Protecting dignity of life as patients face death

Dr Clint Cupido heads up the Abundant Life palliative care programme.

You’ve probably heard the expression dying isn’t for sissies, and if you’ve ever experienced the grief that surrounds the loss of a loved one, you will agree with the sentiment.

Fact is, dying can be inconvenient, painful, complicated, heart wrenchingly sad and sometimes scary. At the risk of stating the obvious, it’s also inevitable: despite our best efforts, death will eventually come to all of us.

Most people are uncomfortable with the subject of death and its implications for those left behind; the very word conjures up thoughts of our own mortality.

However, Dr Clint Cupido, a deeply caring physician who heads up the Abundant Life palliative care programme at Victoria Hospital, believes that preparing for death is one of the most empowering things we can do. Wherever possible, he says, patients should be given an opportunity to talk about what’s coming, to decide where and how it will happen – and therein lies the challenge.

“Conventional “wisdom” suggests that terminally ill patients should remain within a hospital until they die, but increasing demands on medical facilities – and more importantly, the best interests of the patients – make it clear that it’s time for a change in our thinking,” says Dr Cupido.

“Whereas hospitals, particularly initiatives such as the Abundant Life programme, will continue to deliver their essential services, these can and should be supplemented by the practical and emotional support of the patients’ families and communities,” he says.

That said, he remains aware that there’s no one-size-fits-all solution for terminally ill patients. “This morning, I asked a patient where she would like to be when she died and she replied ‘in hospital’. When I asked why, she explained that there was no one at home to care for her. I’ve had five of these hard conversations over the course of a single morning.”

It’s fear of the unknown, a perfectly normal human emotion, as is the npredictability of people who know they are nearing the end of their lives. Logic and common sense may be subverted by very real emotions that can place a huge strain on families and other caregivers. “We’re told that grief and loss are characterised by five stages – denial, anger, bargaining, depression and finally, acceptance. However, some of these stages may appear in another order, or may be absent,” says Dr Cupido.

He says they encounter many patients who are more concerned about those they are leaving behind than their own situation. They worry about who will look after their children and who will pay the bills. “We help where we can with our limited resources, but we also try to bring in the community’s assistance where possible. We hold group discussions twice a month with patients and their families. It’s a powerful and important element of the Abundant Life programme. There is also a help line they can use to call at any time.”

Launching the groundbreaking Abundant Life concept seven years was an uphill battle, even within the medical fraternity. “Even those who liked the idea expressed concern about the probable strain on already limited resources and that South Africa did not have the money to finance palliative care,” he said, adding that this did not stop him or his colleagues.

All their work is research-based and they have regular contact with universities and other institutions all over the world.

Today, the of initiative is receiving attention from hospital administrators and healthcare professionals across the country, and other hospitals are following suit.

All of this comes at a cost, and whereas Victoria Hospital provides substantial funding for Abundant Life, there’s a shortfall that has to be supplemented by donations and external fund-raising initiatives. These include a second-hand shop, generous support from the Rotary Club of Claremont and some doctors donating their time. “Palliative care is an umbrella term encompassing hospital and hospice care and a few professionals working with volunteers in the community. We don’t have the resources or staff to deliver home-based care, so that’s where volunteers come in, spending time with each patient, three times a week. These volunteers require palliative care training but we can’t wait 10 years to train them, because we’re looking after people living with a terminal illness. Our approach is holistic in that we also need to consider those left behind. Our inclusive approach includes the spiritual needs of our patients, whatever those may be,” he says.

Asked what’s next for Abundant Life, Dr Cupido says first, their work needs to be recognised by the Department of Health. Secondly, they need money and more human resources, including many more volunteers.

Dr Cupido did not hesitate when asked what prompted his shift from conventional medicine to a focus on palliative care. “There’s an enormous need for it, and it’s the right thing to do. In fact, I plan to study for a PhD in palliative care… it’s where I want to be.”

If you would like to help, or for more information, contact Kathy Booysen at 021 799 1111 or log onto www.friendsofvictoriahospital.org or www.abundantlifevic.org