38 Death and the dying patient

Procedures vary internationally. In the UK, assessment of brain stem reflexes must be performed by two doctors registered for >5 years, competent in the field of brain stem death testing, and not members of the transplant team. At least one should be a consultant. An EEG is required in other countries.

Pupils should appear fixed in size and fail to respond to a light stimulus.

These should be absent bilaterally.

There should be no cranial or limb response to supraorbital pain.

After confirming that the tympanic membranes are clear, unobstructed, and non‐perforated, 20mL iced water is syringed into the ear. The eyes would normally deviate toward the opposite direction. Absence of movement to bilateral cold stimulation confirms an absent reflex.

The gag reflex is absent in brain stem death. However, the gag reflex is often lost in patients who are intubated. In these patients, cough reflex in response to bronchial stimulation must be absent.

While the reflex assessments are being performed, the patient should be pre‐oxygenated with 100% oxygen. Disconnect the ventilator and pass 6L/min oxygen into the trachea via a catheter. Apnoeic oxygenation can sustain SaO₂ for prolonged periods, but there is an inevitable rise in PaCO₂ which should stimulate respiratory effort. After 3–15min of disconnection, blood gas analyses are performed until PaCO₂ >6.65kPa. Any respiratory effort negates the diagnosis of brain stem death.

Death is not pronounced until the second test has been completed, but the legal time of death is when the first test indicates brain stem death.

Blood gas analysis, p154; EEG/CFM monitoring, p204; Electrolytes (Na⁺, K⁺, Cl⁻, HCO₃  ⁻), p212; Toxicology, p224; Hypoglycaemia, p600; Hypothermia, p606; Care of the potential organ/tissue donor, p656.

This is arguably the most difficult and stressful decision that has to be made for the critically ill patient.

Before approaching the patient/family, there should be a consensus among medical and nursing staff that quantity and/or quality of life are significantly compromised and unlikely to recover. Often, the patient's viewpoint is very well‐defined and carers may rue the fact that the discussion was not initiated earlier.

Ethnic, cultural, and religious factors will influence both doctor and patient/family in the timing and frequency of such decisions. In some societies, doctors have a more paternalistic approach with little involvement of patient and/or family in the decision‐making process. Others are overly inclusive, sometimes to the point of excessively acquiescing to the family's demands despite obvious futility in continuing care. Clearly, a balance needs to be struck that serves the best interests of the patient.

Although potentially awkward, the mentally competent patient should be involved as this is the most important decision affecting their life. This should be done as considerately as possible, avoiding unnecessary distress. A series of discussions may be needed over several days, allowing time to contemplate. Consensus is reached with >95% of patients/families by the third discussion.

It should be stressed that care is not being withdrawn/withheld; pain relief, comfort, hydration, and general nursing care will be continued. Likewise, decisions are not final, but can be amended depending on the patient's progress, e.g. moving from withholding to withdrawal or re‐institution of full treatment. A ‘negotiated settlement’ is often a useful interim compromise for families unable to accept a withdrawal decision, whereby limitation of treatment is instituted and subsequently reviewed.

Relatives can sometimes be very distraught and, occasionally, irrational on discussing withdrawal/withholding. For many, this will be their first experience of the dying process in a loved family member. A number of other factors, including guilt, anger, and within‐family disagreements may also surface. It should be stressed that the withdraw/withhold decision is a medical recommendation and their passive agreement is being sought. The emphasis of the discussion is to inform them of the likely outcome and to seek their view of what the patient would want. They need to be dealt with both sensitively and honestly, and they should not feel pressured to give instant decisions.

Discussions should involve the patient's nurse and other involved carers as appropriate. It should be accurately documented in the case notes to ensure good communication between caregivers and act as source data should subsequent complaints surface.

Communication, p18.

Patients with suspected brain stem death should be considered candidates for organ or tissue donation. Tissue donation is excluded if there is:

There are few absolute contraindications to solid organ donation:

The transplant coordinator should be contacted early (before the family is approached) to confirm likely suitability. If the family is amenable, the transplant coordinator will then initiate organ donation procedures. Do not reject brain dead potential donors who, for example, have fully treated infections or acute renal failure without consultation with the transplant coordinator.

The transplant coordinator will advise on other organ and tissue suitability, e.g. pancreas, trachea, bowel, skin.

Solid organs suitable for transplantation from non‐heart beating donors include kidneys, livers, and lungs. Tissue donation (e.g. corneas, etc.) should also be considered in asystolic cadaveric donors. Contraindications are similar to those for brain stem dead heart‐beating donors. Consideration of non‐heart beating donation should be made in all patients in whom treatment is to be withdrawn.

IPPV—adjusting the ventilator, p50; Positive end expiratory pressure (1), p66; Positive end expiratory pressure (2), p68; Chest physiotherapy, p90; Blood gas analysis, p154; Full blood count, p220; Coagulation monitoring, p222; Virology, serology and assays, p226; Blood transfusion, p248; Vasopressors, p268; Hypothermia, p600; Brain stem death, p652.