By Hannah Cadogan, Lecturer in Nursing (Lived Experience), University of Roehampton London (www.roehampton.ac.uk)
Adults with a severe mental illness (SMI) such as schizophrenia, bipolar or psychotic disorders face stigmatisation, underrepresentation and have a life expectancy that is 10-20 years lower than the general population1. Often these adults enter into palliative care or end-of-life services much later in life as they tend to be diagnosed late due to difficulties accessing primary services2 and treatment or receive a lack of understanding of their symptoms by healthcare staff, ultimately delaying end-of-life or palliative care discussions.
Palliative care is provided to people in the last months or years of their life or to those diagnosed with incurable, life-threatening illnesses3. It focuses on preventing, diagnosing and treating individuals to improve their quality of life4 physically, emotionally and spiritually during their final months.
As someone with a lived experience of SMI and who cares for these patients, I know first-hand that these patients do not receive the same care as someone physically unwell. SMI patients in palliative care are more likely to have physical health issues, yet they are less likely for them to be picked up by healthcare staff. This often prevents them from receiving the treatment they need, causing them to die in intensive care units or emergency departments. This lack of understanding is compounded by limited academic research addressing the needs of people with SMI in palliative or end-of-life care.
Greater collaborative training between mental health and end-of-life services is vital for palliative care staff to understand how to care for SMI patients. Currently, healthcare staff are trained based on a specialism, preventing equal care for all patients and important considerations for those with SMI. Nurses trained in mental health have limited experience with physical or end-of-life issues. Equally, palliative care staff have limited mental health knowledge and thus, they do not know how to respond effectively to the needs of patients with SMI, leading to avoidance and inadequate care.
Increased information sharing by all NHS staff, including sharing the patient’s history, symptoms and general advice on how to best work with patients who have SMI, will help equip staff with the knowledge of how to react more effectively. This is especially the case with patients who have a history of drug addiction and are resistant to the medication given in palliative care, such as for the treatment of psychosis. Greater information sharing and transparency are also a good practices, especially for mentally well patients receiving palliative care caused by an incurable illness suddenly relapse due to past mental health issues.
The presence of a psychiatric nurse in the palliative team would also be highly beneficial, as they are already equipped with the right skills to care for SMI patients. Psychiatric nurses are trained to address a patient’s needs by reducing their mental stress, anxiety and increasing their physical and psychological well-being5. While not a common practice, I have witnessed how helpful psychiatric nurses are in tending to the needs of patients, supporting nurses when it comes to diagnosis and easing patients’ psychological symptoms, during my time as a nurse at Chelsea Westminster Hospital from 2006-2007.
This increased cooperation between psychiatric nurses and nurses within wards that focus on addressing a patient’s physical and psychological needs has been lost due to the adoption of new methods and insufficient funding. Building this practice back into the NHS within a palliative care environment would ensure SMI patients receive the best care possible.
While there is increased acknowledgement that more research into SMI patients’ must be conducted, progress remains slow. I cannot stress enough the importance of how better cooperation on training and skill sharing, greater transparency and the reintroduction of psychiatry nurses are just some of the ways that can help palliative care staff provide more sufficient care for patients, both physically and mentally. As someone with SMI and as a nurse that works in palliative care, it is vital that patients with SMI are given palliative care provision, particularly as this is a group of patients who, sadly, presently, die younger than the rest of the population.
1 Barriers to palliative care for people with severe mental illness: exploring the views of clinical staff, European Journal of Palliative Care, January 2018
2 A systematic review of palliative care tools and interventions for people with severe mental illness: https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-019-2078-7
3 Palliative Care for Terminally Ill Individuals With Borderline Personality Disorder: https://pubmed.ncbi.nlm.nih.gov/31188458/
4On the Margins of Death: A Scoping Review on Palliative Care and Schizophrenia: https://journals.sagepub.com/doi/10.1177/0825859718804108
5 Role of Psychiatric Nurse in Palliative Care: https://juniperpublishers.com/jojnhc/pdf/JOJNHC.MS.ID.555705.pdf