Sometimes a family may raise the issue of organ or tissue donation especially if they know in advance that their relative has previously expressed a wish to donate and is on the organ donation register. Ideally, organ and tissue donation should be considered as part of end of life care planning (See NICE guidelines, Recommendations).
For health care professionals working in stroke medicine, it would be unusual to be directly involved in discussions about organ donation but tissue donation could be discussed after a death has occurred.
There are different processes for organ and tissue donation.
For solid organ donation (e.g. Kidneys, heart, lung, liver)
Potential donors are those who have had a catastrophic brain injury, namely:
- 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
- or when the intention to withdraw life-sustaining treatment in patients with a life-threatening or life-limiting condition will, or is expected to, result in circulatory death
- where the goals of treatment move from active treatment to enabling a ‘good death’ and then facilitating retrieval of organs – staff in accident and emergency or in intensive care departments have expertise in having sensitive and effective conversations with families about this.
Tissue donation
- Tissue donation can occur when a person has died naturally without major life saving interventions such as ventilation
- Tissue donation is less ‘pressured’ than organ donation as retrieval can take place up to 24 hours after death
- Donation does not delay the funeral and if it was going to, Tissue Services would withdraw
- The ‘donation conversation’ should take place immediately after death
- Check your local policies regarding tissue and organ donation procedures
The following shows the procedures in Scotland.
Tissue and Cornea donation
For any death under the age of 80 years of age. Donation of certain tissues may be possible unless the deceased is known to be HIV, Hep B or Hep C Positive or suffers from dementia.
Please call the Tissue Donor Coordinator on Radio Page No 07659 107 029 for organ donation register status and advice on progressing Tissue Donation.
When families decide to proceed with donation, further information will be required by the Tissue Donor Coordinator including:
- Circumstances of the death and past medical history if available
- Patient details
- Family contact details
- Post-mortem blood samples
- Procurators Fiscal Status
- Requirement to ensure the body is refrigerated within 6 hours of death
- 58-yr old man
- Lorry driver, background hypertension
- Father to 2 children (19, 21)
- Woke up with dense left-sided weakness, neglect and homonynous hemianopia (signs of large right-brain stroke)
- CT Brain scan – showing large area of infarcted tissue with no swelling yet.
- You are worried that he may die in the next 24 hours. It is possible that he may require a hemicraniectomy
- He is very unwell and there is a possibility that he might die
- It is possible that an operation may be required- this may allow him to survive, but it is likely that he will be left with severe disability
Key points to address:
- He is very unwell and may die whatever happens
- He may need an operation that may stop him from dying but leave him severely disabled
The following case study video contains interactive elements. If you are having issues with opening the interactive video, please follow one of the alternative video links below.
This is another fictional scenario based on a real case. This man has had a severe stroke but is not expected to die imminently. Your role is to have an initial conversation with his family, breaking this bad news, gaining their agreement for him to receive thrombolysis and warning them that his recovery might be protracted.
- 70-yr old man previously fit and well
- Recently retired company director, chairman several charities
- Lives with wife, plays golf regularly
- Felt unwell after coming home for lunch after playing golf. Sudden-onset left arm and leg weakness, speech difficulty
- Presents to the emergency department 2 hours post onset
- On examination – left total anterior circulation syndrome with dense weakness and completely aphasic (cannot communicate at all)
- CTB – dense left middle cerebral artery, no other changes
- He may benefit from thrombolysis – you need to discuss with family
Key points to convey:
- He is very unwell and might die
- Exact prognosis uncertain
- Treatment with thrombolysis may help him or cause harm
- The quicker we do thrombolysis, the more likely it is to be effective – and so there is some urgency in making decisions
- Recovery might be protracted
The following case study video contains interactive elements. If you are having issues with opening the interactive video, please follow one of the alternative video links below.
This case is fictional but based on real-life cases.
- 82 year-old female found by carers in the morning
- Brought in by ambulance
- Glasgow Coma Scale 5
- Computed tomography brain shows large intracerebral haemorrhage, midline shift
- Daughter in attendance, son in Canada
- Blood pressure 200/80, pulse 40
- Cheyne Stokes breathing pattern
- Impression: Unsurvivable intracerebral haemorrhage. No treatment options, likely to die within the next few hours.
- Discussion with daughter
Framework for discussion
Within the first few hours of stroke, the priority for communication will generally include discussion about diagnosis, likely prognosis and management. If there is a possibility that the patient may die imminently, then this would need to be communicated promptly but effectively. The first conversation with the family is important to help establish trust.
Here are some tips about the first meeting with a family.
Initial conversation within first few hours of admission.
- Be honest with your perception of the severity of the situation. Do not hesitate to use the word dying is this is imminent or a possibility
- If death is not imminent but likely in the next hours to days, the person is still ‘dying’ and we can talk about how we care for people who are dying. (see NHS Scotland: Palliative Care Guidelines)
- Try and gauge if the person or their family may have preferences for spiritual/religious involvement
- Try to give clear information on what may be likely to happen in the next few hours
- In some settings it is possible to show scan results to explain the seriousness of the stroke
- Probe as to what the family think the patient would want if able to express themselves
- Emphasise the need for family to plan next 24 hours/rest/contacting other family members
- Answer any questions the family may have, and emphasise uncertainty of outcome if appropriate
- Take relevant contact details that suit family arrangements e.g. first contact person/day and night
- Document conversation in medical records and communicate same with clinical team caring for the patient at that time. Be clear about what agreed care and what treatments should and should not be given. If some decisions are still to be made, ensure this is highlighted and will be discussed again at the next meeting with families
- Some families may ask about organ or tissue donation, especially if the person had previously expressed this and is on the organ donation register
- Ensure you have information on how this may be further dealt with at an appropriate time.
Practicalities of the meeting
- Think about seating layout e.g. avoid sitting behind a desk
- Take another member of staff to the meeting if possible
- Body language: use an ‘open’ posture
- It is helpful to take in the medical notes, any scans and possibly the drug chart (families often ask about treatments)
- Use the meeting not only to give information but also to allow the patient/family to share their views, values, concerns and priorities to make informed and shared decision-making. Ask ‘what matters to you most’ after you have told someone they are very ill or maybe dying or have told the family their loved one is very ill or maybe dying
- Find out about the patient/relatives ideas, concerns and expectations
How much information should you give and how should this be given?
- Think about the amount of information the family can process at this stressful or distressing time. They may be in shock
- Keep your explanations clear and as simple as possible
- Small amounts of information at a time are more useful than long speeches
- Give information by using structure like: Ask-Tell-Ask
- Use the Chunk and Pause method. Ask what they understand from what you have just told them as you go along. Allow them time during the meeting to pause and reflect on what you have said
- Always allow time for questions. The questions families ask can inform you about how much of the information you are giving has been taken in
- Be aware that when people are experiencing emotional distress, this can block their ability to hear, process and use the information you are giving
Finally
- Repeat important information to ensure the family have understood that their loved one is dying or unlikely to survive this stroke
- Try to offer a contact number or follow up meeting
- Document who attended and what was discussed and any plans which were agreed including any dates for further meetings
These and other strategies to help have effective and sensitive discussions will be explored in much more detail during the scenarios.
Early conversations are very important and can build a good relationship and increase the family’s confidence in the multidisciplinary team. If communication breaks down early, families may lose trust and confidence in the team. Before your meeting consider:
Information gathering
- Find out as much as you can before the meeting
- What key points should be discussed? Is the information needed available to you?
- Think about using computed tomography (CT) scans or simple diagrams to explain the extent of the stroke if this is appropriate
- Talk to other members of the team before the meeting, they may have information that has been gathered by more informal discussions with the family and patient
- Have test results to hand
- Check in the medical records whether the patient has any other conditions (such as dementia, cardiac problems or cancer) which could affect outcome after stroke
- Consider whether there are urgent decisions which need to be made
Who needs to take part in the discussion?
- If family or friends have power of attorney they are significant in decision making. There may be family members who can only be contacted by telephone. In large families, check if it is acceptable to ask for a family representative to relay information to others. It is helpful to be aware of any conflicts between families members that might make communication and decision making more difficult
- Does the patient have capacity? It should be remembered that capacity is decision specific and healthcare professionals should make every effort to include the patient in decision making if at all possible
- How aware of their deteriorating health and prognosis is this person or their family? Are there clues in the medical notes or would a phone call to their GP help to clarify this before the meeting?
The right environment and timing
- Try to get a private space away from distractions
- What is a good place and time? How long does the meeting need to be? (remember to leave time for questions)
- Leave your bleeper or pager with someone else while you are having this conversation
- Would a series of conversations be better? This is very helpful when the outcome is uncertain. Check when you are available for the next meeting, families are often reassured to know that they will have further opportunities to ask questions
Look at the conversation examples below. Consider whether you think these conversations are more difficult or less difficult for people with stroke than other patients. How the specific problems after stroke might influence decision making and conversations with patient and family will be explored later in the module.
- Sudden onset (often little warning of a severe stroke so patient and family are often in shock with no time to prepare)
- Uncertain prognosis in first hours/days (very common, some patients who may seem to be very ill and at end of life can start to improve, for some the illness trajectory can be very variable)
- Dysphagia (patients who cannot swallow in the early stages can complicate the management and outcome which is difficult for families to understand)
- Speech impairment (when the patient loses speech or communication their family can be uncertain what the person actually wants or needs at end of life)
- Shock and effect on carer (the immediate focus is on the patient but carers can be affected very quickly especially if there are dependent children or others at home. Their role and responsibilities can change significantly after stroke)
- Need for quick decisions when the patient has had a life-threatening stroke (for example, hemicraniotomy or clot retrival)
- Insufficient time to get to know the patient and family (staff have to cope with distressed patient and family who they do not have time to build a relationship with)
- Slow deterioration (more common in chronic conditions than stroke)
- Time to plan for patient’s wishes (when a patient has a chronic condition they may have already discussed their wishes about what they would like to happen at the end-of-life stage in their illness, put in place equipment and services to allow the person to die at home if they wish to)
- Time to appoint power of attorney (people with chronic conditions may have put arrangements in place for power of attorney, will etc)
- Families may have spoken about preferences around death and dying e.g. preferred place of death (some families may have discussed or planned around end of life if the person has a chronic condition)
- Families may have already discussed preferences for life-saving interventions or Cardio Pulmonary Resucitation (GP may have started an Anticipatory Care Plan or made entries on to a KIS summary if the person has a chronic condition)
- Difficulty involving patients (who are too ill) and families (if they are distressed) in discussion of patient preferences/ goals at a time when prognosis is unclear, and preferences may not be known.
As you start this module, take some time to reflect on your own experiences, thoughts and feelings about communication in end-of-life care in your work looking after patients with stroke.
- What are the most difficult aspects of having conversations with patients affected by a stroke and their families?
- How do you ensure good communication within the multi-professional stroke team?
Please complete this self assessment questionnaire. You will be able to compare your answers at the beginning and the end of the module. All your responses are confidential and are for your own learning and reflection. Please answer all questions.
Thinking about loss, death and dying may bring up personal feelings and worries. If this happens, please do ask for support from your manager or an experienced colleague.
