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Health: Taking skills beyond the hospice
PROJECT PIONEER: Consultant Lynne Russon.
Hospices may be associated with dying, but doctors from one Leeds facility are sharing their expertise with other patients in the city, and not always at the end of their lives. Katie Baldwin found out more.
IT’S a choice with no easy answer.
For patients with chronic kidney disease, a gruelling regime of dialysis three times a week was once the only treatment option.
But thanks to an innovative approach being used in Leeds, those for whom the drawbacks may outweigh the benefits have another option. They can choose to have their condition managed without going onto lifelong dialysis, giving them a better quality of life in the time they have left.
The project was started by Dr Lynne Russon, who sees patients at St James’s Hospital and works alongside medics specialising in kidney disease.
During the majority of her week, Lynne is a palliative care consultant at the Sue Ryder Wheatfields Hospice in Headingley.
Her involvement with the Renal Failure Clinic is one of the ways in which the hospice’s expertise is used for healthcare elsewhere in Leeds.
The aim of the hospice movement is to ensure anyone approaching the end of their life can have the best experience possibly, dying with dignity in the place that they have chosen.
Saturday (October 8) is World Hospice and Palliative Care Day, which aims to raise awareness and celebrate the hospice movement.
This year’s theme is focusing on how people with non-infectious conditions can benefit from palliative care. Non-communicable diseases are responsible for 60 per cent of deaths worldwide and are set to increase by 17 per cent in the next 10 years.
David Praill, from the UK’s Help the Hospices, said: “While more than 100 million patients and family caregivers worldwide need palliative care every year, less than eight per cent actually receive it. Palliative care is a human right, yet there are millions of people, especially in the developing world, dying in pain and distress every year.”
These non-communicable diseases include cancer but also many other life-limiting illnesses too. Many people who come to a hospice are affected by cancer, but not everyone.
At Wheatfields the specialist clinics which Lynne and fellow palliative care consultant Annette Edwards are involved in look after patients with several other illnesses.
Lynne became involved with a kidney failure clinic at St James’s Hospital in 2006.
She said that the numbers of patients with chronic kidney disease was increasing, due to the aging population, increased diabetes and more referrals from doctors.
Patients whose kidney condition means they soon might need dialysis have a difficult choice to make – they can choose to have the treatment, but once on it for more than a few weeks, it must be continued for life.
However Lynne now works with other medics in the team to allow patients to have a choice about whether they go onto dialysis or not. They can choose not to and have their condition managed instead.
“For those patients who are over 70, who are ill with other things, it takes a big toll,” she said.
“It’s not clear that some patients benefit.
“If you are dialysed, you spend half of your life in hospital.”
Lynne says this choice isn’t for everyone – but for the over 75s, who often have many other medical problems, undergoing lengthy and exhausting treatment three times a week isn’t always what they want.
In fact the latest evidence shows that for some patients, dialysis may not extend their lives anyway.
Choice
“It’s about giving them a choice,” Lynne said.
As a result of the work in Leeds, Lynne has now been appointed as the Yorkshire lead for conservative care - the term for managing kidney disease without dialysis. She has visited all six renal units in the region and is producing a strategy to ensure that all kidney patients are given a choice.
In her work outside Wheatfields, she carries on the approach of holistic care, looking at the patient as a whole, rather than one part.
And she says going out of the hospice has worked well too.
“Both Annette’s and my clinics are working really well because we have taken the expertise into the clinic rather than bringing the clinic here,” she added.
Her colleague Dr Annette Edwards is also involved in two specialist teams, caring for patients with motor neurone disease (MND) and myeloma.
MND is a degenerative condition which there is no cure for. In 2008, Leeds began running an MND care centre which involves a team of specialists from different areas. Around 70 patients have now been supported by the team and it has a raft of benefits for MND sufferers.
Annette is one of the joint care centre directors, with the centre working alongside the patient’s GP and community team and their families.
One of her roles is educating professionals about MND and a website has also been developed with information for patients and other health workers.
She said that the disease could progress differently for patients and often they knew that they were deteriorating.
“Because you generally lose function, your mobility may go off, your swallowing may go off – and quite often people have an insight into this,” she said.
“People may not be feeling ill in themselves but will know they can no longer do things.”
The doctor also works with myeloma patients at Leeds hospitals as it was identified that they too would benefit from her expertise.
She said that people with the illness, which affects the bone marrow, most commonly struggled with pain.
“Because patients are coming to the clinic quite frequently, it was felt that having a palliative care consultant working alongside, looking at symptoms, would be really useful,” she said.
And her involvement often comes at an early stage of the disease, after which the patient may stabilise.
Annette said that was the case for much of their work at the hospice.
“People think it’s mainly cancer or end of life,” she said.
“In fact a lot of what we do is non-cancer and often we are involved at an early stage and then pull back when things are better.
“That’s different to what people think of.”
* To find out more about World Hospice and Palliative Care Day 2011, visit: www.worldday.org
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