People with complex needs don’t feel pain?

"People with complex needs don't feel pain?"

A guest blog from former physiotherapist, Liz Goldsmith, of Postural Care Skills  on why gentle postural care should take into account pain prevention for every patient, whatever their disability.

NICE Guideline on spasticity: evidence update 70 endorses the deliberate infliction of pain on defenceless individuals, in other words torture

The history of medicine shows wonderful progress alongside the potential for brutality in support of various dogmas, particularly towards those who cannot defend themselves. Whilst Dr David Chamberlain’s work has reformed the care of babies, [1] we need to be vigilant to ensure denial of pain felt by individuals who are unable to communicate or express pain in traditional ways does not generate a brutal culture towards people with complex healthcare needs; we need to engineer a massive cultural shift to ensure they are treated with gentleness and respect.

Here in the UK success achieved by educating families and coproducing gentle and respectful postural care is well recognised.[2]

postural careIn contrast a paper on standing disabled people has been published recently tailored to fit an insurance based system in which therapists are paid to carry out various interventions. (Paleg et al 2013) [3] The paper has been referenced in NICE Guideline on spasticity in children and young people with non-progressive brain disorders: Evidence update 70, December 2014. [4]

Paleg recommends "dose programs" of standing ranging from 30 minutes to 120 minutes daily with no reference to the individual's condition or pain; this is based on various quasi-scientific reports featuring multitudes of uncontrolled extraneous variables and small numbers of subjects. Whilst these studies may reflect valuable insights they do not justify generalised application of recommendations to a wider population. Paleg states that in 29 out of the 30 studies 1,090 children were subjected to regular, unvarying doses of supported standing ranging from 30-90 minutes.

Apparently there were “no negative findings reported” with the single exception of just one study involving 20 children which states “Maybe 1% of weight bearing vibration sessions stopped because of pain or fatigue”. This denial of pain does not ring true to anyone with experience of caring for fragile children and contradicts research evidence on the subject (McKearnan et al 2004).[5] Whilst there are benefits for those who have intact hips and enjoy being supported in standing the population targeted by this approach includes people who are very fragile both medically and psychologically. Paleg’s presentation “Let’s get something straight! You are just gonna want everyone who cannot walk to stand!” [6] makes numerous claims including:

"There was no evidence that supported standing would be contraindicated if the participants had one or both subluxed or dislocated hips"

“GMFCS Level 4 and 5 need to stand daily for 60 min 5x/wk throughout their lives!”

In contrast McKearnan’s review of pain in children with cerebral palsy states:

“Pain also may be a problem for children with cerebral palsy due in part to the inherent deficits associated with the disease, as well as the invasive medical and surgical procedures and rehabilitative activities children with cerebral palsy undergo on a regular basis.”

“Although these activities are intended to improve functional or physical status and minimize disability related pain, many of these activities may be encumbered by pain or prompt a painful experience in a child with cerebral palsy. Kibele (1989) [7]reported that one of the most salient negative memories of childhood in adults with cerebral palsy was the pain related to stretching and bracing in physical therapy” Hadden and von Bayer (2002) [8] noted that parents of children with cerebral palsy identified assisted stretching as the most frequent activity of daily living observed to be painful (93% of those reporting pain)”.

It is to be hoped that the lack of credible evidence to support stretching and use of standing frames will result in a more person centred, reasoned and compassionate approach. However, an increasing number of therapists are becoming obedient to a fashion for one size fits all “dose programs” and the well known Milgram experiment on perils of obedience [9] shows that people are prepared to inflict pain on others if instructed to do so by authority.

NICE Guidelines on Management of Spasticity represents the ultimate medical authority in the UK and as the target population are unable to report abuse, put up an effective fight or run away endorsement of Paleg’s approach will generate abusive practice.

Able-bodied people know that staying in one position for long periods results in pain and stiffness, few would tolerate a long haul flight in the only seat on the aircraft that didn’t recline and this pain is exploited in the use of stress positions in torture.

The human body is made up of delicate mechanisms that include joint capsules and ligaments which work with normal muscle tone to protect the body from the stresses involved in daily activities. Pain is the alarm system of the body that signifies damage is occurring and those who are able to make a choice will tend to stop what they are doing. Those who override these warnings such as athletes or dancers motivated by the need to perform know that they risk long term damage but make a conscious decision to continue.

People undergoing rehabilitation may need to work though a period of pain and lack of confidence to regain strength and wellbeing but it is within the capacity and free will of an individual to make that choice based on their interpretation of the pain they are experiencing. A “no pain - no gain” culture may be justified and is deeply entrenched in rehabilitation but is inappropriate when applied to people who are helpless to defend themselves.

In babies and children with severe disability all the delicate structures of their bodies are very fragile; they need to be gently preserved as they grow to adulthood and they are dependent on others to be sensitive to their pain related behaviours and provide respectful postural care. Stressful activities and upright stress positions imposed by others in an attempt to make the child perform more like other people will damage muscle tone, body structures and internal organs whereas children whose bodies have been protected will function to the best of their ability for the rest of their lives.

For purposes of protecting hips from the enormous stress that occurs in standing strong ligaments spiral around the joint; in flexed positions the joint is relatively mobile but when the hip is extended the mechanism tightens to pull the head of femur firmly into the acetabulum.

These mechanisms are particularly fragile and easily damaged in physically disabled children leaving the hip vulnerable to painful subluxation and dislocation. Wholesale denial of pain in standing indicates a culture in which an entire population is being subjected to cumulative damage.

NICE Guidelines enjoy international recognition as a reputable source and obedient therapists worldwide will use Evidence Update 70 to justify putting children into standing frames for long periods regardless of the damage and pain they are causing.

To quote Dr David Chamberlain: [10]

"It is torture, whether we think so or not"

“Medicine proceeds in its own stubborn way”

“These are smart people or they wouldn’t get through medical school but they don’t hear anything about psyche; they don’t talk about soul. They teach techniques and go on and on with their techniques no matter how painful they are”

See the video from Dr David Chamberlain here  

It is worth considering that Dr Chamberlain’s concern was for the wellbeing of babies during one-off transitory interventions such as gratuitous trauma after birth or surgery without anaesthesia as was normal practice until 1986, whereas it is common for disabled children to be subjected to painful experiences that are unjustified by logic or scientific evidence on a regular, daily basis over many years.

McKearnan’s work reports:

“Children with cerebral palsy engaged in ongoing rehabilitative efforts may display increasing anxiety, fear, frustration, withdrawal or distress about these interventions given the potential for associated pain” (McGrath 1990 [11] Turnquist and Engel 1994[12])

The therapy world is a global village, obscure to outside scrutiny and seemingly immune to normal safeguarding procedures. In the 2003 report “It doesn’t happen to disabled children” [13] the NSPCC states:

“We still come across situations where child care professionals do not believe anyone would abuse a disabled child; where the child’s pain and distress is not recognised; where abusive practices are seen to be necessary because of a child’s impairment”

As families become better informed they are more able to challenge abusive practice but sadly the clash between a medical “no pain - no gain” approach and a person centred, gentle, respectful approach can become a battleground. Families know by intuition that stress positions, pain and fear increase spasticity whereas comfort, balance and support relax the body but we see families threatened with child protection proceedings when they refuse to carry out painful stretches or attempt to protect their child from standing when they have painful, dislocated hips.

Endorsement by NICE of the Paleg approach represents a safeguarding issue on a global scale and this has been brought to the attention of the Evidence Update Advisory Group responsible for the document with no response to date. It should be noted that medical and therapy services appear to be represented on the Group but there does not appear to be representation of disabled people or their families; this is a shame as we have family leadership organisations in the UK that are amongst the most informed and coherent in the world.

Families are grateful for the power of medicine to prolong life but it is left to families to make that precious life meaningful. For those paid to put people into standing and/or paid to sell standing frames the prospects are good; for families attempting to protect their loved ones from medical brutality the prospects are bleak.

The Milgram experiment demonstrates the perils of obedience; it takes courage for a therapist to question dogma that is endorsed by the highest authority; it takes courage to dispute the fashion for manipulating quasi science to justify doing things to people that hurt them; it takes courage to relinquish power to families, to support their intuition and work in true partnership with them.

Take courage – I heard a wonderful quote recently whilst taking part in the NHS Change Day School for Healthcare Radicals: “Speak your truth – even if your voice is shaking.”

References

[1] Chamberlain, DB. Babies don’t feel pain: a century of denial in medicine Presented at The Second International Symposium on Circumcision, San Francisco, California. May 2nd 1991 (accessed via Google November 2014)
[2] Carter S, Wakefield, a Postural Care Beacon https://posturalcare.wordpress.com/
[3] Paleg GS, Smith BA, Glickman LB (2013) Systematic Review and evidence based clinical recommendations for dosing of pediatric supported standing programs. Pediatric Physical Therapy245: 232-47
[4] National Institute for Health and Care Excellence, Spasticity in children and young people with non-progressive brain disorders: Evidence Update December 2014. Evidence Update 70
[5] McKearnan KA, Kieckhefer GM, Engel JM, Jensen MP, Labyak S. Pain in children with cerebral palsy: A review. Journal of Neuroscience Nursing. (2004) 36, 5; ProQuest Nursing and Allied Health Source pg.252
[6] Paleg 2014 “Let’s get something straight! You are just gonna want everyone who cannot walk to stand!” http://www.paleg.com/wordpress
[7] Kibele A (1989) Occupational therapy’s role in improving quality of life for persons with cerebral palsy. American Journal of Occupational Therapy. 43, 371-377
[8] Hadden KI, von BaeyerCI, (2002) Pain in children with cerebral palsy: Common triggers and expressive behavious. Pain, 99,281-288
[9] Milgram Obedience Experiment. en.wikipedia.org/wiki/Milgram_experiment (Accessed on Google 2015)
[10] Chamberlain, The other side of the glass Vimeo.com/48931890 (Accessed on Google 2015)
[11] McGrath PA.(1990) Pain in children: nature, assessment and treatment. New York: The Guilford Press
[12] Turnquist KM, Engel JM, (1994) Occupational therapists’ experience and knowledge of pain in children Physical and Occupational Therapy in Pediatrics, 14, 35-51
[13] NSPCC. (2003)”It doesn’t happen to disabled children”: child protection and disabled children. www.ccinform.co.uk (Accessed Google 2015)

Bookmark the permalink.

Comments are closed.