bmj.com Rapid Responses for Lapsley and Groves, 329 (7466) 582-583

Rapid Responses to:

EDITORIALS:
Peter Lapsley and Trish Groves
The patient's journey: travelling through life with a chronic illness
BMJ 2004; 329: 582-583 [Full text]

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Rapid Responses published:

Bon voyage: susanne mccabe (12 September 2004)

Chronic illness, the patient and the holistic medical toolbox: S�ren Ventegodt, Mohammed Morad and Joav Merrick (16 September 2004)

Bon voyage 12 September 2004

susanne mccabe,
retired
cf24 3pf
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Re: Bon voyage

This is a good initiative which fits with the present culture in UK and not least because it will likely lead at times to unexpected, creative developments - if genuinely left open to publishing the authentic voices of all participants. Interpreting others' experiences is fraught with difficulty. You ask for feedback so;-
Most members of the public will not be aware of this initiative unless they are informed. All healthworker members of the various BMJ comittees etc could make a committment to inform their service users with a standard notice drawn up by the advisory group for circulation.
A more open recruitment to the advisory group woud be appropriate now. But it needs to be from a wide pool and include those with no private acces to the internet.
There needs to be a formal policy for contributors which proves consent to publication as this will not be covered by usual medical journalistic guidelines. At times discussion and certainly publication of others' lives would be unwelcome;other members of social circles will be implicated; at times people will not be able to give consent themselves, a carer is in a relatively powerful position in this situation.
Competing interests: None declared

Chronic illness, the patient and the holistic medical toolbox 16 September 2004

S�ren Ventegodt,
Medical director
The Quality of Life Research Center, Teglg�rdstr�de 4-8, DK-1452 Copenhagen K, Denmark,
Mohammed Morad and Joav Merrick
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Re: Chronic illness, the patient and the holistic medical toolbox

EDITOR---In a new series of papers (1) the BMJ will address the extremely important issue of living with a chronic disease. We know that a hign percentage of the population will suffer from one or more chronic health conditions and most from one or more symptoms of ill health at any given time (2,3).
It is therefore important to teach the patient to cope with the present state of health and we believe that it is even more important to inspire and coach the patient to work on improving quality of life (QOL), subjective health and functional ability in general (4-17). We even believe that patient has the potential in some cases to cure themselves and improve QOL, even when the physician has given up (18-21), because one can grow as a person and heal basic existence (20). The fundamental difficulty seems to be the development of the patients consciousness towards a more positive, responsible and constructive attitude (20-23).
When Aldous Huxley said, "Experience is not what happens to a man; it is what a man does with what happens to him�(24). This opens up for more possibilities that just �giving patients time and space to talk about what happens to them to improve their experiences of illness� (1), it is the whole life that can be improved, in many cases including the fundamental health, as we have shown in a resent series of papers on holistic medicine (25-38).
So we want to reframe: �the patient's journey travelling through life with a chronic illness� to �the patient's journey travelling through life fighting a chronic illness�. We need as physicians a much more supportive and positive approach to the patient and to the project of mobilising his/her hidden resources using the possibilities to grow and develop as a person.
The support of the patient as a whole, resourceful person is one of the most important aspects of today�s medical practice with the chronic patient. The most important aspects of life to deepen the understanding must embrace:
� The map: an outline of the natural course of the disease � with and without the effort of the patient to improve own life (global QOL, general health, ability) (5-38)
� The good and bad news: What's wrong with me? What is going to happen to me? How is it going to end? And most importantly: what can I do myself to fight this disease and improve my QOL and my health? (5-10)
� Learning from your chronic disease: how to take responsibility for your own QOL (9,11,15,22,23,24-38)
� Travelling alone or travelling with others � which is basically the patients choice in many cases
� Losing independence and dealing with changing relationships and social roles
� Companions on the journey: Friends and family, professionals, support organisations
� Ways of coping, ways of improving QOL and health, ways of healing yourself (20,21,25-38)
� What I need along the way: Information, help, treatment, coaching, love and inspiration [22,25-38]
� Losing the path and finding it again: Other problems that may arise over time [9]
� Travellers' tales and tales from exceptional patients of personal success showing what to do with impossible situations: One or more brief stories and quotes from real patients�highlighted by one 300-word personal account (38)
� Journey's end including examples of patients dying the �good death� (11)
AFFILIATION
S�ren Ventegodt, MD, is a general practitioner and the director of the Quality of Life Research Center in Copenhagen, Denmark. E-mail: ventegodt@livskvalitet.org Website: www.livskvalitet.org/
Mohammed Morad, MD, is a family physician, the medical director of a large area clinic in the city of Beer-Sheva, Israel. E-mail: morad62@barak-online.net
Joav Merrick, MD, DMSc is professor of child health and human development, director of the National Institute of Child Health and Human Development and the medical director of the Division for Mental Retardation, Ministry of Social Affairs, Jerusalem, Israel. E-mail: jmerrick@internet-zahav.net. Website: www.nichd-israel.com
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Competing interests: None declared