CHAPTER 15
Principles of Holistic Management of Skin Disease

Sam Gibbs

Great Western Hospital, Swindon, UK

What is holistic management and is it important?

What does the term holistic mean in the context of medical practice? Derived from the Greek adjective for whole, ὅλoς, holistic has been increasingly used since the middle of the 20th century to describe an approach to the management of disease in which the whole person – physically, psychologically, socially and spiritually – is given full consideration. Such a holistic view acknowledges and takes into account the important relationship that exists between physical health and the broader, deeper, more general and rather less tangible (and thus less measureable) well-being of the person as a whole. In short a holistic approach in medicine involves being informed about the patient's whole life situation and understanding the importance of all its elements in influencing that patient's disease and its response to treatment.

Many present-day physicians with a predominantly scientific training and working in a health care system increasingly influenced by business models are likely to feel a certain sense of suspicion about the notion of holistic medicine; some may even be dismissive of it. Their reasoning would be that the essence of medical practice in the modern world is simple, and twofold: to make a diagnosis and then to provide treatment. Technological advances in the last 50–100 years have transformed these two processes so much, they might argue (even if subconsciously), that there is now little room or need for anything beyond the scientific and technical elements of medicine.

To express this view more starkly, such physicians would consider that the psychological and spiritual state of the patient, although not unimportant, is only of peripheral relevance to the doctor, whose primary tasks are to make a diagnosis and to treat – essentially technical processes. From this perspective any attempt to consider the broader state of the patient, their psychological or spiritual condition, would serve only as a distraction, muddying the water and making matters less clear for patient and doctor alike. Moreover the latter's ability to diagnose and treat psychological, social and spiritual ills is generally limited, so that attempts to explore these areas would merely take up valuable time with little likelihood of being fruitful or helpful. This line of reasoning therefore leads to the conclusion that it is best to put such spiritual and psychosocial issues to one side in order to make the most efficient use of the time available for diagnosis and treatment.

Thus there are perhaps two perspectives at each end of a spectrum of approaches to disease management with the holistic (considering everything) at one end and the technical or scientific (focusing on the hard facts and concentrating purely on diagnosis and treatment) at the other. The distinction that some might draw between the ‘holistic approach’ and the ‘more scientific’ one is not, however, as clear as some might think. All doctors are taught from very early in their training that, in order to practice medicine properly, the whole patient in their wider environment must be considered and not just their immediate disease.

A few simple examples will demonstrate that all good doctoring requires a certain amount of holistic thinking, where the focus of the physician's attention is widened beyond the pure and simple technical issue of the initial presenting complaint.

  1. Consider a patient with hand dermatitis. It would be half-hearted medicine indeed to treat this without identifying whether its cause is a contact allergen in the patient's occupational environment (a widening of focus from the skin disease to its environmental cause).
  2. In dealing with a skin cancer it would be bordering on negligent to remove a malignancy surgically but then fail to advise the patient, particularly if relatively young, to reduce further risk by being more careful about sun exposure (a widening of focus from the present problem to possible future risk).
  3. When managing severe psoriasis it would be hard-hearted merely to recommend methotrexate without demonstrating some empathy and communicating to the patient an understanding of the distress caused by the disease (a widening of focus from the patient's physical body to their social and psychological condition).

All good-quality medical practice, therefore, has a holistic component. Few would disagree with the wider focus needed in the first two examples, where good medical practice requires the more holistic approach in order to attain better long-term outcomes. It might even be possible to measure this effect.

When considering the third example, however, some physicians of a more rationalistic and scientific bent might argue that, although demonstrating empathy and understanding is decent and human, it probably does not greatly influence outcome and this example is, therefore, qualitatively different from the first two. The matter is not quite so clear, however, and there are studies showing quite clearly that psychological factors do indeed affect clinical outcome.

In their fascinating essay published in the Lancet in 1996, Tudor Hart and Dieppe [1] explore the clinical effects of caring attitudes. They cited a number of diverse examples including, for instance, a series of randomized controlled studies that showed that regular telephone contact with patients improved clinical outcomes (e.g. increased mobility and reduced pain in patients with chronic arthritis) when compared with standard treatment without telephone contact. Further exploration of the data confirmed that telephone contact did not result in an increased use of treatments such as drugs and physiotherapy. This added weight to the conclusion that it was the human contact, interest and psychological support provided by telephone calls in these studies that resulted in a measurable clinical effect.

This is, however, a neglected area of research in which good studies are hard to come by. In the field of dermatology a quite striking study by Fortune et al. elegantly demonstrated that psychological distress has a clear and measurable negative effect on the response of psoriasis to photochemotherapy [2]. The same might well apply to patients being treated with methotrexate, as in the third example above. The corollary of this is that if psychological distress can be reduced by empathetic doctor–patient and nurse–patient interaction, or indeed other factors, then the outcomes of therapeutic interventions are likely to be improved. Most experienced doctors would recognize that medical interventions (including those that appear very simple and technical, such as administering a local anaesthetic) tend to have better outcomes when the patient has a degree of trust, confidence and positive expectation.

Are we doctors or disease management technicians?

The tension that exists between scientific medicine and holistic practice outlined above is neatly summarized by this question. Is the dermatologist just a technician whose role is purely to diagnose and treat skin disease or is there actually more to the role? Again a spectrum of opinions would probably emerge in answers to this question from a generous sample of dermatologists. Most would probably accept that there is more to dermatology, and indeed to all doctoring, than the purely technical aspects. That ‘something more’ was very well described by W. Mitchell Sams in an article about the erosion of ethical standards in medicine in 1998 [3].

Although the physician is a scientist and a clinician, he or she is and must be something more. A doctor is a caretaker of the patient's person – a professional advisor, guiding the patient through some of life's most difficult journeys. Only the clergy share this responsibility with us.

The more scientific doctor will probably play down this ‘something more’, whereas the more pastorally inclined will regularly employ it in day to day practice. But for even the simplest clinical situation there will always be a pastoral component to the patient's care and, as Sams goes on to show in the essay cited above, we ignore this at our peril.

What is the evidence for the importance of this ‘something more’? The clinical effects of psychological factors are not easy to measure but the studies already cited [1, 2] provide some examples. The fascinating phenomenon of what is commonly referred to as the placebo effect also provides fairly direct evidence of how non-technical factors appear to have a very significant and measurable effect on health care outcomes. The neurophysiological mechanisms that underlie the placebo effect are now beginning to be understood [4].

The popularity of complementary therapies is also of interest and relevant to this question. Scientific evidence for the effectiveness of complementary treatments is all too frequently lacking but there is no doubt that the more leisurely, human and holistic approach customarily used by complementary practitioners is popular. A recent systematic review of surveys in the UK revealed that, on average, 26.3% of the population had used complementary and alternative medicine within a 1-year period [5]. Surely this is significant indirect evidence that, for some health problems at any rate, a proportion of patients appear to be seeking out that ‘something more’; they are not ‘just’ looking for a correct diagnosis and effective treatment.

Is dermatology different?

It could be argued that the pastoral, holistic, ‘something more’ component of medical practice so far outlined is particularly pertinent to the discipline of dermatology. There are three reasons for this. The first and most important reason is that there is a particular quality of morbidity and disability associated with diseases of the skin, especially the inflammatory dermatoses such as eczema, psoriasis and acne, that needs to be understood and appreciated by those caring for patients with this group of disorders. None of these diseases have a significant influence on general physical health but their impact on psychological, social and sexual well-being is very considerable, frequently underestimated and now well documented in the literature [6]. Patients that carry the burden of these diseases often need someone to listen to them and understand them just as much as they need effective treatment.

Second, many of these diseases are chronic and, although they may be treatable, they are not yet curable. The effective management of the long-term disability from psoriasis, for instance, requires considerable pastoral skills.

Third, within dermatology there are a small number of conditions for which therapeutic options remain limited at best. Included in this group are conditions such as vitiligo, alopecia areata and the scarring alopecias. For those severely affected by conditions where therapeutics has little to offer, it remains with those caring for these patients to somehow offer understanding and empathy. Encounters with such patients can prove to be among some of the most humbling moments in the working life of the dermatologist: we are reminded that, despite the considerable technological progress that has been made in many areas of medicine, the old adage still holds that the role of the medical profession is ‘to cure sometimes, relieve often and comfort always’.

How important is it to empower patients?

There is one further very important aspect of holistic management that has been mentioned so far only in passing and that is the area of patient empowerment. The example of educating patients (and the general public) about the dangers of excessive sun exposure to reduce skin cancer risk has already been highlighted. It is a good example of how dermatologists can empower patients with an understanding of the harmful effects of UV radiation, allowing them by informed choice to change their behaviour and avoid high-risk exposure.

Education empowers people but empowerment also includes the process of enabling patients to own and take responsibility for their own care rather than the more traditional model of the patient remaining in a relationship of dependence. Empowerment can take place in two broad areas, the first being education in a clinical setting where knowledge is handed on from professionals to patients. The second is in patient self-help groups, where patients with similar medical problems learn from each other's experiences, obtain valuable psychological support from one another and also gain a degree of political power from becoming part of an organized group.

Patient education

Knowledge is power. Passing on to patients the power of understanding their disease and its management is an exciting aspect of holistic care. In dermatology there is probably most experience and research in this area in managing atopic eczema in children [7]. There is something of an irony here because, of all the common skin diseases, atopic eczema remains one of the least understood, both within the medical science community but also amongst the lay public. Moreover opinions about aetiology and management vary considerably even amongst the specialists who advise on its treatment, including dermatologists, paediatricians, allergists and immunologists. This would not seem to be a good starting point for patient empowerment by ‘therapeutic patient education’ [7], but perhaps this chronic, complex and difficult disease is a good example of where health care providers and patients can share their knowledge and their ignorance, their power as well as their frustration.

There is a large number of studies across the field of medicine showing that interventions involving patient education can be beneficial and have a measurable positive influence on disease severity and quality of life. In atopic eczema, benefit from patient education is likely to depend upon parents and children acquiring appropriate skills of self-management such as frequent emollient use and the need to adjust treatment to cope with flares of disease [7]. Patient and parent confidence increases and adherence to the regular use of topical treatments improves.

The value of patient education has been examined in a systematic review of randomized trials of educational interventions for chronic skin disease [8]. Of the 10 rather heterogeneous trials that met the inclusion criteria, eight involved patients with atopic eczema and two included patients with psoriasis and atopic eczema; six trials were confined to children, three to adults, and one included both adults and children. In five of the trials patient education was reported to have resulted in significant improvement in quality of life; in three trials a significant improvement in disease severity was observed. Worthy of mention within this systematic review is the trial by Staab et al. involving 823 paediatric and adolescent patients with atopic eczema [9]. Patients were randomized to standard treatment with or without the addition of six 2-hour educational sessions with a multidisciplinary team. Significant improvement in quality of life for both children and parents was clearly demonstrated as well as significantly reduced disease severity scores in the intervention group.

Research in this area is not confined to atopic eczema, however. Another randomized trial of 255 adult health workers with hand eczema showed a clear sustained benefit after 5 months’ follow-up in patients who were randomized to an additional secondary prevention programme involving education in skin care as well as standard treatment [10]. Quality of life as measured by the Dermatology Life Quality Index [11] was significantly higher, whereas the scores for both the Hand Eczema Severity Index used in the trial and self-reported severity were significantly lower in the intervention group.

Patient self-help groups

These are a very important resource within the therapeutic armamentarium of the holistic dermatologist for helping patients with a very wide variety of skin conditions from atopic eczema to xeroderma pigmentosum. Many self-help groups can be found via the internet and the following gives some guidance.

Dermatology information sites

Links to patient group websites are often contained within websites dedicated to providing information for patients with specific skin diseases. Some care is needed when searching the internet as some information sites are heavily commercialized and it is not always easy to know how reliable or genuine the information is and nor is it easy to be sure of the credentials of those providing it. The following lists some examples (all sites last accessed February 2015):

  • www.bad.org.uk: The British Association of Dermatologists web pages include useful patient information leaflets and also details about patient groups.
  • www.dermnetnz.org: This excellent New Zealand-based website provides a large amount of information about many different dermatological conditions but also numerous links to other websites including patient groups in different parts of the world.
  • www.aad.org/dermatology-a-to-z: This is part of the US-based American Academy of Dermatology website, which provides information about many skin conditions and links to patient groups, particularly in the USA.
  • www.dermis.net: A website based in Germany and worthy of mention as it has images of a wide range of skin conditions and also information available in seven different languages (German, French, English, Spanish, Portuguese, Japanese and Turkish).
  • www.ilds.org: The International League of Dermatological Societies website is helpful for searching for groups around the world as it contains links to all its member societies across the globe and many of these individual websites can be searched for more local information. It also has a catalogue of patient support groups at web.ilds.org/references/patient-support-groups.
  • www.orpha.net: This is a very useful website for information about a wide range of rare disorders, dermatological or otherwise. It contains links to patient groups in many different parts of the world.

For more common diseases it is not too difficult to find local information from the websites of international umbrella organizations using a standard search engine. An example is the International Federation of Psoriasis Associations (www.ifpa-pso.org/)

It is often a great help to patients and their families to have an organization that represents and supports patients with their particular condition. These organizations vary considerably but they can offer some or all of the following:

  • Written and online information about the particular disease and its management.
  • Up-to-date information on the current scientific understanding of the disease and any research that is currently focusing on it.
  • Up-to-date information on currently available treatments and research into possible new treatments.
  • Advice and warnings about bogus and unhelpful treatments.
  • Information about how to find, join and even form patient support groups – locally, nationally and internationally.
  • Contact details of people within the organization to contact with questions and concerns.

All of these can provide extremely helpful extra support which cannot always be offered to patients during time-constrained consultations with professionals. Patient-support organizations can also have an important advocacy role, setting out the needs and rights of patients before the medical profession (influencing access to treatment), the research community (influencing the research agenda) and government bodies (influencing the funding of health care).

Conclusions

However firm and well-founded the scientific basis for modern medicine may appear to be, it only requires a little reflection to realize that there is more to the practice of medicine than just the technical aspects of diagnosis and treatment. Moreover the processes of diagnosis and treatment themselves are never completely governed by rational, mechanistic principals; there has to be some art as well as science in good doctoring. No two patients with the same disease present in quite the same way. Psychological and emotional forces as well as biological ones influence the outcome of most medical interventions. It is perhaps particularly important to appreciate this when trying to help people with disorders of the skin where the interplay between the psyche and the skin is so evident. Involving patients in their management by education and empowerment is also increasingly being shown to be a vital element of good medical care, which increases adherence to treatments and improves outcomes.

However much some in orthodox, scientific medicine may mistrust the term ‘holistic’, however strong the current of the reductionist, scientific world view may be and however heavy the constraining pressure of increasingly industrial style ‘modern’ health care systems becomes, the neglect of the broader and deeper elements of the human person in medical practice will only result in serious and damaging impoverishment for both patients and practitioners. Good dermatological practice is holistic dermatological practice.

References

  1. Tudor Hart J, Dieppe P. Caring effects. Lancet 1996;347;1606–8.
  2. Fortune DG, Richards HL, Kirby B, et al. Psychological distress impairs clearance of psoriasis in patients treated with photochemotherapy. Arch Dermatol 2003;139:752–6.
  3. Sams WM. The corroding of our core. J Am Acad Dermatol 1998:38:983–6.
  4. Benedetti F. Placebo and the new physiology of the doctor–patient relationship. Physiol Rev 2013;93:1207–46.
  5. Posadzki P, Watson LK, Alotaibi A, Ernst E. Prevalence of use of complementary and alternative medicine (CAM) by patients/consumers in the UK: systematic review of surveys. Clin Med 2013:13:126–31.
  6. Finlay AY. The burden of skin disease: quality of life, economic aspects and social issues. Clin Med 2009;9:592–4.
  7. Stalder JF, Bernier C, Ball A, et al. Therapeutic education in atopic dermatitis: worldwide experiences. Paed Dermatol 2013:30:329–34.
  8. De Bes J, Legierse CM, Prinsen CA, et al. Patient education in chronic skin diseases: a systematic review. Acta Derm Venereol 2011;91:12–17.
  9. Staab D, Diepgen TL, Fartasch M, et al. Age-related, structured educational programmes for the management of atopic dermatitis in children and adolescents: multicentre, randomised controlled trial. BMJ 2006;332:933–38.
  10. Ibler KS, Jemec GB, Diepgen TL, et al. Skin care education and individual counselling versus treatment as usual in healthcare workers with hand eczema: randomised clinical trial. BMJ 2012;345:e7822.
  11. Basra MKA, Fenech R, Gatt RM, Salek MS, Finlay AY. The Dermatology Life Quality Index 1994–2007: a comprehensive review of validation data and clinical results. Br J Dermatol 2008;159:997–1035.