Updated: 14 Jul 2019 | Posted in: Conditions
A few weeks ago, Jane and I had the privilege of attending a seminar at Oxford Brookes University entitled ‘Patients in a Prolonged Disorder of Consciousness: treatment and management’. It was facilitated by Professor Derick Wade with whom we have worked for many years, and there were a host of experts within the field of PDOC including Dr Andrew Hanrahan, Professor Lynne Turner Stokes and Celia Kitzinger.
Jane, Claire and I have all worked with patients who have a disorder of consciousness for many years and over the years we have learnt how to assess and manage the impairments and disabilities that prevail after such catastrophic neurological events. We have also seen the heartwrenching distress of loved ones, including young children, who now live with the reality of their relative still here, yet far from the loved one that they used to know.
During the day we heard about the medical management, trials of different medications and the reality of having to have really difficult conversations with relatives who have hope of recovery. Discussions were had over not taking hope away, but still having to be realistic about the often limited recovery that may be possible. Getting the balance takes skill, honesty and a great deal of bravery, but is one that the speakers seemed to be able to do as part of their routine.
The experience that Jane and I both found the most moving and thought provoking, was a talk by Celia Kitzinger. Celia is a Professor of Sociology at the University of York and co director the Coma and Disorders of Consciousness Research Centre. Her sister Polly had a severe traumatic brain injury many years ago and still lives with a disorder of consciousness meaning that she requires 24 hour a day care.
Celia is a strong and passionate believer in individuals and family members being given choice – the choice that they want. She is an advocate for everyone making advanced decisions about health care and treatment and making your wishes clear so that decisions about future care are set out should anyone be in the position not to be able to make those decisions themselves.
Ceiling displayed ‘postcards from families’ which were harrowing and sad. Postcards that had heartfelt feelings about how they so longed and hoped for recovery, yet years down the line still lived with a loved one as a shell of their former selves.
The most powerful sharing from Celia was an illustrated message from her sister Jenny who had a strong bond with Polly. The message was annotated by many cartoon drawings that Polly herself had done. It gave a message of the independent, strong, care free woman that Polly was. The family fought for Polly’s Artificial nutrition and hydration to be removed following her accident, as they knew that she would not wish to live the life that she now lives.
It was emotional to think of such a free spirit being cut short, a frankly horrendous position for a family to have to deal with and the despair at the situation now 10 years on.
Celia also gave much practical advice on how to support families of those in PDOC. How information sharing is crucial and how working together and bringing the family on board is crucial in building firm relationships that will benefit the patient.
Jane and I travelled home that evening feeling tired but challenged and with a renewed sense of how important each member of the team and the family are to ensuring the very best is done for those patients we encounter who are in PDOC.