Experimental treatment

As some of you may know, the Ebola outbreak has quickly become the largest in recorded history. So far there has been a suspected death total of 1420, and is expected to rise even though the effort of the WHO and infected countries are trying everything they can to prevent further infections.

As of yet, there is no definitive treatment for Ebola, however there have been reports of a drug called ZMap which has the potential of being a cure. ZMap has undergone no clinical trials and it has only been used to treat 6 patients, 1 of which has died and the other 5 are alive and recovering. Many people would like to use this experimental drug for the treatment of Ebola, even without any proof that it works, as of yet it has not been tested in humans for safety and effectiveness. Nothing can be for certain until a randomised control trial is done.

At the moment, more of this drug is being manufactured to be available as experimental treatment. Now I understand the seriousness of this outbreak and the need for effective treatment, but is it really a good idea to hand out experimental drugs which may or may not assist in the healing process and could potentially do more harm than good?

The ugly examples of experimentation

Many a time, first world countries have experimented with drugs, treatments and vaccines on third world, developing countries. Some examples of this:

  • 1990s- meningitis testing in Nigeria
  • 1990s- HIV/AIDS testing in Zimbabwe
  • 1970-1980- Forced sexual reassignment in South Africa
  • 1970s- Forced contraception in Zimbabwe
  • 1900s-1910- Sterilisation experiments in Namibia

These bring up huge human right issues, such as unethical experimentation and lack of informed consent, a disregard of autonomy, beneficence, non-maleficence and justice. This also brings up the issue of power relationship and exploitation of vulnerable people.

Who are vulnerable people? 

The term vulnerable can be defined as “the possibility of  being attacked or harmed, either physically or emotionally.” According to StatsSa the vulnerable people of our country consist of children, the elderly,  women and the youth. Others who are also classified as vulnerable are those who are freedom constrained (prisoners, mentally handicapped, soldiers and students), those who are poor, uneducated, powerless, homeless, different in culture and lacking in health care. These individuals make up the majority of Africa’s population.

Why are the vulnerable exploited?

The researcher has the power advantage in this situation, and going against ethical guidelines allows for the opportunity to reach an end to the research quicker, cheaper and easier.

How can it be avoided?

The declaration of Helsinki has established clear guidelines for medical research which require a trust relationship between the researcher and the subjects. This relationship involves the respect for the dignity of the subjects by enforcing accountability in research as well ensuring transparency, justice, fairness and a commitment to the protection of human rights.

Why experimenting is a good thing

The primary purpose of research is to generate new knowledge. Researching and experimenting grows knowledge of professionals in both a personal and global capacity.

There is a great benefit of experimental treatment as often it is beneficial to the subject, it offers an opportunity to patients who might not have any other options. Patient have the right to choosing an experimental treatment, when they are informed that the risks and benefits are unknown and the possible side effects.

Why not to provide experimental treatment 

When an outcome of a treatment cannot be guaranteed, the risks are unknown and no studies have been done, the treatment is unsafe.

Where to go from here

It is important to maintain ethical standards and balance the risk and benefits when deciding about an experimental treatment. In the case of the Ebola outbreak, the WHO has decided to go through with the treatment because the possible benefits outweigh the possible risks, especially in these dire circumstances.

To ensure their autonomy it would also be important to ensure the subjects/patients are educated on the drug, the risks, benefits and the fact that the outcome is yet unknown. As well as allowing them to make their own informed decision regarding treatment.

To ensure beneficence, every individual involved in the process should act in the best interests of the patient, and maintaining a trust relationship between the researcher and the patient.

And ensuring justice by being accountable, transparent, fair to all and committed to the protection of human rights.

By maintaining these standards, experimental therapy is possible, especially when it has the possibility of benefiting so many people.

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The right to medical care vs. The right to religious freedom

I have the need to return to this dilemma because of the astounding amount of stories I have read recently about children dying because parents refused medical treatment for their child and relied solely on prayer. In my last post about religious freedom, I concluded that it is very important to respect a person’s religious beliefs at all costs, but after reading a few more articles and stories, I had to reflect on my previous thoughts.

Here are some of the stories I have found recently:

In 2008, an 8 year old girl suffered waves of nausea and vomiting and eventually went into diabetic shock and passed away. Her parents only action was to pray for her healing. This death could have easily been prevented as diabetes is a relatively common and treatable condition. The parents are on trial for reckless endangerment of a child and risk 25 years in prison if found guilty. 

In some states in America, a parent cannot be convicted of child abuse or negligent homicide if they can prove they genuinely believed that calling God, instead of a doctor, was the best option available for their child. 

In 1997, an undiagnosed haemophiliac toddler, suffer countless cuts and severe bruising in his short life. The incident that lead to his death was a cut on his foot which bled for 19 hours, while his parents prayed for him and did not even think to call for emergency medical care. The mother’s statement to the police was this: “Your children are
a gift from God. They are angels on loan from heaven. If He decided to take my angel back, then I can’t question Him why. I asked for Michael to be healed, and God took Michael.”

I recently saw a patient at Red Cross Children’s hospital who was not tolerating her feeds, and was losing weight rapidly. An NGT was inserted but the child continued to lose weight. She was a good candidate for a PEG, but consent from the parents was needed. The mother was asked and she refused based on cultural beliefs, later the father was contacted and he reported he would need to talk to his parents before agreeing to the procedure. The father phoned back and asked not to have the procedure done based on his cultural beliefs. As nothing else could be done medically for this little girl, the doctors watched her deteriorate. She is still currently battling on, but has a poor prognosis unless the procedure can be done. 

Divine healing

There are many documented examples of divine healing, it does happen and should not be ignored. There are cases where prayer was the only effective “treatment” when medical care was concluded to “inoperable” or “terminal”. At times, there is no medical answer to the cause of this spontaneous healing. Many religions, including Christianity, Islam, Judaism, Buddhism and many other smaller religions believe strongly in prayer for disease and disability, and most countries allow for this in their constitution. The Southern African Association for Pastoral Work (SAAP) has been strongly involved in reaching the need for spiritual intervention. 

The conflict of interest 

In these situations there is a clear conflict between the right to autonomy and the right to beneficence. 

Autonomy can be defined as “personal rule of the self that is free from both controlling interferences by others and from personal limitations that prevent meaningful choice”. Respect for a patient’s autonomy is one of the most fundamental ethical guidelines. As clinicians we have the duty to create the environment to ensure autonomy is possible for each patient, this includes providing them with all necessary information regarding treatment and respecting their decisions.  

Beneficence can be defined as “action that is done for the benefit of others. Beneficent actions can be taken to help prevent or remove harms or to simply improve the situation of others.” The goal of all the actions for our patients should have the goal of benefiting the patient in some way. Apart from treatment, this could include protecting and defending the right’s of patients and helping individuals in danger. 

There are often certain circumstances where the patient’s right to autonomy and the clinician’s duty to beneficence come into conflict, and certain decisions based on religion (as mentioned earlier) are perfect examples of this. Other examples include a patient’s decision to continue smoking after bypass surgery, or a patient refusing ARV’s for the treatment of HIV. 

Balancing act

How do we as clinicians go about dealing with this kind of dilemma? 

In South Africa, health professionals are guided by the HSPCA to obey the wishes of patients, there are cases where the advance directives of the patient are not respected, often due to doctors overruling the family and refuse to stop treatment. 

Our duty is to inform the patient or the parents of the patient of the risks and benefits of their decision. It is especially to stress the importance of medical care in these circumstances. If the patient still continues to remain firm on their decision, the clinician has the right to protect or defend a patient’s rights, particularly when it involves a child. This option should be made available to health professionals if they see it necessary.

It is never easy when fundamental ethical guidelines come into conflict and finding the ‘best’ option to deal with these situations should be carefully considered. Personally, if I was witness to a child not receiving treatment based on the religious beliefs of the parent, I would feel compelled to fight for the child’s right to treatment and strongly consider the legal route. 

 

 

 

 

Thoughts on an abused child

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I have had the amazing opportunity to work at Red Cross Children’s hospital. I’ve learnt some amazing things on child care, but also been so shocked that child abuse seems so common. So often I’ve seen a patient who is neglected, physically or emotionally abused and it breaks my heart.

Paediatrics is something I’m very passionate about, and I’ve been thinking of writing a poem related to child abuse and this ethics course has given me the opportunity to finally do so. The material I read through/used is attached below. I have used one my personal experiences I had with one of my patients.

Thoughts on child abuse:

There is a girl of just 8 years
with tear stains in her eyes
From the shame she can’t hide.
She says, “why doesn’t my mom love me?”
She says, “it’s all my fault”
I try to comfort her,
she whispers to my ear that she wishes I were her mom.
I suspect child abuse,
how I wish I didn’t.
I distract her by playing games;
Games to improve the way her body moves.
Is there more I could do?
I feel helpless sending this girl home
just to be abused again.
I have no proof to give,
If I did I could report it.
Nothing to offer but physical therapy
and the occasional emotional support.

I’m crippled by the fear
that I’ve messed up too badly.
How can my mom love me like this?
My left arm and leg are not working
My body no longer listens to me,
it just sits there, lifeless.
They told me I had a stroke
but why can’t I move?
How can I ever please her again?
I can’t even walk.
I can’t play with my brother.
She doesn’t love me
and it’s all my fault.
I wish this young lady could be my mom
She is the only one who visits me in hospital.
She understands.
She helps me.
I’m scared of the day I have to go home.
My mom hurts me but I won’t ever tell on her.
She would only hurt me more.

I love her
I don’t know how to show her.
I never wanted children
but it was forced upon me,
one dreadful day.
He refused to wear protection.
Why I go back to him every time
I’ll never understand.
I’m afraid I’ll shatter her innocence.
Life is tough,
I do not have a job.
I have three hungry mouths to feed.
The only way to earn
is by selling myself on the street.
Sometimes she makes me mad,
she always wants to play.
I hit her,
sometimes so hard she bleeds.
The word “sorry” never seems to escape my lips.
I speak words of hate
Because I had a bad day.
Nobody understands the pain I go through
just to give her some food.
What if she gets taken away?
Away because of me.
Maybe then she would be loved and cared for.

-Kristin Cameron

References:

Berry L, Biersteker L, Dawes A, Lake L & Smith C. (2013).  South African Child Gauge 2013. Cape Town: Children’s Institute, University of Cape Town.

DHS. (2007). Physicians guide for reporting suspected child abuse and neglect. Retrieved at 11:00 on August 17, 2014 from http://chanceatchildhood.msu.edu/pub.html

Flaherty E, Sege R. (2005). Barriers to physician identification and reporting of child abuse. Paediatric Annals 34 (5): 349-356

DSD, DWCPD and UNICEF. (2012). Violence Against Children in South Africa. Pretoria: Department of Social Development/Department of Women, Children and People with Disabilities/UNICEF.

Prato N, Morris L, Mazive E, Vahidnia F, Stehr M. (2006). Relationship between HIV risk perception and condom use: Evidence from a population based survey in Mozambique. International family planning perspectives, 32 (4): 192-200.

StatsSA. (2014). Work & Labour force. Retrieved at 10:00 on August 17, 2014 from http://beta2.statssa.gov.za/?page_id=737&id=1

What about the tiny humans?

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This one is from the heart. Children are the most disadvantaged group of humans on the planet. But who could do bad things to these beautiful people? They are the most trusting, un-corrupted, selfless and caring humans in this world, and that’s why I love them.

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I think I was about 5 years old when I decided that I want to work with children “one day when I was big” and that desire has only increased over the years. Studying physiotherapy has given me an amazing tool to work with children. It really gets to me seeing a child being disadvantaged in some way, whether it be a form of abuse, malnutrition, forced labor, or any of the many other ways children are taken advantage of. And that is the reason for this post.

While working as a student physiotherapist I have come across many ethical and moral dilemmas involving tiny humans and I was never sure of how to deal with them, especially because I would get so emotionally upset about things. I didn’t want my emotional state to get in the way of  making rational decisions, but the problem is that a lot of people get emotional when children are involved, parents, medical professionals and the children themselves.

The Dilemma

Children are the lucky group of people that do not have to make their own medical decisions. Wouldn’t that be nice? To rely on somebody else more capable to make the right decisions for you that ensure you are taken care of.. I think most people would want that. Unfortunately some children aren’t so lucky, because sometimes you’re left with a parent who doesn’t know anything about making decisions or what is best for their child, or maybe they simply couldn’t care less.

As a medical professional, I have the child’s best interest at heart and it is my job to assist the parent make the right decisions regarding their child’s care. But it becomes a problem when a parent refuses treatment for their child, treatment that could potentially change their life drastically for the better. And it gets worse when the child asks their parents for the treatment but the parent refuses.

I can understand somebody refusing treatment for themselves but I cannot understand somebody refusing treatment for somebody relying on them to listen to what they want or need.

The ethical dilemma is I could either abide by the constitution and respect the parents right to decide their child’s care, or I could go against the parent’s wishes and put the child’s wishes/interests first.

Further thoughts

Children are not only the most abused but also the most protected humans on the planet, especially in South Africa. They have their own special bill of rights reserved just for them. One of the most striking of these was this:

A child’s best interests are of paramount importance in every matter concerning the child.

Wouldn’t that be amazing? If everybody,parents and medical professionals alike, put the child’s best interests at the top of their lists the world would be a better place.

On the other hand, being a parent is incredibly stressful and sometimes making the ‘best’ decision becomes nearly impossible when incredibly complex situations arise. It’s never easy to deal with a child being sick or injured. And sometimes there are other serious things to consider, like the financial or social situation. Other times we don’t spend enough time to educate and inform the parent about the child’s condition, and that’s completely our fault.

Conclusions

I think the most important thing to do would be to ensure we take time to educate the parent and the child appropriately so they are both on the same page. It is also important to empower the parent and let the parent feel free and not judged.

It is never right to go against a parent’s wishes, all we can really do is to be an advocate for children and educate their parents, and to ensure they feel free and safe and not judged. Working together we can change tiny humans’ lives one at a time.

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What is religious freedom anyway?

I was struggling to get inspiration for a post then I remembered how I enjoy talking about religion and maybe I could think of something relating to that. I love watching Grey’s Anatomy and I remembered watching an episode about an ethical dilemma (of which there is no shortage of in the programme) which involved a strong religious view. I found it, and re-watched it, now finally I have my inspiration for this post 🙂 

The dilemma

In episode 13 of season 9, a teenage boy is rushed into the ER after sustaining serious injuries after getting hit by a car while skateboarding. The boy has some serious heart problems and is losing a lot of blood, he desperately needs a blood transfusion. The doctor orders a few units of blood and at that moment a tag falls out from the boy’s pocket, which says that he is a Johovah’s Witness, which changes everything. Johovah’s Witnesses cannot accept any form of blood transfusion, even in life-or-death situations. 

The doctor is forced to stop the blood from being administered, perform heart surgery without any extra blood and watch as she does everything she possibly can to save her patient before he passes away. An intern doctor felt horrified at this situation and tried acting against her orders by giving him blood, she was caught out just before it was connected to him. She could not understand how you could abide by a religious rule that she thought was not at the best interest of the patient. 

The patient soon passed away.

The problem was that the patient was a minor and his parents had to make the decision to not give him blood. The child could of had a different religious belief and if able to might of made a different decision. But the doctors had to trust that the parents included this into their decision-making process.  

Is religion really that important? 

We as medical professionals need to respect each and every view of our patient, including their religious beliefs, because that is what’s important to the patient. Even if it differs from our own beliefs. Religion is often a huge part of a patient’s identity and it is just as important as every other aspect of the patient’s life. It would be wrong not to respect it.

But should a religious rule control medical decisions, especially ones that are in conflict with ‘the best medical treatment for the patient’? Who even determines that? 

On the other hand

Being a doctor and having to make that decision must be so hard. It is (for some) going against your own morals, going against your innate tendency to do good for your patient. On the one hand you would be going against the patient’s right to the best medical treatment, but giving the patient treatment that is contrary to the their belief would not be giving the patient their right to autonomy. To go against something you believe in for the sake of remaining ethically correct is hard. Incredibly hard, impossible for some.

What is the solution?

There is no easy answer. In the end, you cannot break ethical code just to satisfy your own needs. Finding a solution should be personalised because we are all have different beliefs. Somewhere in the process we need to change our mindset that spirituality is important and needs to be taken into account. And sometimes we need to accept that we may not always know what is ‘best’ for our patients. 

I personally would find this really hard if I were in that ‘Grey’s’ situation, I would feel very conflicted. But it doesn’t come down to what I feel, it comes down to what is right for the patient and I must learn to accept that. 

Pain Management

Would you ever under-treat a patient’s pain because you were concerned about repercussions or because you believe that a patient – even a terminal patient- might become addicted? 

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This was a question asked to doctors in a survey. 84% said no, they would give their patients the pain medication, and one of the most striking reply to the question was this: “Pain should not be undertreated, and what’s the problem with a terminal patient being addicted and comfortable?”

A patient’s perspective

Struggling with immense pain, especially pain that severely impairs quality of life is a problem. A huge problem.  I found 3 quotes very useful in getting an idea about how detrimental pain can be:

“The most frightening, the most humiliating, and the most difficult ordeal of my life . I became withdrawn, completely disabled by my terrible, relentless pain. I was unable to function professionally. I was unable to be much of a wife or a mother, a daughter or a friend.”

“Pain is my biggest fear, it puts me in a darkness, you can’t find peace in that darkness of pain. Pain blinds you to all that’s positive.”

“They wanted to know why the medication was not working? Why are you still in pain? If you are crying, why are you crying; if you are not crying, how can you be in pain? You are not only experiencing your pain, you are experiencing other peoples’ opinions and feelings; that makes it worse.”

Pain now seems much more than a ‘highly unpleasant physical sensation caused by illness or injury’. True pain is much deeper than that, it’s more like a torment of one’s entire being, physically, emotionally and spiritually. Most people would do almost anything to relieve their pain in some way, even if it was just a small amount.

A doctor’s perspective

Most medical professionals would do as much as they could for patients to be comfortable, but some won’t because they are scared of the possible legal implications. We were taught to always have the patient’s best interests at heart, and thus  the relief of pain is a core ethical duty in medicine.

But why then is pain not always correctly dealt with? Some medical professionals do not treat pain sufficiently, patients lie about pain and most people do not know what to do with chronic pain.

I was told a story once of a patient who was diagnosed with chronic pain after a car accident. A physiotherapist had convinced her that she needed physiotherapy everyday to help her with her pain, she was told if she did not get her knots worked out everyday it would snowball and the pain would become unbearable. This is a perfect way to ensure your patient will believe they have pain and to make sure you get money every day. But completely unethical.

Another example is a patient who was previously a drug addict and lost everything. He then decided to make up a story about an accident he had a few months ago and he has been is such pain ever since, hoping the doctor would prescribe narcotics to give him his fix.

How do we deal with this problem?

I think with experience you can pick up on small signs that the pain is real or not, but there is a fine line there. I also believe that chronic pain is more psychological than just physical and needs to be handled properly. It is easy to jut handle the chronic pain patient by prescribing them the medication they need every month and sending them on their way, but it needs to be addressed at a deeper level and that is why a multidisciplinary approach is a good idea. Sometimes all a patient needs is somebody to explain what chronic pain is and how it works and the pain already decreases.

Real pain should not be pushed aside, underestimated or undertreated. Treatment for pain can be quite complex, but it is possible. Personal and professional accountability for failing to treat patients competently and compassionately is critical, but so is creating environments that make effective care for patients in pain the norm.

When personal information becomes too personal

While working in a hospital setting, it is quite common to have interdisciplinary discussions about a patient or to share your experiences with your peers. I believe that this is important because patient management should involve all medical professionals who need to communicate with each other in order to provide a holistic service to the patient. And sharing our experiences with our peers assists in the reflective process and learning more about conditions that we wouldn’t have known about without the input. But when the conversation is no longer patient confidential and it turns into an in depth conversation about the patient’s social history and we seem more judgemental than anything else, how do we react? 

There are many examples I can give, these are just a few:

I was in a patient’s room while two doctors were seeing the patient, when they started discussing the patient’s alcohol problem and why this is leading to her stubbornness and difficulty treating. They started making jokes about how she’s actually being forced to go ‘cold turkey’ and the only reason why she’s being difficult is she is craving a drink. All of this was said in front of the patient. And I was standing there thinking that this was so wrong, but I actually found myself joining in the conversation in order to ‘fit in’. 

I was told that I had to see a patient that was also a prisoner. This freaked me out and I was not sure how to deal with the situation because it was a first time for me. So I resorted to what I know best, and I spoke to a peer about it. It would have stayed confidential but my peer knew exactly who I was talking about as she had seen him previously. We discussed details of the patient, which I knew was wrong but I was relying on her information to ease my mind.

And many a time I have overheard nurses, doctors and physiotherapists share information about patients I wouldn’t dream about sharing. I know the workplace can get boring but turning the patients into some form of entertainment is wrong.

 

The patient’s right charter states:

Information concerning one’s health, including information concerning
treatment may only be disclosed with informed consent, except when
required in terms of any law or an order of the court.

According to this law, we have been doing things wrong. I searched for something that would help me with this problem. I found a great article, in it, it states that the duty of confidentiality requires that doctors keep secret the information they are given by patients and/or that they discover or learn about patients through their professional interactions. And some commentators have argued that breaches of confidentiality are a normal part of contemporary healthcare.

From a patient’s perspective:

If I was a patient, I know I would not appreciate health professionals discussing something about me that is personal. I would consider that as a breach of confidentially. If it has nothing to do about my condition and management, why do they need to discuss it? Overhearing them would decrease my trust in my medical team and make me feel violated. I wouldn’t want to share anything else with my doctor, even if it was important. 

From a professionals perspective: 

From a professional’s perspective, I would appreciate knowing details about a patient that would assist in my management with the patient. Discussing personal information might help me get a better understanding of the patient. In some cases it would be easier if one person interviewed the patient on all their personal and social information and we all got to share in that information, but since it doesn’t work that way I would either have to ask the patient or a medical professional that knows more than I do. It’s more convenient to ask a professional because then you don’t need to be aware that the patient might not appreciate you asking them that question. 

Where to go from here:

After reading through the article about patient confidentiality, I have realised how common patient’s experience a breech in their confidentiality. And I know that I am to blame for this problem. Next time I will not engage in conversations that involve in depth information about the patient and I will try to get the information that is relevant to me from the patient instead. I am definitely more aware of what kind of information is okay to talk about with my peers and what to avoid, and I will try be more careful about what I share and choose to listen to.