Anatomy of Care

Dr Richard Soulsby, CEO of the Katharine House Hospice, explains the fundamentals of palliative care.

What is Palliative Care?

In the broadest sense, palliative care aims to relieve the suffering of people who are going to die in the imminent future. Underpinning the philosophy of modern palliative care is the principle of a holistic approach to each patient; they may have physical symptoms that require medical management (such as pain, or respiratory distress); there may be psychological problems requiring counselling or psychological support, or perhaps spiritual matters, which call for pastoral care. Meanwhile there is also a network of support available for the others involved – families, informal carers and friends.

Who is it for?

Palliative care is provided to anyone with a condition, disease or illness that is no longer curable and will progress until the person with the condition dies. These include neurological conditions like Motor Neurone Disease, Parkinson’s or Multiple Sclerosis; heart, kidney or respiratory failure; HIV/AIDS; cancer; and congenital conditions (mainly in children’s Hospices). Palliative care services for adults and children are two distinct areas.

How is palliative care delivered?

Providers include the NHS, private healthcare organisations and some nursing homes, but the largest sector providing palliative care is the voluntary or charitable sector. Well known national charities such as Marie Curie Cancer Care and Sue Ryder Care occupy this sector, but the largest provision comes through the myriad of smaller, local independent hospices.

Services provided include: Specialist nursing care in your homeHospice at Home servicesDay careInpatient care – where specialist palliative care beds enable you to stay overnightHospital in-reach teams, who visit patients on wards, and out-reach teams

Facts and figures

According to Hospice Information (a collaboration between Help the Hospices and St Christopher’s Hospice) Great Britain has 160 voluntarily run inpatient units with 2551 beds, 63 NHS inpatient units with 675 beds, and 39 voluntarily run children’s hospices with 297 beds. As for patient numbers, a 2007 survey from the National Council for Palliative Care estimated that there were 40,000 new inpatients, 19,000 new day care patients, 101,000 new home care patients, and 100,000 patients seen in hospitals.

Palliative care in focus

Katharine House is a hospice in Stafford, which provides free care to local people suffering from progressive, life limiting illnesses, while supporting their carers and families. Far from the common perception of hospices as places where people go to die, Katharine House believes that there is a great deal of living to be done in the meantime. We help people make the most of the time they have left, and provide services that focus on quality of life accordingly.

So what’s it like? One of our patients found his experience a pleasant surprise: ‘The first day I came to Katharine House the volunteer asked me what I would like to drink,’ he said. ‘I jokingly asked for a Bacardi and coke, and was shocked when that was exactly what he brought me.’ Far from talk of symptoms, death and dying, the day care unit is more about crafts and cocktails. It offers a friendly atmosphere where people joined by circumstance can forget about their illness, relax and provide their carers with precious time to recharge their batteries.

Too many people think that hospices represent the final option – the end of the road that no one really wants to talk about, a grim dark place where no one gets out alive. In fact, contrary to popular belief, around 50% of patients leave the In-patient unit after their stay. Those, however, who do not, live out their lives in what we hope are the best possible surroundings. They lose friends, they face a daily mountain to climb; they have good days, and bad days; in short they are ordinary people who are getting on with living.

Precious Choice

Research commissioned by the Dying Matters Coalition shows that less than only 4% of people have written advanced care plans. Consequently, despite 70% of us saying that we’d like to die at home, 60% of people die in hospitals. More than anything this illustrates the importance of talking openly about our wishes if we want them to be met, and good correspondence between patients and carers.

To date, Katharine House Hospice has offered care and support primarily through its day unit or in-patient unit. However, many patients would prefer care in their own home. This September, the Hospice is launching a new service in partnership with Compton Hospice and the South Staffordshire Primary Care Trust. This move aims to bring care into people’s homes and support their wishes to die at home, carrying the ethos of the Hospice out into the community. Hospices are simply not just bricks and mortar – they represent a philosophy of care.