In Defence of Medical Parole – Sunday Tribune 29/06/2014 p. 34

Medical parole is once again in the spotlight with Clive Derby-Lewis’s most recent application making headlines.

Derby-Lewis – who is serving a life sentence for the murder of South African Communist Party secretary-general Chris Hani in 1993 – is suffering from prostate cancer that has spread to his lungs. It seems he only has 6 months to live.

His first application for medical parole was on diagnosis in 2011. This was turned down. Could the fact that he is still alive – although very unwell 3 years later – reflect the fact that this was a very wise decision? Or perhaps it is indicative of a reluctance to endure a repeat performance of the enormous fallout triggered by the Shabir Shaik medical parole case of 2009 and Jackie Selebi’s release on the same grounds in 2012. Both of these high profile terminally ill patients are seemingly doing remarkably well since being released from prison on medical parole with press reports of them dining out and shopping abounding.

The law governing medical parole was amended and put into effect on 1 March 2012. Since then all applications for medical parole have to go through a single central Medical Parole Review Board, rather than decisions being made at a local level. Applications can now be made on the grounds of incapacitating disease as well as terminal illness.

Despite these changes very few ill prisoners are actually granted medical parole and some die while waiting for their application to be processed. Many die within the prison walls their deaths often extremely painful and undignified.

The critical question must be asked whether or not this is a violation of their basic human rights? Some argue that when an individual commits a serious offence they give up their rights – or should have their rights terminated – but this is incorrect and has no basis in law.

As a medical practitioner specialising in the palliative care of terminally ill patients and their families I would suggest that a terminal illness is significant punishment in its own right. Whatever your personal beliefs about medical parole and prisoners in general, The South African Constitution protects the rights of prisoners and their access to health care. This should include access to good palliative care. This is defined as an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering and through treatment of pain and other problems; physical, psychosocial and spiritual.

Since 2010 the Hospice and Palliative Care Association of South Africa (HPCA) has been working in conjunction with the Department of Correctional Services. Their aim is not only to put palliative care policies in place but also to train prison staff and selected inmates to provide palliative care services to dying prisoners. This ensures good pain and symptom control and a comfortable dignified end.

Whilst this is truly ground-breaking work palliative care also entails the psychological and spiritual aspects of patient care. Can this be done in isolation from family and friends? Good psychosocial support goes a long way but cannot replace time spent with loved ones.

Palliative care is possible in the prison environment but universal access is a long way off. Obtaining recent accurate figures is not simple but between 2007 and 2010 3000 inmates died of natural causes in prisons in South Africa. This represents an enormous opportunity to provide good palliative care in prisons.

There is no doubt that the medical parole system needs urgent review – in particular the time it takes for medical parole cases to be assessed. With literally thousands of criminals behind bars in South Africa causing a chronic overcrowding issue it would seem to make some sense to release on medical parole those who present no further risk to society.

Could it be that we have allowed the high profile cases of Shabir Shaik and Jackie Selebi to taint our whole view of medical parole and its benefits – not only to dying prisoners, but to the entire prison system? Are we now so afraid of making the wrong call – or being perceived to be making politically expedient calls – that we would rather see Clive Derby-Lewis along with thousands of unknown dying prisoners – spending their last days behind bars?

Dr Julia Ambler is Co-founder and Deputy Director of NGO Umduduzi – Hospice Care for Children.

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But it’s not in my culture….

So often when I am lecturing or teaching about having difficult conversations around death and dying with families and children, someone in the crowd will raise the issue of culture. “What if it is not in the patient’s culture to talk about death and dying, we can’t force ourselves on them?”

In 10 years of clinical practice in hospice and palliative care, I have never come across a ‘culture’ where talking about death and dying children was considered a normal, comfortable topic. We are all afraid in some way – so can we use culture as an excuse for not providing a dying child the opportunity to talk about the things that scare them?

For me, it is like President Zuma saying, owning a dog is ‘un-African’ and those black Africans that do are merely copying white culture. Really??? Just because traditions have cultural roots, it does not mean that they can’t be challenged or changed. The previous Nationalist party of South Africa, hid behind culture and religion for many years, allowing the most horrendous oppression of other race groups.

No, I don’t think that talking about death and dying should be avoided on grounds of culture. Good palliative care is about having a relationship with the child and family regardless of culture. It is about discovering sensitively, the needs and wishes of that family and providing space and time for them to deal with the issues they are facing. Our job is to walk alongside them on their painful journey and sometimes, that involves asking some tough questions.

There is some research in this area and the suggestion is that those families that planned ahead and had the chance to talk to their child about death and dying had fewer regrets than those who never went there.

I think it’s time to respectfully put culture aside and deal with each other as human beings. If we were able to look at everyone we meet and see them as a person with feelings and problems, rather than as Jewish or Muslim, black or white ( peach or brown as my kids would correct me), we could have a profound impact on moving this country forward.

 

 

You don’t get what you deserve!!!!

 

I have had such an incredible opportunity this last weekend to visit a beautiful luxury game reserve and have a real break. Many well-meaning friends and colleagues have been so kind in saying, ‘you deserve it’.

 

Then, while away, I overheard two brothers fighting; familiar territory having two sons myself. One of the boys fell after he had been really unkind to the little brother. The younger was quick to say, ‘that serves you right!’

 

It really got me thinking about how we all view the world. Do we get what we deserve in life? I sometimes feel, if I was really honest with myself, and I was to get what I deserved, I’d be on a short cut to somewhere really hot and full of fire!! Do I really deserve a luxury break more than anyone else? Did that little boy really deserve to get hurt after he had been mean to his brother?

 

To take it one step further, who deserves to lose a child? And what child deserves to suffer a dreadful illness? This last week we have said goodbye to 3 precious souls who all suffered tremendously in their short lives. We can’t start talking about being deserving!

 

How many of us, when struck by bad times or tragedy ask, ‘Why me? What have I done to deserve this?’

 

But perhaps there is another way to look at this. We could ask ‘why not me?’ Why should my life be better than anyone else’s?

 

Like in the case of the poor unsuspecting kudu that provided a sumptuous meal for 3 lion last night, that is life. We don’t get what we deserve. Good and bad things happen to all people regardless of who they are and how much good they have done in their lives. Period…

 

It’s all about how we deal with it.

 

Have a fabulous week!

Demons or angels

Working with children that are terminally ill can be really challenging as one would expect. I am often asked ‘how do you do your job?’ The answer is not simple. It is hard. Very hard. To be involved in other people’s pain and loss on a daily basis is really heart breaking and very terrifying.

Over the last few months we have been helping a 13 year old boy with a slow growing but relentlessly progressive tumor. He is going to die and his condition is deteriorating. A few weeks ago he started to have visions of dead people, that he describes as demons. Many children experience such visions; very often they will describe a deceased family member that is coming to collect them. Very often they are not afraid. But this young chap is afraid of his visions. He is scared because he doesn’t see them as being friendly. He doesn’t know them at all and although they are trying to get him to go with them, he doesn’t want to go. It is just so hard to manage this terror and reassure him.

Similarly, his family are afraid to talk about this with him. I suspect that even as adults they do not know what they believe, or what demons or angels really are. Who does?

What it does suggest to me is that we are all in some way afraid of talking about death and dying and yet it is the one guarantee we all have. That and taxes, of course. But why not start talking about it in a normal way. It is after all a normal process. Families and friends should be able to discuss their views, feelings and fears. Perhaps a shift in attitude is required. Not talking about it does not make it any more likely to happen or not!

At the same time our job is very rewarding. Being successful at my job, doesn’t rely on whether child lives or dies but rather on how well they do so. If we at Umduduzi have managed to make a child comfortable and walked with a family on this horrendous journey and eased even a fraction of their difficulty by leaving them feeling loved and supported, then we have done our job and done it well.

Dummie’s Guide to Pain Management

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Having a close relative in hospital and watching the Comrades marathon today, I feel compelled to write about pain medications; I am alarmed by three things:

1)      The general lack of knowledge with respect to pain medications

2)      The blasé attitude folk have to taking paracetamol and anti-inflammatories

3)      The reluctance of sick patients in real need of pain management to take strong medications such as morphine.

So here it is, your ‘Dummie’s Guide’……

Firstly, I don’t believe in a pill for every ill. Sometimes, drinking a glass of water, resting, stretching or using a heat pad may relieve pain significantly before you think about taking a drug. Having said that if you are going to take something, you should at least know what and why!

Pain medicines (also called analgesics) fall into different categories. The trick is to be able to read the side of the box or the bottle and know what is inside each tablet or spoonful. Take the box/bottle in your hand and flip it round until you see the writing that says: Each tablet contains MedicineName xxmg or each 5ml contains MedicineName xxmg. Sounds simple but can cause much confusion!

This is important because popular pain killers like Myprodol contain 3 different active medications and has the potential side effects to go with it.

Paracetamol

Alternative Names: Panado, Napamol, Perfalgan, Painamol, Painblok, Calpol

Used For: Mild to Moderate Pain and fever

Side Effects: Very toxic to the liver and kidneys in overdose.

The fact it can be bought in every supermarket has lulled people into a false sense of security – It can be lethal if abused. If taken in the correct dose, Paracetamol is very effective. Always my first choice!

For adults weighing over 50 kg, the maximum dose is 4 grams (8 tablets) in 24 hours.

 

Anti-Inlammatories

This group are all anti-inflammatory, good for fever, muscle ache, joint pains. They can be used on their own or in combination with Paracetamol, Codeine or Tramadol. Two different anti-inflammatories should not be used together.

 

  • Aspirin

Altnerative Names: Disprin

Used for: Fever, pain, thinning the blood

 

  • Ibuprofen

Alternative Names : Brufen, Nurofen, Inza

 

  • Diclofenac

Alternative Names: Cataflam, Voltaren

 

  • Indomethacin

Alternative Names: Arthrexin, Betacin

 

  • Mefenamic Acid

Alternative Names: Ponstan

Used for: Excellent for period pain

 

Taken regularly on an empty stomach, these can cause stomach ulcers (even if taken rectally!!!) Using these medications while exercising energetically can be very harmful to the kidneys. Be careful!

 

Codeine

Seldom used on its own, it is most commonly found in combination with Paracetamol and other meds like antihistamines, anti-inflammatories and caffeine.

Alternative Names: Panado-co, Napacod, Paracetacod, Stopayne, Stilpane, Betapyn, Tenston, Myprodol

Used For: Moderate to severe pain

Common side effects include drowsiness and constipation. Withdrawal effects can cause headache – so you take another two! Therefore prolonged use can be very addictive!

 

Tramadol

Again often used with Paracetamol, but on its own too. READ THE BOX!

Alternative Names: Tramal, Tramahexal, Tramacet

Used For: Moderate to severe pain

Common side effects are nausea, vomiting and sedation.

 

Opioids

Now let’s talk about the strong stuff like Morphine. It’s one of those drugs with a very bad reputation. It is perceived by the public and many health professionals as an end of life / hospice drug. So many people I speak to believe the bad press. Comments like, “I don’t want to become addicted” or “my granny was given morphine when she went to hospice and then she died”.

The truth is that morphine and its relatives are extremely useful, strong pain killers that the world really needs. Not just for the dying patients, but for those with severe pain that cannot be controlled or managed with the medications I have mentioned above.

Morphine does not kill people when used properly, and if used for severe pain, does not cause addiction. Admittedly if I were to go drink some of my cancer patient’s morphine, I might enjoy the effect a little too much and end up with a problem, but that’s because I do not have pain.

The ignorance about pain management is not restricted to lay people but affects many health professionals as well. There is huge and unfounded fear of the side effects and risks of addiction but I repeat, if used properly can control most pains.

If you or your family need pain management, don’t take it lightly. Do you research and understand what you are putting into your body and why. Similarly there is no need to suffer pain stoically when we have options these days to manage pain. When patients take responsibility and start asking for proper pain management, health professionals will have to start paying attention and improving their own skills.