Most patients with cancer will have been treated with surgery following diagnosis, and for some this will have required extensive and potentially mutilating procedures [1]. While the majority of surgical interventions for cancer are designed to cure the disease, a large number of operations are undertaken with non-curative (palliative) intent such as tumour de-bulking procedures, insertions of stents and those designed to improve cosmetic appearance or remove distressing fungating wounds. There have been exciting developments in surgery where improvements in health technologies and diagnostics have resulted in less invasive procedures, more use of localised resections and improvements in functional outcomes, aided by better rehabilitation. These innovations are likely to benefit those with advanced disease. Globally, the majority of patients who are diagnosed with cancer have advanced disease which is no longer amenable to curative treatment. This means that they are likely to experience distress from pain and other symptoms and psychosocial concerns [2].

For anyone facing surgery, either elective or emergency, there is likely to be heightened anxiety about the outcomes of the procedure and fear about pain and disability and potential complications. The normal trade-off for the patient undergoing surgery is that the short-term pain and distress are balanced by long-term benefits, especially the potential of cure. Clearly in patients approaching the final stage of life, there needs to be careful consideration of this balance to prevent futile and expensive procedures that extend hospital stays and have little impact on quality or duration of life [3]. Yet a recently published review indicates there is little research on the preferences of patients or the impact on quality of life of palliative surgery [1].

This chapter focuses on psychosocial and ethical issues in palliative surgery. We start by defining psychological and social care and then highlight the key ethical issues which will underpin the following sections. We start by addressing the important topic of communication, information exchange, decision-making and ethical choices that are relevant to all types of surgical practice but especially when cure is not the likely or intended outcome. Further sections address individual differences in stress and coping, the psychological issues associated with pain related to surgery, psychological and psychosexual consequences of palliative surgery and the psychological effects of cancer or surgically induced changes.

The principles of palliative care have long stressed the interrelationship between four domains of care: physical, psychological, social and spiritual which are acknowledged in the World Health Organization definition [4]. More recent accounts expand this definition to also include structure and processes of care, cultural aspects of care, end-of-life care and ethical and legal aspects of care [5]. Psychosocial care refers to enhancing the psychological, emotional, social, spiritual and existential well-being of patients and their families, not merely identity and treating psychopathology [6]. Psychological care refers to managing emotional and cognitive changes which may or may not be linked to the disease process. Social care encompasses the social functioning of the patient, their relationships and meaningful roles such as participation in employment, education and leisure and financial and environmental situations [7]. Spiritual care may include meaning making and existential and religious beliefs and practices that are important to patients.

As in all aspects of medicine, the ability to communicate with patients and their families effectively and compassionately is the foundation of psychosocial care. This is especially important when surgeons are required to explain complex procedures where patients need to make decisions about surgery compared to nonsurgical interventions. For example, in prostate cancer treatment options include watchful waiting, radical prostatectomy, radiation therapy and hormonal therapy [8]. The side effects (including urinary incontinence and erectile dysfunction) of a radical prostatectomy are known to be debilitating and life altering for the patient and their partner [8].

In the United Kingdom (UK), for example, services are expected to carry out a Holistic Needs Assessment for people with cancer which includes identifying the psychosocial and spiritual needs of the patient across the care pathway, from diagnosis and treatment and into survivorship or end-of-life care [9]. Similarly in the USA the National Quality Forum includes psychosocial, spiritual, religious and existential aspects of care in their quality framework for palliative care [10].

In the UK, the National Institute for Clinical Excellence (NICE) [11] guidance for adults with cancer recommended a four-tiered model of psychological assessment, support and intervention based upon the complexity of the needs of patients and the expertise of professionals involved. This indicated that all health professional should have the expertise to offer basic psychological care, recognise distress and make appropriate referrals, while more complex assessment and psychotherapeutic interventions required the skills of psychologists or psychiatrists. Much psychological morbidity goes unrecognised and therefore untreated because clinicians are reluctant to question people directly about their feelings and patients fail to report their concerns because they fear wasting professional’s time, are afraid that they may be construed as ungrateful or “weak willed” or do not believe that surgeons are interested in their psychological state [6]. Asking patients explicitly if they are depressed or anxious should become part of routine surgical follow-up. However, evidence suggests that surgeons are unlikely to have received adequate training in palliative care, pain management or psychosocial care [1].

One of the main problems in the way psychological care is often construed is to emphasise the abnormal or pathological ways to respond. Relatively little attention is focused on the way that the majority of people affected by cancer manage to contain their distress, carry on with their everyday lives and maintain good relationships with those around them. These are remarkable achievements and only recently have psychologists started to study what is now called “positive psychology”. Little is known about the individual differences that predict who will manage difficult challenges associated with palliative surgery and who will be overwhelmed by the experience of cancer and late-stage disease.

One seminal model of stress and coping is based on the notion that patients make primary appraisals of phenomena to determine if they are construed as threatening, followed by secondary appraisals to examine the resources at their disposal to deal with the stressor [12]. It is important to recognise that people have intrinsic (e.g. their personality, life experiences, education) and extrinsic (e.g. family, community, religion, money) resources. These different ways to cope with threat tend to be categorised as problem-focused and emotion-focused coping. The former is more action oriented and may involve seeking information and mobilising resources to seek solutions to a challenge, while the latter tends to emphasise dealing with distressing emotions such as anxiety or anger, by, for example, learning to relax or distract oneself, and tends to be regarded as a more passive response. No one type of coping style is better, as different responses are suitable in different situations or stages of illness. For example, immediately after surgery it may be more helpful if patients can learn to relax and rest, while later they may require an active engagement with rehabilitation. Arguably most people with cancer are very resilient and cope well with the challenges facing them. But when external stressors exceed their capacity to adapt, either because the stressors are so overwhelming or because there are concurrent problems, then psychological distress, depression and anxiety can happen to anyone.