Palliative Care

I've mentioned before that I work as a nurse, although not specifically in palliative or hospice care. My patients are people who have lived for many years in psychiatric hospitals, have never been well enough to move into the 'community', and now inhabit a special unit created specially for them in a suburban setting. A team of nurses and support workers supply round-the-clock care for these people, who could fairly be described as 'damaged' by decades of institutional living, on top of serious mental illness that have failed to respond to treatment, or not enough to make independent living feasible.

One of my patients has inoperable cancer. At least, it's a fair bet that she has inoperable cancer. Her mental illness is of such severity that she has consistently refused to allow a doctor to examine her. But she has all the symptoms of malignant disease: weight loss, heavy bleeding 'down below', severe pain, and other distressing signs. Although she won't submit to examination or investigations, she accepts occasional visits from Macmillan nurses, and takes regular doses of morphine to keep pain at bay. She is now confined to bed, and she trusts those of us that she has known for several years to attend to her basic needs, washing her, helping to change her when she is wet or soiled, and encouraging her to eat and drink. Her mental state fluctuates between delusions of persecution (the newscaster on TV is calling her obscene names and broadcasting her sexual escapades to the nation; her food is poisoned and rancid) and flights of elated fancy: she has two lifelike dolls that she treats as if they were living infants, talking to them, feeding them with jelly and ice-cream or toasted cheese, you can imagine the mess!

She occupies an en-suite room quite far from routine nursing activity, and can not get out of bed unaided. On two recent occasions she has been found on the floor by her bedside, having tried to get up, fallen to the floor, and incapable of either getting up or calling for help. Although she has a call-button she won't use it. Now we have 'risk-assessed' her, and she has cot-sides attached to her bed to restrain her movements from the bed and prevent accidental falls. We have insituted a frequent, regular, visit to her room: at fifteen minute intervals during the day, at thirty minute intervals at night. Staff who visit her are required to sign a sheet to record their visit: this ensures consistency, and is an attempt to see that her needs are met, so that she doesn't need to try to leave her bed for any reason, and doesn't fall or get her frail limbs entangled in the cot-sides that are intended to prevent her from falling.

All this sounds very cold-blooded, but it is how palliative care has to be delivered in the very challenging circumstances of our work. It doesn't express the inexpressible rapport that exists between us, her carers, and our patient. Despite her severe paranoia, her grotesque innuendo and racist insults, and her obstinacy about treatment, we love the being she is, and we wonder at her courage, her equanimity, her acceptance (on her own terms) of what is, and relish her devastatingly trenchant humour, spiced with 'blue' language, and saucy innuendo that would make a sailor blush.

She is dying an ordinary yet extraordinary death, free of religious or what some might regard as spiritual associations. But there is a wonderful transcendence too that invests the everyday happenings in her room, an unspoken - or artlessly articulated - witness to the marvel of human existence, and of relationship, and of perfect reciprocity: no carer, no cared-for, no-one to give, no-one to be given to, nothing to figure out, nothing to make happen, just a momentary joy and ease that conquers suffering, and a knowing that all is as it should be, all is well.