I have a story, it’s nothing unusual. It’s about a teenager who found she couldn’t stand up straight. Worried parent’s told her to stand up straight, female family members worriedly whispered as she bent over the bathroom sink to brush her teeth on Saturday morning, no one had any idea why the girl lent to one side when she stood up. Finally dressed in their Sunday best, the girl’s parents took her to the well-respected local doctor at the bottom of her auntie’s road.
The story then start’s to get a little odd. The local GP consulting lot’s of encyclopaedia’s made the girl bend over, Idiopathic Scoliosis was the cause of the deformity. And a double curvature of the spine meant corrective surgery was needed immediately. The girl was whisked out of school and firmly ensconced in Stanmore Orthopaedic, the hub of bone disease research in the UK with it’s marvellous nursing staff.
The girl got to meet other kid’s at the hospital, children suffering, and yes they were, with bone cancer, other kids with scoliosis, children suffering from muscular dystrophy unable to move, wasting as they lay in their hospital bed’s. Then there were the kids that came in for their chemo treatment. One girl, Helen, would spend the night with her curtain’s drawn being physically sick even before she had the treatment because she feared it so much. Then there were the kid’s who were really to young to understand what was happening and of course the parent’s who had lost children that would turn up to talk to the kid’s, nurse’s and consultant’s they had got to know.
The girl and the group she had befriended (The Scoli-ites) had their full spinal surgery, with rib clippings, bone grafting and metal rod’s. Some found they could walk afterwards, some weren’t so lucky. They were all stuck on morphine and then all very angrily weaned off of it via strong sleeping pills and tranquilizer’s. All of which were needed for the chronic pain and to avoid going into shock after surgery.
The girl in the story is me and I haven’t spoken about my surgery or my condition in year’s. I am a stubborn, determined person who was shaped by this experience. And these serious surgeries do affect and shape the person you become. It made me realise two thing’s… there are always, ALWAY’S people far worse than you and ALL situations get better over time. What it also made me realise is how traumatising major surgery is and how disassociated you become from the real world when stuck in hospital for long length’s of time. And even more so when you get home to find you are now lagging behind in the correct time-line of life whilst battling with chronic pain.
For all the consultation’s and quite frankly excellent nursing care we received not once was I or any other of the kid’s offered counselling or psychological consultations. This was left to the already overburdened nurse’s who also acted as security guards and mum’s and dad’s at night.
How many people have you read about in my story so far, do you feel really should have been complementing their treatment with counselling. Was it the parent’s who turned up at their dead child’s old ward because they couldn’t bear to sit in their house without them. Was it the parent’s watching their dying children toddling around the ward. Was it the child who felt so stigmatised by her condition she refused all other help and preferred to spend the evening being physically ill before a chemo session. Was it the kid’s going cold turkey with very strong opioids’. Was it the absolute trooper Katherine who lay in bed with muscular dystrophy making joke’s all day long aware that she did not have much longer to go. The children watching friends bed’s empty. Or maybe the staff themselve’s who had the charge of dying and seriously ill children day and day out.
I would have to say all of them and also all of those who go through intrusive, life threatening surgery and have to return home and catch up with life or simply start living it at their own pace. It’s now 25 years on and I don’t really see alot in the healthcare press pushing or even reporting on psychology being used to complement treatments.
The American Heart Association released data on a collaborative medical and psychiatric program on the 8th of March 2011. The AHA had found high levels of depression in cardiac patients receiving medical aftercare and have now introduced counselling which has increased patients quality of life after elective surgery and therefore affected recovery rates. This was also found to be true in a palliative care study held in four New York hospitals with advanced cancer patients. The palliative care study was first carried out in 2010 with terminally ill cancer patients. The study not only showed a monetary saving to the hospitals overall but also a prolonged period of life for dying patients.
The hospitals decided to extend the study to early stage cancer patients and patients suffering from heart failure, offering emotional support and two way conversations about treatment plans, what the patients should expect and what they wanted to do. The study found that if all four hospitals used a palliative care team for a year they would make a saving of up to $252 million.
I don’t find the fact frustrating that the study is having to use monetary terms to persuade the US Government to build more palliative and emotional support programmes for patients in treatment. I find it frustrating that it is now 25 years on from my original extensive surgery and thing’s are only just starting to change. Basically serious surgery is just that, it physically put’s a strain on the body because it is not a natural state. It is invasive, at some time’s frightening, and traumatising all at once . Surgery is something usually done out of necessity rather than choice.
So why don’t we give some of this choice back in treatment planning and emotional support for the act of surgery itself. We don’t question the need for physical recovery after surgery so why do we question the need for psychological recovery after we have been through such a life threatening, and draining experience?
Thanks so much for sharing your moving story.
It’s very true that medical professionals (and even family members and caregivers) are so focused on the physical that the emotional/mental is often forgotten. Many times once the physical scars are healed, the emotional ones are ignored.
Thanks for bringing attention to this neglected issue in health care.
Thanks Michelle, for sharing your youth’s painful experience with big surgery and pain and for speaking up about what you came to learn about suffering children, agonizing parents and the complete oblivion of the patient’s soul by the healthcare system.
Despite the fact that I had too surgery at an adult age, I can assure you that the experience is indeed terrifying and life changing. The mechanistic approach to the human body is not healthcare, people are not machines to change some parts and put them back to work. This is totally in opposition of what Hippocrates taught and to the oath that still today new physicians take….
Unfortunately, almost everywhere medicine is considered like a technique: if the right technique is applied then the person is supposed to be up and running….Psychological support also here is looked upon as a costly futile luxury. If it were not for the few patient orgs (mostly cancer patient orgs..) that have hired psychologists and social workers to offer support to patients, of course, after and not during the hospital trauma, there would not be anything.
As for palliative care, better not to speak about it, both public and private hospitals want to “free” their beds, so very often exhausted relatives besides caring for their loved ones, are obliged to run the town to find a hospice that would accept their patient. These premises are often just “patient warehouses” offering minimum and not the critical care that is needed by terminally ill patients….. As for pain relief care, this is offered only in certain hospitals and for getting the necessary drugs, it’s another story… Definitely, there is no question of psychological support, after all the person is dying….
Moreover, in our society still reigns a stigma for those wishing to have psychological support , they are looked upon as lunatics… I believe that all hospitals performing elective or non-elective major surgery to young and older, should have an in-house psychological service to offer pre- and post-operational support to patients.
Relaxed, not anxious patients have a better post-op recovery, that means less complications and therefore less cost to the healthcare system. However, there is an exception, in a newly built cancer children hospital, there are goodies such an in-house psychological service for both children and families, educators, teachers (as children stay for long times they can follow-up their classes), a play-room, art teachers-psychologists. But as I said this is an exception…
I fully agree that the best doctor for body and soul pain is time, time is soothing, it makes everything look easier, less painful…
A very moving and enlightening but warming story, Michelle: I have heard of the condition but not by name. You have explained your own (amongst the other children’s) circumstances very clearly and bravely and have done very well following such a major trauma at an early age. By now, hopefully, the NHS treat major surgery with more consideration in terms of emotional and psychological support and counselling. I have every admiration for you and no doubt this helped to shape your career in the pharmaceutical industry, well done!
Thank you for sharing Michelle.
Now I know why you’re so passionate about healthcare.
As you worte, people need emotional support every time they suffer from physical accident.
In Japan, We’ve been facing the awful disaster.
After I read your post, I strongly feel people faced with the quake and Tsunami need not only physical support, but also emotional support.
I really like the sentence, “ALWAY’S people far worse than you and ALL situations get better over time.”
It’s great that you bring up this topic that is rarely discussed re pain and psychological problems associated with pain and pain medication. I’ve seen many cases throughout my interviews, of individuals who never had any psychological problems, and immediately after a surgery or a traumatic event, when combined with addictive pain medication, begin to experience and complain about psychological issues. Thanks for sharing!
Michelle,
Thank you for the courage to share such a personal and moving story. We all seem to be passionate about healthcare for our own reasons, but I think you good reason to be more than just interested in healthinnovations.
Thank you for shedding light on a topic I have not been familiar with. This is very eye opening.
Michelle,
Thank you for sharing your personal story and stressing the importance of emotional support for those with major surgeries and other traumatic events. As caregivers, patients, and advocates, we should all be mindful of the very important points you share with us in this posting. We should all proactively plan for an emotional care program for any patient undergoing a significant medical event. A successful surgery followed by an extended psychological illness is not a successful encounter for a patient. We should be asking our physicians, “What is the emotional care plan?”, as a key part of a discussion for any planned surgical event. Thanks again.
Thank you for sharing your story, Michelle.
When finishing medical university (1996) I wrote my thesis about the psychological aspects of ICP patients who undergone corrective orthopedic surgical treatment. At that time not much was happening considering this topic, even though some ackowledged its importance.
It was a long time ago, I wonder what changed…? I wonder how do surgeons see this now…?
The New York hospital study you refer to is promising. If instead of humanness (or anything gracious noble stuff…) it will be cold financial considerations forcing change towards improved care and ending up adding the high touch to the high tech (surgery) – it will be kind of OK.
(I leave the rest to moral philosophy experts.)
Thanks for sharing your experiences. I am somewhat ill prepared to comment on this as up until now (at least) I have not had to go through prolonged stays in hospital or the kind of surgery that you talk about in this post. It seems pretty obvious to me that the best care HAS to take into consideration the patients psychological status and deal with those fears, concerns and potentially negative psychological effects of these traumatic events.
Unfortunately I have to agree with the comment above, until the research is more clear cut and that there is a ‘pay off’ in some way it will continue to be a neglected area of care.
My other thought is whether surgery becomes more or less traumatic to the ‘informed patient’ who is fully armed with an array of statistics and failure rates in areas where the access to data is sometimes given, rightly or wrongly, the highest priority.
Excellent comenatary told in a very personal way. Completely agree with your comments and conclusions