Portal de Periódicos da CAPES

Hope and despair

2016; Wiley; Volume: 52; Issue: 10 Linguagem: Inglês

10.1111/jpc.13355

1440-1754

David Isaacs,

Palliative Care and End-of-Life Issues

Physicians caring for dying children who are no longer curable face difficult problems regarding counselling the family about prognosis and management. They may be uncertain of how soon the child will die, what will be the quality of the child's life, with or without medications, and how much to involve older children in treatment decisions. Physicians are often reluctant to tell parents their child is dying, and if asked why they say because they are afraid to take away hope.1, 2 They fear that where there is no hope there is only despair (Fig. 1).1 They adhere to the adage of the 16th century French barber-surgeon Ambroise Paré who said: ‘Always give the patient hope, even when death seems at hand’. Ruddick1 says ‘physicians routinely support patients’ false hopes, often with family collusion and vague, euphemistic diagnoses and prognoses, if not overt lies’. Ruddick goes on to distinguish patients’ ‘possibility-hopes’, based on optimism or denial, from physicians’ ‘probability-hopes’, based on statistics and facts.1 When counselling parents, the doctor should avoid being unnecessarily insensitive about the child's poor prognosis, but also avoid being over-optimistic and fuelling false hopes. Research involving children with cancer shows that most parents want to know the truth about prognosis, because the truth enables them to make thoughtful decisions about the future.3, 4 Life-threatening illness brings loss of control of destiny; arming children and their parents with the truth restores some of that lost control. For a child with incurable cancer, the two realistic options are for ‘palliative’ treatment such as chemotherapy or surgery, aiming to prolong life and possibly to reduce suffering, or for palliative care, aiming to maximise the quality of the child's remaining life. What if the physician explains the child's dire prognosis, but the parents insist they want their child to receive potentially curative chemotherapy which the physician is virtually certain cannot cure them and is likely to do more harm than good?5 It is understandable that parents may want to prolong their child's life at all cost, even if they know that the child will almost certainly die soon. There are potential harms, however, if the physician agrees to the parents’ wishes in such circumstances. Treatment such as cytotoxic drugs or radiotherapy may make the child feel extremely ill. The treatment may keep the child in hospital when they would much rather have been at home. The child may miss out on meaningful communication with family and friends. An older child may miss out on feeling in control of their destiny. Early involvement of the palliative care team can be extraordinarily helpful. Too often doctors delay or avoid referral to palliative care because of the association, for patient and physician, with dying. The physician who colludes with the parents in giving treatment that will almost certainly do their child more harm than good, may justify this decision by saying they want to respect the parents’ right to decide and they do not want to take away hope. But if the parents want a course of action that the physician firmly feels is not in the child's best interests, the physician needs to advocate strongly for the child and even consider refusing to give such treatment. In extreme cases this may even constitute a child protection issue. The nature of hope varies from person to person. Hope is not static but evolves. As circumstances change, so hopes can be reformulated. Being realistic about prognosis does not necessarily involve destroying all hope. Hope has an object: we hope for something. When cure is no longer realistic, the physician can try to re-direct family hopes towards attainable palliative goals. We might ask the parents what they would want for themselves if they were dying: most of us would probably want to be at home, to be as comfortable and pain-free as possible, to have the chance to say farewell to our nearest and dearest, and to maintain as much control as possible over our destiny. If the parents can agree that this is a worthy objective for their child, then they may be able to see that they can hope for their child to have the best possible death in the circumstances. For the older dying child, the issue may arise of how much information the child should be told. Of course, the age of the child and their level of understanding are important relevant considerations. Some parents do not want anyone to tell their child the truth about their prognosis. Even if we think that such denial is harmful, and it would be better if the child were told the truth, we usually accede to parents’ wishes. In such a situation, most children will collude with their parents and not ask if they are dying, even if they strongly suspect the truth. Occasionally, however, a child may wait until their parents are absent and ask medical or nursing staff if they are dying, placing staff in a moral quandary if the parents have asked them not to tell the child. If the child is Gillick competent and the staff member replies honestly, the parents will be angry, but lawyers tell us that a lawsuit would almost certainly fail. A possible alternative approach is to give the child a non-committal answer, but to discuss the child's question with the parents afterwards saying the child clearly knows ‘at one level’ that they are dying and that honesty is the policy which respects the child's need to know and to take charge of the rest of their life. While doctors may feel they have to accede to parents’ wishes to withhold telling the truth to a dying child who does not ask, any parent who expects a physician to lie to their child is asking for something unacceptable. Doctors should not lie to their patients.6 When there is no hope, there is risk of despair. How do we cope with tragedy without despairing? US writer and director Bryan Doerries became fascinated with this topic when his 22-year-old girlfriend was dying from cystic fibrosis. In a remarkable book, Doerries discusses with disarming frankness the confronting issue of compassion fatigue.7 His response to despair was to take solace in the Greek tragedies, which he argues presented the unvarnished truth in confronting fashion, thus helping Greeks cope with tragedy. He translated some into English and got actors to perform them. He performed Sophocles’ play Women of Trachis to health workers.7 In this play, Heracles is fatally wounded by a poisoned cloak and, dying in agony, asks his son Hyllus to build a funeral pyre on Mount Olympus and set him alight. It seems Heracles wanted to go out in a blaze of glory while simultaneously letting the Gods know he felt aggrieved. This put his son in a frightful moral quandary. Eventually, Hyllus agrees to build the pyre but refuses to light it. As Heracles dies, the community, in the form of the Greek chorus, bear witness and give moral support to Hyllus. When we are faced with difficult ethical dilemmas surrounding end-of-life decisions, community support can help lessen the load. Many people in Hyllus’ position feel responsible for either prolonging the dying person's suffering or for causing their death and feel ‘stained with the pollution of such an impossible decision’. Doerries believes Women of Trachis is also about palliative care: Heracles not only asks his son to help him die, but to die with dignity, to treat him as a human being when others found his suffering intolerable. In summary, accepting the inevitability of death does not mean that all hope is lost. People can be helped to keep hoping, but for other attainable important goals. And despairing relatives can be supported to make difficult but caring decisions.