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!

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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.