Portal de Periódicos da CAPES

End of life in cancer patients: drugs or words?

2010; Elsevier BV; Volume: 21; Issue: 5 Linguagem: Inglês

10.1093/annonc/mdq218

1569-8041

Enrico Aitini, F. Adami, Gian Luigi Cetto,

Patient Dignity and Privacy

Ensuring that patients are aware of their situation and of their choices in oncology are concepts that have been asserted and accepted for quite some time and have become fundamental in the doctor–patient relationship. Oncologists have developed an approach towards cancer patients that is characterised by a global vision of patients’ needs: besides identifying the purely clinical necessities, more and more attention (even though it is not yet adequate) is given to communication; to relationships; to the social, ethical and spiritual aspects; and to what can be defined as the ‘patient's biography’. Each and every stage of the illness is critical for patients due to the extremely negative impact the communication of a diagnosis or a relapse or progression of the illness can have on their lives in both physical and psychological terms. It is, however, also a critical situation for the doctor particularly if he or she understands fully the importance and delicacy of the moment when communicating bad news [1.Buckman R. Breaking bad news: why is it still so difficult?.Br Med J. 1984; 288: 1597-1599Crossref PubMed Scopus (364) Google Scholar, 2.Maguire P. Pitceathly C. Key communication skills and how to acquire them.Br Med J. 2002; 325: 697-700Crossref PubMed Scopus (606) Google Scholar, 3.Fallowfield L. Jenkins V. Communicating sad, bad, and difficult news in medicine.Lancet. 2004; 363: 312-319Abstract Full Text Full Text PDF PubMed Scopus (730) Google Scholar]. It is almost always difficult for the doctor to understand what truth the patient wants: full disclosure, nondisclosure or individualised disclosure? For instance, the patients who say ‘I want the whole truth’ do they really want full disclosure or are they placing the responsibility of how much to disclose on the doctor's judgement to recognise how much of the truth they can take? [4.Aitini E. Aleotti P. Breaking bad news in oncology: like a walk in the twilight?.Ann Oncol. 2006; 17: 359-360Abstract Full Text Full Text PDF PubMed Scopus (10) Google Scholar]. In Western countries, doctors are obliged to move within a world that presents dangerous fluctuations between an absolute faith, sometimes blind faith, in science and the ancestral fear of an incurable illness and consequently death. To understand and accept that we are mortal, that our lives end, to come to terms with death as part of life and see it not just as a biological event but as an existential happening can be a way to help and support terminal cancer patients to maintain their dignity. It seems that our society has lost the ability to understand and accept death, preferring instead to keep it hidden from our everyday lives [5.Royal College of Physicians Doctors in society. Medical professionalism in a changing world.Clin Med. 2005; 5: S5-S40PubMed Google Scholar]. Doctors, therefore, must be aware that removing the inevitability of death from our consciousness makes it impossible to restore dignity to an event that was perceived in ancient times as a natural part of life. At this point, the most important role of the doctor is to accompany terminal cancer patients along this difficult path, helping them not to be overwhelmed by the fears and anxieties generated by the perception that life is about to end. However, to do this the doctor must first face and control his or her own fears and anxieties: it is an extremely difficult task but if done properly it leads to the construction of a therapeutic alliance allowing the patient to listen to bad news without being overcome by it and to hear a possible truth, said with delicacy, without being dismissive or brutal and without shame. In general, when doctors communicate bad news, they try to involve the patient emotionally in a more active, expectant, future dimension and to take the dialogue forward by suggesting and offering therapies and alternative solutions which, at least, allow patients to cohabit with the illness, even though at times with great difficulty, and to give patients an element of hope. However, we must honestly admit that all too often doctors demonstrate serious difficulty and an evident reluctance to talk to their patients about the final stage of life. Generally, patients perceive the distinction between anticancer treatments and palliative care (which are lived as a whole for a long time) and their hopes often crumble when they are informed that the former will be suspended and only the latter will continue. It is as if the remainder of their lives has taken an irrevocable and irrecoverable direction. Making this situation even more dramatic is the fact that, usually, the doctors who have attended the patients during their often-long illness and know their medical history are no longer part of the patients’ lives: they will not be the doctors who will treat them during this final stage of life. Patients and family members come to the conclusion that this is an abandonment of treatment and their reaction is often one of refusing to be placed in a palliative care programme. As long as anticancer treatment continues, even in the most serious phase of the illness, patients have no precise perception of whatever time they have left but with the withdrawal of treatment they see their lives as finished and it is seen as a sentence of imminent death. Faced with the resistance of the patient and family members, who express the reaction of society when confronted by limits, by suffering and by death, doctors are placed in a very difficult position and are often unable to manage the emotional complexities. The irrational expectations of patients and family members tempt doctors to abandon a dialogue, which seems unsustainable and to propose further line of treatment, which, in many cases, the doctor knows will be totally futile. For the same reasons, doctors tend not to be completely clear and honest regarding the realistic possibilities the new treatment can offer, leaving patients the possibility to hope in unrealistic results. On the other hand, in this final stage of the disease, it is even more difficult to understand what the patient really wants to know or to what extent they are capable of supporting devastating news [6.Aitini E. Cetto G.L. A good death for cancer patients: still a dream?.Ann Oncol. 2006; 17: 733-734Abstract Full Text Full Text PDF PubMed Scopus (5) Google Scholar, 7.Matsuyama R. Reddy S. Smith T.J. Why do patients choose chemotherapy near the end of life? A review of the perspective of those facing death from cancer [review].J Clin Oncol. 2006; 24: 3490-3496Crossref PubMed Scopus (302) Google Scholar]. In Europe, in the Esmo Moses Project and in North America the need to develop training programmes regarding palliative care and the transition from anticancer treatment to palliative care is beginning to receive the attention it deserves. The current lack of definition and of best practices could explain the difficulties facing the attending oncologist and consequently, at least in part, the high number of patients who choose or request further therapy in the final stage of the illness even though the advantages in terms of survival or in the improvement of their quality of life will most probably be minimal or totally absent: they continue to cling to this illusion [8.Snow A. Warner J. Zilberfein F. The increase of treatment options at the end of life: impact on the social work role in an inpatient hospital setting.Soc Work Health Care. 2008; 47: 376-391Crossref PubMed Scopus (13) Google Scholar, 9.Harrington S.E. Smith T.J. The role of chemotherapy at the end of life: “when is enough, enough?”.JAMA. 2008; 299: 2667-2678Crossref PubMed Scopus (231) Google Scholar, 10.Rayson D. McIntyre P. Transitions to palliation: two solitudes or inevitable integration?.Curr Oncol Rep. 2007; 9: 285-289Crossref PubMed Scopus (8) Google Scholar]. All this brings us to an ethical evaluation not only concerning the patient and family members but also regarding society in general, since prolonging futile therapies, which are sometimes very expensive, means an improper use of resources that could be used to help patients who could gain a real advantage from them. However, inevitably we must ask ourselves who has the absolute right to deprive someone of an irrational hope. Patients have the right to accept or reject therapy and more often than not continue to hope even though the situation may be hopeless. The role of the doctor is not to offer hope, which is but only an illusion, and this is probably the most crucial point in the doctor–patient relationship, the doctor must help patients reduce their expectations while, at the same time, heighten the patient's trust in the doctor and to comfort patients in the knowledge that they are not alone, and that their physical and psychological suffering will be the doctor's only concern [11.Whitney S.N. McCullough L.B. Frugé E. et al.Beyond breaking bad news: the roles of hope and hopefulness.Cancer. 2008; 113: 442-445Crossref PubMed Scopus (36) Google Scholar, 12.Chochinov H.M. Dignity and the eye of the beholder.J Clin Oncol. 2004; 22: 1336-1340Crossref PubMed Scopus (84) Google Scholar, 13.Giorgi F. Bascioni R. Another infusion of hope.J Clin Oncol. 2009; 27: 1722-1723Crossref PubMed Scopus (11) Google Scholar]. Accepting the prospect of death is very difficult, not only in cancer patients, and for doctors, talking to terminal patients about death is just as difficult. At the beginning of the twentieth century, Franz Kafka frequently said: ‘It's easy to write a prescription for medicine but talking to people who are suffering is more, much more difficult.’