Editorial — Whose life is it anyway?

There is much discussion about whether the term ‘client’ or ‘patient’ should be usedwhen referring to people with disabilities who are receiving healthcare. Althoughthis may seem somewhat pedantic it is based on the premiss that the term ‘patient’implies a passive recipient of healthcare, whereas ‘client’ refers to a consumer of aservice. There has been a growing recognition that care provided must be responsiveto the preferences and values of healthcare consumers and that their opinions aboutthe outcome and the quality of care are important. In both Europe and North Amer-ica this has led to the public becoming more directly involved both in decisionsabout priorities in the provision of health services (Department of Health, 1997;Sullivan et al., 1997), and about their own healthcare (Sackett et al., 1996).

For this to occur at grass roots level healthcare staff must be clear of their role asservice providers. They must realize that they are there to provide a service byimparting their knowledge and expertise rather than imposing their views on theindividual. These people have often lived with their disability for a long time andmany have become experts as to their specific needs, in essence ‘they have a PhD intheir own uniqueness that is very powerful in solving complex problems’ (Weed andZimny, 1989). This personal experiential knowledge base needs to be backed up andreinforced with good, practical, professional research which is focused not only onprofessional interests but which includes an examination of the needs of peopleaffected by the disease as they express them (Hatch, 1997).

It is also important to recognize that many management issues have a directeffect on the lifestyle of not only clients but also their families and friends. From theclient’s perspective needs are always set in the context of personal life objectives —and are thus intrinsically based on very different views to those of the professionalstaff concerned with them (Robinson et al., 1996). Decisions may therefore becomemuch more than simply a health issue; personal wishes and expectations, as well associal and environmental factors, must be taken into account.

We have a tendency to think that we, the professionals, know best when in factwe have only a very restricted perspective of the client’s situation. Indeed, increasingconcerns have been raised about the ability of healthcare professionals to assume

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that the recipients of their expertise share their values about what is important. Thishas been highlighted by the results of a number of recent studies which have demon-strated striking differences in the way that consumers and healthcare professionalsview health issues (Rothwell et al., 1997). Such research makes clear the need foractive dialogue between service providers and consumers.

Not infrequently professionals complain of non-compliance with their advice.This may, at least in part, be because of the failure by professionals to understandthe complicated agenda of the lives of people with the condition (Robinson et al.,1996). Involving patients in the decision-making process about their treatmentmay be beneficial in increasing their compliance with treatment recommendations(Partridge, 1997). It is also likely to increase their satisfaction with the serviceoffered.

Determining the intensity of treatment and when to cease treatment is a particu-larly important and often difficult issue. Opposite ends of the spectrum may exist.Some people express the desire for ongoing treatment; to use therapy services on apreventative and continuous basis. Others dutifully attend therapy sessions despiteidentifying little benefit or purpose in the intervention. Matching an individual’sneeds to available resources is extremely difficult. Invariably, resource limitationswill impose significant constraints on the services available; frequently, demands willnot be met. Therapists must rise to this challenge by educating and informing boththe purchasers and recipients of healthcare services about what they can offer. To beeffective this needs to be in clear and simple language that is meaningful and rele-vant to all the parties involved.

This whole process is reliant upon the clinical expertise of the therapist, togetherwith the humility to recognize the expertise of patients and the role they have toplay in their own care and management. A frank exchange of information, negotia-tion and co-operation is required if a true partnership between the therapist and theperson with the disability can exist. It requires the therapist to hand over control, tooffer choices not to make them; whose life is it anyway?

REFERENCES

Department of Health. The New NHS, Modern and Dependable (CM 3807). London: HMSO, 1997. Hatch J. Building partnerships. In: Thompson AJ, Polman C, Hohlfeld R (eds). Multiple Sclerosis:

Clinical Challenges and Controversies. London: Martin Dunitz, 1997; 345–353.Partridge C. The patient as a decision maker (Editorial). Physiotherapy Research International 1997; 2:

iv–vi.Robinson I, Hunter M, Neilson S. A Dispatch From the Frontline: The Views of People with Multiple

Sclerosis about their Needs. A Qualitative Approach. Report for the Multiple Sclerosis Society,1996.

Rothwell PM, McDowell Z, Wong CK, Dorman PJ. Doctors and patients don’t agree: cross sectionalstudy of patients’ and doctors’ perceptions and assessments of disability in multiple sclerosis. BritishMedical Journal 1997; 314: 1580–1583.

Sackett DL, Rosenberg WM, Gray JAM, Haynes RB, Richardson WS. Evidence based medicine: whatit is and what it isn’t. British Medical Journal 1996; 312: 71–72.

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Sullivan MJL, Irving C, Jamieson P, MacDonald C, Boutilier S. Involving consumers with disabilitiesin Nova Scotia’s reformed health system. Canadian Journal of Rehabilitation 1997; 10: 307–314.

Weed, Zimny N. The problem-oriented system, problem knowledge coupling and clinical decisionmaking. Physical Therapy 1989; 69: 565–568.

Jennifer FreemanSusan Edwards

National Hospital forNeurology and Neurosurgery

LondonAssociate Editors

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