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Communicate. Care. Cure.

Edited by

Dr Alexander Thomas & Dr Nagesh Rao

Recent studies have shawn that healthcare organisations lose substantial amounts of money annually as a result of ineffective ond inefficient communication. This is not surprising, as the importance of communication in heolthcare has not lorgely been recognised. A result of this is that heolthcare-providers ore not given formal troining in effective communication. This book argues, therefore, that addressing communication issues among the various stakeholders in a hospital- the patient, the patient's family, healthcare-providers, healthcare administrators and support staff - is the key to solving systemic problems. The chapters and illustrations in Communicate, Care, Cure are contributed by physicians, nurses, a pharmacist, administrators and communication experts. The book is replete with typical real-life scenarios thot readers can easily identify with. It aims to increase awareness abaut the significance of communication in healthcare and will serve as a guide to effective and efficient communication that keeps in mind the interests of the most important stakeholder in healthcare - the patient. "A diagnostic, prescriptive and prognostic compendium on the role of communication and care for cure well-written and well-researched."
Dr Narotlam Puri Chairman, Notional Accreditation Boord for hospitals and Heolthcare Providers

"The book walks the walk and talks the talk of health communication. A must-read, most practical."
Major General J.K. Grewal, VSM Former Additional Director-Generol, Military Nursing Service, Armed Forces Medical Services of Indio

"Medicine is a science, but the practice of medicine is on art. The art involves effective communication, concern, compassion and empathy for the patient. This book presents these oft overlooked aspects concisely, elegantly and readably. This book should be read and practised by doctors, nurses and healthcare managers alike."
Dr K.K. Talwar Chairman, Boord of Governors, Medical Council of Indio

"Effective, ethical and empathetic healthcare requires ... competence, commitment, concern, compassion, courtesy and, very importantly, communication, which ... is usually the most deficient component, undermining the other elements of care and eroding the patient's morale. This book not only highlights the need for strengthening this vitollink ... but also tells us how to do it best.. .."
K. Srinath Reddy President, Public Health Foundation of Indio and President, Notional Boord of Examinations

"My professional colleagues need this book desperately .... Doctors especially, don't care for philosophies: we want straighrlorward, direct answers. This is precisely how the book has been written .... This book like a Google map for a society that has lost direction."
From the Foreword by Dr Devi Prasad Shetly

Bangalore Baptist Hospital Bellary Road, Hebbal Bengaluru 560024, India
ISBN 978-93-5104-106-1



Communicate. Care. Cure.

A Guide to Healthcare Communication

Edited by Alexander Thomas and Nagesh Rao

Bangalore Baptist Hospital Bangalore

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Bangalore Baptist Hospital 2012 Published 2012 by Bangalore Baptist Hospital Bellary Road, Hebbal Bangalore 560024, Karnataka

PUBLISHERS NOTE Unless used autobiographically, all references to names, characters, places, incidents and organisations in this book are either the products of the authors imagination or are used fictitiously. Any resemblance to actual events, locales or persons, living or dead, is entirely coincidental. All rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior permission of the publishers. Manuscript editing: S. Sahu and Meena Bunyan Cover design and illustrations and caricatures inside the book: Pravin Mishra Cover photo: Uday Kumar The authors, editors and illustrator assert the moral right to be identified as the authors of this work Typeset in Palatino and Helvetica Neue by George Korah Primalogue Publishing Media Printed and bound by Brilliant Printers Bangalore

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Foreword Preface Prologue Introduction Chapter 1: First Impressions Matter
Creating Memorable Experiences for Patients

xiii xvii 1 5 11 19 33 43 61 71 83 95

Chapter 2: Verbal Communication Styles

The Role of Assertiveness in Healthcare Communication

Chapter 3: Actions Speak Louder than Words

Nonverbal Communication

Chapter 4: Listening with Undivided Attention

An Effective Prescription for Healing

Chapter 5: Bridging the Gap Chapter 6: Tread with Care Chapter 7: Sorry Works

Removing Communication Barriers in Hospital Settings Breaking Bad News to Patients, Their Family and Relatives The Disclosure of medical errors

Chapter 8: Knowing Where to Draw the Line

What Constitutes Unacceptable Communication

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Chapter 9: In the Spirit of Please and Thank You Chapter 10: Hospital Talk Epilogue References About the Authors

107 125 139 143 149

Using Courtesy and Etiquette in Healthcare Communication How Communication Flows in Healthcare Organisations

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Preface Dr Vikram Kashyap, Dr Olinda Timms and Dr Glory Alexander towards the final medical editing. We are also grateful to S. Sahu for his diligence, patience and painstaking efforts in bringing this book together. His invaluable editorial inputs transformed our words and ensured uniformity in style and easy reading. We would like to thank Dr Manju Chacko and staff from the Quality Department for all their efforts. We thank Kriti Thakkar, a student from MICA, who helped us in selecting the title of the book. We thank Prof Pravin Mishra for his illustrations, cover design and caricatures, which inject vitality into the book and make the respective authors perspectives vivid. We are indebted to Dr Devi Shetty, Padmabhushan awardee, worldrenowned cardiac surgeon and a pioneer in low-cost, quality healthcare delivery, for penning his heartfelt thoughts and inspiring foreword in the midst of a busy and hectic schedule. The value of the book comes from the extensive healthcare industry experience of its authors. This committed group of people spent long hours in addition to their hectic schedules in an effort to improve and enhance the patient experience in hospitals. It is our hope that this book on healthcare communication will be of benefit to the ultimate receivers the patients. Alexander Thomas and Nagesh Rao


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Breaking Bad News to Patients, Their Family and Relatives

Rajnish Samal

Tread with Care

Chapter 6

The doctor said: this-and-that indicates that this-and-that is wrong with you, but if an analysis of this-and-that does not confirm our diagnosis, we must suspect you of having this-and-that, then... and so on. There was only one question Ivan Ilyich wanted answered: Was his condition dangerous or not? But the doctor ignored that question as irrelevant. Leo Tolstoy in The Death of Ivan Ilyich

ny information that can have serious and adverse impact on an individuals life and future and also have indirect bearing on the immediate family and society at large can be considered as being bad news.1 Breaking bad news forms a necessary part of patient-professional caregiver communication. Done sensitively, it develops a constructive relationship and a helping partnership between the patient, the relatives and the healthcare-provider. In the medical profession, there is no way we can avoid this task. The need to deliver bad news exists in all clinical specialities and settings diagnosis, explaining disease progression, change in functional status of an individual, response to therapy, poor prognosis of a disease and declaration of death. In the attempt to learn the skills of communication, breaking bad news is a combination of active listening, using gestures and body language and showing empathy, strengthened with years of professional experience in clinical settings. The American poet Walt Whitman, in Song of Myself, says, I do not ask the wounded person how he feels; I myself become the wounded person. While responding to the patients emotions and going into a lot of distressing detail, one

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Communicate. Care. Cure. is entering a most private place in the patients world and witnessing their psychological vulnerability. Delivering bad news affects not only the receiver of the bad news deeply but may also significantly affect the messenger. Breaking bad news has an impact on everyone involved the patient, the relatives, the physician and other healthcare professionals. Therefore, it is not for the inarticulate, unskilled healthcare professional to blunder their way through such an important conversation, possibly seriously traumatising the patient. The skill of delivering bad news humanely can, however, be learnt, and its component skills transferred from an experienced senior professional to an unskilled junior colleague. It is absolutely necessary for the healthcare professional to be prepared before proceeding to deliver bad news. It is recommended that a mature, experienced senior be allocated the responsibility, with a junior colleague accompanying the senior to the interview, for practical exposure and training. However, should a suitable person be unavailable, a team of physicians could be collectively designated to deliver the news. The senior member should be capable of communicating well with the patient and relatives and should go through the following phases: Discuss the disease, diagnosis, prognosis and course of the illness Get the patient and relatives involved, to discuss their understanding and perception of the disease and how that might affect them Explore the patients reaction to the bad news and determine to what extent the patient wishes to participate in decision-making Discuss the treatment plan with the patient and guide them regarding how to adhere to the plan of therapy

Offer and discuss counselling/psychotherapy or other ongoing support for the patient and relatives2

Disclosure of information
In communicating bad news, the healthcare-provider, the patient and the relatives should be in agreement regarding the nature of the information to be disclosed. An adult patient has the right to know all details. Also, every patient also has the right to expect that no details will be falsified. Adult patients may also not wish to share any details with family and friends. Given these, the relatives may believe 72

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Tread with Care

that certain aspects of the news should be withheld from the patient. In fact, it is advisable to understand the fears the relatives have, and their reasons for this, regarding divulging bad news to the patient. The situation must thus be duly considered and discussed, if the patient is a normal adult. In the case of minor, mentally deranged or seriously sick patients, the views of the guardians would apply. Enlisting the support of the family and relatives of the patient almost always makes matters easier for the healthcare-provider, humane and just for all concerned and makes for continued family support and caregiving. One must also keep in mind country-specific legislation governing disclosure. In certain countries, there are guidelines regarding disclosure of content to the patient and relatives. In other countries, it is illegal to hide from the patient any news regarding diagnosis, treatment and prognosis. In the following two typical scenarios, lets look at a few questions for which the answers go beyond clinical correctness. Rakesh has moved jobs to meet the growing needs of his family. He is good at his work but the sole breadwinner in the family. In the past few months, Rakesh has had regular stomach upsets. Recently, he has noticed that his stool is of a different colour and that it sometimes has fresh blood. He hasnt told his wife yet about this but has privately decided to go for a check-up. On evaluation, the doctor advises blood 73

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Communicate. Care. Cure. tests and endoscopic tests, which Rakesh undergoes. He is shocked when the doctor tells him that he has seen a mass in the colon which, on tissue analysis, reveals malignancy. The doctor also tells Rakesh that he will need surgery and medical treatment thereafter. As he hears the doctors diagnosis, Rakesh gapes in disbelief. He asks the doctor to divulge the matter to neither his family nor his employer. In the case above, the doctor is certainly bound by Rakeshs decision regarding confidentiality. But are there other factors to consider that would govern the doctors agreement to withhold information about Rakesh from his family? Mr Gupta leads a retired life. Over the past month, he has had indigestion, vomiting and distension of the abdomen. Now he has also developed jaundice, for which he is admitted for evaluation. The tests ultrasound, CT scan, endoscopy, biopsy and blood tests are taking painstakingly long, making him edgy and irritable. Mr Gupta is still waiting for some of the reports. His 28-year-old son, Akash, is clearly worried, too, and Mr Gupta wonders if Akash knows about some reports that he doesnt. Are they hiding anything from me? he thinks. Should the physician use his discretion in deciding who should get what news and how much or must it be only the patient and the relatives who decide about the divulging of the news?

The formal process of breaking bad news

The process of breaking bad news can be divided into four stages, preparation, performance, palliation and planning. Preparation. Before breaking bad news, one must prepare oneself, the place and the patient. The physician. The physician has a dual role: to be professional while being sympathetic to the patient. Therefore, before setting out to disclose information about the illness, the doctor must be well-informed about the disease and its prognosis, course and treatment. Because the news can be shattering for the patient and the family, it is best if they hear it from a senior doctor who has been attending to the patient. It is vital for the doctor to meet the patient and relatives as soon as possible, so that they are not kept waiting in suspense. Breaking the news earlier rather than later in the day may also help the doctor be at his best 74

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Tread with Care

Figure: 4 Stages in the process of breaking bad news energy levels. The physician must also be prepared to spend sufficient uninterrupted and unhurried quality time with the patient and the family, neither letting his thoughts wander nor losing focus. During the interview, interruptions and distractions should be avoided. To achieve this, the senior doctor could make prior arrangements for a colleague to take all his calls so that a ringing pager or cell phone does not cause interruptions and the conversation is as calm and unhurried as possible. The doctor also needs to guard against succumbing to misgivings about his own inadequacy, helplessness and fear of hurting the patient. The place. The place of the interview is a key factor. As far as possible, such an interview should not be held in a hallway, where there is neither privacy nor confidentiality but where, on the contrary, distractions and hindrances abound. Even a ward is best avoided. Ideally, the discussion should take place in a room set apart for the purpose, which is quiet and affords maximum privacy. A secluded room, with enough space for the physician, a colleague, the patient and a few relatives would suffice. Adequate seating arrangements, including the provision of appropriate comfort for the patient, are essential. This not only helps the healthcareprovider to sit in close proximity to the patient, but also provides room for gestures and nonverbal communication such as an empathetic touch on the shoulder of the patient. A glass of water and a box of face tissues help considerably, as such little comforts often mean a great deal to the patient 75

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Communicate. Care. Cure. and the immediate family, who are never really prepared to receive the bad news. However, when a suitable place is just not available, shift the patient to a corner bed in the ward and cordon it off with curtains. If even that option does not exist, try having a private conversation in a corner of the out-patient clinic. The patient. The patient also plays a pivotal role in making the conversation a success. Firstly, for the doctor to be able to get the message across, the patient should be in a sufficiently fit state to comprehend the information being given. It is worth asking the patient if they would like certain relatives to be present during the conversation. The patient may decline to receive any information, requesting one or more relatives to receive the news instead. This should be respected and, only over time, with permission from the patient, should the doctor share information gradually with the patient.

Performance. This stage concerns the actual event of breaking the bad news. Delivering bad news is unduly challenging, demanding and upsetting if any of the parties concerned is improperly or insufficiently prepared. It is wise, therefore, to attend to the mechanics of sharing bad news. All parties should be introduced to one another from the outset. 76

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Tread with Care Allow only a restricted number of people to sit in on the meetings, whether from the patients or the care-providers side, and try to ensure that the same individuals are present for future discussions also. The patient and relatives expect the news to be shared with them with directness and concern. The doctor should use language that is simple, sensitive and straightforward, free from jargon and advanced medical terminology (e.g. piece of tissue for examination instead of biopsy, spread instead of metastasis, etc). Flow charts, diagrams and pictures can be very useful in explaining and reinforcing the medical information to be conveyed. Wherever advisable and possible, use audiovisual inputs also. Although the doctor should provide as much (rather than as little) information as possible, care should be taken to not cause information overload on the patient or the family. Instead, a series of information capsules may be planned. While sharing the news, deliver it with appropriate pauses to ensure that the information is sinking in. Ask questions, particularly during the initial phase of the conversation, to elicit the level of understanding and understand the emotions evoked in the patient and relatives. Be prepared to repeat yourself patiently. The doctor should be on the lookout for the patient expressing emotions such as gloom, shock, grief, guilt, self-reproach, desolation and denial. An understanding of the gestures and body language of the patient and the relatives is also essential and informative. In response, the doctor may make empathetic statements such as: I can see how upsetting this is for you. I know this is not good news for you. Im sorry to have to tell you this. This is very difficult for me also.

Palliation. Palliation has to do with furnishing supportive responses to patients when they react to the bad news being broken to them. Being involved with the patient helps the physician to take a major leap in strengthening trust and preparing the patient for further treatment. After getting the bad news, the patient may go through one or more phases of intense, deep emotion. Patients may evince a fight/flight response, including displaying extreme 77

I can help you share it with your parents, if you wish.3

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Communicate. Care. Cure.

aggression, distress or withdrawal, refusing to go ahead with any more discussion and repeatedly asking questions such as Why is this happening to me? While explaining that these emotions are normal and appropriate to experience, the doctor may ask the patient to describe their feelings. Holding the hand of the patient, gently touching their shoulder in reassurance or engaging in compassionate eye contact play a major role in expressing empathy, acknowledging the pain and offering comfort and encouragement. Pausing at strategic points during the discussion allows the patient to comprehend and assimilate the information shared and prepare questions for the next phase. Empathising and active listening help the patient give vent to their thoughts and feelings. Periods of silence, too, are important. They allow one to get in touch with ones emotions and particularly help the doctor to enter the patients world with deeper understanding. During these periods of silence, the healthcare-provider should observe what the patient is doing, hear what they are saying, try to feel what they feel and sense what they would like to but cannot verbalise. By using the technique of silence, the care-provider helps the patient to work through their emotional state. 78

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Tread with Care Planning. This phase allows the planning of treatment and continued care for the patient. Planning forms the final phase of the process of breaking bad news to a patient and should commence after the patient and relatives have had the needed time to compose themselves and collect their thoughts (the sign that they have assimilated the news). At this point, check for any unanswered questions the patient and relatives might still have, and address them. Thereafter, proceed with the management of the illness, establishing a step-by-step plan that includes appropriate referrals, gathering additional information or performing further tests. If the patient has any immediate symptoms, then treatment should be administered and a plan made for further therapy. This may include emotional and practical support from family, friends, a social worker, a spiritual counsellor, a peer support group, a professional therapist, a hospice, a home health agency, etc. It reassures the patient that they are not being abandoned and that a multidisciplinary team will be actively engaged with them on an ongoing basis. The physician should maintain accurate records and document the salient features of the interview, for future reference the content of the interview, the attitudes and behaviours of the patient and relatives, any untoward or exceptional events, future plans, etc. It is important to convey to the patient and the family that the physician or the medical team are close at hand. A system of regular follow-up appointments must also be set up. The real challenge which the physician faces in delivering bad news is in disclosing news of death. The culmination and climax of the delivery of bad news actually begins in the face of death. It can be in various situations explaining to the patient or the relatives that death is imminent, explaining about a death which has suddenly happened or a death which was expected.

Conveying news about death

Sometimes, the most challenging disclosure of bad news concerns death and dying. For the healthcare-provider, it is the supreme test of how well the physician has internalised and practised the four stages of the process of breaking bad news because it results in ultimate shock. 79

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I am reminded of a fragment from words inscribed reportedly on an Irish grave: Death leaves a heartache no one can heal.... In breaking the news about death, the characteristics, principles and phases discussed in this chapter apply. However, seven points must be kept uppermost in mind: Sensitive communication. No specific timelines of involvement may be decided between the physician and the patient and relatives. It may take days, weeks or months for the medical team to bring the patient and relatives to a place from where they can cope with the inexorable realities. Unhurried interaction is essential. The use of silence to acknowledge loss cannot be overemphasised. When patients are conscious and of sound mind it is good to ask them if they have any wishes they would like fulfilled. Stress management. The event (i.e. the disclosure) is often extremely contrary to normal human expectation. Patients and relatives are thrown into acute emotional and physical crises, as a result. Healthcareproviders need to manage the acute stress responses of the affected persons, including their own reactions. Collaborative care. While, on many counts, the doctors presence and medical care from the institution will be needed, the family and relatives should be entrusted with taking charge of permissible palliative measures for the patient, e.g. administering pain-killers, treating bed sores, feeding, shaving, sponging, putting on diapers, etc. This 80

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Tread with Care can bring empowerment and a sense of responsibility and belonging between patient and caregiver and create a lasting bond between the patients family circle and the healthcare organisation. Signs of imminence. The signs of imminent death must be conveyed clearly to all concerned. Medical practice suggests that the doctor waits for a couple of minutes before conveying the news simply, in straightforward language, using no technical jargon, after which one stays for several minutes with the family, taking care not to leave the room immediately. Social and religious rituals. Patient, relatives and healthcare staff should address the need for social and religious preparations for the one who is dying. Stigmatisation. On occasion, stigma is associated with death, and this, too, requires wisdom, sensitivity and tact on the part of the healthcare staff to handle. Typical situations include AIDS deaths, suicides and culpable or accidental deaths. For the family, shame, guilt and anger are added to shock, grief, denial, confusion and helplessness. It is therefore crucial that healthcare-providers take a lead role in offering care and support in such situations. Counselling. Help from a personal counsellor should be at hand to guide the patient and relatives through this final journey. Although not necessary in every case, counselling support goes a long way to help the affected in coming to terms with permanent, ultimate loss.

This chapter has explored the seriousness, sensitivities and necessity of breaking bad news in healthcare contexts to patients and their family and relatives. It has shown, however, that the ability to break bad news in a professional but humane manner regarding health issues is a skill that may be learnt. Accordingly, the chapter suggests guidelines and pointers to healthcare-providers on how they may break bad news and recommends a number of practical steps, organised in four phases preparation, performance, palliation and planning.

Take-home message
When we can do nothing to make a material difference to someones pain, we can offer our presence. 81

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