Possible effect of the signs and symptoms of severe mental illness on cancer care

Severe mental illness signs and symptoms can affect a person’s sense of self and impair their ability to make decisions. This executive dysfunction, combined with functional impairment, can affect people’s ability to communicate their signs and symptoms, participate in assessments or engage with cancer treatment and care plans. For example, lack of insight in schizophrenia often leads to people with the condition denying that they have cancer, resulting in advanced stage disease when they are finally diagnosed (Chou et al 2016). Table 2 offers some examples of how signs and symptoms of severe mental illness can affect cancer care.

Recovery

In mental health the concept of recovery is central to the philosophy of care. Recovery is characterised as a way of living a satisfying, hopeful and contributing life even with limitations caused by illness (Anthony 1993). It differs from medical recovery in that people often live with severe signs and symptoms but recover other aspects of their personhood, such as identity, autonomy and agency, through resilience and empowerment. Co-production is an aspect of recovery that Palumbo (2016) suggested challenges the traditional biomedical model focus on treatment of illness by establishing co-creating partnerships between healthcare professionals and patients. This partnership can unlock the skills, experiences and qualities that people with severe mental illness possess, but which are often ignored by the biomedical model. Elwyn et al (2019) suggested co-production aims to generate personalised solutions that minimise the burden of illness and the burden of treatment. Cancer nurses will no doubt be familiar with such ideas, as they are the cornerstones of caring for people with cancer.

Person-centred cancer care

Mongelli (2016) noted that barriers to adequate cancer treatment in severe mental illness include patients’ understanding of the diagnosis, commitment to treatment, drug interactions between psychotropic and chemotherapy treatments and the treating physician’s frustration. Caring for someone with severe mental illness and cancer requires cancer nurses to see beyond the mental health diagnosis and focus on the person with cancer. Recovery and co-production in a cancer narrative is person-centred care and shared decision-making, where treatment involves partnership and collaboration.

Person-centred care comprises communication that involves patients, families and friends, explains treatment options, and includes patients in treatment decisions that reflect patients’ values, preferences and needs (Institute of Medicine 2013). However, signs and symptoms of severe mental illness (Table 1) can make this more challenging, and therefore cancer care should be a shared care venture involving a member of the inpatient or community mental health team. This supports continuity of cancer care across service boundaries. Chang et al (2014), in a cohort study on mental disorders, stage of cancer at diagnosis and subsequent survival in London, reported that people with severe mental illness had worse survival after cancer diagnosis, which was not explained by cancer stage. This finding suggested that factors such as reduced access to medical treatment, barriers to using cancer services and stigma may be implicated.

Work in partnership

People with severe mental illness have worse cancer outcomes than the general population. An important policy development that can address this is the personalised cancer care milestone in the NHS Long Term Plan (NHS England 2019), which enables strategic partnerships between nurses working in cancer and mental health services to undertake a holistic needs assessment and support holistic care for people with co-morbid severe mental illness and cancer.

In the UK, people with severe mental illness who have complex needs usually have enhanced support under the Care Programme Approach (CPA) (Department of Health 2008), an approach to personalised care planning used in secondary mental health services to ensure people with severe mental illness have regularly monitored care packages. A designated care coordinator who is part of a patient’s multidisciplinary team manages and reviews care plans to ensure that complex needs are met and that the person remains in contact with services (Department of Health 2008). Therefore, a shared care approach to cancer care for people with severe mental illness is important, as the signs and symptoms of the illness may reduce their ability to engage with cancer care plans. Cancer nurses should know who the care coordinator is and vice versa, and should be aware that this person may be a social worker or psychologist and not a nurse.

Including cancer care in the CPA combines two important approaches to the personalisation of healthcare, which can improve communication between mental health and cancer services; for example, if changes in treatment regimens are required it is important that they are not contraindicated. Delivering healthcare across different services can be complex, with a risk of fragmentation and even disorganisation. There is evidence of a lack of integration between mental health and general medical services, for example Crawford et al (2014), in a UK national audit of physical care received by people with schizophrenia, found a lack of local agreements on responsibility for treating and managing physical healthcare in severe mental illness. Using the CPA in this way can increase personalisation of cancer care and promote a holistic needs assessment and treatment. It therefore offers a reasonable bridge between services in the absence of national cancer care pathways for severe mental illness and cancer.

Treat people with severe mental illness with dignity and respect

Dignity and respect are important, fundamental principles of healthcare. To uphold people’s dignity, The Code: Professional Standards of Practice and Behaviour for Nurses, Midwives and Nursing Associates (Nursing and Midwifery Council (NMC) 2018) urges nurses to treat people as individuals. However, people with severe mental illness frequently encounter stigma and negative stereotyping, which can negate their individuality and undermine these principles. People with severe mental illness experience stigma and stereotyping by the general public and from healthcare professionals. Thornicroft (2011) suggested this may be a form of structural discrimination where medical staff ‘guided by negative stereotypes tend to treat the physical illnesses of people with mental illness less thoroughly and less effectively’. If cancer nurses are mindful of this they can ensure that dignity and respect are afforded to people with severe mental illness just as to those without.

Cancer itself is a condition that carries stigma, and some authors have suggested that despite improvements in treatment and survival it is still regarded as a stigmatised disease (Vrinten et al 2019). Else-Quest and Jackson (2014) reported that cancer reminds people of their own mortality and has uncomfortable connotations of death and suffering, leading to feelings of awkwardness and fear. Cancer nurses can reflect critically on their knowledge and experiences of stigma and stereotyping from a cancer perspective and use this to address the attitudes towards mental health they encounter. This type of critical reflection can enhance cancer care for people with severe mental illness by raising cancer nurses’ awareness of how misconceptions can become barriers to care.

Autonomy and informed decision-making are basic rights in all healthcare treatments and can become complex when cancer care converges with severe mental illness. Personalised cancer care and shared decision-making, which require respecting people’s choices, may be threatened by stigma and stereotyping as clinicians may wrongly assume that a diagnosis of mental illness removes the capacity to choose (Ganzini et al 2005).

It is important not to assume that people with severe mental illness have lost the ability to make decisions; this would be stigmatising. An important principle of the Mental Capacity Act (2005) is that a person must be assumed to have capacity unless it is established that they lack capacity. However, cancer nurses must be mindful that severe mental illness can impair decision-making, which underlines the importance of close working with mental health services. Capacity issues must be addressed in a way that preserves patients’ autonomy and safeguards their right to make decisions rather than being based on stereotypes, which can be disempowering. Mongelli (2016) suggested that the level of functioning of people with severe mental illness before their cancer diagnosis is a reasonable baseline indicator of their ability to make medical decisions. This is important to keep in mind, as a relapse in mental state can reduce the level of functioning, which in turn can affect engagement with cancer treatment.

Reflection on practice

Reflective practice is defined as making sense of experience retrospectively to influence future practice (Freshwater et al 2008). People with severe mental illness encounter stigma from the general public and from healthcare professionals, who might be expected to have a more open‐minded view of those with mental health issues (Rao et al 2009). Learning through reflection can be challenging, as it involves examining our own ideas or attitudes, but cancer nurses, by reflecting on their attitudes to mental health issues, can develop more effective partnerships with people with severe mental illness so that they receive the same quality of care as those without.

Empowerment

An important aspect of person-centred care is education. A cancer diagnosis can be a shock for individuals and their families and, as previously noted, can be associated with pain and death. Cancer nurses have an important role in educating patients about their disease and the treatment options. This type of interaction can inspire hope and challenge negative cancer perceptions. Furthermore, education can lead to empowerment, which refers to the level of choice, influence and control that users of mental health services can exercise over events in their lives (World Health Organization 2010). Goldenberg et al (2000) suggested that the psychiatric signs and symptoms of patients with chronic mental health issues, and clinical staff members’ attitudes towards mental illness, can often lead to an expectancy of dysfunction and suboptimal coping. But empowerment can have several positive effects for patients, including increased satisfaction with care, improved adherence to self-management of treatment and improved clinical outcomes (Bailo et al 2019).

Advocacy

Advocacy is the act of speaking on someone’s behalf to secure their rights, and cancer nurses advocate for their patients by presenting and raising awareness of their needs and preferences (Vaartio-Rajalin and Leino-Kilpi 2011). Sometimes people with severe mental illness and cancer do not receive appropriate care. For example, Irwin et al (2014) conducted a review summarising data on overall and cancer‐specific mortality for people with schizophrenia and examined specific disparities across cancer pathways, from screening to end of life care. The researchers found this patient group were less likely to receive chemotherapy or radiotherapy, had more postoperative complications and had less access to palliative care. Cancer nurses, with their knowledge and experience of cancer care services, play a vital role in advocating for equal access to cancer treatment for people with severe mental illness.

Pain

Cancer nurses will have experience of witnessing people in pain and of assessing and managing cancer pain. However, people with schizophrenia can struggle to report pain, even with advanced illness, and may incorporate it into a delusional belief system (Goldenberg et al 2000). While assumption is no substitute for evidence, a benign supposition can be made about pain and cancer in people with severe mental illness. Pain is a factor in cancer in general so will be a factor for people with severe mental illness who have cancer. Although Irwin et al (2014) suggested people with schizophrenia have decreased pain sensitivity, this may be due to the sedating effect of antipsychotic treatment. A Cochrane review (Seidel et al 2013) found evidence of a significant reduction in pain following administration of antipsychotic medication compared with a placebo or another medicine. However, this was based on using antipsychotics to control pain, whereas people with severe mental illness take antipsychotics as part of their regular mental health treatment, therefore there is a risk that pain may be present but not registered as intensely.

Cancer nurses should be aware that some medications used for the treatment of severe mental illness may be used in pain control or as an anti-emetic, for example olanzapine (Thompson 2016). Clozapine, an antipsychotic, carries a risk of severe neutropenia, so when combined with chemotherapy it can increase the risk of immunosuppression, presenting a clinical challenge when choosing an appropriate management strategy (Riddle et al 2017). Shared care is extremely important with regard to monitoring drug regimens, particularly in relation to contraindications and the effects on treatment of the cancer and the severe mental illness.

Pain assessment is an opportunity for family or carer involvement in cancer care, as they may be able to corroborate patients’ reports of pain or report that they see the person in pain.