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Organ Donation Support for education and learning Clinical case scenarios April 2012 NICE clinical guideline 135 What this presentation covers • Background • Aim of the guideline • Clinical case scenario(s) for o o o emergency departments (1 & 2) adult intensive care units (3 to 6) paediatric intensive care units (7) • Find out more Background • 90% of the population support organ donation but actual donation rate is poor • Organ donation has a major role in the management of organ failure • Too few organs means long waits, costly treatment and many potentially avoidable deaths. Aim of the guideline To promote the identification and fulfilment of those that wish to donate organs To improve: • identification and referral of potential donors • approach to consent for donation • consideration of donation as part of standard ‘end-of-life care’ planning Clinical case scenarios for Emergency departments Case scenario 1, Mary Presentation Mary is a 56-year-old woman who collapses at home. An ambulance is called, arriving 8 minutes after the initial collapse and finding Mary unconscious with laboured breathing. A BASICS (British Association of Immediate Care) trained doctor gives a bolus of sedative; then Mary is intubated, ventilated and transferred to the local emergency department (ED). During the journey her pupils become dilated and fixed; she is hypertensive then becomes hypotensive. After arriving at the ED she has a computed tomography (CT) scan, which shows extensive subarachnoid haemorrhage. No additional sedation has been given since intubation. Case scenario 1, Mary Medical history Mary smokes 20 cigarettes a day and drinks 6 units of alcohol at the weekend. She is currently monitored by her GP for raised blood pressure but has not been prescribed any therapy. She had a breast lump removed 3 years ago; the histology report showed it to be a benign tumour. On examination On initial neurological examination Mary’s pupils remain fixed and dilated, there is no cough or gag reflex on deep endotracheal suction, and there is no response to painful stimuli other than extensor posturing of limbs. Case scenario 1, Mary In view of the plan of care, treatment will be maintained until the relatives have arrived and been informed of the gravity of the situation. 1.1 Question Mary is still in the ED. In view of this, should organ donation be discussed with the family? Case scenario 1, Mary 1.1 Answer Yes. Organ donation should be considered as a usual part of ‘end-of-life care’ planning regardless of where the patient receives treatment. Emergency care staff should request that the adult intensive care unit take over the care of this patient. Case scenario 1, Mary The decision to withdraw treatment has been made. However, the patient’s clinical presentation indicates that she could be brainstem dead. She has joined the NHS organ donor register, stating her wish that all organs be donated. 1.2 Question Should neurological testing be used to confirm death, or should treatment be withdrawn and death confirmed using circulatory criteria? Case scenario 1, Mary 1.2 Answer Patients with suspected brainstem death usually have this confirmed by brainstem testing. However, the patient has expressed her wish to donate all organs, and confirming death using neurological criteria could enable more organs to be donated. The healthcare team caring for the patient should initiate discussions about potential organ donation with the specialist nurse for organ donation. The patient’s wishes support the decision to use neurological testing. Case scenario 1, Mary Neurological testing is undertaken. There is no available space in the emergency department so an intensive care unit bed is requested. 1.3 Question Should this patient be accepted by the intensive care unit, given that they are going there for only neurological testing and assessment for organ donation? Case scenario 1, Mary 1.3 Answer Yes. The patient should be clinically stabilised in an appropriate critical care setting while the assessment for donation is performed. Case scenario 1, Mary 1.4 Question At what stage should discussion with the family take place regarding organ donation? Case scenario 1, Mary 1.4 Answer The family should be approached only when it is clearly established that they understand that death is inevitable or has occurred. Sufficient time should be allowed for Mary’s husband and daughter to understand the inevitability of her anticipated death. They should be given a clear explanation about confirming neurological and circulatory death using specific criteria. The approach should be planned and at a time that suits the family’s circumstances, and should be made by the multidisciplinary team (MDT), including the specialist nurse for organ donation. Continues on slide 16 Case scenario 1, Mary 1.4 Answer, continued The MDT involved in the initial approach should have the necessary skills and knowledge to provide to those close to the patient appropriate support and accurate information about organ donation, informing them that donation is a usual part of end-of-life care. Those approaching the family should assess what family support may be needed, for example local faith representative, family liaison officer, bereavement service, trained interpreter or advocate. Case scenario 2, Benjamin Presentation Benjamin is a 17-year-old young man admitted to the emergency department after being knocked off his bicycle. He has multiple trauma, with fractures to his left leg and arm, multiple fractures of his ribs and severe head trauma. He has been intubated and ventilated by the paramedics. Case scenario 2, Benjamin Medical history None relevant. He is a fit young man. On examination A CT scan shows intraventricular bleeding, subarachnoid haemorrhage and right subdural haematoma. Chest nil. There is a small amount of free floating fluid in the abdomen and the left base of a chest X-ray is hazy. A 12-lead electrocardiogram (ECG) is normal. Case scenario 2, Benjamin Benjamin is referred to neurosurgeons, who decide that no intervention is applicable. Treatment is withdrawn after discussion with the family. Benjamin is asystolic 10 minutes after withdrawal of treatment. 2.1 Question Should this patient have been identified and referred as a potential donor? Case scenario 2, Benjamin 2.1 Answer Yes. All patients who are potentially suitable donors should be identified as early as possible, through a systematic approach. While recognising that clinical situations vary identification should be based on either of the following criteria, see recommendation 1.1.2.(see notes) Case scenario 2, Benjamin 2.2 Question Was this a missed potential donor? Case scenario 2, Benjamin 2.2 Answer Yes. On checking the organ donor register the patient was found to be registered to donate all organs. The family was not asked about organ donation and the patient was not referred to the specialist nurse for organ donation. If a patient lacks capacity to make decisions about their end-of-life care, the healthcare team should seek to establish whether taking steps, before death, to facilitate organ donation would be in the best interests of the patient. Life-sustaining treatments should not be withdrawn or limited until the clinical potential for the patient to donate has been assessed, in accordance with legal and professional guidance. Case scenario 2, Benjamin 2.3 Question Should this patient have been a donor after circulatory death (DCD) or donor after brainstem death (DBD)? Case scenario 2, Benjamin 2.3 Answer This patient could have been potentially either. The patient should be clinically stabilised in an appropriate critical care setting while an assessment for donation is performed – for example, in an adult intensive care unit or in discussion with a regional paediatric intensive care unit. The MDT involved in the initial approach should have the necessary skills and knowledge to provide to those close to the patient appropriate support and accurate information about organ donation. Continues on slide 25 Case scenario 2, Benjamin 2.3 Answer continued The skills and competencies required of the individual members of the team will depend on their role in the process. However, all healthcare professionals involved in the identification and referral of potential donors to the specialist nurse for organ donation, and the subsequent consent processes, should have knowledge of the basic principles, and the relative benefits, of donation after circulatory death versus donation after brainstem death. The team should ensure that brainstem tests are performed if possible because this gives the family of a potential donor the certainty of a diagnosis of death and also allows more organs to be used than after circulatory death. Clinical case scenarios for Adult intensive care units Case scenario 3, Eric Presentation Eric is a 17-year-old young man with Duchenne muscular dystrophy, admitted with severe pneumonia to the adult intensive care unit. Past medical history Eric was diagnosed with Duchenne muscular dystrophy at the age of 7 years. He has been in a wheelchair since the age of 10, and has had progressive respiratory failure since he was 12. He has used domiciliary night-time mask ventilation since he was 14 and had scoliosis surgery at 16. He has had worsening cardiorespiratory failure for 18 months and two admissions to the adult intensive care unit in the past 12 months. Case scenario 3, Eric On examination Eric has severe neuromuscular weakness. The adult intensive care unit team makes two failed attempts to extubate him back to mask ventilation. The consultant considers successful long-term separation from the ventilator unlikely. His parents tell the nursing staff that they think their son will never come off the ventilator and that they do not wish him to suffer any more 3.1 Question Might this young man be considered as a potential organ donor? Case scenario 3, Eric 3.1 Answer Yes. Organ donation should be considered as a usual part of end-of-life care planning in all children with life-limiting conditions Next steps The nursing staff tell the intensive care consultant about the family’s views and consideration is given to withdrawing life-sustaining respiratory support 3.2 Question How might the potential for organ donation be realised in this patient? Case scenario 3, Eric 3.2 Answer All potential organ donors should be identified as early as possible, using a systematic approach. Case scenario 3, Eric The nursing staff report that Eric’s parents have made enquiries about organ donation. 3.3 Question While Eric’s and the family’s wishes regarding organ donation are being assessed, how should Eric be cared for, and where should this care be delivered? Case scenario 3, Eric 3.3 Answer Eric should remain stabilised in an appropriate critical care setting. Consideration should be given to discussing his management with the regional paediatric intensive care unit. A dialogue with the tertiary paediatric centre may also clarify details relating to other relevant comorbidities, such as significant cardiac failure and the ability to donate certain organs. Case scenario 3, Eric 3.4 Question The medical team seeks to ascertain whether the young man had expressed any views regarding organ donation. How would they go about this? Case scenario 3, Eric 3.4 Answer The medical team may go about this in any of the following three ways: • ascertain whether or not he had registered to donate on the NHS organ donor register • ascertain whether he had made an advance statement, or • in the absence of an advance statement, ascertain whether he had expressed views on organ donation to his parents. Case scenario 3, Eric 3.5 Question It becomes apparent that Eric has made an advance statement. What obligation are the medical team under to follow his wishes? Case scenario 3, Eric 3.5 Answer If the advance statement is deemed to be valid (that is, Eric was regarded as having mental capacity at the time it was written), the medical team have a duty to take into account his views whenever possible, accepting that they may be overridden by a person with parental responsibility. Case scenario 4, Janet Presentation Janet is a 35-year-old woman admitted to intensive care following an overdose of chloroquine (60 x 250 mg). She is found at home unresponsive. Paramedics are called; they find Janet in asystole, she had aspirated, and begin full advanced life support. She arrives in the emergency department with cardiopulmonary resuscitation in progress, having had four doses of adrenaline, and ventilated. Her estimated down time is 3 hours. A CT head scan shows diffuse hypoxic brain injury and she is transferred to intensive care. Case scenario 4, Janet Medical history Janet has no known GP, so a history is provided by her partner of four months: paracetamol overdose five years ago, drinks at least one bottle of wine and half a bottle of gin per day, smokes 20 cigarettes per day. On examination Both pupils are fixed and dilated, and there is no response to painful stimuli. There is no cough reflex on deep endotracheal suction. Liver function tests are abnormal. Chest X-ray shows bilateral diffuse infiltrate consistent with aspiration. There has been no urine output for the past 5 hours. She is hypotensive, with a blood pressure of 70/30 mmHg for 6 hours despite active treatment. Case scenario 4, Janet A clinical decision is made that no further treatment should be instigated. No family is known. The coroner agrees that consideration for organ donation can proceed. 4.1 Question Janet does not appear to be a suitable candidate to become a donor. Should she be referred to the specialist nurse for organ donation? Case scenario 4, Janet 4.1 Answer Yes. Consideration for organ donation should be a usual part of ‘end-of-life care’ planning. All patients who are potentially suitable donors should be identified as early as possible. The patient's known wishes and feelings, in particular any advance statement or registration on the NHS organ donor register should be ascertained Case scenario 4, Janet Refer the patient to the specialist nurse for organ donation so that a full assessment can be made of her suitability for organ donation. 4.2 Question Why refer to the specialist nurse for organ donation when the consultant in charge of the patient should be able to make the decision about suitability for donation? Case scenario 4, Janet 4.2 Answer The MDT is responsible for planning the approach for consent and discussing organ donation with those close to the patient. Before approaching those close to the patient the team should identify a patient’s potential for donation in consultation with the specialist nurse for organ donation; check the NHS organ donor register and any advance statements or Lasting Power of Attorney for health and welfare; and clarify coronial, legal and safeguarding issues. Case scenario 4, Janet Janet is referred to the specialist nurse for organ donation. All centres turn her down as a potential organ donor because of poor organ function, prolonged down time, subsequent hypotension and past medical history. 4.3 Question Janet is not a potential organ donor. Do brainstem death tests need to be performed? Case scenario 4, Janet 4.3 Answer Yes. In line with current professional guidelines, if neurological death is anticipated, death should be confirmed using neurological criteria. Relatives should be provided a clear explanation on how death is diagnosed using neurological criteria, how this is confirmed and what happens next Case scenario 5, Rupert Presentation Rupert is a 46-year-old man admitted to the intensive care unit after a motorbike accident. He has trauma to his head and chest. An X-ray shows a depressed fracture to his skull, fractures to both zygomatic bones and multiple fractures of his ribs. He has undergone neurosurgery and is now ventilated. He has not had any sedation for more than 24 hours after surgery and remains deeply unconscious and unresponsive to painful stimuli and has fixed and dilated pupils. He is breathing spontaneously and coughs in response to endotracheal suction. Continues on slide 46 Case scenario 5, Rupert Presentation continued The clinical team does not believe that he will make any meaningful recovery and that it would be in his best interests to withdraw life-sustaining treatment. The consultant has discussed the gravity of the situation with Rupert’s wife and explained that it is in the patient’s best interest to withdraw lifesustaining treatment. She is extremely upset and angry. The consultant is anxious about approaching her for organ donation and is reluctant to refer the patient to the specialist nurse for organ donation. Case scenario 5, Rupert Medical history Fractured right femur 20 years ago. Drinks approximately 20–30 units of alcohol at weekends. On examination Both pupils are fixed and dilated, and there is no response to painful stimuli. Rupert continues to have a cough reflex on deep endotracheal suction. Case scenario 5, Rupert 5.1 Question Rupert’s wife is very upset. Should she be approached about organ donation? Case scenario 5, Rupert 5.1 Answer Yes. Organ donation should be considered as a usual part of ‘end-of-life care’ planning. All patients who are potentially suitable donors should be identified as early as possible. The healthcare team caring for the patient should initiate discussions about potential organ donation with the specialist nurse for organ donation at the time the referral criteria are met. Case scenario 5, Rupert The clinical team makes the decision to withdraw treatments. The team recognises that Rupert is a potential donor after circulatory death. However, this will mean a delay in withdrawing treatment to allow time for the organ retrieval team to travel to the hospital. 5.2 Question Will the delay to treatment withdrawal to support organ donation be in the patient’s best interests? Case scenario 5, Rupert 5.2 Answer If a patient lacks the capacity to make decisions about their end-of-life care, the healthcare team should seek to establish whether taking steps, before death, to facilitate organ donation would be in the best interests of the patient. So long as any delay is in the patient's overall best interests, life-sustaining treatments should not be withdrawn or limited until the potential for the patient to donate has been assessed in accordance with legal and professional guidance. The patient’s wishes also need to be ascertained. Case scenario 5, Rupert 5.3 Question Who should approach Rupert’s wife about organ donation? Case scenario 5, Rupert 5.3 Answer The MDT is responsible for planning the approach. The team should have the necessary skills and knowledge to provide to those close to the patient appropriate support and accurate information about organ donation. The approach to those close to the patient should only be undertaken when it is clearly established that they understand the inevitability of the death. Those approaching the family should assess what family support may be needed, for example a local faith representative, family liaison officer, bereavement service, trained interpreter or advocate. Case scenario 6, Ahmed Presentation Ahmed is a 38-year-old, British Asian man admitted to the intensive care unit after an accident at the building site he works on. He has suffered severe trauma to his head and has also fractured his left clavicle. He has undergone emergency neurosurgery and is now ventilated. A postoperative head CT scan shows extensive brain damage, and although he has not had any sedation for more than 24 hours after surgery he remains deeply unconscious and unresponsive to painful stimuli (Glasgow Coma Score 3) and has fixed and dilated pupils. Continues on slide 55 Case scenario 6, Ahmed Presentation continued The consultant suspects that Ahmed is brain-stem dead, and has discussed the gravity of the situation with Ahmed’s older brother via an interpreter with support from Ahmed’s younger brother who speaks more English. He has explained that nothing more can be done to save Ahmed and that he intends to perform brain-stem death tests later on in the day. They are all extremely upset. Case scenario 6, Ahmed Medical history Torn calf muscle in left leg from sports injury, 12 years ago Social history Ahmed was born in the UK, and lives in a traditional Muslim family with his wife, his parents and his two brothers. On examination Both pupils are fixed and dilated, and there is no response to painful stimuli. There is no cough reflex on deep endotracheal suction. Case scenario 6, Ahmed 6.1 Question The consultant is anxious about approaching Ahmed’s older brother due to the language barrier even with the support of the younger brother and an interpreter. Should he be approached about organ donation? Case scenario 6, Ahmed 6.1 Answer Yes, Organ donation should be considered as a usual part of ‘end-of-life care’ planning. All patients who are potentially suitable donors should be identified as early as possible. Ahmed fulfils the criteria for referral to the specialist nurse for organ donation on the grounds of having a Glasgow Coma Score of 3 and having fixed and dilated pupils. However, organ donation should not be raised with Ahmed’s family until it is clear that they have accepted the inevitability of their loss. Continues on slide 59 Case scenario 6, Ahmed 6.1 Answer continued The team should have the knowledge needed to provide accurate information about organ donation. Identifying important cultural and religious issues before approaching the family may have a substantial effect on their willingness to consent to organ donation. For example, traditional British Asian families may expect discussions to be held with the senior male members of the family rather than the patient’s wife as next of kin. Case scenario 6, Ahmed The healthcare team caring for the patient should initiate discussions about potential organ donation with the specialist nurse for organ donation at the time the referral criteria are met. 6.2 Question How should organ donation be raised with Ahmed’s family? Case scenario 6, Ahmed 6.2 Answer The MDT is responsible for planning the approach. The team should have the necessary skills and knowledge to provide to those close to the patient appropriate support and accurate information about organ donation. The approach to those close to the patient should only be undertaken when it is clearly established that they understand the inevitability of the death. Those approaching the family should assess what family support may be needed, for example a local faith representative, family liaison officer, bereavement service, trained interpreter or advocate. In this case they may consider involving the local Imam. The team should check if Ahmed has • given an advanced statement? • registered on the NHS organ donor register? • discussed his wishes with those close to him? A clinical case scenario for paediatric intensive care units Case scenario 7, Peter Presentation Peter is an 18-month-old baby boy. In the morning his parents awake to find that Peter’s head is trapped between the bars of the bedstead and he is not breathing. They call 999 and are given advice on basic life support over the telephone before transfer to the local hospital emergency department. Peter is intubated and ventilated on arrival, and after the third round of adrenaline, spontaneous circulation returns. Peter is transferred to the regional paediatric intensive care unit, where standard neurointensive care begins, but within 24 hours his pupils are fixed and dilated. A CT brain scan suggests devastating hypoxic-ischaemic brain injury. All sedative infusions are stopped to allow formal neurological examination. Case scenario 7, Peter Medical history None of note, normal development, vaccinations up to date. On examination On initial neurological examination, pupils are fixed and dilated, there is no apparent cough reflex on deep endotracheal suction, and there is no response to painful stimuli other than extensor posturing of limbs. Case scenario 7, Peter 7.1 Question Does this child reach the recommended trigger criteria for the healthcare team to initiate discussions regarding potential organ donation with the specialist nurse for organ donation? Case scenario 7, Peter 7.1 Answer Yes. Peter has had a catastrophic brain injury and has met the following clinical trigger factors: the absence of one or more cranial nerve reflexes, and a Glasgow Coma Scale score of 4 that is not explained by sedation. Case scenario 7, Peter Ventilation and enteral feeding via a nasogastric tube is continued. Neurological testing is repeated 48 hours later and brainstem death is confirmed using standard neurological criteria. 7.2 Question Which other authorities should be informed at this stage? Case scenario 7, Peter 7.2 Answer This death is unexpected because neither the death nor the preceding collapse were anticipated 24 hours before its occurrence (see ‘Working together to safeguard children’, chapter 7). Therefore, the healthcare team should notify the local child death review office and initiate a ‘rapid response’ enquiry. Ideally this should occur on admission of the child to the paediatric intensive care unit so that a scene of incident visit can occur in a timely fashion. Case scenario 7, Peter The rapid response process is followed and a multi-agency home visit led by a consultant community paediatrician takes place. There are no social care concerns. The sleep environment and circumstances of the collapse are assessed and a provisional report is provided for the coroner and pathologist. The hospital consultant paediatrician discusses the case with the coroner, who agrees that the subject of organ donation may be discussed with the family. 7.3 Question How should the MDT plan its approach to discuss organ donation with the family of the child? Case scenario 7, Peter 7.3 Answer Sufficient time should be allowed for the parents to spend time with their son and to understand the inevitability of his death. Discussions regarding neurological death and organ donation should be held at different times, unless the parents initiate these discussions in the same conversation. The MDT should include the medical and nursing staff caring for the patient, the specialist nurse for organ donation. Key family members should be identified before discussions occur and all meetings should take place in a private setting. Use open-ended questions and positive language, such as ‘by becoming an organ donor, your son has the opportunity to save the lives of other children’. Find out more Visit www.nice.org.uk/guidance/CG135 for the: • • • • • • • • guideline NICE pathway quick reference guide ‘Understanding NICE guidance’ costing report and template baseline assessment clinical triggers poster clinical case scenarios (PDF) NB. Not part of presentation What do you think? Did the implementation tool you accessed today meet your requirements, and will it help you to put the NICE guidance into practice? We value your opinion and are looking for ways to improve our tools. Please complete a short evaluation form by clicking here. If you are experiencing problems accessing or using this tool, please email [email protected] To open the links in this slide – right click over the link and choose ‘open hyperlink’.