Stop Press! Palliative Care in the Limelight!

PRESS RELEASE: FROM THE BRINK OF DEATH

SPECIAL ASSIGNMENT: SABC 3, 20.00

DATE OF BROADCAST: 24 AUGUST 2014

PRODUCER: FATHIMA SIMJEE, Health-e News Service

 

Thousands of South Africans are diagnosed with life-threatening illness every year. Most of them will experience severe pain and won’t have access to cheap and effective pain medication. For those who die, many will do so without the basic human right of dying with dignity and without suffering. Palliative care is an approach to medicine that aims to change this, by improving the quality of life of patients.

 

Health-e News Service explores the need for palliative care in South Africa through the lives of patients suffering from serious illness in the upcoming documentary, “From the Brink of Death”. We meet the family of a child who was only given months to live, a suffering mother diagnosed with cancer and the doctors who are not only trying to save them, but are working towards relieving their suffering and protecting their basic human right to dignity.

 

“Even if you going to die or even if you are dying you have to die with dignity, you have to die clean, you have to die free from pains, you have to die next to somebody who has given you support.”- Palliative Care Nurse

 

Current legislation makes it difficult for people who are poor and live in rural areas to access pain medication such as morphine. This leaves many to suffer unbearable pain as they are stuck using over the counter medication.

 

“My children also cry when they see me this sick. It is very painful. I cannot sleep at night because of the pain. I need help. I feel so much pain.”- Busisiwe, Cancer Patient

 

Sadly palliative care is almost non-existent in both the public and private health sectors, and it is provided almost exclusively by NGOs in South Africa. Last year more than ¼ of a million South Africans died of AIDS-related illness and 15 000 were diagnosed with drug-resistant TB. Cancer cases are expected to double by 2030. With these harrowing statistics in mind, more needs to be done to improve access to palliative care to all South Africans.

 

Watch “From the Brink of Death”, this Sunday on SABC 3’s Special Assignment at 8pm.

 

Written and Directed by:

Fathima Simjee

Health-e News Service

Tel: 011 880 0995

E-mail: fathima@health-e.org.za

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Pennies from Heaven

??????????It’s hard to believe that it is already the middle of August. As an NGO we are at that dreaded time of year when we are starting to worry about next year; every NGO’s formidable challenge – funding and fundraising.

We have been working in KZN, providing care to children with life threatening and life limiting illnesses and their families for 6 years now (18 months as Umduduzi) and in that time, not one month has gone by when we have been able to feel financially secure; I never know whether I will have a job after the next three months. It’s a stressful way to live, but we are so passionate about what we are doing that it’s been worth the angst!

People are so well meaning; we often hear, ‘have you tried the lotto?’ ‘Surely there must be a company that needs their CSI points?’ and you can see them thinking ‘how hard can it be?’

It is hard; very hard. As a young organisation we have not had the funds to employ someone that will fundraise on our behalf. We have to do it all ourselves, apart from the volunteers that have helped us with events such as our Angel’s Breakfast. We find ourselves spending the day, attending to sick children, comforting their parents, teaching other doctors and nurses how to manage the dying child and then in between, we tweet and facebook and blog and write funding proposals. It all seems a bit mad.

Our other “problem” as an NGO, is that our cause is not sexy. It is very hard to promote terminal children as a cause. No one likes to think about it, let alone talk about it. One dear friend actually said that she thinks what we do is amazing but would rather invest in a child with a future. And I understand that. In a country like South Africa, where there is so much need in primary health and education, I can see exactly what she means. However, we believe that every child whether they have a long or a short future, should have the opportunity to live well until their last moment and when that moment comes, that they should be able to die comfortably, with dignity, surrounded by love and care.

At the end of the day, what every NGO needs is a regular income that they can depend on to continue their work.

To this end we are inviting individuals, couples, families and businesses to join our “100 club” sponsorship programme and contribute to the monthly running costs of Umduduzi – Hospice Care for Children. The aim of this programme is to get 100 people to each donate R100 a month for a minimum of 1 year.

Please help us to see how quickly we can reach this number!

Contact Julia@umduduzi.co.za for more information.

You strike a woman, you strike a rock

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On 9 August in South Africa it was National Women’s Day; a day that celebrates the bravery of 50 000 women who marched on the Union Buildings in Pretoria in 1956 to protest against the infamous pass laws. This law meant that all black South Africans had to carry a type of passport at all times, restricting where they could live, work and travel. The law affected all black South Africans; these women were standing up for human rights not only women’s rights.

This made me think of the women we work with at Umduduzi. Many are mothers, but some are grannies or great grannies or even just a kind neighbour that is stepping in to fill that gap and be there for an ill child in need.

I’d like to tell you about one particular family in Umduduzi’s care. 3 year old Bongani* has been battling with a very nasty aggressive cancer for 8 months, receiving chemotherapy at the central oncology unit in Durban. He comes from a very rural area, far into Northern KZN. Each time he comes to the hospital, they leave home at 2pm the previous day, sleep at their local hospital and catch hospital transport at midnight; that is 17 hours in transit! Have you ever travelled with a toddler? A well child is difficult enough!

He is very little and dependant on his mum for everything. He was referred to our team because his cancer has spread and it seems he is not likely to recover. Our task is to support his family through counselling, accompanying them on their difficult journey, and relieve his symptoms such a pain. His mother Sindi* always has a huge warm smile for us as she tends to her son’s every need; she is coping so well.

Having a long chat a couple of weeks ago, I asked how she was doing. Her response took me by surprise. She said, “Doc, I’m a bit tired to say the truth. It is a long way to come every week.” Every week? His chemo is every two weeks. “Yes Doc, I know, but I have to come every other week for my chemo. I have breast cancer and am nearly finished my treatment now.”

Flabbergasted. Suddenly I realised how I had been moaning that morning; stuck in traffic again; kid’s lost his hockey stick again; the dog pee’d in the kitchen again. I have had no idea what this poor woman has been going through; managing her own cancer treatment at the same time as her only son; traveling for ridiculously long periods of time every single week, fighting side effects. You know, she hasn’t missed one appointment and still smiles warmly to greet me.

It is this kind of woman that I salute on Women’s day; a woman so brave and selfless in her caring for her child. And she is not alone. There are women like her across the globe who we can admire and respect and hopefully learn from, even if it is just to count your own blessings!

*not their real names

Dying Matters

Printed in the Mercury, KZN, 30 July 2014

“Dying is part of life. We have to die. The Earth cannot sustain us and the millions of people that came before us. We have to make way for those who are yet to be born. And since dying is part of life, talking about it shouldn’t be taboo.”

These are the words of Archbishop Emeritus Desmond Tutu ahead of the UK debate on the assisted dying bill. Coming from arguably the most respected and influential cleric of our time they are words that have radically challenged narrow, frequently judgemental views on euthanasia.

And the words could not be more timeous. The stale old debate – is euthanasia right or wrong; or perhaps more relevant – Godly or ungodly – is right up there with other old chestnuts; abortion, the death penalty and gay rights. Mention any of these in religious circles and hives tend to appear.

The need for fresh ideas and dialogue around the historically sensitive issues of euthanasia has never been more necessary than here in South Africa where the last time this topic was discussed in any meaningful way was in the form of Report 86, titled: “Euthanasia and the artificial preservation of life” which included a Draft Bill: “The End of Life Decisions Act 1999”. That was 15 years ago. The issues have not gone away or for that matter gone anywhere.

The reality is that South Africans are still dying with precious little access to good palliative care and – as Tutu correctly points out training of health professionals in how to ease end of life has been largely neglected. In addition to this such advances have been made in medical science that we are now able to inappropriately prolong life leaving many believing that death is somehow no longer normal.

But death is as much a part of life as living. If we believe – as we should – that people have the right to choose how they live surely we should believe in equal measure that they have the right to choose how they die? This should in no way negate the fact that palliative care is and always should be preferable to assisted dying. It must be said that a lack of access to high quality palliative care is as much a violation of human rights as anything else.

At this point it becomes important to define assisted dying. We are not referring to a team of doctors taking a decision to administer a lethal injection to patients when the doctors feel that the patient’s suffering is too great. We are specifically referring to those patients who – in the clear light of day understanding their own illness and prognosis – wish to end their own life but may not be able to do so because of their underlying illness or disability. Very interestingly Britain’s Supreme Court has recently ruled that a ban on assisted dying is incompatible with human rights.

In reality this kind of assisted dying should only affect a handful of people that suffer from prolonged illnesses – mostly neurological – where, regardless of access to palliative care, quality of life remains poor and death not imminent. I firmly believe these cases should have recourse to explore all options to ensure that each individual can access the full spectrum of their rights as humans.

We should be enormously grateful to the Archbishop for bravely and honestly raising this topic but the message could leave the reader a little confused:

 “I revere the sanctity of life – but not at any cost. I confirm I don’t want my life prolonged. I can see I would probably incline towards the quality of life argument, whereas others will be more comfortable with palliative care.”

 It seems he believes that quality of life and palliative care cannot go together? And yet good palliative medicine is about ensuring quality of life for the terminally ill patient and their families. It provides relief from pain and other distressing symptoms and intends neither to hasten nor to postpone death. The vast majority of patients with terminal illnesses will benefit from this care, dying in comfort with dignity.

 This whole issue needs to come up for discussion not only at a national legislative level but also on a personal level. As individuals, we need to discuss our fears and wishes with our loved ones preparing well for that inevitable moment. For the terminally ill dying a pain free and dignified death should be a priority of our Government.

 And whilst euthanasia cannot be a substitute for good care and support at the end of life it must be an option in certain cases.