'We aren't here to judge, but to give love'
Patients' behaviour does not change once they have been given a terminal diagnosis, for better or worse
Nurse Sheryl Newman once convinced a very unwilling yet terminally-ill patient to be admitted to a hospice by agreeing she could bring her own beer.
The bed-ridden cancer patient then arrived at the Stepping Stone hospice in Alberton with three crates of Black Label quarts – a total of 72 bottles of beer.
Newman had to renegotiate.The patient was told she would be allowed to drink six 750ml beers a day, but her family had to deliver them daily – the nurses could not go out and buy it for her. She still tried to bribe hospice staff to go for a quick shop across the road.
She was an alcoholic dying of cancer.
“At two in the morning, she would be yodelling down the passage: ‘Come on, Sheryl! Sit down and have a beer with me!’ ” Newman recalls with a smile.
Although she had to be managed strictly, hospice staff do not judge or criticise patients, says Newman.
“I am not here to punish them … when all else fails, we have love.”Hospice nurses wheel out patients’ beds to help them get outside to smoke, even when they are suffering from have lung cancer.
Patients will not change their habits in their final days, says Newman.
“If they were obnoxious before cancer, a terminal diagnosis won’t change them.”
She says about 90% of a hospice worker’s job involves supporting the families of dying patients. Staff become experts at managing family relations.
“Families often disagree over how much must be done to keep their loved ones alive, but it is the hospice staff’s job to advocate for the patient and their wishes.”
At some point in a terminal illness, keeping a patient artificially alive means staff are “prolonging their death”. But, “we do not hasten death” either, says Stepping Stone Hospice CEO Tersia Burger.
Newman has learnt to read and work with families, preparing them for death and preventing them from fighting with one another over the treatment of their loved one.
“We have to predict problems, before they evolve into disasters.”A lot of counselling is given to families to prepare them.
“There is always a dominant adult sibling, even if it is the sibling that sits quietly in the corner.”
Tricky situations arise when one sibling is abroad while the patient is dying, often sending instructions to the siblings in South Africa on how the patient should be treated.
The need to give orders from afar seems to be out of guilt from being so far away and from frustration at having no control over the situation, explains Newman.
Often when a patient starts to die, the body starts shutting down and they stop eating. But families will insist on feeding unwilling patients. Newman says that, for families, “food is a language of love”.Newman says death can be “incredibly beautiful”. Hospice staff need to make it as comfortable and pain-free for the patient as possible.
“It is an honour and a privilege to be with patients at death.”
Many times patients are very grateful to have someone on the journey with them as the time between diagnosis and death can be incredibly lonely.
Friends come over when a person is diagnosed and visit them in hospital or at the hospice.
But in between this, the sick patient and the family are dealing with the loss on their own.
“When someone is on their journey to death, the rest of world continues to live.”