CARE OF THE DYING PERSON IN THE LAST HOURS TO DAYS OF LIFE A learning resource for medical students. Elizabeth Beasant Dr Dylan Harris

Transcription

1 CARE OF THE DYING PERSON IN THE LAST HOURS TO DAYS OF LIFE A learning resource for medical students Elizabeth Beasant Dr Dylan Harris

2 Contents Page Number Learning objectives 2 Clinical case history 4 Palliative care: introduction 5 Recognising dying: priorities for care of the dying person 7 Common symptom control issues in the last days of life 10 Ethical and legal issues 17 All Wales Care Decisions Tool (CDT) for the Last Days of Life 19 Answers to questions 25 References 28 Version 9.0/

3 1. Learning objectives This workbook has been mapped to the Association for Palliative Medicine 2014 curriculum for undergraduate medicine, which is in itself mapped to the General Medical Council s Tomorrow s doctors. Whilst this is not an exhaustive list, this workbook will help develop knowledge and understanding of a number of components of the APM curriculum, notably: Basic principles: Demonstrate an understanding of: Terms such as palliative care, end of life care Patient priorities and preferences at the end of life Frameworks to support end of life care provision When specialist palliative care services should be involved Demonstrate appropriate attitudes towards: Palliative care as a generic skill and duty of all healthcare professionals, including themselves as future junior doctors Physical care: Disease processes Demonstrate an understanding of: The range of dying trajectories and the significance of transition points Demonstrate appropriate attitudes towards: Role of anticipatory prescribing and the drugs commonly used Demonstrate the ability to: Formulate and review an appropriate end of life care plan Write a prescription for anticipatory symptom management Write a prescription for a continuous subcutaneous infusion ( syringe driver ) Demonstrate an appropriate attitude towards: Holistic care: identifying and addressing physical, psychological, social and spiritual needs of patients and their families 2

4 Care of the dying patient: Demonstrate an understanding of: Signs indicating that a patient is dying Management of symptoms at the end of life Ethical, legal and clinical issues of oral nutrition and hydration, clinically assisted nutrition and hydration, sedation and use of opioids in the dying phase Demonstrate ability to: Development a personalized management plan for the care of a dying patient Demonstrate appropriate attitude towards: Recognition of a dying patient and acceptance of the refocusing of care provision Ethical and legal issues: Demonstrate and understanding of GMC guidance including treatment and care towards the end of life Demonstrate ability to: Apply ethical frameworks (Beneficence, Non-maleficence, autonomy, justice) to ethical issues at the end of life Demonstrate and understanding of The law in relation to end of life care To gauge your current knowledge and understanding around this topic area a case history and some questions are presented on the next page. You may wish to read through the workbook before answering them fully, but reading through this case now may help focus your learning. You will return to this patient again at the end of the work book. 3

5 2. Case history Mrs Smith is an 87 year old lady with end stage heart failure. She has suffered a stroke resulting in a dense hemiplegia, 7 days ago. Over the last few days she has remained unresponsive, bed bound and only managing sips of fluid orally. She has signs of a developing chest infection, for which she was started on intravenous antibiotics 48 hours ago. Her other medical history includes: previous ventricular arrhythmias and Implantable Cardioverter Defibrillator (ICD) in place; type 2 diabetes (tablet controlled); arthritis; osteoporosis, previous right hip replacement; hypothyroidism. Her current medication is: gliclazide, paracetamol, alendronic acid, furosemide, digoxin, bisoprolol, aspirin, intravenous co-amoxiclav, simvastatin, calcium-vitamin D. She hasn t been able to swallow any oral medication today. On examination she has significant oedema, bibasal crepitations, a respiratory rate of 30, BP 85/40, pulse 96 regular, and a temperature of 37.8 C. Her daughter is visiting from London and is sitting by her side. You know that her son lives in New York and has phoned the ward. She is also prescribed 12 hourly bags of normal saline and there are forms for U+E and FBC out for the phlebotomist to take blood today. Her intravenous cannula has tissue again and tow unsuccessful attempts have been made to re-site it. The ward sister has asked for her to reviewed asap as she thinks she s dying. Questions: In response to the ward sister s comment, how will you assess whether this lady is dying or not? She hasn t been able to swallow any oral medication today, how would manage this? Her intravenous cannula has tissued and the prescribed intravenous antibiotics and intravenous fluids can t currently be given, how would you manage this? Is there any other medication that you wish to prescribe now? What are you going to say to her daughter? Is there anything else relevant to think about at this point (hint: she has an ICD)? 4

6 3. Palliative care: introduction "Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual." Figure 1: WHO definition of palliative care (1). End of life care may encompass a number of situation and circumstances Patients who have a life expectancy of a couple of days or hours are also considered to be nearing the end of life. However, the term end of life is often used to refer to the last year of a terminally ill patient s life. Figure 2: Source: (5) General and specialist palliative care General(ist) palliative care is 1 provided by primary care professionals and specialists treating patients with life-threatening diseases who have good basic palliative care skills and knowledge. This is particularly the case for professionals who are involved more frequently in palliative care, such as general practitioners, oncologists or geriatric specialists, but do not provide palliative care as the main focus of their work. Specialist palliative care 1 is provided in services whose main activity is the provision of palliative care. Specialist palliative care is provided by specialised services for patients with complex problems not adequately covered by other treatment options, particular where sought from those delivering generalist palliative cares. 1 Definition adapted from Gamondi C, Larkin P and Payne S. Core competencies in palliative care: an EAPC white paper on palliative care education. EJPC 2013;20(2):

7 Examples of indications for referral to specialist palliative care could include (3): Where there are refractory symptoms, which are poorly controlled or not responding to usual initial management The patient s situation or condition is particularly psychologically challenging for them or their family There are young children belonging to the patient There are complex ethical or social issues The General Medical Council (GMC) has a specific guideline on Treatment and care towards the end of life: good practice in decision making which provides useful clarification on a number of key medical-legal areas relating to end of life care, including: Advance Care Planning, including Advance Decisions to Refuse Treatment Clinically assisted nutrition and hydration Cardiopulmonary resuscitation, and making Do not attempt resuscitation decisions The guidance is available at: 6

8 4. Recognising dying and Priorities for Care of the Dying person It is never possible to know exactly how long a person can expect to survive but it is often something that many patients and their families wish to know. A commonly used phrase is: If someone that knows you can see changes week to week, then it is likely that you ll have a number of weeks. If they see changes day to day, it is likely that you ll have a number of days (3) However, it should always be made clear that this is only an approximation and may be inaccurate as each person is different. Medical indications that death is approaching may include (2) (3): Overwhelming tiredness and weakness (e.g. become bedbound) Difficulty in swallowing (e.g. no longer able to take tablets) Loss of appetite, interest or ability to eat and drink Confusion, minimal conversation, semi-comatose No obvious reversible cause to account for the deterioration (e.g. chest infection, hypercalaemia, dehydration QUESTION Answers at back There may be several key barriers to diagnosing dying, can you list what these may be? Priorities for Care of the Dying Person To ensure good care is delivered to the dying patient it may be useful to use these 5 priorities for care of the dying person (4) as prompts: Recognise Plan and do Communicate Support Involve Figure 3: Priorities for Care of the Dying Person. Source: (10) 7

9 1. Recognise (4) Recognise that a patient may die within the next hours or days and communicate this clearly. When deterioration of the patient s health occurs, assess for potential reversible causes e.g. infection, dehydration, hypercalcaemia. 2. Communicate (4) Sensitive communication between staff and the dying person and those identified as important to them. The level of detail given to the patient about their next few hours should be based on what the patient would like to know. They should be given time to ask questions. Language used when communicating with the patient must be appropriate for their level of understanding. Some patients do not wish to discuss their health or prognosis in detail. 3. Involve (4) Clarify with the patient how involved they wish their family or other people to be in making decisions and also whether they should be informed about any progress or changes in the plan or patient s wellbeing. Give the patient, their family and others involved the name of the senior doctor who is supervising their care as well as the names of nurses who lead the patients care on the ward. 4. Support (4) The needs of families and those important to them should be actively explored. Simple advice can be given to the family or others about what they could do that help them through the situation e.g. open visiting times if in a hospital setting, assisting with the patient s mouth care etc 5. Plan and Do (4) Create a plan of care based on the individual. Addressing symptom relief and psychosocial, emotional and physical requirements. In addition, attention should be paid to the patient s cultural, spiritual and religious requests. Ensure the plan is documented and shared so that the team caring for the patient can incorporate it efficiently. Review the plan regularly. Eating and drinking should be continued without question until the patient no longer desires it, or, if it becomes hazardous to them, at which point discussions should be had about how to negate the risks of choking for example. Treatment and care towards the end of life: good practice in decision making should be adhered to. (5) QUESTION Answers at back What kind of reversible causes might cause a patient to deteriorate unexpectedly? QUESTIONS Answers at back 1) What options are available regarding hydration if the patient cannot swallow? 2) A patient with cardiomyopathy and previous cardiac arrest is felt to be in the last hours to days of life. What device should you check for and what should you do about it? 3) DNACPR decisions are a form of True or False advance care planning 4) Under what circumstances might you not inform the patient that a DNACPR form was in place? 8

10 Figure 4: Goals for good end of life care (2) Ensure that the patient is comfortable Enable a peaceful and dignified death Goals Support the family and carers Meet the emotional, spiritual and physical needs of the patient Key considerations in the last hours to days of life Reversible causes: Have reversible causes of the patient s deterioration been excluded and does the team agree with patient is dying. Organ/tissue donation: Is the patient a potential organ or tissue donor,? Preferred place of care: Is the patient where they wish to be cared for (has their preferred place of death been broached?) Discontinuation of inappropriate interventions: Is there clear documentation about what interventions should now be discontinued: blood tests; Implantable Cardiac Defibrillator (ICD) (if present); antibiotics Medication: has current medication been reviewed? Have non-essential drugs been discontinued? Anticipatory prescribing: common symptoms in the last hours to days of life are pain, nausea/vomiting, agitation/restlessness and chest secretions, has medication been prescribed for use if needed to manage these: o Remember the 4A s analgesic (e.g. diamorphine), anxiolytic (e.g. midazolam), antiemetic (e.g. cyclizine) and anti-secretory (e.g. hyoscine butylbromide). Hydration and nutrition: Has hydration been considered and whether on balance of benefit/harm intravenous or subcutaneous fluids should be continued? Resuscitation: Has a Do Not Attempt Resuscitation (DNAR) decision been made, communicated and clearly documented? Religion/spirituality: Does the patient have specific religious or spiritual beliefs; would they like to see the chaplain or spiritual leader/representative? QUESTION Answers at back 1) Under what circumstances investigations should be performed at this stage? 9

11 6. Common symptom control issues in the last days of life In the last hours to days of life people become unable to manage oral medication and alternatives need to be considered. Any medication that is non-essential should be stopped at this point (e.g. statins for secondary prevention of ischaemic heart disease become no longer appropriate) (6). Medication for pain, nausea, anxiety needs to be continued. Always anticipate common symptoms that may occur in the last hours to days of life e.g. pain, nausea/vomiting, agitation/restlessness and chest secretions. Prescribe medication anticipatorily that can be used to help with this: Remember the 4A s :- analgesic (e.g. diamorphine), anxiolytic (e.g. midazolam), anti-emetic (e.g. cyclizine) and anti-secretory (e.g. hyoscine hydrobromide). Example prescriptions are shown on the next few pages. Syringe drivers (a pump which delivers a continuous infusion of medication subcutaneously) are often used in palliative patients as continuous doses of medication can be given and adjustments can easily be made (3). Most common drugs used for symptom control at the end of life can be given subcutaneously in this way e.g. morphine, midazolam, hysocine hydrobromide and all common anti-emetic. Figure 8: Source: (3) Indications for syringe driver use: Vomiting Dysphagia Unconscious patient Poor compliance with oral medication QUESTIONS Answers at back 1) What 4 drugs should be written up PRN for the dying patient? 2) Why shouldn t opioid patches be started to control pain in the last days of life? 10

12 Example of a syringe driver prescription: Initially this initial if to continue allows nurses to replenish the syringe driver daily for up to 7 days or until the prescription is changed. Otherwise the prescription needs to be re-written daily, which may delay the patient receiving it. As a general rule syringe drivers should always be prescribed over 24hours duration. 11

13 Example of anticipatory prescribing prescription: 12

14 add an ADUVANT ANALGESIC at any step Pain Pain is one of the most common issues experienced by patients at the end of life and should be managed according to the WHO guidelines (8) for the use of analgesia. STEP 3 SEVERE PAIN Use OPIOID ANALGESICS + NON-OPIOID Examples Morphine Oxycodone Fentanyl STEP 2 MODERATE PAIN Use a WEAK OPIOID + NON-OPIOID Examples Tramadol plus paracetamol, Co-codamol (Codeine and paracetamol) STEP 1 MILD PAIN Use NON-OPIOID ANALGESICS Examples Paracetamol When a patient is no longer able to take their usual opioid tablets these can be converted into a subcutaneous infusion in a syringe driver Example, for a patient taking oral morphine sulphate sustained release tablets (MST) and immediate release morphine liquid (oramorph), this can be converted to diamorphine into a syringe driver (the dose is 1/3 rd of the total daily oral morphine dose) so a patient taking MST 30mg twice daily would have diamorphine 20mg over 24 hours in a syringe driver As well as the continuous diamorphine infusion, an as required should be prescribed for breakthrough pain and this is usually 1/6 th of the total 24 hour dose (for a patient with a syringe driver of 20mg over 24hours their breakthrough dose of diamorphine as required subcutaneous would be 5mg (20/6 is 3.33 so the number needs to be rounded up or down slightly so make a measurable dose) (6). QUESTIONS 1) A patient takes 60mg MST bd. What should the dose of oramorph be? 13

15 QUESTIONS Answers at back 2) Which is not a A) Vomiting symptom of opioid B) Dilated pupils toxicity? C) Hallucination D) Myoclonus 3) What might be a barrier to assessing a patient s pain in the last days of life? What could you do? Respiratory Secretions 50% of patients will have the death rattle (3). This is caused by respiratory secretions collecting in the hypopharynx which causes breathing to be noisy (3). Patients and family members can find this distressing. Hysocine hydrobromide (given subcutaneously) can help reduce secretions developing. Side effects include sedation, confusion and a dry mouth (3). QUESTIONS 4) How can you manage a dry mouth? 5) What non-pharmacological treatments could be considered for noisy breathing and excess secretions? Figure 10: Management of respiratory secretions. Source: (3) 14

16 Breathlessness Management: Reversible causes must be eliminated or corrected (9) Non-pharmacological treatments can be used (9) o Breathing or relaxation exercises o Positioning and posture correction o Using a fan, or opening a window to get a breeze on the patients face can reduce the unpleasant sensation Consider oxygen therapy if the patient is hypoxic (e.g. oxygen saturations 90% or less), nonhypoxic patients may find similar benefit from air/hand held fan Opioids o Immediate release morphine can be used for breathlessness (as well as pain) and converted to a long acting form if needed/of benefit (2) Benzodiazepine o Benzodiazepeines (e.g. lorazepam and diazepam) may help patients where there is significant anxiety contributing to their breathlessness (3). Nebulized saline if mucoid secretions or tickling dry cough (2) Restlessness/confusion Terminal agitation should only be diagnosed when typical causes have been excluded or if conventional treatment has proven ineffective. Treatment can be commenced to relieve distress or emotional anguish but environmental factors are also important- for example, allowing the patient to have quiet and stable/familiar surroundings (9). Figure 5: Causes to exclude. Source: (2) Management: Assess for correctable causes. Treat symptoms whilst correcting any issues. Pharmacologically common drugs which may be used (2): Haloperidol, Midazolam, Levopromazine 15

17 QUESTIONS Answers at back 6) What could be possible causes of breathlessness that are reversible/potentially treatable? 7) What is delirium? 8) Haloperidol and metoclopramide may True or False cause akathisia 9) Cyclizine can cause anticholinergic True or False effects Nausea and Vomiting Nausea and vomiting do not often occur in the last days of life unless the patient has been experiencing them previously (2). If it does occur, its cause should be treated if possible. Antiemetics should be selected based on the cause of the symptom as their sites of action vary (9). They should be administered subcutaneously and are typically given in a syringe driver in the last days of life. Cause of nausea Drug or metabolic Delayed gastric emptying Vestibular or intra-cranial Anticipatory nausea Malignant bowel obstruction Chemotherapy, radiotherapy, Multiple causes if 1 st line drug(s) failed Examples e.g. nausea secondary hypercalaemia, after starting an opioid e.g. squashed stomach syndrome from large volume liver metastases e.g. nausea secondary to brain metastasis e.g. anticipatory nausea prechemotherapy (and other causes where serotonin in GI tract felt to be causing nausea e.g. immediately post op). Anti-emetic of choice and example oral dose (unless stated otherwise) Haloperidol (e.g. 1.5mg od-bd) or Metoclopramide (e.g. 10mg qds) Metoclopramide (e.g 10mg qds-20mg qds) or Domperidone 10mg qds Cyclizine 50mg tds Lorazepam 0.5mg prn Hyoscine butylbromide 60mg CSCI over 24 hours. Consider adding haloperidol and/or dexamethasone. If partial bowel obstruction consider metoclopramide instead Ondansetron 4mg tds Levomepromazine 6.25mg od-bd Harris DG. Management of nausea and vomiting in advanced cancer, British Medical Bulletin 2010;96:

18 7. Ethical and legal issues Do Not Attempt Cardiopulmonary Resuscitation (DNA CPR) When patients are nearing the end of life, it is important to consider making a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decision (7). Figure 6: Source: (7) Benefits of having a DNACPR in place: Patient can avoid emergency admissions to hospital if cared for at home Permits the patient to have a more peaceful and dignified death In most cases a discussion about resuscitation should be approached with the patient, unless it is felt the discussion in itself will cause harm from significant distress. The patient s preferences/wishes should be carefully taken into consideration, but the decision of whether to offer CPR is a medical one. The decision should involve the patient or their family if possible and appropriate. Doctors sometimes use the phrase allowing a natural anticipated and accepted death in this context (7). Advance Care Planning Patients may express preferences for treatment (sometimes called an Advanced statement of wishes or Advance statement of preferences ). These should always be taken into consideration by healthcare professionals but are not legally binding. Healthcare professionals are not legally compelled to provide treatments felt to be inappropriate or futile. Patients may also express specific treatments they do not wish to have (e.g. do not wish to be resuscitated). These are termed Advance decisions to refuse treatment (ADRT) and are legally binding if properly formatted and witnessed (10) (11). QUESTIONS True or false, Advance decisions or ADRT (Advance decision to refuse treatment) (3) : 1) Can only be made by adults with capacity 2) Only regard refusal of treatment 3) They can refuse lifesaving treatment 4) They cannot be altered at a later date 5) If they are refusing lifesaving treatment but there is no phrase even if my life depended on it or similar, then it is invalid LPA (Lasting Power of Attorney): An LPA can be appointed by someone (whilst they still have capacity) to take control and make decisions on behalf of that person should they lose capacity (10). This can be for health, or welfare and financial decisions or both (12). It should always be checked with a LPA is for financial or health or both. IMCA (Independent Mental Capacity Advocates): An IMCA can be contacted for people without capacity and who have no family or other representatives. The IMCA is impartial person who aims to ensure the patients best interests are 17

19 properly considered in key decisions about their care. They are required to provide input when making decisions about significant medical treatment (13). Mental Capacity For a person to have capacity to make decisions they must (9): 1. Understand the information 2. Retain the information 3. Weigh up the information to make a decision 4. Communicate that decision Deciding best interests: Validate the person's lack of capacity at that time Reflect on benefit versus potential harm of medical treatment Explore current wishes of patient (even though they do not have capacity to make decision, they may have opinions that should be taken into account) Clarify previous wishes. May be documented in notes, statements. Also check views of legally appointed representatives of the patient, carers and family members Best interests decisions Best interest decisions need to be made for complex clinical/ethical decisions where the person themselves no longer has capacity to decide/consent (e.g. a patient with advanced dementia and dysphagia and risk of aspiration, and deciding whether to consider artificial feeding via a percutaneous gastrostomy). Relatives and carers have legal rights to be involved in conversation about best interest decisions. Best interest decisions should be a consensus amongst the necessary involved professionals in consultation with the patient s family and carers. QUESTIONS Answers at back 1) People should be assumed to have capacity until proven otherwise True or False 2) Patients with fluctuating capacity should not be able to consent or True or False refuse treatment 3) Capacity can be assessed based on the patient s medical condition True or False 18

20 7. All Wales Care Decisions Tool (CDT) for the Last days of Life The Care Decisions Tool for the Last Days of Life represents a patient-centred model of care focussing on communication, comfort and compassionate care for the patient and those important to them wherever possible. It is based on the following key principles: Good Communication good communication with patients and those important to them is essential. Good Symptom control the first priority for 85% of patients is to be pain free. Holistic care need to consider all aspects of caring i.e. physical, psychological, social, and spiritual needs for the patient and those important to them. Individualised care everyone has different priorities and concerns. Implicit in these, is the goal of involvement of patient and those important to them. The tool allows healthcare professionals to record in a systematic and structured way all of the decisions and discussions that have taken place. The document remains with the patient (e.g. in their hospital notes if an inpatient or in their community district nurse notes in the house if at home). It is therefore a structured record and care plan of all the issues covered in the other sections of this workbook. This means that any professional seeing the patient (e.g. on-call junior doctor, GP out of hours, ambulance crew) has a clear summary to follow of the approach to care and what discussions have been had and what decisions have been made. A copy of the care Decisions Tool is displayed over the next few pages, it can be viewed fully at: Summary: key considerations in the last hours to days of life Have potentially reversible causes of the patient s deterioration been excluded? Is the patient a potential organ or tissue donor,? Is the patient where they wish to be cared for (has their preferred place of death been broached?) Is there clear documentation about what interventions should now be discontinued: Has medication been reviewed and non-essential drugs been discontinued? Anticipatory prescribing of the 4 A s: analgesic, anxiolytic, anti-emetic and anti-secretory Has hydration been considered and whether on balance of benefit/harm intravenous or subcutaneous fluids should be continued? Has a Do Not Attempt Resuscitation decision been made, communicated and clearly documented? Does the patient have specific religious or spiritual beliefs to be aware of? 19

21 20

22 21

23 22

24 23

25 5. Case history Return to the case history to summarise your learning. Some answer notes are included at the end of this workbook. Mrs Smith is an 87 year old lady with end stage heart failure. She has suffered a stroke resulting in a dense hemiplegia 7 days ago. Over the last few days she has remained unresponsive, bed bound and only managing sips of fluid orally. She has signs of a developing chest infection for which she was started on intravenous antibiotics 48 hours ago. Her other medical history includes: previous ventricular arrhythmias and Implantable Cardioverter Defibrillator (ICD) in place; type 2 diabetes (tablet controlled); arthritis; osteoporosis, previous right hip replacement; hypothyroidism. Her current medication is: gliclazide, paracetamol, alendronic acid, furosemide, digoxin, bisoprolol, aspirin, intravenous co-amoxiclav, simvastatin, calcium-vitamin D. She hasn t been able to swallow any oral medication today. On examination she has significant oedema, bibasal crepitations, a respiratory rate of 30, BP 85/40, pulse 96 regular, and a temperature of 37.8 C. Her daughter is visiting from London and is sitting by her side. You know that her son lives in New York and has phoned the ward. She is also prescribed 12houlry bags of normal saline and there are forms for U+E and FBC out for the phlebotomist to take blood today. Her intravenous cannula has tissue again and tow unsuccessful attempts have been made to re-site it. The ward sister has asked for her to reviewed asap as she thinks she s dying. Questions: In response to the ward sister s comment, how will you assess whether this lady is dying or not? She hasn t been able to swallow any oral medication today, how would manage this? Her intravenous cannula has tissued and the prescribed intravenous antibiotics and intravenous fluids can t currently be given, how would you manage this? Is there any other medication that you wish to prescribe now? What are you going to say to her daughter? Is there anything else relevant to think about at this point (clue: she has an ICD, and previous hip replacement)? 24

26 Answers QUESTION ANSWERS Chapter 4 Barriers to recognising dying may include: Hope that the patient may improve No definitive diagnosis Pursuance of unrealistic of futile interventions Failure to recognise key symptoms and signs Poor ability to communicate with the patient and family Fear of shortening life Cultural and spiritual barriers This is a useful reference around this topic area: Ellershaw J and Ward C. Care of the dying patient: the last hours or days life. BMJ 2003;326: Chapter 4 Common reversible causes to exclude when a patient is deteriorating include: common injections (e.g. UTI, chest infection); metabolic disturbances (e.g. hyponatraemia and hypercalcaemia) medication side effects (e.g. opioids, benzodiazepines) anaemia; dehydration/renal impairment. Chapter 4 What option is available regarding hydration if the patient cannot swallow? Oral fluids/sips should continue to be offered to a patient until no longer able to swallow. In some patient subcutaneous fluids may be considered. This may need to be a careful balance of benefit versus harm. A patient with cardiomyopathy and previous cardiac arrest is felt to be in the last hours to days of life. What device should you check for and what should you do about it? These patients may have an ICD (Implantable Cardiac Defibrillator), ideally consideration should be given to having this deactivated sooner rather than later, in an emergency situation where there is concern the device may start delivering shocks as the patient is imminently dying, a magnet can be taped over the device on the patient s skin to deactivate it. DNACPR decisions are a form of advance care planning. True! Under what circumstances might you not inform the patient that a DNACPR form was in place? Current guidance suggests that discussion should be attempted with the patient, but acknowledges that some patients may not wish to discuss this issue (in which case the discussion should not be enforced on them) and in some patients the discussion itself could cause severe distress and psychological harm. If a decision is made not to discuss with the patient then the reason for this should be documented. The GMC guideline on Treatment and care towards the end of life: good practice in decision making has a section of making resuscitations decisions. Chapter 4 Under what circumstances investigations should be performed at this stage? 25

27 Investigations (e.g. blood tests) should only be preformed it they may change the management of the patient. This may be part of the process of assessing if the patient is dying (e.g. a patient who is drowsy and confused with metastatic bone disease may have hypercalcaemia, which is a potentially treatable cause of their deterioration, or may be dying. The team may wish to check a serum calcium first, before concluding the patient is dying). Chapter 5 What 4 drugs should be written up PRN for the dying patient? Remember the 4 A s : analgesic (e.g. diamorphine), anti-emetic, anxiolytic (e.g. midazolam), anti-secretory (e.g. hyoscine hydrobromide). Why shouldn t opioid patches be started to control pain in the last days of life? Patches are generally not suitable for opioid titration (each patch needs changing every 3 days) as it may be difficult to rapidly increase/titrate the dose. They are not recommended first line. In this context a syringe driver can be used and the doses reviewed and adjusted daily. In patients on stable doses of opioids a patch may be appropriate in some circumstances e.g. difficult swallowing in a patient with a head and neck tumour, problems with absorption of oral medication, poor compliance etc A patient takes 60mg MST bd. What should the dose of oramorph be? 60mg twice daily is 120mg/day, a sixth of this is 20mg Which is not a symptom of opioid toxicity? B, constricted or pin point pupils occur in opioid toxicity. What might be a barrier to assessing a patient s pain? What could you do? Patients in the last hours of days of life may be unable to communicate verbally. Other non-verbal indicators may suggest pain e.g. body posture, facial grimacing etc How can you manage a dry mouth? Through good mouth care: sips of fluids, saliva substitutes (e.g. saliva spray), oral balance gel, use of a soft toothbrush for the patient to such water from. What non-pharmacological treatments could be considered for noisy and excessive secretions breathing? Reposition the patient, consider suction is come cases, support and reassurance to patient and relatives What could be possible causes of breathlessness that are reversible/potentially treatable? Infection (pneumonia), pulmonary embolus, pain, anxiety, pleural effusion What is delirium? An acute state of confusion resulting from global cerebral dysfunction that manifests as agitation, disorientation, cognitive impairment and memory loss. Haloperidol and metoclopramide may cause akathisia True Cyclizine can cause anticholinergic effects True Chapter 6 Advance decisions or ADRT (Advance decision to refuse treatment) (3) : 1. Can only be made by adults with capacity TRUE 2. Only regard refusal of treatment TRUE 3. They can refuse lifesaving treatment TRUE 4. They cannot be altered at a later date FALSE 5. If they are refusing lifesaving treatment but there is no phrase even if my life depended on it or similar, then it is invalid TRUE 26

28 Chapter 6 1. People should be assumed to have capacity until proven otherwise TRUE 2. Patients with fluctuating capacity should not be able to consent or refuse treatment FALSE (i.e. not necessarily as they may have more lucid periods where they are able to discuss consent etc) 3. Capacity can be assessed based on the patient s medical condition FALSE Case history: answer notes This lady has end stage heart failure (i.e. a life limiting diagnosis) and an additional new diagnosis of a stroke. Prognosis after a stroke is variable but where there is improvement it would usually be seen within a week of the stroke occurring and there does not seem to have been any improvement in this case. The lady has also now developed a pneumonia (which could be an aspiration pneumonia, as a recognised complication of a stroke) and has had 48 hours of active treatment with intravenous antibiotics with no response. She also has a background of multiple other medical co-morbidity. Diagnosing dying is difficult, as there is no specific diagnostic test but this lady has all the features or indicators explored in the booklet section on recognising dying, particularly noting that despite active management and treating potentially reversible problems (pneumonia), she has continued to deteriorate. All oral medication should be rationalised (stopped) as she can no longer manage it. If patients are on opioids or anti-emetics they can be converted to a syringe driver at this point (not in this case, but assess whether the patient appears in any discomfort, pain or distress). Anticipatory prescribing of subcutaneous medication as required for symptom control at the end of life should now be done (see section on common symptom control issues in the last days of life ). On further discussion with the daughter, given that she has had 48 hours of antibiotics with no improvement it may be decided to stop them at this point, equally given that she has heart failure, bibasal chest crepitations and significant peripheral oedema it may well be decided not to continue artificial hydration further but focus on oral mouth care, sips of fluid if tolerated etc. The GMC guidance referred to in the booklet has a useful section on assisted hydration at the end of life which discusses the evidence and pros and cons in this context When discussing with the daughter, in the first instance explore her understanding of her mother s condition to gauge the starting point from where you are approaching the discussion that her mother is dying from. Resuscitation should be discussed within the conversation (in terms of having a low/negligible chance of success; the potential long term sequelae even if successful e.g. hypoxic brain damage; and recognising that the patient is dying and therefore allowing a dignified natural anticipated death) (see section on resuscitation decisions). The son also needs to be made aware, and perhaps a suggestion that he should arrange to return immediately if feasible. When explaining that someone is dying it is important to use the word dying, or give a prognosis of hours of days, as otherwise the relative may not realise that is what is being said if it is described in a round about way. Place of care needs to be considered, had the patient ever expressed a preference of where she wanted to die? Is this was at home would this be practical and what additional help would need to be put in place e.g. district nurse, hospital bed at home, syringe driver at home, community palliative care nurse, Hospice at home care to help with physical care needs etc? The GP and district nurse 27

29 would have a central role for someone at home at the end of life. The other practical issue to consider is that the ICD needs to be deactivated by a cardiac physiologist, or in an emergency situation a magnet can be place over it, further information on ICD deactivation at the end of life can be found here: She also has a hip replacement, and depending on the type of placement the crematorium may need to be aware of that or it removed (and the ICD) after she has died, this applies to some other types of metal implant also (like the ICD). REFERENCES 1. World Health Organisation. WHO Definition of Palliative Care. [Online].; 2015 [cited 2015 May 25. Available from: 2. Adam J. The last 48 hours. In Fallon M, Hanks G. ABC of palliative care. Oxford: Blackwell Publishing; p Watson M, Lucas C, Hoy A, Wells J. Oxford Handbook of Palliative Care. 2nd ed. Oxford: Oxford University Press; Leadership Alliance for the Care of Dying People. Priorities of Care for the Dying Person. [Online].; 2014 [cited 2015 May 22. Available from: _-_with_prompts_for_practice.pdf. 5. General Medical Council. Treatment and care towards the end of life: good practice in decision making. [Online].; 2010 [cited 2015 May 22. Available from: 6. NHS Wales. All Wales Care Pathway for the Last Days of Life. [Online].; 2010 [cited 2015 May 26. Available from: 0the%20Last%20Days%20of%20Life.pdf. 7. General Medical Council. End of life care: When to consider making a Do Not Attempt CPR (DNACPR) decision. [Online].; 2015 [cited 2015 June 06. Available from: 8. World Health Organisation. WHO's cancer pain ladder for adults. [Online].; 2015 [cited 2015 June 4. Available from: 9. NHS. Consent to treatment - Capacity. [Online].; 2014 [cited 2016 June 4. Available from: The Leadership Alliance for the Care of Dying People. Priorities for Care of the Dying Person. [Online].; 2014 [cited 2015 May 22. Available from: Pain Europe. WHO analgesic ladder. [Online].; 2012 [cited 2015 June 4. Available from: 28