Mashal Iftikhar argues that we need culturally sensitive services that do not fall into the trap of making assumptions based on the religious or cultural background of patients
“You’re Muslim right?” The Consultant turned to me “Perhaps you can explain to the rest of us how dying in Islam works?”
It was an incredibly hot summer afternoon, it was the middle of Ramadan and there were still too many hours to go until the day’s fast broke. I was tired, dehydrated and had been hoping (naively) to be undisturbed during my lunch break so I could sit quietly in the corner of the office with my head down. I considered making a joke about how dying in Islam is pretty much the same as it is outside of Islam – your heart stops, you stop breathing, you keel over and your body stiffens. Not having eaten since before sunrise however had knocked my sarcasm for six.
“What would you like to know?” I responded. Every staff member at the hospice apart from myself and one other doctor was white, an extremely unusual situation in the NHS, which is why I wasn’t surprised that I was being asked this question. In the previous hospitals where I had worked, the ubiquity of minority NHS staff meant dying Muslims and their funerary practices were hardly a mystery.
The Consultant explained difficulties with engaging Muslim families to use regional palliative services and applying to use the hospice as a preferred place of dying, and how this reflected the dearth of palliative referrals from minority groups in general across the country. Everyone in the office looked expectantly at me as though I, the Oracle of all practices Islamic, would be able to give The Answer to why this was the case. I was glad they were curious and cared about accommodating patients of all backgrounds, but my concern was that they would consider any answer given by myself to be sufficient and representative of all knowledge regarding the beliefs and practices of Muslim death rites.
The truth was that I had only attended one funeral in my entire life, in Pakistan, when I was six years old; and my comprehension of what had occurred was limited. All I understood was that my Aunt, only 26 years old (an age that seemed beyond the reach of my imagination at the time) had been suddenly snatched from the midst of our family, like a fierce wind knocks the breath out of your lungs, leaving us gasping and barely able to stand.
Within hours of her death being announced, she was brought home, bathed, wrapped in five plain white, unstitched sheets and a garland of roses placed around her neck, She was placed on a charpoi for everyone to pay their last respects. Family and friends urgently left their workplaces, their homes, whatever prior commitments they were engaged in to hurriedly gather from all over the globe for the burial, which would happen within the day of death – in keeping with Islamic custom. There were no speeches, no refreshments, no playing of favourite songs, no black dress code or anything that would remotely constitute a memorial service that is familiar to English funerals. We continued to wear what we were wearing when we first heard of the road traffic collision, as the crowd of family grew and spread across the house. Amongst the women where I sat, listening to their staccato sighs and muted wailing, I wondered why everyone was so upset if, as I had been told, my Aunt had indeed “gone to a better place”. Before any significant time had elapsed, the charpoi on which my Aunt lay was lifted by the men of the household and carried away to the graveyard where the women would not follow. I still did not understand that I would not see her again.
In the coming weeks and months I have vague recollections of the shifting countenance of grief in my family. My father, who has always been incredibly stoic and steadfast in difficult times, threw himself into his work. My mother arranged a khatm-e-Quran– where Muslims gather to complete a reading of the Quran in one sitting, in the hope that the blessings of such an act of worship will be attributed to the departed in the afterlife and increase their likelihood of attaining a station in heaven. I now know that various individuals had informed us such an expression of faith was a damned innovation. Others informed us that to grieve beyond a few days was an indication of disbelief given my Aunt’s union with God. There was no unanimous consensus on what was the most dignified and appropriate way to grieve, even among our circle of family and friends. In the bereavements that have followed since then, there still isn’t.
“Anyone who has worked in a hospital has seen death, but working in a hospice meant I got to know death”
Twenty years later I was working in a hospice in South Staffordshire. This part of my medical training has proven to be one of the most profound learning experiences of my life. Anyone who has worked in a hospital has seen death, but working in a hospice meant I got to know death. There is no other predicament like death, which will as intimately expose the frailty of human schema, the shape of family ties and relations, or the health of social and cultural mores underpinning our communal existence. Grief manifests with many faces. Grief will pull you together and break you up again in waves. For minorities, barriers that are entrenched at the community-palliative service interface can unfortunately further complicate the entire bereavement process.
There are a plethora of reasons as to why minority groups do not access palliative services or use hospices to the same extent as white British population. Lack of knowledge regarding availability of such services, what palliation constitutes – a common misperception being that palliative doctors help end lives, and uncertainty over whether palliation is compatible with religious and cultural beliefs are significant factors. Language barriers to communication between health professionals and minority patients, and perceptions of discrimination and unjust treatment based on previous encounters lead to distrust of health professionals, further contributing to inequity in accessing services.
Due to various cultural and religious beliefs amongst many minority communities, there is also generally a preference to persist with life sustaining/lengthening treatment above opting for palliative routes of care aimed at preserving quality of life. This often means that by the time life-sustaining treatment is withdrawn, it is often too late to plan a death at home or in a hospice. Patients from minority backgrounds are less likely to have or even know about advanced care plans, advanced (legally binding) decisions to refuse life saving treatment and are more likely to refuse do-not-resuscitate orders. If we factor in language and cultural barriers, these conversations are all the more difficult to have when the time comes. The complexity of planning end of life care is further compounded by collective rather than individual decision making in many minority communities and further disempowerment of the individual by communicating through various family members either due to lack of available translator services or assuming this is a cultural norm which should prevail over other ethical considerations.
From personal experience, health services are hit and miss at accommodating ethnic and religious minority deaths. One of the hospitals I worked for trained their doctors on the importance of punctually completing death paperwork to facilitate Muslim timelines for funeral arrangements, and also how to complete paperwork for patients wishing to be repatriated after death. Some city councils with large Muslim populations have also arranged emergency services for registering deaths out of office hours to prevent delays in burial. Other hospitals, given the enormous pressures on resources, have no quiet rooms on many wards to accommodate the large influx of extended family members that often arrive when a South Asian patient dies.
One experience in particular still haunts me, when a pre-arranged translator for a rapidly deteriorating Romanian patient failed to turn up for the third day in a row, forcing me to use (the very poorly adapted) Google Translate to try and record his wishes while he still had mental capacity, and discuss his preference for cremation or burial after death. Through broken, grammatically incorrect and linguistically insensitive phrases, I had to explain we could not cover the costs of repatriation and hope he understood. I wish I could say this was the exception, I wish I could say these experiences were becoming more infrequent, I wish as health professionals we weren’t growing accustomed to failing our patients from minority backgrounds on a regular basis.
Culturally sensitive bereavement services that do not fall into the trap of making assumptions based on the religious or cultural background of the grieving families are practically unheard of. Despite coming from a fairly homogenously white, Anglican, quasi-rural background, the patients I admitted to the hospice on a daily basis wildly differed in their preferences for end of life care. From spiritual beliefs and rituals, their hopes and fears, the extent of desire for family involvement in decision making, use of alternative medicine, relationship with palliative care medications, to what extent they had come to terms with dying, their beliefs about death and wishes regarding their legacy, to whether they wanted psychological or spiritual input, every lengthy conversation I had was different. Even the same patient, throughout their inpatient admission, would undergo a 180-degree turn regarding a particular belief or decision and it was only through constant discussion that as a medical team we were able to ascertain this.
Ignoring for a moment class, gender, disability and sexuality (which are unfortunately replete with the same institutionalised inequality), the white British patient is treated as a clean canvas upon whom we do not impress our prejudices or limited assumptions of what we presume to be that individual’s cultural, religious or personal beliefs and practices. Similarly, while it is important to have some knowledge of the cultural and religious frameworks in which various minority groups are embedded, this knowledge should only go as far ensuring our conversations are conducted with tact and sensitivity and help to empower the individual through the planning and treatment process by effectively removing impediments in communication. It should not form further stereotypes and assumptions about minority communities and inadvertently drown out the individual’s voice, which unfortunately I, and many others have experienced during our careers.
It can be a difficult line to tread and with lack of cultural knowledge training at medical schools across UK, with little implicit bias training for NHS staff and limited research into palliative care provision for patients of minority backgrounds, the blueprints needed to build such conversations and accommodate the needs of minority patients, are scant. Until then, palliative care services will continue to struggle to provide good end of life care to minorities in this country.
Mashal Iftikhar is a junior doctor training in NHS. She is passionate about raising awareness over the persecution of ethnic and religious minorities in Pakistan, and uses her writing (words in Skin Deep) and online activism to advocate for their rights. She is on twitter as @DesiDocMI
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