Until very recently, only cancer patients got palliative care. People suffering and dying from other illnesses, even those in great distress, would not have benefited from the service we offer. However, that is now changing, and the advice and support of specialist palliative care teams in hospital and the community is becoming more widely available.
Government guidelines require trusts to pay more attention to palliation for non-malignant diseases, and also for people in nursing homes.
I work as a clinical nurse across King's College Hospital in Camberwell, south London, in a team of six specialists. We are there to advise. As well as cancer sufferers, I work with patients with neuro-degenerative conditions such as motor neurone disease, Parkinson's and MS. I also look after the older people, which could involve managing chronic pain and end-stage heart disease.
For me, palliative care has always been attractive because of my beliefs about improving quality of life, regardless of the patient's illness or disability. I also know how much alleviating pain, discomfort or unpleasant symptoms can mean to a person in their last days.
Psychological pain can be just as terrible as physical pain, and part of my job involves working through a patient's acceptance of a disability, or helping them come to terms with their illness, which may be incurable. The emotional and spiritual elements of care can make a real difference to people in distress. I have seen the support offered by a layperson or chaplain help enormously in that dreadful, uncertain time. The presence of another human being who cares changes the quality of that experience.
When we assess somebody's pain experience, we are looking at their "total pain", whether physical or mental. Have they had a lot of pain in the past? Are they now in a state of fear, anticipating greater pain to come? Is their pain heightened by movement or exercise, or might it be psychological?
A lot can be done to ease physical pain, but it needs care to get it right. Attention to basic nursing routine is so important, and it can be overlooked. Wards are so stretched now that it can be difficult to prioritise this when there could be another patient in need of more urgent attention.
People do have misconceptions about what palliative care is, and sometimes you get patients looking at you in horror as if the angel of death has just arrived. I once went to assess a gentleman with acute leukaemia to see if he had any unmet needs, and asked him if he had spiritual concerns. He was obviously alarmed and asked if we had bad news for him. He thought we were saying he was on his last legs. So you have to give a lot of reassurance and explain the role.
One of the main challenges is building a strong, trusting relationship with patients and their families at a time of such uncertainty. That is often hard.
Everyone touches you in different ways. Tragic things do happen, and it affects everybody in the team. We had a late referral one day of a patient who had broken his neck. Although he already had a terminal illness, he was not about to die and was living at home. A nasty fall had resulted in a fractured vertebra, which meant that suddenly, time was very short. He was fully alert and conscious of that fact, though he could not move at all. We were called in to provide symptom control and to support the family.
The priority then is to keep someone free from pain, and also to try to help them not to become too agitated in a situation most of us would find unimaginably frightening. To relieve pain and help someone stay relatively calm when they are so helpless is always a balancing act. We would prescribe the correct therapeutic dose of drugs, but ward staff might be reluctant to administer it because of worries about shortening life.
But these situations can be managed if everybody is well informed. If palliative care experts are on hand to support ward staff as well, those precious final hours, which might be terribly distressing for both patient and family, can be made more bearable. And, as it turned out for this patient, he was able to spend his last hours more comfortably. For his family, that meant a lot.
One of the main frustrations of working in a big hospital is communication. You might make suggestions, or direct a particular management of symptoms, but then if it doesn't happen, it's not good because the patient has not benefited. Teaching time is crucial. Mine is an advisory role, and I like to share knowledge and skills with ward staff and help them gain confidence around patients whose illness they might be nervous of.
A certain amount of maturity is needed for this job, together with self-awareness and confidence - not to mention a sense of humour. You are dealing with emotion at the coalface, and it is vital not to impose your own values or beliefs on others when they are at their most vulnerable.
