4 months is a very long time….

As the nurse introduced him to the other children, this skinny boy stared hard at the floor, tears streaming down his cheeks. He was being admitted to the multi-drug resistant TB unit at King Dinizulu Hospital. A long way from home or anything familiar, the other more experienced children quickly came to his aid. “Come and sit with us. Join us colouring. Here, sniff this sticker – it smells like fruit.”

I witnessed this ‘lump-in-my-throat’ interaction when I visited our early childhood development programme – Ekhaya Lihle last week. It is based in the multi—drug resistant TB unit. This unit is the only one in KwaZulu Natal so children are admitted here from all over the province. The average length of admission is 4 months and treatment consists of numerous pills and syrups.

Before COVID-19, family members were allowed to visit but some children don’t see a family member for their entire stay because of distance and cost of travel. Of course now, no visitors are allowed.

There is a department of education school on the premises of the hospital but it has also been closed during the lock down.

Ekhaya Lihle which was started for the pre-schoolers, is now a life line to all the children in the ward. Sandra Langa, our teacher, puts a great deal of enthusiasm and energy into providing educational activities to these precious souls. The healthcare team in the unit, together with Sandra become their family during this time. And to each other they become siblings.

Just before I left, one of the younger babies started to cry and was rapidly comforted by another child. I managed to catch them in this photo.

We are often asked; how do you do your job? My standard joke response, is that I drink wine! Well thanks to Cyril and COVID – not so much anymore.

But in all seriousness, we can do our job because we are making a tangible difference in the lives of the children and families we work with.

Help us to continue our work by clicking this link.

Mind the Gap

I have just come off two different zoom meetings and am left with and overwhelming sense of ‘Mind the Gap’. If you have travelled on the underground train system in the UK you will be aware of the voice over the loud speaker on repeat, that reminds passengers to ‘mind the gap’ – don’t fall between the platform and the train. It is now an iconic phrase.

It is starting to feel that way in palliative care. For years, the palliative care community has been pleading with the medical fraternity to adopt the principles of palliative care. And NO, palliative care is not the same thing as end of life care. It is about filling the gaps in caring for patients. It is not disease focused, it is not territorial and it is not about the doctor.

Palliative care is all about working in a team of health care professionals that can fully, truly see the whole patient in front of them.  And who is the patient?

Right now, we have patients that we can’t fix. We have always had patients we can’t fix, but now COVID-19 has taken this ugly fact and smashed it into consciousness. Suddenly health care workers are acutely aware of the gap and they are scared; because it can’t be fixed with PPE or a ventilator.

Health care workers all over the world are being confronted with extremely ill, highly symptomatic patients that deteriorate rapidly. They have little or no training in the management of pain and shortness of breath. They have little training in caring for the dying, let alone the patient that is dying alone, separated from family, isolated from others and disconnected from their healthcare worker by what looks like a space suit.

Caring in COVID-19 is requiring raw honest conversations with patients and their families. Very often only over the phone.

This is the gap in healthcare; caring for the whole patient only highlighted now by the sheer volume of patients and level of distress in healthcare workers and society across the board.

My only hope is that post COVID-19, in our new normal, the world will have recognised the value of palliative care and not lose what we have learnt.

All seriously ill patients have the right to good palliative care. Let’s go back to being human!

For further resources refer to www.palprac.org

 

 

#PalliativeCareinCorona

What crazy times we are currently living in! The COVID-19 pandemic has touched everyone’s lives in some way and no-one is sure when “normality” will return. We can guarantee that whenever that is, it will be a normal like nothing we have ever seen before.

As South Africans we went into total lockdown on 26^th March 2020. No-one, except essential services were allowed to leave their homes. This has basically continued on varying levels since 1^st June 2020. Many people have lost their jobs and families have been affected on so many levels. As an essential service we have continued our work, visiting hospitals and where possible doing home visits – permits to travel in hand. Our families, who already experience a high level of stress given their childrens’ diagnoses, are even more stressed. Do they bring their child to the hospital for their appointment? Will they get COVID-19 if they travel? What would a COVID-19 diagnosis mean on top of the existing condition? Do we let someone from the home go and buy food? Can we afford food?

Umduduzi – Hospice Care for Children’s services have warped slightly in this time becoming more of an advice station and a food supplier. Many of our families no longer have any form of income as they were not permitted to continue their specific line of work during lockdown. Some still have been unable to earn a living despite some of the restrictions being lifted because what they do for a living is still banned. Families are desperate and we have stepped in where possible to assist with food vouchers and food parcels. Unfortunately, these only meet the need for a short time and we ourselves have limited resources because of COVID-19.

As a donor-funded organisation we rely on fundraising initiatives to raise money. With the onset of lockdown all of our planned events were cancelled and it is unlikely that the rules will change before year-end to allow us a chance to raise much-needed funds.

The world has changed forever but the need for palliative care remains. Thank you to everyone that has enabled us to do out work – to provide comfort and care to children with life-limiting and life-threatening illnesses – something that has become even more imperative in the time of COVID-19.

Tracey Brand, Global Giving Report June 2020

 

Hope vs Denial

Isn’t hope a wonderful thing? It is part of the essence of the human condition.

Some of you that are Facebook friends will know that we have had some bad luck lately; nothing too serious but our appliances, cars and other electrical goods have conspired to ensure a co-ordinated draining of the bank account.

I heard an advert for the National Lotto today. Suddenly, I know I can win. I am plotting a way to stop and buy a ticket. The one thing I can remember from my statistics course is the following: “Statistically you are more likely to die in an accident involving a mattress or a pillow, than you are to win the lottery.”

Sigh, I still spent my lotto winnings in my head!

It’s hope. And we all need to have hope.

I saw a child and mother this week that have left me reflecting on hope and what it means.

The child is an insulin dependent diabetic. The blood sugar hasn’t always been easy to control and the child has had previous hospital admissions for this. The most recent admission resulted in such deranged blood sugar causing fitting and ultimately brain damage. The condition is bad, really bad. However, the mother puts on her make-up, comes to the hospital smiling and greeting us all warmly, in a heartbeat gets involved in the care her child.

Now, part of my job as a paediatric palliative care is to prepare for the worst while hoping for the best. Mom and I have a 90-minute heart to heart and we talk about everything. Mom doesn’t want to prepare for the worst. She knows her child will get better. Despite all the counselling to the contrary, Mom knows we are just health professionals; we are not God. So I try again. I ask her to consider the worst case; what if the sugar becomes difficult to control and her condition gets suddenly worse?

What I am wanting to do is write an advance care plan to ensure we only act in the child’s best interests and do not in any way increase suffering. Mom smiles knowingly, she says, “Doctor, I know what you are trying to do. I hear you. I am not in denial. We have a funeral insurance policy and will use it if we have to. When God wants my baby, He will take her. So until then, I will love my child and hope for my child as a mother should.”

I am often called to a parent “in denial’. It’s a term doctors love. But more often than not, during open and honest conversation we find that hope is not the same thing as denial. Hope is a coping strategy. It’s a survival skill and a parent’s drive to advocate for their child when the health professionals lose hope.

It’s not necessarily and certainly not always a bad thing.

 

 

 

 

Religion – A double edged sword?

Working with seriously ill children, we meet families from many different cultures and religions. One thing is abundantly clear; those with faith trust their God way more than they trust their health professionals.

That said, I am often left wondering if religion is helpful or harmful. Of course one cannot generalise but let me describe a few cases to illustrate my point.

The mother who is actually terrified of losing her child, she can see him getting sicker and sicker, but she cannot talk about it. She cannot voice her fear as her family will tell her she has lost her faith. “God heals. You must have faith.” Ultimately she feels like it is her fault that her child dies – I should have had more faith.

The teenager who cries with me for over an hour. He feels abandoned by God. “I pray, I pray so hard every day for God to heal me. Why won’t he? What did I do wrong? Maybe he is not even real.”

Another teenager who is overwhelmed by cancer and so ready to die but his father knows he will be healed. We have all heard of people “hanging on”? Well this child is hanging on, dreading letting his father down.

Then there is the mother who is asking questions, “why me, why my child?” and the well-meaning nurse who says, ‘Don’t cry, it is in God’s hands”. And in one moment, the mom is shut down, forbidden to grieve out loud.

The parents of a new born with a lethal heart condition; their stranger neighbour approaches them to say they must just keep praying for a miracle, not stopping to check that they are actually atheist and find no comfort in his words.

I suppose really, it is not religion that is dangerous but rather the user. The individual that is so wrapped up in what they are feeling or needing to believe that they cannot show compassion and empathy for what another is going through.

It is the human condition to question and search for meaning and answers. Let’s learn to think before we speak. Examine our motives before offering what we believe will be comforting words. Listen first and listen to hear. To hear what the other really needs, not what we need or think they need.

Its that simple. Stop. Listen. Love.

 

Where should children die?

I hear you answer, they shouldn’t. They just shouldn’t die.
But they do. More often than you would think.

So back to the question… Where should children die?
It has taken me a while to get down to writing this; it is enormously emotional topic for me. I have shed many a tear when trying to help families in this situation.

Let’s look at the options.

Hospital? As I have experienced many times in the last 15 years, dying in hospital is not straight forward. Firstly, nurses and doctors are not trained to allow death. They save lives. Death?? No, that must happen somewhere else. Anywhere else or at least not on my shift!

Then if we need intravenous morphine for pain, hospital policy dictates that this cannot be given in an ordinary ward. Doctors and nurses are not trained well in pain management and there are huge fears and myths around the use of morphine. The child has to be transferred to ICU – intensive care -where their vital signs have to be monitored with alarms continuously bleeping, traumatising the family and child. Visiting hours are very limited in the intensive care just when the family should have as much access to their child as they want. So if the family choose privacy and unlimited time, they need to be on the ordinary ward where we hope the pain can be controlled using oral medication only.

Hospice? If you have one. There are very few in-patient hospices and even fewer that will admit children in South Africa. Sad story but true.

Home? If you are an incredibly brave parent. It is scary and overwhlemingly stressful. Professional home care is also limited in availability and of course comes with a cost. The parents must become doctor, nurse, physio and psychologist to their dying child. This is a journey that many have faced with grace and most of us cannot imagine.

So, where should children die? How do parents access the physical care, love and support required to allow their child to rest in peace?

It is time for us to start talking about it. We need to challenge the Department of Health and medical aids to provide this care and refuse to accept outdated hospital policies that are aimed at protecting the hospital and not the patient.

Perhaps the crux of the problem is that we don’t want to think about it. We cannot bear to imagine the pain and horror of a sick and dying child. But it is a reality that affects parents and children all over the world. Whether we want to acknowledge it or not, the dying child deserves dignity and high quality care, right until the very end.

Surviving the Health Care System – Patient Rights

It is Human Rights Day in South Africa – one of my favourite awareness days of the year. Yes, yes, largely because it is a public holiday but also because it gives us a chance to reflect on the past and look to our future.

After a discussion with a mom and dad the other day, I started to think about Umduduzi’s mission statement which goes like this…

Mission:

We bring compassion, dignity, relevant care and relief from discomfort and pain to children diagnosed with a life threatening or life limiting illness within KZN. We do this through direct patient care, mentorship, empowerment of caregivers, training and advocacy.

So what do we mean by ‘empowering the caregiver’. When we wrote this statement the idea was to support parents (or caregiver) to cope with their child’s condition and to empower them to manage the child’s symptoms and disease. It is about giving them choices and control at a time in their lives when everything feels out of control. They are living a hell they wouldn’t have chosen for themselves.

This conversation prompted a deeper thought.  An enormous part of managing your child’s illness is negotiating the healthcare system; appointments, blood tests, treatment options, costs, transport, and what you are entitled to.

From feedback over the years, perhaps the worst and hardest part is dealing with multiple specialist doctors and their ego’s – being sent from pillar to post between doctors who don’t communicate with each other and the intimidation of the hierarchical structure and consultants who don’t like to be questioned.

The state and private sectors in this regard are equally as bad. And although there are exceptional exceptions and doctors who are kind, caring and approachable, encouraging parent involvement and engagement, most seem to be trapped in the importance of their own business and forget that each child and family are individuals. There is an inherent arrogance in the health care system that can cause secondary injury to an individual who is suffering already.  You can almost hear the sound of ‘we are trying to help you so you better do what we say regardless of how that affects you or your life!’

So perhaps this Human Rights Day we need to start thinking about how we facilitate patient and parents’ rights. How do we empower the parent to tackle the system and the providers in a constructive and positive way?

I would love to hear from parents and family members – what do you wish you had known when you started your journey? If something could have helped you, what would that be? Perhaps there is a booklet here – Forget your child’s illness – how to manage (or survive) your doctor and the health care system!

Happy human rights day!

Being ‘there’ – palliative care

A year ago I wrote a blog trying to explain what we do- what do we actually do in palliative care? But still folk are confused so here we go… I quite like this recent definition coming out of the USA.

Palliative care is specialised medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness – whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient’s other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.

So how does this translate into real patients and families?

It has been a tough year so far. We have said good bye to too many children, some whom we had known for years.

Amazingly it’s never quite how or what we expect.

‘Peaceful’ I will call him, was a beautiful child with an exceptionally rare progressive disease. He outlived his prognosis by years – I had almost started to question the diagnosis! Month after month they would attend the palliative care clinic, and he would just lie peacefully in his mother’s arms. He never complained or moaned. Just peaceful. During this time we helped the mom comes to terms with the fact he wouldn’t survive and supported her emotionally to live with the uncertainty of how that would look. We managed his itchy skin and his chesty cough and helped the mom to decide when to seek medical help. We gave her as much information as we could to help her cope. We found him a pram when he got too heavy to carry. Largely we were just ‘there’, a visit or a call away.
He died very suddenly at home a few weeks ago at the age of 5. Since then we have provided the mum with bereavement support and a home visit. That will be ongoing as long as she wishes.

‘Sunshine’ was a gorgeous girl, full of joy and brightness. She touched every life around her. Despite years of unpleasant symptoms and treatments she always arrived with a smile and usually some sweets for the doctors on call. There was nothing like a sunshine hug to make my day. Sadly ‘sunshine’ had a difficult few months at the end, but again, having known her and the family for many years we were ‘there’; from casual chats to more serious discussions about yet more bad news; getting her assessed and supported when she wasn’t coping at school; allowing her to express her feelings and worries; giving the family options about where she should be when she died; visiting at home to make sure she was comfortable and that the family were coping; answering WhatsApp questions when things felt too much or too confusing.

There have been many more of these amazing children living, surviving and thriving for years with their rare diseases.   Sadly dying comes too soon for many. But it is in the way these children and their parents live that they teach us all so much. Palliative care supports that.

So perhaps it is as simple as that. Palliative Care is being ‘there’ whatever that looks like.

 

 

 

 

 

My Cup Has Overflowed!

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!