How well do we manage patients with diverse religious and cultural needs at the end of life?

Anna Steel is an SpR in Geriatric and General Internal Medicine in North London. She has been awarded this year’s Rising Star Award for Clinical Quality for her work focusing on advance care planning and has developed a specialist interest in frailty and end of life care. Here she discusses the importance of being sensitive to patients’ cultural traditions and having knowledge of different religions when caring for those nearing the end of life. She will be speaking at the BGS Autumn Meeting. Twitter via @DrAnnaSteel and @ACPsimulation

Irrespective of how many conversations I have regarding end of life care (and I have a lot!), I am constantly learning new interpretations of religious practice or cultural priorities that patients, families and caregivers hold dear when approaching the final stages. This is an emotionally charged time when sensitivity and individualisation of care is paramount. I have the privilege of working in the increasingly diverse population of London and believe that in order to deliver the best care for our patients, we must understand their background and what matters to them.

Public Health England has recognised for some time that healthcare providers need to be equipped with the right skills and knowledge to understand different spiritual end of life care needs.  It has produced a resource on the importance of faith at the end of life, focusing mainly on Buddhism, Christianity, Hinduism, Islam, Judaism and Sikhism. Organisations such as Marie Curie, have been running projects like the “Including Diverse Communities in End of Life Care Project” funded by the Big Lottery.

Despite these and many other valuable projects, our individualisation of end of life care is still in need of many improvements. The Royal College of Physicians “Talking about dying” report is an honest account of the challenges faced when caring for patients nearing the end of life and the improvements in care which need to be addressed.  The NHS “Long Term Plan” has included a much-needed commitment to end of life care. It advocates a fundamental shift to deliver more person-centred care with the emphasis on asking less “what’s the matter with someone?” and discovering more about “what matters to someone”. It also recognises that individuals differ in their values and preferences, which need to be accommodated.

Religion and spirituality are important for many patients and can provide a sense of strength, comfort and hope in difficult situations. They can also provide a sense of community and belonging which can be a great support for patients and families.

Religious practices and interpretations are wonderfully diverse. I recently encountered a patient who was a Muslim from Turkey. The patient was severely frail and deteriorating from heart failure. The family thought that the patient should be admitted to ITU so that we would continue treating.  In their mind, only Allah can decide when a patient’s life should end and doctors should be aiming to prolong life until that point. I have had many similar conversations with Jewish patients and patients from other religions too. Conversely, I once looked after a Buddhist patient, originally from Cambodia, with end stage renal failure.  He felt that quality of life was of paramount importance and wanted to decline extra interventions.

Over the years, I have met patients and families with similar beliefs and backgrounds but with strikingly contrasting opinions. The following is clear to me:

1. As practitioners, we have to leave our own attitudes and belief systems at the door.
2. No two patients are the same.
3. The more information we have, the greater our chances of delivering the best care and respecting the patient.

As healthcare providers, we educate ourselves with vast amounts of medical knowledge and delve into the minutiae of clinical presentations, for example asking about the site, onset, character and duration of physical pain. We may, however, sometimes overlook or be unaware of a patient’s inner struggles or turmoil. Within every religion or culture, there are so many different ways of practising, it would be a mistake to assume “one size fits all”. However, if we familiarise ourselves with some of the main underlying principles and beliefs held by people of different religions and cultures, we may at least take one step closer to appreciating what is driving our patients’ wishes. With our increasingly ageing and diverse population, we need to be experts in treating the person, not just the disease.  

Dr Anna Steel will be speaking at the BGS Autumn Meeting 2019 on Thursday, 7 November in Leicester. See the full programme here.