"Death has become an ultra- mystifying experience, almost as if it's an embarrassing thing to happen to someone," says my friend, thinking about it now. "The perception is that when a person is dying, solemnity is the only response. You think of silent Victorians in black bombasine. In fact your reactions are diverse and complicated. Hugo's death wasn't solemn. It was jolly at times. It was a big do."
Jo Gurnett, Kenny Everett's manager, was with Everett when he died from Aids last month, at home in a special, beautiful bed bought at huge expense from Harrods. "There is a very differ-ent attitude to dying among people with HIV. They are getting rid of the taboos. There is a determination to behave as normally, and remain as true to your character as you can. When Kenny wanted to be frivolous he was frivolous, even close to death. It's never easy to be ar-ound people who are terminally ill. But this attitude makes it easier. It's a very healthy thing."
It is a common experience for homosexual men living in London to have lost a dozen, 20, or 30 friends to HIV in the past decade. The people dying from this virus are largely young, many are artistic, anarchic, extremely vocal. It seems that a group of people who are used to reinventing tradition, and redefining the pattern of lives, are now challenging the conventions of death; and that when dealing with death becomes part of everyday experience, as it has been in every century until this one, a sense of occasion might naturally return to the business of dying.
London Lighthouse is an airily designed space in the middle of the fashionable multi-ethnic buzz of Notting Hill. Founded almost 10 years ago it is a centre for those "facing the challenge of HIV", with a restaurant, a garden, a mortuary, residential unit, a room to hold funerals in, and a range of social and support functions. Any discussion around death through HIV quickly points you here, where a consciously pioneered culture of dying has stimulated a wider, more organic development.
George Murray, who was diagnosed as HIV positive 11 years ago, sits in the restaurant, and describes, without awkwardness, the "Living Will" he has drawn up, with the help of Lighthouse. "I'd like to die here, with my partner with me and that's what I've written down. I do not want to be kept alive when there is no point going on. I don't see that the occasion should be over-serious. I don't want my parents here, panicking and trying to stop me passing over to the other side. I've arranged to have a funeral service here, and for my body then to be taken, by road, to Glasgow so that my parents can hold a service there. My partner and I have made up a tape of music that means different things to us, which we can play at the service when the time comes to go."
It's not always possible to plan and predict: symptoms, mood, may alter everything. But staff at the centre talk of the diverse styles of "quality living" which people have chosen just before death: maybe going clubbing, or shopping in the last days, partying, toasting themselves and their friends; and of the funerals, some of them "so camp that you have to laugh", which firmly reflect the character and wishes of the person who died. New traditions have grown up around death here: the lighting of a candle on the reception desk when someone has died, with the name of the person who died on it, so that no one needs ask; a book of remembrance where relatives and friends can write their thoughts after the death, and on its anniversaries.
"Death denial is a curiously paralysing element in our society," says Christopher Spence, founder and director of Lighthouse. He describes the Lighthouse approach as "a very conscious development in death literacy". In wider society, he says, "we can't think clearly about this issue, basically because we're scared." Spence's original blueprint for a centre like Lighthouse, which sprang out of his academic work on death denial in the late Seventies, was not HIV-related. "Suddenly in the mid-Eighties HIV and Aids produced an opportunity to create something which had been long in my mind."
There is much in the character of HIV which prompts a challenge to old approaches, particularly in the medical world. Stigma, dramatic conflicts of interest, between family, lovers and friends sometimes thrashed out over the deathbed, have heightened the issue of the dying person's control. In St. Mary's Hospital, Paddington, a group of nurses and staff sat discussing why the atmosphere on the hospital's two HIV wards was so different from other wards. They described some of the patients' requests. Many people want to die quietly, conventionally, but frivolity in the face of adversity was clearly equally acceptable.
"There's a big champagne element," said one nurse. "There was one man who wanted his friends to toast him above the bed, just after he died." One man wanted to be anointed with oil and wrapped in a loincloth, like Jesus. Others wanted music - Bette Midler, rave music, whatever - videos, a dinner party.
"A lot of the difference in atmosphere comes from a shift in the balance of power between the medical staff and the patients," said one manager. "HIV is so new - a lot of the patients know more about it than the staff - we are learning from them. The patients are young, politicised, aware of their rights, and determined to tell us what they want." The staff pointed too, to the close relationship with voluntary agencies on the wards, who bring in new ideas, and challenge established ones. "I think the fact that with HIV the patient is certain to die makes it easier to bring up the subject of death than, for example, with a cancer patient," was another thought. "It gives you an intro."
The feeling was that much had been learned which the nurses would take with them in the future to work on other wards, but there would be practical constraints. "If you are rushing round like a blue-arsed fly then often you don't have time for those sorts of conversations, and if you can't give time to them, it's better not to begin them.''
There is clearly much need for greater "death literacy" in the medical world, let alone society in general. A Royal College of Nursing survey last month highlighted alarming failures in hospital policy for dealing with death and bereavement. It showed more than half of casualty departments surveyed had no policy for dealing with bereaved relatives, no private room where relatives could spend time with the body, and no formal training in this area for staff.
Stephen Firn, HIV Adviser at the RCN, comments: "With HIV we've been dealing with a very vocal group of clients with a high level of knowledge about their illness. The clients themselves have dictated their care. Relatives and friends become involved in the nursing. That goes against the traditions and culture of the medical professions, where it is the staff who decide what is best. Many nurses feel it is time for this to change."
But the impact of HIV is already evident. The nurses at St Mary's talked of huge changes in approach among District Nurses who have had to deal with Aids-related deaths at home. Ursula Smith, who heads the residential unit at the Lighthouse, commented: "I don't think it's any coincidence that there has been so much more publicity over euthanasia in the last five years, or that living wills are now being made by people with all kinds of terminal illness."
The style in which one chooses to go is a personal and also a generational thing. Marie Curie Cancer Care, a major provider of hospice care, reported that patients of theirs who choose a more high-spirited atmosphere for their death are very few and invariably young. It's hard to know whether a desire to die without formality or solemnity will remain among the generation now in their twenties and thirties when they reach old age, or whether it is just a characteristic of dying young.
New approaches are not unquestioned and certainly not for everybody. Tony Calvert, who co-founded the Terrence Higgins Trust, makes the point that a different atmosphere exists among those people with HIV who are not closely involved with HIV centres and wards. "Actually, most people that I know who have HIV find it very difficult to talk about their death and to embrace that concept. Or they can begin feeling positive and open and become very scared." He points out that not everybody wants to die in a self consciously aware HIV environment, surrounded by other people dying through Aids who have been influenced by counselling. "If I was dying I don't think I could go through with that."
But in the end the issue is one of choice and power. And it seems the current heights of campery in death: the chink of champagne glasses over the corpse, the rendition of "At Last the Witch is Dead," at the funeral, the gloved and braceleted hand which parts the crematorium curtain with a histrionic wave, are all, in their way, bringing the rest of us a better deal when it gets to our turn.Reuse content