CARE OF THE DYING PATIENT AND THEIR FAMILY

Intensivists are familiar with the care of the dying patient, including the need to avoid suffering and maintain patient dignity. The respect of the intensive care unit (ICU) staff for the humanity of the dying person is expressed in the ‘patient comfort care’ provided by the nursing staff, the continued involvement and attentiveness of the medical staff, and in evident compassion of all staff for the family.¹¹

On behalf of all the treating team, an intensivist should establish rapport during an early meeting (e.g. the morning after admission) with the family of every intensive care patient. This is particularly important for families of patients at high risk of death or disability with whom there will often need to be several ‘bad news’ meetings over several days. Family meetings should be attended by whomsoever the family defines itself to include, by the intensivist, and by a member of the nursing staff supporting the family (preferably the ‘bedside nurse’ looking after the patient). If the family wishes, the meeting might include a chaplain, social worker or cultural health worker. The ‘support’ role should be kept separate from the ‘bearer of bad news’ role. Family meetings should be held in a separate private room large enough to accommodate all the participants, away from the bedside and protected from interruption. With evident compassion¹¹ the intensivist should convey an accurate account of the sequence of events, a realistic prognosis (in as much as this is possible) and the immediate treatment plan. Some families find CT or other visual information helpful. There must be enough time to answer any questions that the family may have. At the end of the meeting the intensivist should ascertain that the family understands what has been said¹¹ and agrees with the immediate plan. Ensuring that all team members give the family congruent messages is an essential part of maintaining the trust of the family in the ICU team. Ideally, one intensivist should speak with the family but where this is impractical it is vital that there be detailed and explicit discussions between one intensivist and another before the next family meeting. A relationship of mutual understanding and trust will enable the ICU team and the family to work together through difficult and painful issues, including withdrawal of intensive therapies,¹² death of the patient and consideration of organ donation.

Many patients who develop apparent loss of brainstem function do so despite continuance of all available surgical and medical therapy. In these circumstances, brain-oriented intensive therapies (including sedatives, opioids, neuromuscular blockers, hypothermia and osmotherapy) should be withheld pending formal assessment of brain death. In order to meet the preconditions for brain death assessment,⁷ extracranial homeostasis must be maintained, and these conditions also preserve the possibility of organ donation in the future.

Withdrawal of intensive therapies is common practice in Australasian ICUs.^12–14 In the setting of severe brain damage this first involves assembling definitive prognostic information. Although neurophysiology and imaging provide important supportive information, a sedative-free clinical assessment of CNS function is an essential aspect of prognostication. During the period of sedative-free CNS assessment, some patients will suffer apparent loss of brainstem function. If brain death does not occur, but devastating brain damage has clearly occurred, those treating the patient (e.g. intensivists, neurosurgeons and others) should achieve a consensus view of prognosis and a recommended treatment plan, which might include withdrawal of intensive treatments (e.g. artificial airway, ventilatory or inotropic support, further neurosurgery). The intensivist should then discuss the prognosis and recommended plan with the family and facilitate a consensus. Withdrawal of treatment may subsequently occur, either because death is seen to be imminent and inevitable or because the likely survival outcome would not be in accord with the patient’s previously expressed wishes or inferred best interests. Such a decision to limit or withdraw treatment is guided by the principles of non-malfeasance and respect for autonomy.¹⁵ It is appropriate to withdraw all intensive therapies from such patients, while continuing to provide ‘comfort care’ to the patient and support to the family.¹⁵

The possibility of future organ donation must have no influence on a decision to limit or withdraw specific brain-oriented therapies. A minority of patients having intensive treatments withdrawn will die within a short period of time (i.e. under 1 hour) and it is in such circumstances that DCD is possible. Some families of dying patients volunteer the view that they (and/or the patient) would wish for organ donation to take place, if that is possible. Such views are commonly conveyed prior to the determination of brain death in patients who seem very likely to become or may already be brain dead, but can also be made when the patient retains brainstem function, and sometimes even prior to a decision that intensive treatments will be withdrawn. They should be sensitively acknowledged by the intensivist, and assurances given that the intensivist will revisit this issue without prompting with the family if and when the clinical circumstances are appropriate. However, the possibility of DCD must not be raised by the treating team prior to a consensus decision of the family and treating team that treatment will be withdrawn.

IDENTIFICATION OF THE POTENTIAL FOR ORGAN DONATION TO OCCUR

Most ICUs admit patients with very severe brain damage whose probability of recovery is low. The rationale for this practice is to identify any (small) subgroup of patients with reversible conditions and provide them with the necessary treatment to facilitate their recovery. There are, however, more extreme situations when the chance of recovery is thought so remote that admission of the patient to ICU would not ordinarily occur. Some intensivists advocate admitting these patients to ICU solely to allow for the future possibility that organ donation may occur, sometimes with accompanying explicit discussion and agreement of the family to such a plan.¹⁶ Although it seems likely¹⁶ that such an utilitarian approach might increase the number of organs available for transplant, ethical,¹⁷ legal¹⁸ and clinical¹⁷ objections to the practice have all been raised.

Organ donation is possible in most situations where brain death has been confirmed. The absolute general contraindications to organ donation are few and present in a small minority of brain-dead patients. They include situations where there is an unacceptably high risk of transmission of malignancy or infection to the recipient, or where the function of the possible donor organs is likely to be unacceptably poor. Most extracerebral malignancies and certain infections (e.g. HIV) are likely to remain absolute contraindications but other donor factors (e.g. advanced age, recent bacterial sepsis,¹⁹ treated HSV encephalitis, positive HCV²⁰ or HBV²⁰ serology, some ‘apparently cured’ malignancies) are no longer absolute contraindications. Intensivists should discuss the specific issue with the appropriate agency (donor coordinator or organ procurement organisation) rather than decide that organ donation is contraindicated on medical grounds. Similarly, the organ-specific contraindications to organ donation have reduced in recent years as the outcomes of recipients transplanted with donor organs formerly rejected have been found to be acceptable.²¹ Finally, all contraindications vary somewhat between transplant centres and continue to change in a more permissive direction. Intensivists should discuss these organ-specific issues with the donor coordinator or appropriate agency before deciding that any particular organ is unsuitable for possible donation and subsequent transplantation. In most jurisdictions an appropriate authority (e.g. a coroner or medical examiner) may legally interdict organ donation under certain circumstances (e.g. homicide) and this issue must also be clarified with the donor coordinator. The donor coordinator will clarify with the transplant teams whether any organ donation is possible and whether particular organs may not be suitable, and the intensivist should ensure that the information (Table 93.1) necessary for these decisions is provided.

Table 93.1 Information likely to be required by transplant teams

DETERMINATION OF BRAIN DEATH

This is a clinical responsibility of the intensivist and must be carried out according to appropriate codes of practice or clinical guidelines (see Chapter 46). The determination of brain death^7,22,23 involves several stages:

The examination and determination of brain death is facilitated by a proforma and should be documented in the medical record. When clinical examination is confounded (e.g. by barbiturate coma), then absent cerebral blood flow must instead be demonstrated by reliable imaging.⁷

The intensivist should convey the fact of brain death and its medical and legal implications to the family. It can be difficult to accept brain death as death, given the life-like appearance of the skin, the rise and fall of the chest and the warmth of the hands that are preserved by ventilatory and circulatory support.²⁴ Some family members appreciate an offer to view the (second) clinical examination for brain death (taking care to explain beforehand the possibility of spinal reflexes), or the cerebral blood flow study when clinical examination is confounded. This may help them to understand and accept the final awful implication of this diagnosis. Intensivists should be open to offering these options.

In the absence of organ donation, it is appropriate to remove ventilatory support at a time that allows for family needs.

DONATION AFTER CARDIAC DEATH

Donation after cardiac death (DCD), previously known as non-heart-beating donation, is increasing in many countries but is not yet practised worldwide. Kootstra and colleagues from Maastricht have long been advocates for DCD, and described four categories of ‘non-heart-beating’ donors; this terminology remains in common use.

In all but Category III the situation is ‘uncontrolled’.²⁵

DCD practice varies considerably worldwide. Category II donors are most common in the Dutch experience but donation does occur from all categories. Almost all DCD donors in the UK, USA, Canada and Australasia are Category III (and a very few are Category IV). By contrast, in Spain, although withdrawal of treatment in ICU is far less common than in Holland or the UK,^26,27 and Category III donors are rare, immediate postmortem organ preservation measures (including cardiopulmonary bypass) can be implemented with prior consent and most DCD donors are Category I and II.²⁸ Recent advocates for DCD commonly assert that ‘all organ donation occurred this way’ before brain death was accepted as legal death. Although organs were removed after circulatory arrest, there are differences which are not discussed and which negate the assertion that the processes are identical. Although brain death was not accepted as legal death, the syndrome had been recognised many years earlier (e.g. absent cerebral blood flow²⁹ was reported in 1956 and the clinical syndrome³⁰ in 1959). The final awful meaning of the brain death syndrome (‘apnoea, fixed dilated pupils, polyuria, hyperglycaemia and spontaneous hypothermia’³¹) was understood by intensivists and nephrologists and conveyed to families at that time, prior to a discussion of organ donation (PB Doak, RV Trubuhovich, personal communications). Organ donation was not discussed with the family if some brainstem function (usually only a tracheal reflex) was known to be present. Apnoea at hypercarbia was not specifically tested for but the shared expectation of the family and the treating team was that the patient would not breathe after withdrawal of ventilatory support (although a few did, for a short time and inadequately). Cardiac arrest usually occurred in 15–20 minutes, at which point death was declared and the kidneys were removed.

In contrast to organ donation after brain death, in (Category III) DCD the patient is known not to be brain dead at the time of organ donation discussion, may well breathe after extubation and may not die in the timeframe where organ donation is possible. These differences have ethical and clinical consequences for intensivists which are discussed below.

Delayed graft function is more common (∼40% vs. ∼20%) in recipients of DCD kidney grafts,³² but long-term recipient outcomes are equivalent to those who receive a graft from a brain-dead donor.³³ Both graft and patient survival after DCD liver grafts are lower than after grafts from brain-dead donors (e.g. 5-year graft survival 52% vs. 66%, 5-year patient survival 65% vs. 72%),^34,35 probably reflecting both intolerance of the liver to more than 15 minutes of warm ischaemia and impaired small vessel washout of the biliary system. Less viscous preservation solutions may ameliorate this latter problem. Patient survival is less impacted than graft survival but at the expense of an increased frequency of retransplantation. Recipient and graft outcomes after pancreas transplantation with grafts from DCD donors are similar to those from brain-dead donors.³⁶ Although successful lung and even heart transplantation from DCD donors is being reported, experience so far is insufficient to characterise the long-term recipient outcomes.

Following the Institute of Medicine report³⁷ in 1997 there has been an explosion of publications on the legal, ethical and medical issues raised by DCD^25,38,39 and more recently several national guidelines or recommendations have been produced which address these issues.^35,40,41 Recommendations for Australasia have been developed by the Australian and New Zealand Intensive Care Society.⁷

There are many potentially contentious issues, including ensuring that there has been a consensus decision to withdraw treatment before the family are presented with the option of possible organ donation after death, estimating the probability of death soon after withdrawal of treatment, use of agents (e.g. heparin) and procedures (e.g. instrumentation) prior to death that are for ‘organ benefit only’, location of withdrawal of treatment (ICU or operating room), presence of the family after withdrawal of treatment, use of opioids and sedatives after withdrawal of treatment, separation of clinical responsibility for end-of-life care (including opioids, sedatives and determination of death) from responsibility for organ procurement, timing of organ removal after death, abandoning the procedure (but continuing comfort care) if the patient does not die within a predetermined time (usually 1 hour) after withdrawal of treatment, ensuring that the family are fully informed and supported throughout the process, ensuring that all participating personnel are familiar with, and accepting of, DCD procedures and ensuring that appropriate protocols which explicitly address all of these issues are in place in each participating hospital. DCD should only take place in the context of such protocol wherein broad clinical, ethical and societal consensus has been achieved after wide consultation. Where this has been done, DCD has been viewed favourably by both families and hospital staff, has compensated for the fall in brain-dead donors in Holland and the UK, and has modestly increased the number of organs (particularly kidneys) available for transplant in the USA.