Palliative care, also known as supportive care, involves a holistic or “whole person” approach, which includes the management of pain and symptoms as well as psychological, social and spiritual support for you and your loved ones.
Palliative care aims to reduce the symptoms, control the leukaemia, extend survival, and give you and your loved ones the best quality of life possible.
How did palliative care begin?
Palliative care began in the hospice movement. Hospices themselves have been around as early as the 4th century, and were simply a rest stop for travellers. It is only recently that they took on the roles we associate with them today, regarding treating the terminally ill and the dying.
The creation of hospices as we know them today began in 1900. However, Dr Mary Baines explained that ‘the patients in them received excellent nursing and spiritual care but there was minimal medical input, for it was generally believed that the doctor’s role was to cure’ (Baines, 2011).
The first official hospice was set up by Dame Cicely Saunders in 1967, and she is widely regarded as the founder of the modern hospice and palliative care movement. Her hospice, St Christopher’s Hospice in London, was the world’s first modern hospice and brought together patients from across the country to assess how best to care for the terminally ill and dying.
St Christopher’s Hospice described how, ‘Cancer was the most feared diagnosis. Physical pain afflicted at least three quarters of cancer sufferers and appropriate painkillers were rarely used. Morphine was considered addictive and too dangerous’ (St Christopher’s, n.d.).
Cicely Saunders had seen the benefits of oral opioid from visits to a London home for the dying, so she set about researching it properly at St Joseph’s Hospice. Her research went on to prove the benefit of oral opioid, and when she left St Joseph’s, ‘she had carefully documented records of over 1,000 patients dying of cancer. The first research project in what was to become palliative care’ (Baines, 2011).
Now at St Christopher’s Hospice, Saunders went on to do more research on pain relief, comparing diamorphine and morphine. She believed that diamorphine was the superior drug, as it had fewer side effects and was generally believed to be better at controlling pain. Dr Robert Twycross was appointed Clinical Research Fellow at the hospice and conducted a study on pain relief. The results revealed that there was in fact no difference between the drugs in terms of how well they relieved pain, and Twycross’ study began the standardisation and simplification of managing cancer pain (Baines, 2011).
Saunders also inspired the concept of ‘total pain’. This was considered ‘revolutionary’ at the time, as it recognised that pain was not just physical, but also emotional and spiritual. Saunders understood that patients needed to be supported emotionally as well as physically, especially since emotional pain could not be so easily helped by the use of drugs.
Baines described how, ‘Spiritual pain may be due to guilt about the past or a fear of what happens after death. It was explored with all patients on admission by asking about the importance (or not) of faith, so that spiritual anxieties could be addressed’ (Baines, 2011).
What does palliative care involve?
Palliative care, at its core, aims to improve quality of life. As Dame Cicely Saunders discovered, this could be managing physical pain and controlling symptoms, alongside providing emotional support.
It also aims to improve quality of life by keeping the patient as active and healthy as possible, and supporting the family of the patient through treatment and bereavement. End of life care in particular focusses on allowing the patient dignity in death, as well as assisting with any legal matters. End of life care is usually given to patients who are believed to be ‘in the last year of life’, although this can be difficult to predict (Marie Curie, 2014).
Who provides palliative care?
Palliative care is provided by two distinct groups:
- Those who give day-to-day support to patients and carers at home or in hospital, such as GPs and community nurses
- Those who specialise in palliative care, such as ‘consultants in palliative medicine and clinical nurse specialists in palliative care’ (The National Council for Palliative Care, 2015).
Those providing day-to-day support are expected to support the needs of the patient and family on a physical, emotional and spiritual level. They are expected to meet these needs within the limit of their abilities, and then refer the patient to a specialist if any further care is required.
The specialists in palliative care can provide support in the patient’s home, in a hospital, a care home, or indeed a hospice. Specialist services are made up of a multi-disciplinary team that not only includes consultants in palliative medicine and clinical nurse specialists, but also ‘physiotherapists, occupational therapists, dieticians, pharmacists, social workers and those able to give spiritual and psychological support’ (NCPC, 2015). They provide the services for more complex needs that cannot be dealt with by generalist services.
Palliative care and blood cancer
For blood cancer patients, palliative care usually involves transfusions of red blood cells to keep the patient feeling fit, along with treatments that are most often used to destroy the cancer cells, but can also assist with relieving symptoms, such as radiotherapy to reduce bone pain.
However, it has been documented that there’s a disconnect between haemato-oncology and palliative care. Biren Saraiya, Assistant Professor at the Cancer Institute of New Jersey, has explained that ‘there are at least two factors for this disconnect. One is of perception. Many non-leukaemia professionals… have the perception that leukaemia doctors push patients too hard, while many leukaemia doctors may feel that the patient population they serve, even the elderly, can benefit from very aggressive therapy. This may be related to the differences in potential outcomes. With leukaemia, the other “c” word, cure, is possible even in the poor-risk group. In the case of a typical solid tumour patient, the goal of therapy becomes palliative in nature once the cancer is metastatic.
‘The other disconnect is of time — by the nature of the disease, all decisions for therapy are made in a very short amount of time as compared to other solid tumour malignancies. This obviously creates a situation where a patient who until very recently had been feeling well needs to make a decision regarding therapy in a relatively short period of time or they could potentially die’ (Biren Saraiya, 2009).
As Saraiya details, due to the often aggressive nature of acute leukaemia, and the subsequent aggressive treatment, palliative care can sometimes be overlooked or seen as not necessary, as a cure could be possible. However, palliative care does not always mean end of life care, but instead simply managing symptoms to keep the patient comfortable. Aggressive treatment for leukaemia will often result in aggressive side effects. Yet if these side effects are well controlled, the patient’s quality of life is inevitably improved, and their ability to better withstand treatment increased. As such, it is important that there is more integration between blood cancer treatment and palliative care so as to give the patient the best chance of survival.