There must be a better way

Since leaving medical school I have had little practical experience in dealing with patients who are terminally ill. I have, however, been involved with a case that has changed my view of my chosen profession as I watched powerlessly as a 61 year old widow slowly succumbed to metastatic oesophageal carcinoma.

I shuddered when she first described to me her symptoms of progressive dysphagia, and envisaging the nightmare that would follow I tried to be positive, while waiting for the inevitable diagnosis. Over the next eight months I watched in horror as she was treated not as an intelligent woman who was dying of a cruel incurable cancer but as a disease.

From the moment of diagnosis to her death her prognosis was not mentioned to her. I listened incredulously as she agreed to her radiotherapy and chemotherapy - hastily explained and certainly not with real "informed consent." Meanwhile her stunned family was told that there was no hope. She was given warfarin for multiple pulmonary emboli and began the relentless round of blood tests and visits to the stark and depressing radiotherapy unit. The disease began to take its toll over Christmas, and by now suffering with candida and oesophagitis she bravely attempted to eat her liquidised turkey. While the world was celebrating the dawn of a new millennium she lay retching in her bed, too weak to stand, and her weight plummeting, all the while asking, "When am I going to feel better?" When her hair fell out she was heartbroken, but as with the nausea and lethargy she bore it stoically, convinced that these were necessary evils to be endured if she was to be cured.

It was during her third month of chemotherapy that she deteriorated. Her quality of life had been minimal since she started her treatment. Barely recovering any strength or appetite, each admission became progressively longer. She became pancytopenic and could not swallow her own saliva. She was told that she "would be a new woman in six weeks." Her children looked on in dismay, their mother was by now cachectic, bruised, confused, plagued with nosebleeds, barely able to sit up, and was worsening daily yet was subjected to a barium swallow and more investigations. Her oncologist could find no obvious cause for her now complete dysphagia and suggested that there was a strong psychological component to it. Her family knew that she was dying and as her aspiration pneumonia took hold they begged for all treatments and planned investigations to be stopped. Their plea was ignored. She died the next morning.

Six months have now passed but I think about this person a great deal because she was not my patient but my mother. While the standard of nursing she received during her illness was excellent, I was disappointed and frankly ashamed at many aspects of her medical care, in particular at the complete lack of compassion and the appalling communication skills. The way she died has forced me to question not only the way I practise medicine but also if I have any future in a profession which sees people as a disease and not a person, breaks confidentiality, and utterly disregards a patient's right to autonomy. Even more disheartening is the fact that I know that this is not an isolated case and though more time is spent teaching doctors basic communication skills it is clearly not enough. At a recent palliative care study day I sat through a video of a patient who was dying of oesophageal cancer. I had to leave before the end, not because I could not bear to watch it, but because I could not endure the arrogant, patronising, and insensitive comments uttered by my fellow general practitioner trainees.

Every day I ask myself if I should have been the one to tell my mother that she was dying, to explain that the treatment was futile, and wonder whether she would have chosen a different path if she had been given a choice. I thought at the time that I was her daughter not her doctor and it was not my job, yet not telling her put my sisters and me under an inordinate amount of strain. My mother never asked anyone about her prognosis, and I am not sure whether this was because she was too frightened or she felt unable to ask. The small amount of information she did receive was heavily biased toward treatment, fuelling her denial. She had total faith in her oncologist. Most doctors, myself included, are guilty of compassionate deceit at one time or another, and, however well intentioned this is, it is in direct conflict with the duties of any doctor registered with the General Medical Council.

As my mother lay dying, delirious, and unable to speak she started to scribble rambling words on a piece of paper. She wrote the word "prognosis?" I looked at the fear in her eyes and replied that she was "very, very ill." I wish that I had been brave enough to tell her the truth so that she could have said her goodbyes.

Eleanor Barkell
Email: ele@barkell.fsnet.co.uk


studentBMJ 2001;09:171-216 June ISSN 0966-6494