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Sunday 20th May 2018

The Absent Presence; A Special Relationship

16th November 2006

Redesign, revision and rationalisation is currently in the air in health care service provision.

Recently, whilst I was speaking at the Royal College of Cancer Nurses National Conference held at the National Motor Cycle Museum in Birmingham earlier in the week, some difficult questions were posed.  Not least, by the specialist cancer nurses in the audience asking what would happen to them in the Brave New World of cancer as a long-term condition and the prospect of providing care closer to the patient’s home.

Along the patient pathways, various professionals interact to provide high quality care.  The role of the specialist nurse has come under some scrutiny, particularly in the field of cancer; and how they will now bridge the care pathway into the community.  An interesting concept is one of the nurse as guide for the patient; and ultimately the patient care pathway as the map to guide specialist nurses into new ways of working.

The Multi-disciplinary Team Meeting (MDM) is understood to be the cornerstone of effective, safe and well-planned patient cancer care.  Within the current NHS provision, the presence of the specialist nurse at the MDM facilitates the patient along the pathway, in a timely and coherent manner.  Within the current framework, MDM’s are tightly functioning systems that take a multi-disciplinary approach to cancer patient pathways, determining such plans as first definitive treatment or palliative care regimes.

The patient’s experience of a cancer pathway is often described as a journey.  The concept of the journey as a metaphor for the experience also has its part to play.  Such descriptions may relay the journey as an epic voyage, a battle or a journey of discovery along unfamiliar roads.  What is key to any pathway is that the hero, or the one undertaking the journey, is met at various points by guides that take him some part of the way and facilitate a smoother passage.  The role of the guide is to hold the wisdom of the moment that may not be apparent at first to the traveller. It may be suggested that the patient’s journey along a cancer pathway also mirrors such epic sojourns.

What is interesting is the concept of the absent patient, only present at an MDM meeting as a representative “hologram?; a virtual presence constructed from radiology and pathology images and clinical opinions. Such a cellular representation means that a number of patients can be discussed and their treatment planned efficiently. However, what of the true picture of the whole person?  Along the entire patient journey, the MDM is the only meeting at which the patient is precluded. This reality is given many legitimacies, including confidentiality, governance, Caldicott responsibility and time management for effective information review.

With the cancer nurse specialist in the guise of guide, translator and advocate, this is especially needed at the MDM, where the absent patient made present on a cellular level requires construction as a whole.  With the advent of telemedicine, cross-boundary working and IM&T innovation, more of the patient’s physiology is available for information that will provide the knowledge of the patient’s body. This will in turn inform the decision making process as to where and what next is to happen on his or her journey.  What is held by the specialist nurse at the MDM is the holistic knowledge of the patient, for example, as case manager and inter-agency interface: a unifying centre for a traveller whose world may be turned upside down, and one who may literally be all at sea.

What is also held is the opportunity for patient representation and advocacy by the specialist nurse. The nurse-patient relationship is one of just that: relationship.  Advocacy suggests an imbalance since the patient cannot fully represent himself.  An advocacy relationship suggests an absence of presence rather than an imbalance of power; or an abdication of choice. This is where the nurse as advocate steps in, to acknowledge the being and to represent the patient during this “absence?.  During the MDM presentation of a patient’s pathology, the nurse often acts as a reminder of the whole person who suffers cancer; not one who is cancer. How can we enhance current practice to facilitate the advocacy role?

A suggestion may be that with the advent of digital camera technology, all slides are preceded by a photograph of the person with his family and / or significant others, so the MDM team can see the “team? they are actually supporting.  Moving away from the reductionist approach of current practice, where the focus is on the tumour at cellular level in splendid isolation from the being in whose body it resides.  The call of “I am not my diagnosis? is one that is vociferously raised by all cancer patients.  With advocacy at the right time and the right place, most crucially at the MDM, the traveller’s tale calls for the wise guide to come forward and be recognised; knowing that on the patient’s behalf they too can undertake a courageous journey, in new terrain and in unfamiliar care settings, as a continuation of the special relationship they have formed.

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