Palliative Care?

I am often asked, “so do all the children you support have cancer or HIV?”

This fascinates me as there are so many other conditions requiring good quality palliative care. I am sure it has something to do with the publicity that cancer and HIV get worldwide.

Next month is both World Cancer Day, celebrated every year on the 4th of February and International Childhood Cancer Day on the 15th. There are awareness months for childhood cancer, skin cancer, eye cancer, cervical cancer, breast cancer, bone marrow stem cell donation and Leukaemia; a week for CANSA care, and even a day for cancer survivors. And lastly let’s not forget National Bandana Day.

Locally, there are over 11 non-profit organisations dedicated specifically to support children with cancer and their families.

And while this is truly wonderful – a lot of good people raising funds and doing amazing work – there are children suffering with other conditions receiving little or no support at all.

So as Umduduzi – Hospice Care for Children, Member of PatchSA (, our aim is to raise awareness for palliative care and for all the children that need it.

“Palliative care for children is the active total care of the child’s body, mind and spirit, and also involves giving support to the family.  It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease. Health providers must evaluate and alleviate a child’s physical, psychological and social distress.  Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited.  It can be provided in tertiary care facilities, in community health centres and even in children’s homes.”
World Health Organization 2002

So the children we see range from newborn to 18 years of age. They have a variety of conditions including congenital or inherited disorders, organ failure, prematurity, neurological deficits, infections and of course HIV and Cancer. Every child with a condition that causes symptoms needs some form of palliative care whether it be emotional support or pain management. And regardless of the condition, their parents need support too. We may not be able to prevent all illnesses but through palliative care we can offer a different strength and hope.

Please help us in 2017 to raise awareness, because when individuals understand what palliative care is and its benefits they can start to ask for it and only then will the supply need to meet the demand.



Living and Dying in Pain: it doesn’t have to happen

ct7j-e6wgaale9dTomorrow, the 8th October is World Hospice and Palliative Care Day; the theme this year is ‘Living and Dying in Pain: it doesn’t have to happen’. So why does it?

75% of the world’s population (5.5 billion people) have no or inadequate access to controlled medications for moderate to severe pain. The scary thing is that in South Africa although we have excellent availability to morphine in both private and state sectors, patients are still not accessing it. In 2014 our statistics showed that we used the equivalent of 10mg per person compared to the UK who used 270mg per person. Our pain management is pitiful!

There are numerous barriers to adequate pain management; the first being health professional and public attitude to strong medications. Somewhere along the line, Morphine acquired a very bad reputation. We call this opiophobia – and it is exactly that. The Fear of Morphine. The use of morphine is poorly understood and poorly taught and therefore the myths about it abound and continue. The average doctor in this country leaves medical school with less than 4 hours of training in pain management under their belt. And yet pain is a very common problem.

Secondly, it seems we are more concerned with restricting drug use, worrying about addiction spending vast amounts of money policing and jailing addicts, than we are about pain control. In countries where they have decriminalised drug abuse, addicts are managed as patients and the budget redirected to rehabilitation programs – a win:win all round.

So what can you do?

To people and their families in need of pain relief

  1. Know your rights to palliative care and pain management and demand these from your healthcare providers and governments.
  2. Talk to your healthcare provider about the options for pain management for yourself or your family member.

To healthcare workers

  1. Educate yourselves on the facts around controlled medicines for pain management
  2. Lobby your hospital administration and government to ensure access to pain treatment for patients in need
  3. Give your patients and their families accurate information regarding management of their pain.

Pain relief should be seen as a human right. However at present many patients, both adult and children are left to suffer in pain because of a lack of awareness and education. #TimeForChange #JustSaying



Little things can add up..

People are always asking us how do you do your job? And fair enough, you must be a little mad to want to work with very sick children. But amazingly, although that part of our work is really difficult there are other aspects that make it so much harder. Let me explain using some real examples…

Jabu sent me an SMS today. 2 weeks ago she lost her 4 year old son to a debilitating kidney problem; he died very comfortably with dignity at home with the help of Umduduzi. She is missing him dreadfully. But the loss goes beyond this heartache to absolute destitution. You see children with chronic illnesses that require 24/7 care are eligible for a government grant of R1400.  But when the child dies the grant goes with them. Jabu had to give up her job to care for her precious son. Now she is stuck, jobless, starving and grieving.

Cindy lost her 13 year old son 2 months ago to advanced cancer in the care if Umduduzi. She has an alcoholic husband and an older son who is always in trouble with the law for drugs. She too had to give up her cleaning job to care for her child and has not been able to find work since he died. Stuck, starving and grieving.

I could go on but won’t not only because some of you have already stopped reading but because just writing about these families I have tears running down my face. The list is endless. We are left feeling so helpless. Of course we buy groceries her and there; providing what we can when we can, but these are not long term solutions. As a palliative care organisation we have to remain focused on palliative care; we could get completely swallowed up into a feeding scheme and lose sight of our goals. As an organisation with rare expertise we cannot let that happen.

I can hear compassion-fatigued and cynical friends saying – the government should be doing something. Yes, of course they should but these are people that no one has ever really thought about. So vulnerable and marginalised.

We do our best to network with other NGO’s providing different packages of care but would be grateful for any ideas, helpful ways to support these grieving parents.

If you are short of ideas but have a little cash to donate, that too is also being part of a solution.  No donation is ever too small.

As Tim McAvoy said, “those little things can add up to a big difference”…

those little things can add up

Who’s to blame?


I love my job. Working as a paediatric palliative care practitioner over the last 13 years I have had to have some really difficult conversations with both children and their parents. So in the last few years it makes sense that I have been invited to teach final year medical students communication skills.

Believe it or not, it is really quite fun.

I feel really privileged to have time with these young ‘doctors to be’ at this point in their careers; they have seen enough disease, human drama and tragedy to be fully sensitised to reality, but are not yet jaded by their own fatigue and weight of responsibility.

What they have seen though, is numerous senior colleagues that are burnt out or who have developed a protective shell so hard they come across as arrogant and dismissive of both patient and student. It is fascinating to listen to them discussing these issues in a safe place and my hope for a future generation of empathetic doctors that are humble, respectful and good at communication soars.

But I am not naive or optimistic enough to think that this future ideal is a reality. On the contrary – our doctors train in an impossible environment; resources are scarce, language barriers and subtle racism are ever present; hierarchy overwhelms any possibility of a nurturing environment which is actually required to ignite compassion. And compassion begets compassion – seriously lacking in our health care system. Getting further in your career requires proving yourself to our colleagues, not to our patients.

I am sure many reading this will assume I am referring to the public sector. However all doctors start in the public sector and very often when moving into the private sector find themselves  alone, battling the balance between patient expectation and the ever powerful medical aid schemes.

And on the other hand, patients have a lot to answer for. They stand for it. Too often patients are still scared of the doctor. I think of the times that I have received substandard care or poor communication at the hands of some very well acclaimed professional and let it slide. It is easier to complain to friends and family after the fact.  The last time I stood up for patient rights in a personal capacity, the physician accused me of wanting to kill or euthanase my own father!

But perhaps our health care system needs something different. Litigation or suing rude and offensive doctors is not the solution to improving health care. If we are all too busy practicing defensive medicine, where patient and doctor are enemy, there is less investment in improvement in care.

I believe it is time for system change, where complaints can be handled in a constructive manner that results in a ‘win:win’ situation. This requires a paradigm shift where patients feel empowered to complain to have their problems resolved, and can be guaranteed that the complaint or concern will be dealt with in a compassionate manner. Doctors would in turn be able to handle complaints effectively – doctors are human; mistakes will happen – they should be brave enough to acknowledge this without fear of prosecution and punitive measures unless of course they were purposefully negligent.

This seems like a pipe dream but perhaps one day the rights of doctors and patients will merge so that a truly equal health care system based on mutual respect can emerge.




Compassion Flourishes in the Face of Suffering


We are suffering a terrible drought in our province; East Coast Radio started a campaign of asking people to donate bottled water to be delivered to the worst hit areas. The response has been overwhelming. Utterly amazing. 260 000 litres donated in just a few days. It is really heart-warming just how rapidly the public have responded.

But it got me thinking – people rally when there is a crisis. Human compassion flourishes when suffering stares us in the face.

So why is the public not up in arms demanding access to palliative care? Palliative care is all about relieving suffering in the ill; about quality of life. Most of us are going to get sick and yes, we are all going to die. Being ill is a very vulnerable time and I cannot think of a worse fate than suffering at the end.

A friend of mine’s husband passed away this week with a cancer. Chatting to her on the phone in his last days she was so comforted by the hospice nurse who was visiting every day. She said, “He is home. He gets to be with his 3 sons and me at home.”

How does one put a price on that?

But it does have a price. Hospices employ professional people to care for the sick and dying. Should they not earn a decent salary for that?  Almost all hospices in South Africa are run as not for profit organisations with no government funding. The salaries are well below market. Should caring for the terminally ill have to come at such a personal cost? Is it fair that we expect these organisations to run on the kindness of volunteers?

I believe we are in a crisis in this country; patients including children die in excruciating pain everyday but it remains unseen. And I guess we all hope that it is not our problem and won’t be any time soon.

But yes, we all die. It is just a matter of when.


I want to do nothing!

Happy new year from Umduduzi.

I have just had the privilege of being away with my family in a place my kids and I had never been to before. We were on a stunning beach island for 7 days. By day 4 my 8 year old put his foot down. In a hot-faced teary mini-tantrum he refused to go to the beach again.

Me: But you love the beach and this is a beach holiday.

Son: We have been to the beach every single day! We have spent more than 50% of every day on the beach. I’m not going.

Me: Well what woþuld you like to do?

Son: I want to do nothing! I want to stay at home and chill. I want to play Lego with my cousins.

In my mind all we had been doing was chilling, but for an 8 year old everyday he had been following someone else’s program. Up you get; brush your teeth; breakfast time; we are leaving in 10 minutes… But Mom I was just in the middle of…. Sorry my boy, it’s time to go. You can finish later….. And so the cycle continues. My autonomy trumps his every time.

And this is how it is in medicine so often. Doctor knows best, holds the power and the patient kind of has to go along with it. Being ill leaves us vulnerable – you are not feeling well and have to rely on the expertise of the health professional.

From my own experience, I believe the default position of all involved is one of positivity. Most patients hope for the best, underestimating the seriousness of the condition. Most doctors want to cure, to fix and when things start going wrong very often tend to offer the patient over optimistic treatments. It is easier to keep offering alternatives than to have the difficult conversation that perhaps doing nothing is the best way forward. Doing nothing is seldom given as an option at all. It seems that the doing nothing option would be like abandoning a patient or destroying hope.

But doing nothing doesn’t have to mean literally doing nothing. It can mean stopping treatments that are causing more harm than good, changing the focus of care and offering a different kind of hope.

Palliative care is not about doing nothing; quite the contrary. Palliative care is about doing something different. The palliative care practitioner remains the health care expert but encourages the patient to bring their own expertise -as the expert on their lives – into the arena. The patient and family are given power to make choices that are good for them.

Facing serious illness is a time of huge anxiety. Recently the father of a newborn with a dreadful condition described it so succintly. He said facing their child’s illness is like being told that you have to eat a box of food. You have to eat everything in the box whether you like it or not. But no one can tell you how big or deep the box is. You just have to keep eating not knowing how or if it will end.

Families should be assisted to navigate this time and palliative care can offer that. But sadly not enough health professionals are trained to think in this way.

So back to my holiday, we had one day where we did nothing. Recognising my child was not simply being a brat but rather that he needed to be respected as a participant in his own life. He needed a moment to be autonomous to make decisions that felt good for him.

Perhaps sometimes doing nothing or rather doing things differently is a valid option…

Perhaps patients need to start asking about palliative care and expecting their health professionals to be able to do it differently.20160112_111923

My Cup Has Overflowed!

IMG-20151218-WA0004[1]Last night I had the privilege of being counted as a good friend.

The woman who called me her friend, organised a wonderful Christmas dinner to honour and celebrate some of the relationships she has made over the years; such a special evening.

But the evening wasn’t just about fun, although much fun was had, it was also about giving back – each of the friends attending was asked to bring a donation for Umduduzi.

I was overwhelmed by each person’s generosity and willingness to support our project.

Umduduzi is the Zulu word for the comforter and to to raise funds we have been running a campaign ‘Crumbs for Comfort’, asking supporters around the world to organise small events .It is a glorious way to catch up with special people, have fun and contribute to a worthy cause.

During the evening our host read us this poem.  I thought was too good not to share.

“My Cup Has Overflowed”

I’ve never made a fortune, and it’s probably too late now.
But I don’t worry about that much, I’m happy anyhow
And as I go along life’s way,
I’m reaping better than I sowed.
I’m drinking from my saucer,
Cause my cup has overflowed.

Haven’t got a lot of riches,
and sometimes the going’s tough
But I’ve got loving ones all around me,
and that makes me rich enough.
I thank God for his blessings,
and the mercies He’s bestowed.
I’m drinking from my saucer,
Cause my cup has overflowed.

I remember times when things went wrong,
My faith wore somewhat thin.
But all at once the dark clouds broke,
and the sun peeped through again.
So Lord, help me not to gripe,
about the tough rows I have hoed.
I’m drinking from my saucer,
Cause my cup has overflowed.

If God gives me strength and courage,
When the way grows steep and rough.
I’ll not ask for other blessings,
I’m already blessed enough.

And may I never be too busy,
to help others bear their loads.
Then I’ll keep drinking from my saucer,
Cause my cup has overflowed.

Author: John Paul Moore

Have a wonderful Festive season and may we all drink from our saucers in 2016!

Take a moment..


What a crazy week it has been. In 6 days I have fulfilled family commitments in Johannesburg; co-hosted the movie premiere ‘Little Stars’ as a fundraiser for our work; run a 3 hour workshop in Paarl (nowhere near Durban or Johannesburg); had 12 new patient referrals (all children with serious illnesses) and experienced a ‘smash-and -grab’, losing my handbag, reading glasses (using large font to write this!), ID, driver’s license and all my bank and store cards. And of course, my window is not standard shape so it is going to take some time to replace. Insert sad face with head in my hands.

I have found myself saying when is it going to stop? Just how much crazier can this year get?

But the little voice in my head answers me; I think it might be my mother. Julia, things can always get crazier. Just because things are bad doesn’t mean that they can’t get worse. Ask the parents of the children you work with just how much crazier life can get.


And as for when does it stop? Right now. It stops right now. I have just been struck by the overwhelming sense of privilege I have. I am sitting on an aeroplane, stuck in peace for 2 full hours, with no cell phone reception. I am high above the earth’s surface looking down on the spectacular glory of the Drakenstein Mountains. I have all this time to reflect on my beautiful life and family.

I get to think about how lucky I am to have found my passion. I am not just happy in my work, I am utterly passionate about palliative care for children. Some people work a lifetime and never enjoy their job.

And sure, some of you are thinking that I’ve officially leapt off the deep end and it is quite likely that by the time I land, the normal irritations and frustrations of life, especially life at an airport, will have crept back into my blissful existence. But for now, it has stopped.

I had a moment, more than a Facebook quote moment. A real moment of happiness and gratitude.

How will you find your moment today?

Beautiful gestures

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Umduduzi – Hospice Care for Children has been very blessed recently. We have received two significant donations from families choosing donations to Umduduzi, in lieu of flowers after the death of their loved one.

It is such a beautiful gesture that translates into real action for an organisation such as ours. While my florist friends are surely not pleased when this happens, it makes a huge difference in the forever ailing NGO sector.

It is also a very meaningful way to honour the memory of a loved one.

But I have a few amazing friends that haven’t even waited for their funeral. They have chosen to forsake being lavished with gifts for their birthdays, asking instead for donations to their chosen organisation. This to me is also incredibly generous.

One friend said jokingly, “You know, it makes me feel very popular, because even friends who would never have given me a gift, manage to donate to a worthy cause!”

Another said, “It’s not generous at all. While I am so grateful to be thought of on my birthday, I just couldn’t stand getting yet more candles, bubble bath and chocolates that I wouldn’t be able to use before my next birthday! And re-gifting is not for me.”

Whatever the reasons, I just think, wow. Beautiful gestures like these do actually translate into meaningful donations. It’s a win:win and where would we be without this kind of support?