Tuesday 26 December, 2006

Rant: parents of chronically ill children

Posted in Michael Tam, Paediatrics, Rants at 18:45 by Michael Tam

Original article by: Michael Tam :: Printer friendly

Warning: the following is a rant of my personal opinions on the issue.

This article for inspired by a comment received by a family member of a chronically ill child. The comment is representative of many “difficult parents”. In this article, I will dissect it and give you an alternative way of thinking.

I’m not a doctor but a grandmother of a baby that was born with Christmas Tree Anomaly. As a result she has short gut syndrome. She was admitted to hospital for dehydration after a gastro virus made her vomit. They were hydrating her very well but as always before they seem to overdo it and now she is in ICU because her sodium and potassium levels shot up. So when your calculating the IVs, please consider that this is a person’s life you are messing with. This is a 15 month old beautiful baby girl that is spending her 2nd Christmas in the hospital all because her levels were not being watched properly and they did not account for what was already in her body when they smacked another IV drip up there. Doctors, listen to your patients and their parents. They may know more than you think they do and maybe more than you do. After all, this baby is the little girl that will be sneaking up on Christmas morning to peek at presents that someone loves so dearly. And one day it may be your loved one.

On the face of it, this seems fair enough. A child suffers an adverse outcome and the family is angry at the doctor. However, is it? My analysis is that this comment contains many uninformed if not unfair criticisms engineered to belittle and dominate the doctor.

So when your [sic] calculating the IVs, please consider that this is a person’s life you are messing with.

The impudation of course is that we don’t consider a baby to be a precious human being in our work. This is of course untrue and parents who suggest otherwise should be corrected immediately.

This is a 15 month old beautiful baby girl that is spending her 2nd Christmas in the hospital all because her levels were not being watched properly and they did not account for what was already in her body when they smacked another IV drip up there.

I do not, of course, know of the actual scenario but I am almost certain that the above again is not true. The child has a short bowel syndrome with acute gastroenteritis. Fluid calculations are always difficult for these children. Unfortunately, the medical profession suffers from the “burden of perfection”, with patients (and family) not understanding that a certain proportion of poor outcomes is normal with the current level of knowledge and technology.

This child is spending her time in hospital not because she was overhydrated as is claimed. It is almost always safer to err on the side of overhydration. She is in hospital as she has a congenital abnormality. The fact that she is alive at all at two years of age is a triumph of the advance of medical science in the last several decades. Though family may lose the “big picture”, you should not, and you should try to educate the family if possible.

Doctors, listen to your patients and their parents. They may know more than you think they do and maybe more than you do.

You should always listen to the parents of a sick child. Often, they will know more than you about their child; having lived intimately with the child for months or years. However, never lose your objectivity. The parents, unless they are medically trained, would almost certainly not know more than you. Your duty is to the patient, that is, the sick child, not to the whims of the parent. Where the parent significantly disagrees with the course of treatment, your duty would be to speak with the parent, try to understand their point of view, educate and insist on the best course of action.

After all, this baby is the little girl that will be sneaking up on Christmas morning to peek at presents that someone loves so dearly. And one day it may be your loved one.

The form of this comment and argument is what is known as “appeal to emotion” which is a logical fallacy. Although it is understandable it does not hold any truth. Take it as you will, but this form of logical armour is required to protect you from emotional manipulation from both patients and family members. A quotation from Dune Messiah by Frank Herbert:

Reason is the first victim of strong emotion…

Your duty and professional obligation to your patient is best served by reason and objectivity. Emotional conflicts and feelings of guilt can be subtle. Try to be mindful of your feelings and reframe the situation. What is the parents’ agenda? What is yours?

Be logical and objective. Remember the arrow of time travels in only one direction. Would (not could) you have done anything different?

If there is one thing to learn, it is that you must engage with the parents of ill children. You must keep them involved in the care giving process. If they understand what is being done, as well as the limitations and are given realistic expectations, then we shouldn’t receive the above comments. They are a symptoms that communication with the family could have been better.

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8 Comments »

  1. Hildy said,

    I also question the idea that hyperkalaemia/hypernatraemia are at all related to IVF administration.

  2. lchxian said,

    Unfortunately dealing with chronically sick children’s parents are not easy, and it does not get any easier even after a few years of experience.

    :) Having said that, it is usually very rewarding working with sick children and their family. I can’t imagine myself do anything else for living…

  3. rob whitehead said,

    “I’m not a doctor but a grandmother of a baby…”

    Well, I am doctor and I agree with gran – I reckon that lots of doctors including me spend far too much of our lives bluffing when it comes to fluids and electrolytes! There’s a good page on this site (which is why I’m here today) – bottom line, most RMOs don’t actually understand this stuff. Fine if your patient has good heart and kidneys, bluffing less likely to be successful if your patient has short gut syndrome as mentioned above.

    So I’m with gran 100% on this one, and I think she’s spot on with her comments overall.

  4. Liz said,

    Stumbled onto this in Google and just wanted to comment. I am the parent of a chronically ill child. Most of his issues could have been prevented but for medical error. My experience is that doctors fail to listen to parents of ill children; have far too many ‘God Complexes”; and hurt patients and families. I don’t think parents expect perfection. They expect competent doctors and when doctors mess up – parents expect doctors to own it and rectify the situation. Most hospitals have mission statements that express their belief in family centered care. But most hospitals and doctors utterly fail in this mission.

    • Michael Tam said,

      Thank you for your comments Liz.

      As per the content of the article,

      “You should always listen to the parents of a sick child. Often, they will know more than you about their child; having lived intimately with the child for months or years. However, never lose your objectivity. The parents, unless they are medically trained, would almost certainly not know more than you. Your duty is to the patient, that is, the sick child, not to the whims of the parent.”

      From the “other” side of the fence, many parents have entirely unrealistic expectations of the limitations of medical science. Many parents furthermore do not put any personal responsibility in the various wishes they insist in the care of their child. The ethical duty that the clinicians has is ultimately to the welfare of the child, not to the parents. I have seen many times where the doctor is effectively bullied by the parents into providing questionable treatment which then results in a bad outcome. This article is directed at junior doctors to remain objective and rational.

  5. Karrie said,

    “Most of his issues could have been prevented but for medical error.”

    A big problem in issues like these is that so many people have unrealistic expectations about the complete elimination of medical error. Yes, we should strive to keep errors at the lowest possible number, but there will always be error. “To err is human…” Doctors are human, just like our patients. We try our best, but sometimes we make mistakes. Careless errors do happen, however, even the most careful doctor will never be perfect, and patients need to understand this fact.

  6. Elizabeth Ciccantelli said,

    I have worked in home healthcare for the past 14 years. During this time, I have been given the opportunity to see this problem from a different perspective.

    When we are young, we watch our parents, (the “all powerful” of our worlds), turn to the medical profession as a source of help and relief from the problems they find too overwhelming to handle themselves. As we age, I think we (or at least, I know I did) adopt an interpretation of their actions into the medical profession being an ultimate and final opinion of what is best (not to mention “right” and “wrong”) for any human being. As practitioners, this “learned assumption” places us all in the position of sometimes having to educate our patients that their childhood interpretations of what they thought was true is so far from true that they take their hostility out on us. I’ve worked with so many many families that I have had such deep admiration and respect for, and then there are the other ones….who have a difficult time facing this reality. Our system is over stressed, over glorified, and over litigated. We have sucked it dry with our inability to handle this reality, but I do believe it is, and will get better as long as we strive for a more wholistic and integrated approach with the alternative medicine community, and this has its challenges in itself.

    My homecare families that seem to be the happiest and the most well adjusted are those who take responsibility for their own health and are able to see the healthcare system as it really is, and this appears to prepare them better psychologically for let downs that are most of the time, inevitable. They see the flaws in us, and in the system, and know and accept the flaws in themselves. They do not waste energy on their child’s illness. They choose to expend their energies on their child’s engagement with the world and with life to avoid some of the paranoia, rage, and resentment they have witnessed in some of the others. I feel blessed to have worked in this feild. We are all in this together.

    ….(now if we can get the legal teams to go along with it, it might get better faster…ha!!)

  7. Grace said,

    What a great topic! Doctors, we could not live (take literally and figuratively) without you. Parents, find a doctor you can trust.

    Doctors: Read Carefully.

    We, as parents, cannot judge you on your level of knowledge. We have no way of measuring that. We can only judge you on your level of humanity. When I meet a doctor, I do not ask him or her, “So, where did you do your residency? What papers have you written? What was your GPA in Med School?” As a parent and also my experience on earth (now 45 years of experience) I will judge you in the following way.

    -I will judge you by how you express yourself, your body language, your eye contact, how you listen to me, how you answer my questions.
    -I will see if you interact with my child in developmentally appropriate way (this one is bonus).
    -I will see if you ask about our daily routine to see if you can help me carry out critical and constant care.
    -I will see that you respect my child’s dignity and privacy and developmental needs.
    -I will see if you are human by revealing a non medical personal story about yourself which will reveal something about you that I can understand (example, you may love animals, sports, play an instrument).
    -I will see if my child feel at ease with you. If you make her laugh.
    -I will also watch carefully how nurses and other doctors react when your name is mentioned.
    – I will judge on maturity, not age. If you are young…. that is not always a disadvantage. At times, young doctors are more genuine and easier to read and not so full of themselves.
    -I will look to see if you are writing things down, so that when we meet again you can go over your notes and we save time.
    -Parents are in a crazy hazy state of mind when a child is ill…. I will notice if you do not at least acknowledge my feelings. If you don’t my mind will be orbiting our conversation.

    Parents:
    -Become educated in your kid’s condition. Read real books, not internet forums, and go get a basic biology book and review the parts of the body in question.
    -Ask your doctor, “What do most other parents do in this situation and why?” Sometimes, this is a good place to start when you have to make decisions about treatment. Do not expect your doctor to decide everything and then complain.
    -Talk to your child’s doctor about your child, not about you. If you have fears tell your doctor, “I am afraid of … is this unreasonable or is there a possibility it may happen?”
    -If you are in the hospital, understand that everything happens in “hospital time” a different time zone where hours move slowly.
    -Your child is not your docs only patient. You do not know what happened before he saw you, or where he is headed after talking to you.
    -Ask, before a procedure, what are common side effects, outcomes, and alternatives. Research it yourself if possible, before asking. There really is no excuse for parents not to be educated about their child’s condition. Do not expect your kid’s doc to educate you on everything. Get the basics.
    -If you do not like your doctor because of his personality, understand that in a time of crisis his personality may not be a saving grace, Re think why you chose this doc. No matter how much he/ she knows, if he cannot connect with you, they will not reach your child.
    -If your doc makes a mistake. Ask yourself if you did not present all info. And if you trusted him/her then you will understand that the best intentions were in mind. Does not change anything, but you may be able to stomach consequences better.

    I hope this helps docs. And I hope parents are reading real books with data that is credible on their kid’s condition.

    From a mom of a cystic fibrosis kid and an Aspereger kid.
    Grace


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