Clinical case scenarios for improving donor identification and consent rates for deceased organ donation

Transcription

1 Organ donation Clinical case scenarios for improving donor identification and consent rates for deceased organ donation April 2012 NICE clinical guideline 135

2 These clinical case scenarios accompany the clinical guideline: Organ donation for transplantation: improving donor identification and consent rates for deceased organ donation (December 2011). Issue date: April 2012 This is a support tool for implementation of the NICE guidance. It is not NICE guidance. Implementation of the guidance is the responsibility of local commissioners and/or providers. Commissioners and providers are reminded that it is their responsibility to implement this guidance, in their local context, in light of their duties to avoid unlawful discrimination and to have regard to promoting equality of opportunity. Nothing in the guidance should be interpreted in a way that would be inconsistent with compliance with those duties. What do you think? Did this tool meet your requirements, and did it help you put the NICE guidance into practice? We value your opinion and are looking for ways to improve our tools. Please complete this short evaluation form If you are experiencing problems using this tool, please implementation@nice.org.uk National Institute for Health and Clinical Excellence Level 1A, City Tower, Piccadilly Plaza, Manchester M1 4BT National Institute for Health and Clinical Excellence, All rights reserved. This material may be freely reproduced for educational and not-for-profit purposes. No reproduction by or for commercial organisations, or for commercial purposes, is allowed without the express written permission of NICE. Clinical case scenarios: Organ donation (December 2011) Page 2 of 49

3 Introduction... 4 NICE clinical case scenarios... 4 Organ donation... 5 Learning objectives... 6 Clinical case scenarios for emergency departments... 7 Case scenario 1: Mary... 7 Case scenario 2: Benjamin Clinical case scenarios for adult intensive care units Case scenario 3: Eric Case scenario 4: Janet Case scenario 5: Rupert Case scenario 6: Ahmed Clinical case scenario for paediatric intensive care units Case scenario 7: Peter Summary of all the recommendations Glossary Other implementation tools Useful resources from other organisations Acknowledgements Clinical case scenarios: Organ donation (December 2011) Page 3 of 49

4 Introduction NICE clinical case scenarios Clinical case scenarios are an educational resource that can be used for individual or group learning. Each question should be considered by the individual or group before referring to the answers. These six clinical case scenarios have been put together to improve your knowledge of organ donation and its application in practice. They illustrate how the recommendations from Organ donation for transplantation: improving donor identification and consent rates for deceased organ donation (NICE clinical guideline 135) can be applied to the care of patients who may be potential organ donors. The clinical case scenarios are available in two formats: this PDF, which can be used for individual learning, and a slide set that can be used for groups. Slides from the clinical case scenario slide set can be added to the standard NICE slide set produced for this guideline. You will need to refer to the NICE clinical guideline to help you decide what steps you would need to follow to diagnose and manage each case, so make sure that users have access to a copy (either online or as a printout). You may also want to refer to the organ donation NICE pathway. Each case scenario includes details of the person s initial presentation, their medical history and their clinician s summary of the situation after examination. The clinical decisions about diagnosis and management are then examined using a question and answer approach. The recommendations from the NICE guideline are quoted in the summary of all of the recommendations section on page 35. Clinical case scenarios: Organ donation (December 2011) Page 4 of 49

5 Organ donation A significant proportion of people in England and Wales wish to donate their organs for transplantation after death. The NICE clinical guideline recognises the complexities that arise from the majority of potential donors lacking the capacity to be directly involved in decision making at the time of their death. The guideline seeks to promote the identification and fulfilment of these wishes by: more effective and expedient identification and referral of potential organ donors a more informed, considered and timely approach to consent for donation that is based primarily on identifying the wishes of the individual whenever known and however recorded. The General Medical Council (GMC) guidance Treatment and care towards the end of life: good practice in decision making 1 states that consultant staff who have clinical responsibility for patients who are potential donors have a duty to consider organ donation as part of end-of-life care. 1 Available from Clinical case scenarios: Organ donation (December 2011) Page 5 of 49

6 Learning objectives By the end of these scenarios, you should: - be able to identify the difference between the management of potential cardiac and brain stem dead donors - understand when to refer to the specialist nurse for organ donation - be able to identify the measures taken to assess whether delay is in the patients best interests e.g. whether the person is registered on the NHS organ donation register. - consider the information and support that may be needed by those close to the patient Clinical case scenarios: Organ donation (December 2011) Page 6 of 49

7 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) department. 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. Mary's husband and daughter have not yet arrived at the hospital and are unaware of the seriousness of her condition. She is examined by the neurosurgeons, who decide that surgical intervention would be of no benefit. The decision is made to withdraw treatment. 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. Next steps for management 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. Clinical case scenarios: Organ donation (December 2011) Page 7 of 49

8 1.1 Question Mary is still in the ED. In view of this, should organ donation be discussed with the family? Clinical case scenarios: Organ donation (December 2011) Page 8 of 49

9 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. NB. For relevant recommendations see summary of all of the recommendations on page 35 Next steps for management 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? Clinical case scenarios: Organ donation (December 2011) Page 9 of 49

10 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. NB. For relevant recommendations see summary of all of the recommendations on page 35 Supporting information What will happen if relatives object? We know that in most cases families will agree to donation if they know that was their loved one s wish. If the family, or those closest to the person who has died, object to the donation when the person who has died has given their explicit permission, either by telling relatives, close friends or clinical staff, or by carrying a donor card or registering their wishes on the NHS organ donor register, healthcare professionals should discuss the matter sensitively with them. They will be encouraged to accept the dead person s wishes and it will be made clear that they do not have the legal right to veto or overrule those wishes. There may, nevertheless, be cases where it would be inappropriate for donation to go ahead. Next steps for management 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? Clinical case scenarios: Organ donation (December 2011) Page 10 of 49

11 1.3 Answer Yes. The patient should be clinically stabilised in an appropriate critical care setting while the assessment for donation is performed. NB. For relevant recommendations see summary of all of the recommendations on page Question At what stage should discussion with the family take place regarding organ donation? Clinical case scenarios: Organ donation (December 2011) Page 11 of 49

12 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. 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. NB. For relevant recommendations see summary of all of the recommendations on page 35 Clinical case scenarios: Organ donation (December 2011) Page 12 of 49

13 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. 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. Next steps for management 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? Clinical case scenarios: Organ donation (December 2011) Page 13 of 49

14 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 NB. For relevant recommendations see summary of all of the recommendations on page Question Was this a missed potential donor? Clinical case scenarios: Organ donation (December 2011) Page 14 of 49

15 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. NB. For relevant recommendations see summary of all of the recommendations on page Question Should this patient have been a donor after circulatory death (DCD) or donor after brainstem death (DBD)? Clinical case scenarios: Organ donation (December 2011) Page 15 of 49

16 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. 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. NB. For relevant recommendations see summary of all of the recommendations on page 35 Clinical case scenarios: Organ donation (December 2011) Page 16 of 49

17 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. 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. 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? Clinical case scenarios: Organ donation (December 2011) Page 17 of 49

18 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. NB. For relevant recommendations see summary of all of the recommendations on page 35 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? Clinical case scenarios: Organ donation (December 2011) Page 18 of 49

19 3.2 Answer All potential organ donors should be identified as early as possible, using a systematic approach. NB. For relevant recommendations see summary of all of the recommendations on page 35 Supporting information One approach would be to identify all patients in intensive care with a lifelimiting condition in whom there is the intention to withdraw life-sustaining treatment, with the expectation that circulatory death will follow. Next steps 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? Clinical case scenarios: Organ donation (December 2011) Page 19 of 49

20 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. NB. For relevant recommendations see summary of all of the recommendations on page 35 Supporting information Good communication between healthcare professionals and people is essential. It should be supported by evidence-based written information tailored to the person s needs. The information people are given about their care should be culturally appropriate. It should also be accessible to people with additional needs such as physical, sensory or learning disabilities, and to people who do not speak or read English. Parents, families and guardians should also be given the information and support they need. 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? Clinical case scenarios: Organ donation (December 2011) Page 20 of 49

21 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. In England and Wales a child is defined as being under the age of 18. There is no minimum age for joining the organ donor register. Parents may register their children and children may register themselves as long as they are regarded as having mental capacity. It is assumed that people aged 16 years or older have the full legal capacity to make decisions for themselves (Mental Capacity Act, 2005) unless it can be demonstrated that they lack the capacity to make a decision for themselves at the time the decision needs to be made, for example if they are on a ventilator. In this situation, or if a young person s wishes are not known, permission may be sought from those in the closest qualifying relationship, which in this case would be the parents. Alternatively, advance statements are a way for people to exercise their right to refuse or consent to medical treatment in anticipation of a time when they may lose their capacity to communicate that decision. In young people with a mental capacity under the age of 18 years, advance statements should be taken into account wherever possible but are not legally binding. The Children s Act 1989 also emphasises that the views of minors should be taken into account when considering their welfare. Many young people with life-limiting conditions are encouraged to consider advance statements, and such plans should include views on organ donation. An advance statement of a young person may be overridden by someone with parental responsibility for them. NB. For relevant recommendations see summary of all of the recommendations on page Question It becomes apparent that Eric has made an advance statement. What obligation are the medical team under to follow his wishes? Clinical case scenarios: Organ donation (December 2011) Page 21 of 49

22 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. NB. For relevant recommendations see summary of all of the recommendations on page 35 Supporting information An advance statement A set of instructions given in advance by individuals specifying what actions should be taken for their health in the event that they are no longer able to make decisions due to illness or incapacity. It does not always have to be written down, although most are. Clinical case scenarios: Organ donation (December 2011) Page 22 of 49

23 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. 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. Next steps for management 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? Clinical case scenarios: Organ donation (December 2011) Page 23 of 49

24 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. NB. For relevant recommendations see summary of all of the recommendations on page 35 Next steps for management 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? Clinical case scenarios: Organ donation (December 2011) Page 24 of 49

25 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. NB. For relevant recommendations see summary of all of the recommendations on page 35 Next steps 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? Clinical case scenarios: Organ donation (December 2011) Page 25 of 49

26 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. NB. For relevant recommendations see summary of all of the recommendations on page 35 Clinical case scenarios: Organ donation (December 2011) Page 26 of 49

27 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. 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 life-sustaining 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. Medical history Fractured right femur 20 years ago. Drinks approximately 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. 5.1 Question Rupert s wife is very upset. Should she be approached about organ donation? Clinical case scenarios: Organ donation (December 2011) Page 27 of 49

28 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. NB. For relevant recommendations see summary of all of the recommendations on page 35 Next steps 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? Clinical case scenarios: Organ donation (December 2011) Page 28 of 49

29 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. NB. For relevant recommendations see summary of all of the recommendations on page Question Who should approach Rupert s wife about organ donation? Clinical case scenarios: Organ donation (December 2011) Page 29 of 49

30 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. NB. For relevant recommendations see summary of all of the recommendations on page 35 Clinical case scenarios: Organ donation (December 2011) Page 30 of 49

31 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. 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. 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. 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? Clinical case scenarios: Organ donation (December 2011) Page 31 of 49

32 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. 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. NB. For relevant recommendations see summary of all of the recommendations on page 35 Next steps 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? Clinical case scenarios: Organ donation (December 2011) Page 32 of 49

33 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? NB. For relevant recommendations see summary of all of the recommendations on page 35 Clinical case scenarios: Organ donation (December 2011) Page 33 of 49

34 Supporting information (An example of support available) NHS Blood and Transplant s Black and Asian Organ Donation Campaign aims to tackle the shortage of black and Asian organ donors and encourage people from black and Asian communities to join the NHS organ donor register. The campaign promotes discussion between those that have registered and their families to help ensure that their choices are honoured at the critical time. A range of materials is available including: real life stories religious leaflets NHS Blood and Transplant has worked with Buddhist, Christian, Hindu, Muslim, Jewish and Sikh religious leaders to produce a series of leaflets explaining religious viewpoints and principles relating to organ donation. Good communication between healthcare professionals and people is essential. It should be supported by evidence-based written information tailored to the person's needs. The information people are given about their care should be culturally appropriate. It should be accessible to people with additional needs such as physical, sensory or learning disabilities, and to people who do not speak or read English. Parents, families and guardians should also be given the information and support they need. Clinical case scenarios: Organ donation (December 2011) Page 34 of 49

35 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. 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. 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? Clinical case scenarios: Organ donation (December 2011) Page 35 of 49

36 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. NB. For relevant recommendations see summary of all of the recommendations on page 35 Next steps for management 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? Clinical case scenarios: Organ donation (December 2011) Page 36 of 49

37 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 2, 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. NB. For relevant recommendations see summary of all of the recommendations on page 35 Supporting information This death should be reported to the coroner. It seems to have arisen in the course of a sudden tragic accident but there may be issues relating to neglect by those with parental responsibility for the child. The coroner has jurisdiction over the body and all that pertains to it. Next steps 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? 2 Available from Clinical case scenarios: Organ donation (December 2011) Page 37 of 49

38 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 openended questions and positive language, such as by becoming an organ donor, your son has the opportunity to save the lives of other children. NB. For relevant recommendations see summary of all of the recommendations on page 35 Clinical case scenarios: Organ donation (December 2011) Page 38 of 49

39 Summary of all the recommendations Identifying patients who are potential donors Organ donation should be considered as a usual part of 'end-of-life care' planning Identify all patients who are potentially suitable donors as early as possible, through a systematic approach. While recognising that clinical situations vary identification should be based on either of the following criteria: defined clinical trigger factors in patients [2] who have had a catastrophic brain injury, namely: o o the absence of one or more cranial nerve reflexes and a Glasgow Coma Scale (GCS) score of 4 or less that is not explained by sedation unless there is a clear reason why the above clinical triggers are not met (for example because of sedation) and/or a decision has been made to perform brainstem death tests, whichever is the earlier the intention to withdraw life-sustaining treatment in patients with a lifethreatening or life-limiting condition which will, or is expected to, result in circulatory death 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 criteria in recommendation are met. Patients who have capacity In circumstances where a patient has the capacity to make their own decisions, obtain their views on, and consent to, organ donation [3]. Assessing best interests If a patient lacks capacity to make decisions about their end-of life-care, seek to establish whether taking steps, before death, to facilitate organ donation would be in the best interests of the patient. Clinical case scenarios: Organ donation (December 2011) Page 39 of 49

40 1.1.6 While assessing the patient's best interests clinically stabilise the patient in an appropriate critical care setting while the assessment for donation is performed for example, an adult intensive care unit or in discussion with a regional paediatric intensive care unit (see recommendation 1.1.8) Provided that delay is in the patient's overall best interests, life-sustaining treatments should not be withdrawn or limited until the patient's wishes around organ donation have been explored and the clinical potential for the patient to donate has been assessed in accordance with legal and professional [4],[5] guidance In assessing a patient's best interests, consider: the patient's known wishes and feelings, in particular any advance statement or registration on the NHS organ donor register [6] but also any views expressed by the patient to those close to the patient the beliefs or values that would be likely to influence the patient's decision if they had the capacity to make it any other factors they would be likely to consider if they were able to do so the views of the patient's family, friends and anyone involved in their care as appropriate as to what would be in the patient's best interests; and anyone named by the patient to be consulted about such decisions. Seeking consent to organ donation If a patient lacks the capacity to consent to organ donation seek to establish the patient's prior consent by: referring to an advance statement if available establishing whether the patient has registered and recorded their consent to donate on the NHS organ donor register [5] and exploring with those close to the patient whether the patient had expressed any views about organ donation If the patient's prior consent has not already been ascertained, and in the absence of a person or persons having been appointed as nominated representative(s), consent for organ donation should be sought from those in a qualifying relationship with the patient. Where a nominated representative has been appointed and the person had not already made a decision about donation prior to Clinical case scenarios: Organ donation (December 2011) Page 40 of 49

41 their death, then consent should be sought after death from the said nominated representative(s). Approach to those close to the patient The multidisciplinary team A multidisciplinary team (MDT) should be responsible for planning the approach and discussing organ donation with those close to the patient The MDT should include: the medical and nursing staff involved in the care of the patient, led throughout the process by an identifiable consultant the specialist nurse for organ donation local faith representative(s) where relevant Whenever possible, continuity of care should be provided by team members who have been directly involved in caring for the patient 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 (see recommendations and ). Discussions in all cases Before approaching those close to the patient: 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 clarify coronial, legal and safeguarding issues Before approaching those close to the patient, try to seek information on all of the following: knowledge of the clinical history of the patient who is a potential donor identification of key family members Clinical case scenarios: Organ donation (December 2011) Page 41 of 49

42 assessment of whether family support is required for example faith representative, family liaison officer, bereavement service, trained interpreter, advocate identification of other key family issues identification of cultural and religious issues that may have an impact on consent Approach those close to the patient in a setting suitable for private and compassionate discussion Every approach to those close to the patient should be planned with the MDT and at a time that suits the family's circumstances In all cases those close to the patient should be approached in a professional, compassionate and caring manner and given sufficient time to consider the information Discussions about organ donation with those close to the patient should only take place when it has been clearly established that they understand that death is inevitable or has occurred When approaching those close to the patient: discuss with them that donation is a usual part of the end-of-life care use open-ended questions for example 'how do you think your relative would feel about organ donation?' use positive ways to describe organ donation, especially when patients are on the NHS organ donor register or they have expressed a wish to donate during their lifetime for example 'by becoming a donor your relative has a chance to save and transform the lives of many others' avoid the use of apologetic or negative language (for example 'I am asking you because it is policy' or 'I am sorry to have to ask you') The healthcare team providing care for the patient should provide those close to the patient who is a potential donor with the following, as appropriate: assurance that the primary focus is on the care and dignity of the patient (whether the donation occurs or not) Clinical case scenarios: Organ donation (December 2011) Page 42 of 49

43 explicit confirmation and reassurance that the standard of care received will be the same whether they consider giving consent for organ donation or not the rationale behind the decision to withdraw or withhold life-sustaining treatment and how the timing will be coordinated to support organ donation a clear explanation of, and information on: o o o o o the process of organ donation and retrieval, including post-retrieval arrangements what interventions may be required between consent and organ retrieval where and when organ retrieval is likely to occur how current legislation applies to their situation [7], including the status of being on the NHS organ donor register or any advance statement how the requirements for coronial referral apply to their situation consent documentation reasons why organ donation may not take place, even if consent is granted Allow sufficient time for those close to the patient to understand the inevitability of the death or anticipated death and to spend time with the patient Discuss withdrawal of life-sustaining treatment or neurological death before, and at a different time from, discussing organ donation unless those close to the patient initiate these discussions in the same conversation For discussions where circulatory death is anticipated, provide a clear explanation on: what end-of-life care involves and where it will take place for example, theatre, critical care department how death is confirmed and what happens next what happens if death does not occur within a defined time period For discussions where neurological death is anticipated, provide a clear explanation on: how death is diagnosed using neurological criteria how this is confirmed and what happens next. Clinical case scenarios: Organ donation (December 2011) Page 43 of 49

44 Organisation of the identification, referral and consent processes Each hospital should have a policy and protocol that is consistent with these recommendations for identifying patients who are potential donors and managing the consent process Each hospital should identify a clinical team to ensure the development, implementation and regular review of their policies Adult and paediatric intensive care units should have a named lead consultant with responsibility for organ donation The MDT involved in the identification, referral to specialist nurse for organ donation, and consent should have the specialist skills and competencies necessary to deliver the recommended process for organ donation outlined in this guideline 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 identification, referral to specialist nurse for organ donation, and consent processes should: have knowledge of the basic principles and the relative benefits of, donation after circulatory death (DCD) versus donation after brainstem death (DBD) understand the principles of the diagnosis of death using neurological or cardiorespiratory criteria and how this relates to the organ donation process be able to explain neurological death clearly to families understand the use of clinical triggers to identify patients who may be potential organ donors understand the processes, policies and protocols relating to donor management adhere to relevant professional standards of practice regarding organ donation and end-of-life care Consultant staff should have specific knowledge and skills in: the law surrounding organ donation medical ethics as applied to organ donation Clinical case scenarios: Organ donation (December 2011) Page 44 of 49