Perspectives on end of life
Professor Illora Finlay, Baroness Finlay of Llandaff, FRCP, FRCGP
Palliative care is a specialty that has grown out of the hospice movement. It is an example of the voluntary sector creating services that inform the NHS.
It aims to improve the quality of life of patients with advancing life-threatening disease, and to provide completely 'whole person' care to address all their causes of distress. It also attempts to support the family and others close to the patient.
Cicely Saunders is the founder of modern hospice care. In her model of 'total pain' she highlighted that the physical cause or causes of pain are greatly exacerbated by emotional, social and spiritual distress. These all make the patient’s experience worse by lowering their pain threshold so they 'feel more pain'.
This model applies equally to any cause of distress in a person who is grappling with the uncertainty of life limiting illness, coming to terms with closing horizons and coping with fears about what lies ahead for them and their family.
Good care depends on careful listening to the patient’s symptoms, fears, concerns and wishes. Asking what they find acceptable and what is unacceptable and to their wishes over place of care and who is involved. Sensitivity in listening is key, but must be accompanied by meticulous diagnostic skills. Taking a history is not enough. Observation and clinical examination, conducted with great sensitivity, often reveal far more than expected.
Simply adding in medication or suggesting interventions is irresponsible – treatment needs to be rationalised to whatever the patient can cope with, with drugs titrated to obtain optimal benefit with minimal side effects. For some drugs, such as morphine for pain control, the side effects – particularly constipation – will need simultaneous prevention with laxatives at the time of starting the drug.
It is all too easy for professionals to intrude into the family circle and equally easy for them to not be sufficiently available when needed. Out of hours care presents difficulties – it can be frightening for a patient to feel abandoned at nights and weekends, not sure who or when to call. Even when details are adequately transferred to out of hours services, those caring for a patient at home can feel frightened and vulnerable, particularly if a crisis arises and the doctor or nurse attending at home is new to them.
Specialist teams cannot possibly care for every dying patient; their role is to develop the skills of general services and to provide care for those with complex needs. It is attention to detail in care that conserves the dignity of the individual and respects their needs.
Such care maintains a clear commitment to work hard to improve the quality of the patient’s life at all times, by bringing the science of medicine to bear on the problems the patient faces. This must be linked with the patience to accompany them and their family during the last weeks or months of life. Sometimes, when distress is controlled, the whole outlook improves and some patients go on the live actively for months or even years. We cannot predict prognosis with accuracy, but we can promise to work hard for patients and their families.