St Christopher’s Hospice in Sydenham first opened its doors to dying people in 1967, igniting the contemporary hospice movement. This velvet revolution in care for dying people took place alongside other social transformations. The 1960s was a time when despite new legislative restrictions, the impact of immigration from the Commonwealth was becoming more visible. Not long before Enoch Powell made his ‘rivers of blood’ speech on immigration, a Statement of Aims for St Christopher’s hospice proclaimed ‘St Christopher’s Hospice is based on the full Christian faith in God, through Christ. There are no barriers of race, colour or creed.’ Groundbreaking at the time.
Quite separate from its towering cultural significance, St Christopher's has a special place in my heart. My mother was able to die at home, and without pain, because of the home care the hospice set up for us. I only realised much later how 'lucky' we were. Hospice and palliative care services are uneven across the country and the proportion of home deaths has been falling over the years. It is estimated that if current trends continue, fewer than one in ten of us will die at home by 2030.
At the time when my mum had been diagnosed with cancer of the pancreas, I wasn't sure what a hospice was or how hospice care was any different to the care provided in hospitals. A quick Google search will tell you that a hospice is much more than a building or institution. It is a type and philosophy of care that provides specialist palliative care to alleviate a person's pain and symptoms. The philosophy of 'total pain' that is used aspires to take into account psycho-social and spiritual pain. More than this, hospices include a whole spectrum of life. Cicely Saunders, who founded St Christopher's, put it this way: ‘You matter because you are you. You matter to the last moment of your life, and we will do all we can not only to help you die peacefully, but to live until you die.'
You can take in and rationalise this information, but in the matter of feelings, hospices can be virtual places. They occupy a febrile dividing line between living and dying, hope and despair. They prise open vistas in our cultivated existential amnesia, so that cracks start to appear in the thousands of petty dramas that we get caught up in and that serve to divert attention away from finitude. The very word ‘hospice’ and its associations with death can make people squirm and want to change the subject. John, a patient at the hospice, confided to me that he had sat in his car for 20 minutes on his first visit, too frightened to go in. He had in mind a Victorian workhouse. Jamaican-born Maxine had heard rumours, 'I ‘ear about de ‘ospice before, but I don’t know where it is. I was scared because white people, black people, everyone saying to me “Yu mosn’t go up dere. Dey jus take you to dat place and carry you in dere to die.” Both John and Maxine were pleasantly surprised by the hospice. One of the first things that I noticed was how small and friendly the hospice was. And it didn't smell like a hospital.
Those who work in hospices are aware of the myths and fears that surround them and their work. They are keen to point out that hospices are more than places to die. They are also used as short interventions to get unruly symptoms under control. They provide day and respite care and physiotherapy. Most hospices have events that are open to the public, so if you have a hospice near you, take a look.
It still amazes me that people work with dying and death for a living. Hospice professionals that I know have tried to tell me at some point or another that their work is much like any other occupation, with its own banal schedules and petty bean-counting. I don't believe them. Immersion in the business of dying renders the best of them peculiarly sensate and emotionally agile. They can be so attuned to patients that when off-duty they feel and know the moment when someone has died.
These time-shifters, drug-dealers and necro-technicians work amongst unimaginable suffering and bodily decay and double-up as wedding-planners, personal shoppers and flower-arrangers. They are privy to confessions of adultery, abuse and violence as much as to the realisation of life-long dreams and ambitions. They gather in reels of hopelessness and despair and soak up life-times of regret, hurt and disappointment. They keep watch with parents as their children ebb away in the grossest of biographical injustices and they try to accompany those who have hunkered down into deep inner recesses, blocking out all human contact.
The causes of such withdrawal are organic and disease-related in some cases, but there is always uncertainty. ‘I can accept not doing lots of nursey things for some people’ says Gill, as she describes hospice patients who opt to fester in their own bodily juices or who hoard rotting food in their rooms, “If I can discuss it with them, I can support them and not go in there and try and tidy them up and polish their faces. But there are some, where there is just this huge distance and you don’t get anything one way or another. It’s disconcerting and I can’t help feeling that I have failed them in some way.” Gill has been recalling her care of a Ugandan mother, who could not speak English and was dying of AIDS related conditions - with suspected dementia - thousands of miles away from her children, family and friends.
At times of such profound retreat and lavish desolation, and when other more conventional routes have failed, hospice carers can try the emotional equivalent of keyhole surgery, in the hope that they might disinter personhood. They make small forays into subjectivity, attempting to rearrange, soothe or deflate damaged feelings and states, without the pain or iatrogenic effects of bio-medicine. Sometimes the pleasures of touch are introduced through massage to replace the assault of needles and tubes that many people have had to endure during their illness. At other times, it is organising a visit from a counsellor, community group, chaplain or religious minister.
Some writers have argued that hospices serve to cordon off and privatise the worst forms of dying and bodily degeneration. If this is the case, it is also true that hospices can re-enchant dying by sustaining remnants of death etiquette and by innovating new death rituals is response to social diversity and change. Hospice staffs regularly reunite families and friends, hunt down local stashes of Ganges water, use a compass to angle a patient’s bed towards Mecca, or set up Skype for long-distance farewells. They arrange visits from the hairdresser, a beloved pet, a priest or a lover. Kim screeches in mock horror as she remembers her care team’s efforts to secure a private double-bedded room in the hospice for some conjugal privacy with her partner. ‘Nothing happened’ she swears, ‘It would be like fucking in a church.’
It's important to remember that despite stories of inadequate or bad end of life care, good care is not always about financial resources, the latest technology or tool. Whatever it is they are doing, or trying to do, I have noticed that the very best palliative carers, whether they are working in a hospice, hospital, care home or in the community, never give up on listening and talking. Hearing is the last sense to close down. But there is more to it than this.
I was surprised and comforted when a district nurse came to remove the syringe driver and catheter from my mother not long after she had died. As the nurse performed these last intimate tasks, she tended to my mother slowly and with careful dexterity. As if my mother was still present and sentient, the nurse called her by her name, stroked her arm and continued to talk to her in soothing, gentle tones until she had completed all of the procedures. It felt like love.