1. Introduction:
During my work in health and social care, I have seen people rushed into hospital by ambulance, treated with major surgery and kept alive against great odds in intensive care. I have seen people rehabilitated by physiotherapists and speech and language therapists and cared for by nursing staff. I have seen social workers speaking to patients to ensure their care needs are met in the community. What is it all for? Why do we work so hard to keep people alive? The answer to this question must lie in the meaning of life. What is the meaning of life? This blog entry briefly explores the meaning of life and extrapolates from it reasons why occupational therapy is an essential component of quality care. It reflects on evidence that occupational therapy is currently undervalued and suggests a radically different professional image for the future.
2. The meaning of life lies within occupation:
To help answer the above question, it may help to study people who have had all meaning taken away from them. It would be unethical to create this situation experimentally, but the United States government has done it for us[1] in their ‘war on terror’. What is the weapon of choice for psychologically destroying a captured enemy? It is occupational deprivation. If you had absolutely no occupational freedom (not even being able to think) would you still wish to live? Would your body effectively be a prison, and your life a sentence? There are accounts of prisoners of war losing the will to live and leaving their bodies. I was a prisoner once, and after just a few of hours I realised I would rather fight to the death than ever let it happen to me again. Reflecting on this, is it safe to say the meaning of life lies within the domain of occupation?
What about non-life-saving healthcare interventions? What is their purpose? The World Health Organisation defined health as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity”[2]. Try to imagine a state of well-being with no occupational freedom. Can such a state exist in the material Universe? In contrast, is it possible to experience a sense of well-being without good physical or mental health? Ask a person that is high on heroin. Ask a soldier who has just self-actualised by making the ultimate sacrifice with a heroic act. If a sense of well-being is:
a) possible without good physical or mental health but not possible in the absence of occupational freedom, and
b) a defining characteristic of health
is it logical to assume that the ultimate aim of every healthcare intervention should be the preservation of occupational freedom? In most cases I believe this to be true, and in cases where it is not true, perhaps questions should be asked as to why the interventions are happening at all. If these assumptions are true, would it not be sensible to assume that occupational therapy should be at the core of health and social care delivery?
3. Not seeing the wood for the trees:
The medical model currently dominates statutory healthcare in the United Kingdom. This is a reductionist approach fundamentally flawed in my opinion by the treatment of disease components without regular reflection on why we treat disease at all. When I was a physiotherapist I used to work to increase people’s mobility or sitting balance. In cases where this was not possible I worked to maintain their lung function or passive range of movement. I worked on the assumption that these were good things to do, and was too rushed to think about why. Some of my patients did not agree with the assumption and told me they just wanted to die. Nothing in my professional training at that time had equipped me to deal with the meaning of life (or its absence). Medicine similarly seems to focus on life without reflecting on its meaning. My father died with disseminated intra-vascular coagulation and organ failure secondary to an unknown cause. The medical team did everything they could to keep him alive, but nobody thought to discuss how he might have liked to die with us. If he had survived, I wonder what the micro-emboli would have done to his brain. It is doubtful he would have been the same person. What level of occupational freedom would he have had? What would his life have meant to him?
It is often assumed that wanting to die is a sign of mental illness. While this is arguably often true, many of my older patients have said they just wanted to die, but seemed content about it. Similarly, leaving one’s body is the ultimate aim of advanced yoga[3]. Try telling and advanced yogi in the state of Turiya that he or she is ill. The obsession with preservation of life without attention to it meaning or occupational freedom has denied people in the United Kingdom the right to die in the manor of their own choosing[4] and they have had to go abroad to do it. Perhaps our view of healthcare occasionally actually restricts occupational freedom.
4. The full power of occupational therapy:
Occupation may be the greatest determinant of well-being. Can you think of a greater determinant? If not, perhaps sensible use of occupational freedom should be the main explicit aim of all healthcare intervention. Several national service frameworks have addressed occupational factors:
“Many important lifestyle risk factors for CHD are well studied and understood. These
include smoking, a poor quality diet (including consequential serum cholesterol level), lack of physical activity, and the role of habitual excessive alcohol consumption. There are other risk factors which are likely also to be important, such as particulate air pollution job control and a general sense of security but to date these are less well understood. It is thought that about half of the decline in CHD mortality is due to lifestyle changes and half due to better treatment and care. The steepening of social class gradient in CHD mortality is also reflected in worsening social class gradients in people’s exposure to important risks. For example, among 16 to 44 year olds, smoking rates among the more affluent three quarters of the population have declined sharply since the mid-1970s, but the proportion of smokers among the poorest sections of the population remains unchanged at about 50% and 60% among lone parents. Similarly, men and women in social classes IV and V are more likely to have high blood pressure, and to eat smaller amounts of fruit and vegetables than men and women in social classes I and II. They are also more likely to have experienced poverty during childhood, to live in poor quality housing, to be unemployed or in low-paid occupations. People’s exposure to risk reflects the choices they make about how to live their lives. But these are heavily patterned by the circumstances in which they live: the physical and emotional environment, their access to education, to employment, to an affordable healthy diet, to decent housing and to supportive communities.”[5, p.4]
“2.2 Smoking is the cause of a third of all cancers. Since the widespread availability of cigarettes there has been a huge increase in deaths from lung cancer, which was previously a rare disease. From the 1950s, evidence of the serious health effects and the fatal diseases caused by cigarette smoking has been accumulating. Smoking not only causes most cases of lung cancer but is the major cause of cancers of the mouth, nasal passages, larynx, bladder and pancreas. It also plays a part in causing cancers of the oesophagus, stomach, kidney and in leukaemia.
2.3 Smoking kills people. In total smoking kills around 120,000 people in the UK
per year and over half a million in the European Union……
….._ Obesity may contribute to the risk of post menopausal breast cancer and endometrial cancer. A low fat and low energy diet with plenty of fruit and vegetables can lower the risk of these cancers. The National Service Framework on Coronary Heart Disease required health authorities to have in place local schemes to reduce obesity by 2001.
_ Regular physical activity can reduce the risk of certain cancers, particularly colon cancer. From 2001 health authorities will have physical activity promotion schemes and the Department of Health will issue guidance on supervised programmes of exercise for people whose health may benefit. In addition, the Department of Health is working with other government departments on work to encourage and enable more walking and cycling, particularly in deprived areas.
_ Alcohol misuse is thought to be a major cause in about 3% of all cancers, and can increase the risk of cancers of the mouth and throat. Liver cancer is associated with heavy drinking and there may also be an association between alcohol and breast cancer. The Department of Health will consult on an alcohol misuse strategy.”[6, pp.23-29]
“Mental health problems can result from the range of adverse factors associated with social exclusion and can also be a cause of social exclusion. For example:
• unemployed people are twice as likely to have depression as people in work
• children in the poorest households are three times more likely to have mental health
problems than children in well off households…….
……..•there is a high rate of mental disorder in the prison population
• people with drug and alcohol problems have higher rates of other mental health problems
• people with physical illnesses have higher rates of mental health problems.”[7, p.14]
“As part of their work on promoting independence, many local authorities are developing programmes to encourage health and active ageing. These are often council-wide strategies, involving transport, leisure and education services, as well as social services.” [8]
“It is the activities that enable people to deal with the impact of a long term condition on their daily lives, dealing with the emotional changes, adherence to treatment regimes, and maintaining those things that are important to them – work, socialising, family.”[9]
The national service frameworks have only touched upon the tip of the occupational therapy iceberg. Some things seem to have been overlooked. One of those things is psychoneuroimmunology (PNI)[10].
If occupational freedom is a major determinant of well-being would if be sensible to assume it is a buffer to distress and unhappiness? Did you know that stress has been implicated as a contributing factor to several disease processes ranging from gum disease to cancer? It may even have a role to play in schizophrenia[10]. Distress pre-disposes us to cancers for example, by impairing DNA repair, programmed cell death, immune function, and the inhibitory effect of somatostatin on growth hormone release from the pituitary gland[11]. It may also pre-dispose us to pathological inflammation due to increased release of the pro-inflammatory cytokine substance-p[12].
Stress may also delay healing due to reduced concentrations of interleukin-1, matrix metalloproteinase-9 and tumour necrosis factor in wounds, and increase the risk of infection through the actions of corticosteroids on immune cells[13]. Can you think of anything that would make you happy in the total absence of occupational freedom? Does your happiness come from occupational freedom? Considering the how unhappiness affects mental and physical health, based upon the emerging PNI evidence perhaps occupational therapy has a (if not the) major role in national health improvement.
As the department of health has identified the need for life-style change and occupational justice to improve the health of the nation, why is the government not using occupational therapy to meet the identified needs? Why are there so many unemployed newly qualified occupational therapists and why are services being cut[14]? Is it because so few people know what occupational therapists are capable of[15]? Is it because the government does not know that occupational therapy is the profession to meet its needs?
5. Why do people not know what occupational therapists can do?
Occupational therapy can be metaphorically compared to transport design. Imagine occupational therapy was a car design company and the Department of Health was their customer. There are various things OTs could do to make their cars more attractive. An example is in-car entertainment (ICE). After a few years OTs may become experts in ICE production. If they got carried away with it they might even start to think that car production was all about ICE. After a while customers would think OTs were all about ICE, and they would be right. OT developments in ICE technology would far exceed those in car design. What would happen if OTs forgot about car production altogether and though ICE was their job? Is there any evidence that this is happening?
“I worked as an OT/Care-Manager for two years. I quit because care management simply isn't OT. OTs make good care managers, but it isn't part of our role and it stops us from doing proper OT.”[16]
“Looking at my acute work, I spend most of my time assessing care needs. Helping social workers determine appropriate care packages rarely increases the occupational freedoms of my patients in any notable or significant way, other than of course enabling them to stay in their own homes. (Some of my patients have chosen to go home and stay in one chair all day waiting for carers, rather than go to a more interactive environment that would enable them to be more active. That is of course their choice.) In my opinion, it is questionable whether this is really occupational therapy at all. In cases of progressed dementia for example, I doubt the patients notice any change in well-being as a result of my intervention. While I document their needs for continuing occupational engagement using the reverse developmental approach I honestly doubt my recommendations will be followed in continuing care. In contrast, enabling a 21-year old male to stick to his normal self-care routine (showering as opposed to strip washing) by issuing a shower-board is highly likely to be therapeutic. There is no doubt in my mind this is occupational therapy.”[17]
I was once told by a senior occupational therapist “the role of OT in the acute setting is to discharge patients home safely”. Is that occupational therapy? Perhaps that is the impression OTs have given the public and the Department of Health. If OTs cut any more corners off acute occupational therapy it will be acu e ccu a na era. An example of how the cost-cutting frame of reference has reduced quality of care by overpowering our reference to occupational freedom previously appeared on the British Association of Occupational Therapists’ Internet Discussion Forum:
“The technical instructor asked me why I issued a perching stool and I told her it was for strip washing as the patient could not manage bath transfers. The tech’ then asked me why the patient could not wash standing up. I told her a high degree of balance is required to bend over and wash your lower limbs while standing and the patient did not have this. The tech then told me that older people tend to soak their feet in a bowl and therefore do not need to bend over to wash them and asked me why the patient could not just wash in her own chairs like she did on the ward. I told her ward chairs are waterproof and few people have chairs like that at home. In my opinion it would not be good for a person to sit in a wet chair during the day. This argument did not even take into account that the patient had a fractured wrist and would probably have to carry a bowl of water to get to her chair. The tech’ then told me that older people do not wash their feet every day anyway. She said that generation only had a bath once a week. Another tech’ then said that it was common for people who could not undress their lower limbs and needed TED stockings to go home and wear the same stockings all week, having the Red Cross come around once a week to change them! I asked my band 7 for her opinion, hoping for some back-up because I was in a state of disbelief. She explained that I should be client-centered and respect that the older generation has a different culture to us and they are not so bothered about washing their feet. At this point the National Service Framework for Older People and routing out age discrimination sprung to mind. I had previously been told that I was issuing more equipment than the other therapists (issuing three bed-levers in three weeks was given as an example) and due to budgetary constraints if this continued I was likely to be put under scrutiny. I could not believe pseudo-client centered practice and generalizations about a particular age group were being used as an excuse to be stingy with equipment. What is the profession coming to?”[18]
Looking back at the metaphorical example, to who will people who want transport go? To the ICE experts or to other business better suited to meet their needs? Is it any wonder that life-coaches, health-promoters and Reverse Therapists are springing up to fill the gaps left by the occupational therapy profession?
6. Cutting out dead wood:
Perhaps we need to disregard the medical model along with some old assumptions to enable occupational therapy to reach its potential. Looking at many settings for example, occupational therapists are second to last to see patients, closely followed by social workers. Other members of the multi-disciplinary team tell OTs when a patient is ready for discharge and see discharge facilitation as OTs’ role. If maintenance of occupational freedom is the basis for healthcare intervention why are occupational therapists the last people to see patients? Can OTs lead from the end? Reflecting on psychoneuroimmunologic evidence, perhaps occupational therapy should be a preventative modality deployed predominantly in primary care. Some occupational therapists seem unable to envisage this due to the context of the current British health service environment[19]. Perhaps OTs should disregard this context and blaze their own trail. An erroneous assumption is that efforts to increase a person’s independence are by default occupational therapy. According to physics, there is no such thing as independence in the material Universe. Occupational freedom and independence are not always the same, and even occupational freedom may or may not be therapeutic depending on what an individual chooses to do with it. If independence was all that is required affluent people would not get depression, life coaching would be pointless and Reverse Therapy would not work. Perhaps occupational therapy is not only about ensuring people have occupational freedom, but also about ensuring they have the knowledge and coping resources to use that freedom therapeutically. Looking at the above example of a perching stool, a therapist believing “the role of OT in the acute setting is to discharge patients home safely” would discharge the patient without a perching stool loan, and perhaps advise her to wash her feet with a bowl sitting in her living room. This does not account for the therapeutic effect of enabling a person to stick as closely as possible to his or her normal daily routine, by washing in his or her bathroom with minimal inconvenience. Is it an example of selling ICE without a car?
Some assumptions about healthcare are hidden beneath policy and procedure. In some boroughs for example, service-users have to buy their own self-care equipment. It is worth noting that they do not have to pay for their own surgery or walking aids. Why is this? Is it due to an assumption that self-care ability is less important than the physical state of a person’s body and his or her ability to mobilise? Why are acute occupational therapists being encouraged to scrimp and save on equipment that could improve the quality of patients’ lives? Why should an older person be denied a perching stool in a country that can afford to invade Iraq and Afghanistan simultaneously? The sub-text is that occupational therapy is less important than surgery, physiotherapy or the invasion of foreign countries. Is this actually true? This is one of the disadvantages of following the medical model. By working to the medical model we may actually be reinforcing the subconscious belief that occupational freedom is not as important as measurable physical parameters of health, and by doing so, we may be undermining the occupational therapy profession. Would you rather be able to walk but need somebody else to feed you and wipe your bum, or would you rather be able to feed yourself and wipe your own bum but need help to mobilise?
7. Unleashing occupational therapy:
7.1. Marketing: Marketing occupational therapy would be easier if OTs projected a clear image of what occupational therapy is. That may mean refusing to take on work that is not occupational therapy and producing evidence that OTs are the best people to meet occupational therapy-related needs specified in the national service frameworks. As most people who have contact with occupational therapy services are currently likely to do so in the acute sector, it is very important that OTs practice holistically there so as not to create a false impression of what occupational therapy is. Ultimately government policy is influenced by politicians’ thirst for power. The voters grant that power. Marketing to the public is therefore more important than marketing to the government.
7.2. Maintaining Standards: The government will always put pressure on public service managers to cut costs. That pressure will invariably be transferred onto clinicians. Clinicians have the responsibility of exerting upwards pressure to let the management know when we have reached the minimal acceptable standards of care provision. If we do not do this, the management, and therefore the government will never know if cost-cutting has been unreasonable, and standards will keep dropping. The standard of care we provide generates our public image. Do OTs want theirs to be one of a profession that rushes patients out of hospital as quickly as possible or one of a profession that helps people live happy and healthy lives? If OTs spread thinly to conserve funding, and provide a poor quality service, few people will recognise the true value of occupational therapy. If OT managers set service-level agreements and minimum standards of care that they will not drop below, and let OTs treat people well until their funding has run out, people are more likely to identify how valuable occupational therapy is and demand more funding for it.
Red tape may be put in place as funding is cut to discourage OTs from supplying better, but more expensive standards of care. An example of this is occupational therapy equipment being taken off standard equipment lists and being put on special equipment lists or not being listed at all. This means more paperwork and senior authorisation is then required for the equipment. If OTs really care about standards of care, and believe occupational freedom is important, they should keep issuing reasonable equipment that will significantly but cost-effectively improve quality of life, filling out all of the documentation and going through the procedures necessary, even though as a result they will be working slower.
7.3. Early assessment and goal setting in in-patient settings: If the purpose of healthcare interventions is to maintain people’s occupational freedom, perhaps occupational therapists should be involved in assessment and multidisciplinary goal setting early, instead of just getting involved at the end of a patient journey to facilitate discharge from hospital. This could help to ensure more holistic, client-centred service delivery[20]
.
7.4. Moving into the private sector: Public sector management may make it very difficult to practice holistically, but occupational therapists are an autonomous profession, and need not rely on the public sector. I have previously been contracted to Deutsche Bank as a physiotherapist. I did not notice any occupational therapists there. Why not? Occupational therapy is not tied to the public sector, and it has plenty of room for growth.
7.5. Primary care and health promotion: Psychoneuroimmunologic evidence suggests that occupational therapy may be more effective in a preventative rather than curative role. It therefore arguably makes sense to push occupational therapy out into primary care, starting with occupational health education in schools, continuing through to adulthood. To some, it seems inconceivable that at some point in the future, everybody could have the option to register with an occupational therapist just as they do now with a general practitioner (GP)[19]. Why? Is this because we are unable to think outside the medical model? NHS acute care is currently like a revolving door. The same patients just keep going out and coming back in because they have not been given adequate occupational therapy to avoid psycho-socially mediated health problems. Occupational therapy has a future in pro-active and preventative healthcare delivery. One day occupational therapy may be competing on equal terms with medical care and pharmacology if occupational therapists only realise this, believe it and make it happen.
8. References:
1. BBC (undated) Inside Camp X-Ray http://news.bbc.co.uk/hi/english/static/in_depth/americas/2002/inside_camp_xray/default.stm accessed 18/11/2007
2. WHO (1948) Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference, New York, 19 June - 22 July 1946; signed on 22 July 1946 by the representatives of 61 States (Official Records of the World Health Organization, no. 2, p. 100) and entered into force on 7 April 1948. The definition has not been amended since 1948.
3. True World Order, (2000). Sivananda Yoga Teachers’ Training Manual. Val Morin: True World Order
4. BBC (2002) British woman denied right to die http://news.bbc.co.uk/1/hi/health/1957396.stm accessed 18/11/2007
5. Department of Health (2000) Reducing heart disease in the population. Chapter one of: The National Service Framework for Coronary Heart Disease. http://www.dh.gov.uk/
6. Department of Health (2000) The NHS cancer Plan. http://www.dh.gov.uk/
7. Department of Health (1999) The National Service Framework for Mental Health http://www.dh.gov.uk/
8. Department of Health (2007) NSF for older people Standard Eight - The promotion of health and active life in older age http://www.dh.gov.uk/en/Policyandguidance/Healthandsocialcaretopics/Olderpeoplesservices/DH_4002296 accessed 18/11/2007
9. Cayton H. (2007) Self care. http://www.dh.gov.uk/en/Policyandguidance/Healthandsocialcaretopics/Longtermconditions/DH_4128529 accessed 18/11/2007
10. Mackenzie S. (undated) Psychoneuroimmunology http://www.sallymackenzie.com/sitev1/infoon.asp?infoid=19 accessed 18/11/2007
11. Mailoo V.J., Williams C.J. Psychoneuroimmunology: a theoretical basis for occupational therapy in oncology?. International Journal of Therapy & Rehabilitation 2004 Jan; 11(1):7-12
12. Mailoo V.J. (2006) Psychoneuroimmunology and occupational therapy for inflammatory disorders. International Journal of Therapy and Rehabilitation 13(11): 503-510
13. Alford L. (2006) Psychoneuroimmunology for physiotherapists. Physiotherapy 92: 187-191
14. Guest (Fri Nov 02, 2007 1:17 pm) What is happening to OT services? http://www.cot.org.uk/members/phpBB2/viewtopic.php?t=2237 accessed 18/11/2007
15. Guest (Tue May 08, 2007 1:15 pm) Does it matter that people don't know what we do? http://www.cot.org.uk/members/phpBB2/viewtopic.php?t=1785 accessed 18/11/2007
16. Griffin (Wed Nov 07, 2007 1:27 pm) No subject http://www.cot.org.uk/members/phpBB2/viewtopic.php?t=2245 accessed 18/11/2007
17. Venth (Thu Nov 08, 2007 6:31 am) Survival http://www.cot.org.uk/members/phpBB2/viewtopic.php?t=2237&postdays=0&postorder=asc&start=30 accessed 18/11/2007
18. Defeated (Fri Oct 26, 2007 9:36 pm) Banging my head against a brick wall http://www.cot.org.uk/members/phpBB2/viewtopic.php?t=2134 accessed 18/11/2007
19. Various (2007) occupational apartheid http://www.cot.org.uk/members/phpBB2/viewtopic.php?t=1848&postdays=0&postorder=asc&start=0 accessed 18/11/2007
20. Venth (2007) Early access visit v later home visit? http://www.metaot.com/blogs/%5Buser%5D-4 accessed 18/11/2007
The diagrams in this blog entry have been reproduced with the kind permission of MA Healthcare http://www.ijtr.co.uk/
