This superb and massive book is cautious in its negotiating of the tightrope of discussing the likely needs, beliefs and lifestyles of the various ethnic groups in the UK whilst trying to avoid stereotypes or misleading generalisations. Over and over again the authors warn that the information will apply only to certain Muslim, Jewish, Jain, Hindu, Chinese or other patients and their families. "Never assume," they add, "always check everything with the person concerned."
The book covers every aspect of health care, not just palliative care. It is full of extremely carefully researched details, ranging from, for instance, a note that people of Chinese or Vietnamese heritage with jaundice may tend to look suntanned and or have a slight orangey skin tinge, to advice that a few Hindu patients near death may want to be placed on the floor of the hospital room on a sheet or cleran mat to symbolise their closeness to Mother Earth.
Several small but useful social innovations are proposed, for instance the redesign of hospital records to allow for the naming systems in different ethnic groups - thus the form would include the full name, the preferred form of address, the key name for the form to be filed under and the name of the next of kin, including the person's relationship to the patient.
Also the authors propose that the use of body bags after death should be reserved for high-risk infections (namely anthrax, plague, rabies, smallpox, viral haemorrhagic fever, yellow fever, transmissible spongiform encephalopathies such as Creutzfeldt-Jakob disease or invasive group A streptococcal infection) - incidentally they add that body bags made of polyvinyl chloride should not be cremated because they release dioxin.
They further propose that a standard certificate defining the degree of infection risk (low, medium or high) could be developed for informing funeral directors and others who take charge of the body. This would be issued by the doctor who signs the Cause of Death Certificate and would be taped to the shroud or to the outside of the body bag. In the medium risk category would be those patients who had hepatitis B, C, non-A or non-B or HIV or AIDS. In such cases "embalming is contra-indicated, but relatives can sit with and wash and dress the body for the funeral, provided they observe routine hygiene precautions".
The Natural Death Centre has suggested that the phrase 'visiting the body' could replace 'viewing the body', as visiting could include the idea of touching the body. For several cultures, the word 'view' in this context is coldly impersonal and conveys a sense of distance. In this book, the authors make the same point and use a perhaps even better way of putting it, that of "spending time with the body".
They challenge other present-day assumptions, including one held by many within the natural death movement - namely that the truth should be told about the nearness of death. Nowadays it is no longer normal for doctors and nurses to shield patients from the knowledge that they are going to die. But for some cultures, telling the truth can seem cruel and negligent. One Iraqi interpreter is quoted as saying: "In our culture we never talk about death, we try to block it. And if someone is very ill and asks, we reassure them, we comfort them we don't say yes ... If a patient mentions death, the Western way is for the professional to pounce on it, to talk about it openly. But usually, in our culture, that isn't what the patient expects or wants. They mention death in order to be given reassurance, to be comforted."
The blunt medical facts can also seem blasphemous. As an Eritrean nurse put it: "Who are you to tell us that? Only God can know when someone will die. Everything comes from God." To that particular Eritrean family, saying the patient was going to die was the same as saying the doctors had decided to let him die although they could cure him if they wanted to.
In Judaism, it can be a requirement not to remove hope or to do anything that may hasten death. There may well be a preference for a phrase such as 'critically ill' rather than 'terminally ill'.
Some Chinese patients and their families may want extreme medical measures kept up to the last moment, refusing to accept that death is imminent; they can also challenge another natural death preference, that for dying to take place at home if at all possible. Some Chinese families may strongly wish for a relative to die in hospital, because a death at home may bring ill-fortune to those still living there. Some may feel that an approaching death should be kept secret from outsiders. Children and pregnant women may avoid a dying or dead person in case contact brings bad luck.
Contrast this approach with the words of a man from the northern part of India: "When I am dying I want to be at home with the people I love. I know that the doctors and nurses in the hospital are very good, but it is all so different, the surroundings, the feelings, the smells, the sounds. I want to be able to wash in my way and to taste the food that I have eaten all my life. I want everything to be familiar and comfortable. I want to hear my family moving and talking around me. No effort, no strain, just familiarity and utter contentment."
Alas, however sensitive professionals may be in their approach to other cultures, they are unlikely to get it right all the time. It goes beyond using the correct words. It can often be a different emotional response that is required. In relation to doctors breaking bad news, for instance, the Eritrean nurse pointed out that "in Eritrea you don't use words, just words just like that. You break bad news through your own emotion. You go to see them and you cry, everybody cries, so the person who has to receive the bad news knows." And one middle-aged African-Caribbean woman complained about the emotionally-deplenished English funerals: "I think it's more healthy to cry and let go. Surely that's what funerals are for. For me the saddest and loneliest thing is the stiff-upper-lip behaviour at English funerals. I cannot believe how short the funerals are and how they get through the whole thing showing so little emotion."
The main message of this vital book, however, is to look out for the exceptions and variations. Culture is framework not a straightjacket. Make no assumptions.
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