DEATH

Has there been a sensitive discussion and ………………………………………………………………………………………………………… explanation to the patient\carer, as appropriate about ………………………………………………………………………………………………………… DNA-CPR? (Document completed)? ………………………………………………………………………………………………………… Yes No ………………………………………………………………………………………………………… ………………………………………………………………………………………………………… Information on the discussion to patient and family. …………………………………………………………………………………………………………

…………………………………………………………………………………………………………

Where is the DNA-CPR form kept?

End of Life Care Booklet or Leaflet Given? Yes □ No □

If No, Why Not?.

Nurse Responsible: ...... Doctor Responsible: ......

Name of Nurse completing this Care Plan: ………………………………………………………………………………….…………………………………

Signature: ...... Date: ...... / ...... / ...... Time: ......

Prompt and Care Plan for Adults in the Last Days of Life Page 25 of 34 Version 1 July 2014 Review date July 2015 APPENDIX 2

PATIENT’S NAME: ______

NHS NO: ______

INITIAL SYMPTOM ASSESSMENT

Date: ………… / ……...… / …..….… Time: ……………….…..

IS …………………………………………………………...... DISPLAYING SIGNS OF:- YES NO SIGNATURE (patient name) If the answer is “Yes” to any of these symptoms, please complete a care plan using existing LPT\CHS plans when available (e.g. for skin care) or Appendix 1 – Care in the Last Days of Life for any other issues identified 1) Pain or Discomfort? □ □ 2) Agitation? □ □ 3) Respiratory Secretions? □ □ 4) Nausea or Vomiting? □ □ 5) Shortness of Breath? □ □ 6) Dry or Dirty Mouth? □ □ Mouth Care offered? □ □ 7) Urinary Problems? □ □ 8) Bowel Problems? □ □ Bowels Last Opened ...... / ...... / ......

9) Skin Breakdown or Pressure Sores? □ □ 10) Emotional/Psychological or Spiritual Distress? □ □ Other Symptoms (please specify): □ □

Ensure the statements below have been assessed and if any actions are needed, care plans MUST be completed. Have the patient’s hygiene needs been met? □ □

If able to take oral food & fluid, has it been offered to the patient? □ □ If unable, has the need for artificial nutrition\hydration been assessed? Is artificial hydration/nutrition appropriate? □ □ Is artificial hydration/nutrition in place? Discussion must take place with the patient and carer on the individual’s □ □ needs for hydration/nutrition. This is documented and a care plan is put in place, if required. □ □

If appropriate, what?: ………………………………………………….….…... (e.g. subcutaneous) Is the well-being of relatives/those close to the patient being maintained? □ □

Has the patient been given the opportunity to discuss what is important to them (i.e. faith/feelings/beliefs/wishes/values)? □ □ Is referral to spiritual adviser required? □ □

PATIENT’S NAME: ______NHS NO: ______ONGOING SYMPTOM ASSESSMENT:- REASSESS PATIENT’S SYMPTOMS A MINIMUM OF 4 HOURLY (INPATIENT SETTINGS). COMMUNITY HEALTH NURSES TO RE-ASSESS AT EACH VISIT. DATE / TIME & SIGN; ANSWER Y (YES) OR N (NO) FOR EACH SYMPTOM

DA DA DAY 3 Y 1 Y 2

DATE: …... …/ …..…. / …..…. …... …/ …..…. / …..…. …... …/ …..…. / …..….

NURSE SIGNATURE:

IS ………………………………………………………………………………………………..………………….… DISPLAYING SIGNS OF:- (patient name) If the answer is “Yes” to any of the symptoms\statements below then please complete a care plan Pain or Discomfort?

Agitation? Respiratory Secretions?

Nausea or Vomiting? Shortness of Breath? Dry or Dirty Mouth? Mouth Care Offered? Urinary Problems? Bowel Problems? Skin Breakdown or Pressure Sores? Emotional/Psychological or Spiritual Distress? Other Symptoms? (please specify)

………………………………………………………….

…………………………………………………………. Does the patient require help/support with their hygiene needs? Does the patient require any intervention with their food & fluid intake? Do the relatives/those close to the patient need an assessment for their well-being?

Appendix 1 CARE IN THE LAST DAYS OF LIFE

PATIENT’S NAME: ______NHS NO: ______

SYMPTOM:

PATIENT\CARER GOAL:

PLAN OF CARE:

EVALUATION\COMMUNICATION:

SIGNATURE:

of 34 APPENDIX 4

INITIAL SYMPTOM ASSESSMENT (Extract from SystmOne)

of 34 APPENDIX 4

of 34 APPENDIX 5 ONGOING SYMPTOM ASSESSMENT (Extract from SystmOne)

of 34 APPENDIX 5