Palliative Care and Hospices – Cicely Saunders and the evolution of the hospice movement
Hospices have been in existence for centuries as religious and charitable establishments that would take care of the terminally ill. The modern hospice movement began in 1967 when Dr Cicely Saunders opened St Christopher’s Hospice in South East London. She was an inspiring woman who had worked as a nurse during the war and been struck by how badly pain was managed for dying people, and the inadequate treatment and support they received.
The use of morphine in the terminally ill
There was a reluctance to start using morphine until people were in desperate pain as the belief was that it would hasten death and was regarded as a ‘last resort’. Cecily Saunders encouraged nurses to administer regular doses of morphine around the clock to patients in pain who were not imminently dying. To everyone’s surprise, these people did not stop breathing but remained both comfortable and alert and able to engage with their families and the staff. This really revolutionised the use of morphine and although some opioid phobia still exists, we are now able to offer effective pain management for most patients.
‘There was a reluctance to start using morphine until people were in desperate pain, as the belief was that it would hasten death and was regarded as a ‘last resort.’’
Cicely Saunders developed palliative care to holistically manage the psychological, spiritual and physical requirements of patients in their last days, enabling them to live as full a life as possible. I became the pharmacist at St Christopher’s in 1999 and was so honoured to be there when Dr Saunders was still part of the hospice. Although she had stopped working as a doctor, she was still very involved and focussed on ethics and continuing to support the spread of the work in the UK and all over the world.
A multi-disciplinary approach
Hospice work is truly multi-disciplinary. The teams consist of doctors, nurses, physiotherapists and occupational therapists, social workers, spiritual carers, complementary therapists and pharmacists. Drugs are crucial to symptom management although they run alongside other helpful interventions.
Finding the best solution to help an individual patient’s symptoms is a complex mixture of science and art, in my opinion. It is an area where pharmacists can really show their skills in seeking out the right drug for the right patient and can sometimes mean thinking ‘outside the box’. It’s a very sharing speciality, with discussion forums available to see how others may have managed problems as diverse as malodorous wounds in inaccessible places, and intractable vomiting in a patient with Parkinson’s disease alongside cancer.
As time is short, focus on the long-term effects of medicines may not be such a concern; often symptoms can be very challenging and first and second line treatments are not always effective.
For healthcare professionals, Palliativedrugs.com provides a discussion forum, information and other resources regarding medication used in hospice care.
It has long been the practice in palliative care to use medicines ‘off licence’ which means to use licenced medicines but for conditions they were not originally intended for. Some examples are the use of antidepressants and anti-epilepsy medicines for neuropathic pain and antipsychotics for nausea and vomiting. It has also been common to mix medication in syringes for 24-hour subcutaneous infusions, administered via syringe drivers (pumps).
Most hospice patients have cancer as their main diagnosis but hospices care for people with other life-limiting diseases too, such as heart failure and motor neurone disease. The aim is for people to become involved with palliative care as early as possible to help support patients and their families, and most hospices offer inpatient care plus support at home alongside the GP, district nurses and community pharmacy.
Palliative care has changed a great deal in the past few years as people are living longer with their disease and often having to deal with multiple co-morbidities. Gone are the days when we would stop all their regular medicines on admission to the hospice and just use symptom control medicines. Now we realise that their regular medicines can actually contribute to their symptom control, but we need to be mindful of rationalisation and drug interactions.
Some people require end-of-life care outside hospices, and this may occur in long-stay inpatient hospitals, particularly with wards which include elderly inpatients.
The Palliative Care Adult Network Guidelines (PANG) have been developed for non-specialist doctors and nurses and these are available online via the Ashtons Live View System.