‘A Hospice Is Not Simply Somewhere To Die’

“A hospice,” says Sister Rita Dawson, nurse and chief executive of the Sisters of Charity-run St Margaret of Scotland Hospice in Clydebank, “is for living in. It is not simply somewhere to die.”

Western society shrinks from confronting death. But at St Margaret’s it is quite simply the final “great event” in life.

Here Sister Rita and her skilled multi-disciplinary team allow patients from the surrounding area diagnosed with a terminal illness – from cancer to final-stage Motor Neuron Disease, Multiple Sclerosis or organ failure – to make the most of what time they have left.

Sitting round the conference table are some of the key people who make that happen – director of clinical services Elizabeth Thomas, nurse lecturer Jacquie Malcolm and Jean English, physiotherapist and part of the pastoral care team.

Key to the programme is its holistic nature, says Ms English. “We always talk about psychical, emotional and spiritual care.”

Everyone nods, exuding a collective warmth. “And,” chimes Ms Thomas, “the great thing is our services are set up so that you can access them at whatever stage you are at in your illness.”

At the day centre patients are offered complementary therapies including aromatherapy, massage and reiki, access to the hydrotherapy pool, art workshops and hairdressing to pain management and counselling.

Others get home visits, or patients may have repeat short stays in one of the wards for symptom management. And as patients’ illnesses progress staff at St Margaret’s try to make sure they are as content and comfortable as possible. A bereavement programme is also on offer for families.

Underpinning all of this is a respect for the individual and a commitment to celebrating life and helping people on their journey through it.

It’s an inspiring operation. At its helm is Dublin-born Sister Rita, who, with her no-nonsense attitude and easy laugh, has overseen it all for the past 20 years with thoroughness and expertise. She loves her work and takes her responsibility to the hospice seriously – 14-hour working days are the norm.

She has also brought it a modicum of international fame through her other great talent – an uncanny ability, instilled by her eight racing mad brothers, to spot a winning horse, most recently backing three successive Grand National victors. With the help of a free £500 stake from Ladbrokes she has won thousands over the years to help top up St Margaret’s coffers.

She puts her head in her hands and laughs when she thinks of the headlines it has generated across the world. “And that’s what I’m going to be remembered for,” she mocks. “After all my hard work.”

But therein lies the rub. Care of this quality doesn’t come cheap, and with only about half of costs paid by the NHS, fundraising is a constant battle. Every year she has somehow to find £1.6m towards running costs of more than £3m.

That goes a long way to explaining why palliative care is still in woefully short supply across the country.

A diagnosis of cancer still gives you a better chance of this type of care – 95% of cancer sufferers get hospice support. Yet only 65% of the terminally ill over 65 get such access and lots of patients with other conditions are also shut out.

Many die in busy hospital wards, attended by doctors and nurses with limited time to spend on those they cannot save. Others die at home, supported by exhausted and emotionally drained relatives.

Ms Malcolm has come across many heart-breaking stories. “Sometimes it’s the simplest things that could have made the difference,” she explains.

The team firmly believes that terminal illness is not something that sufferers and their families should have to go through alone.

“When you find out you have a terminal illness and the doctor says there’s nothing much more they can do for you that’s a terrible, terrible shock,” says Sister Rita. “Everything in your life is going to change.

“But where a hospice comes in is in making sure that the quality of the rest of your life is as high as possible. The earlier people are referred the more help and support they can get and the better their quality of life can be.”

It makes her angry that not everyone is offered it. “You have the government telling people that they have the right to this kind of care, that they have the right to choose,” she says. “So where’s the money? They shouldn’t make promises that they can’t keep.”

Government funding of 85% of costs would be “a fair, just and reasonable amount” she says, and would help ensure that vital services such as St Margaret’s are not lost.

The team is currently lobbying the Scottish Government for as much. And with a current refurbishment programme of the hospice planned, the pressure to raise funds is greater than ever.

Sister Rita takes me on a whirlwind tour to get the views of the people who really count – the patients. Upstairs is 41-year-old David Martin, who has cancer of the spine. He has been here for around a week, getting respite care for the second time since diagnosis five years ago.

He’s also spent time in hospital and compares the difference between the two as “like night and day”. What he appreciates in St Margaret’s is that staff always have time to talk, and difficult subjects are never off limits.

“It’s very hard to speak to your partner about what’s happening,” he admits. “So talking to the staff is a real help. I’m sure my wife appreciates that too.”

Along the corridor 62-year-old William MacDonald is confined to bed by the severe effects of a brain tumour, but his blue eyes are still sparkling. He says that within days in the hospice he felt more relaxed, which has helped keep him in good spirits.

“Being told you have a terminal illness turns your whole life upside down and it’s very hard to adjust,” he says. “But the care you get here is so nice. In a normal hospital you’d never believe this is possible. Nothing is a bother to staff here. In the hospital you could shout for the nurse for 20 minutes and nobody would come.”

Nearby, 81-year-old Jessie Reilly admits that before she arrived she thought the hospice was just somewhere you came to die.

“Coming here I was scared stiff,” she says. She was also in severe pain and extremely distressed. Now, having spent the morning at the arts and crafts workshop, she is sitting happily in the armchair by her bed.

This, says Sister Rita, is the minimum of care that everyone should get at the end of their life. She is currently watching with interest the progress of an English bill presented to the House of Lords by hospice patron Baroness Finlay of Llandaff, which calls for all health boards to put a palliative care strategy in place and be held accountable for its delivery.

If it becomes law in England, surely Scotland would have to follow suit. In that case, Sister Rita believes the support for a change in the law to allow assisted dying for the terminally ill would fall away. She says those in favour don’t know how good palliative care can be.

Sister Rita believes the terminally ill are encouraged to feel like a burden to society. “We are turning against the disabled and sick,” she says. “Good care is expensive so you are going to get people saying why are you keeping that person alive for three months when we could have that bed? Life is sacred and we should hold on to it.”

Her staff are in agreement. With the right care, pain is almost always manageable they claim, with the holistic approach offering remarkable results.

“It’s also about recognising that when the pain can’t be taken away, we can help adjust your lifestyle and find coping strategies,” explains Ms Malcolm.

She says: “We were talking recently about the benefits of having this time at the end of your life, and I realised that some of the most beautiful people I’ve ever seen are those who are dying.

“The body is decaying but the inner life seems to blossom.

“It’s up to us to make sure that people get the chance to have a sense of completing their lives.”

# Should the Label Really Matter – a two-day conference about end of life care organised by St Margaret of Scotland Hospice – is on October 4-5.