I was brought one evening in May, 1982, to the Christian Medical College, Vellore with a fracture in my right leg, which I sustained at Chennai, while riding pillion on a friend’s scooter. I was given first aid at the Madras Medical College and transferred to the emergency unit of CMC Vellore. The Orthopaedic specialist on call arranged for an X-ray and admitted me in the S ward. Late that evening, professor Selvapandian and his team came to examine me. Seeing my hugely swollen knee joint and the shortening of the leg due to the fracture, they decided to give me a posterior slab and apply traction. Dr. Selvapandian turned to me and said, ‘Sorry, M.C. you seem to have a fracture and some blood in the knee joint. We will offer you some pain relief and decide tomorrow about the treatment plan. We hope we can do something to fix it’.
The next morning, with more X-rays taken, Dr. Selvapandian and the team spent a long time discussing my condition, outside my room. There was gloom in their face, which made me feel that they too were anxious. After further clinical examination, Dr. Selvapandin, said, ’M.C. it is a bad fracture which extends into the joint with multiple pieces of the upper end of tibia. We will wait for the swelling to subside and then decide about the next step. We will keep you pain free as much as possible and I hope we can find a way forward’. Five days later, Dr. Selvapandian ordered for more X-rays and consulted each of his colleagues to make up a plan. When he came for the morning rounds, he said, ’you have made some progress, and we are hopeful. We will keep you on traction for the time being. It will hopefully bring the fractured pieces together’.
As I look back, I am amazed the way, Dr. Selvapandian ‘broke the news’ little by little, mixing facts with hope in a good balance. It was a bad fracture and residual disability of limited range of movement of the knee joint was almost certain. Every time he came for rounds in the first week, he conveyed optimism and caution. He spoke gently and thoughtfully. He even had a sense of humour. One day, seeing me siting up in the bed and reading the newspaper, Dr. Selvapandian said, ‘I hope you would not decide to stand up’. Everything, Anna and I needed to know medically, he conveyed on different occasions with sympathy, understanding assuring us of the best possible help. Each time he visited me, he would want to hear from me and wait for my questions or comments. During the next two months, till I was ready to go back home, Dr. Selvapandin communicated his keen interest in my full recovery.
I was already a consultant in Paediatrics for four years by then and had no idea of what it means to ‘break the news’. This was a first hand experience of some guidelines about ‘breaking the news’ of a medical condition, outcome of treatment, complications or adverse outcome. Let me list five guidelines for us to consider while ‘breaking the news’.
1.Content
2. Setting
3. Attitude
4.Dialogue
5. Difficulties
1.The CONTENT
In one sense, the phrase, ‘breaking the news’ is a misnomer. I wish, we use phrases such as, ‘briefing about an illness’ or ‘sharing the health status’, etc. The visual media has sensationalised the phrase, ‘breaking the news’ with stories and photos, which to me adds stress, anxiety and humiliation in most instances. The intent of ‘briefing about an illness’ is to bring comfort, clarity and direction to the patient and his or her relatives and reduce the level of fear and anxiety. Let me suggest that the phrase. ‘breaking the news’ has outlived its use and it is necessary for us to have another phrase to express its intent and content.
The content of what we intend to share with a patient or the family is central and need to be defined. Let me illustrate.
The content will vary according to the gravity of the illness and the immediate implications. When a patient is brought unconscious following a road traffic accident, there is some uncertainty about the course of illness and the outcome. The family needs to know about the prognosis and the several immediate measures needed to revive the patient. If Leukaemia is diagnosed in a young healthy asymptomatic adult, the family will be in a state of shock and grief, in which case, the facts about the diagnosis and its implications would need to be shared in stages and in portions that the family can comprehend and respond to. In such situations, grief counselling will be part of the initial briefing about an illness. If a person has a chronic illness such as Diabetes, the content will correspond to the extent to which the disease has progressed affecting different organs. If a new born is acutely ill, following the birth, the content of the discussion with the family would involve the immediate and distant implications of the illness. In such a situation, the family has many pressures weighing on them, such as mother’s health, care of other siblings at home, etc. that, briefing about the illness ought to be just enough for the family to be aware of the progress or decline in the health of the baby.
A senior doctor is the best person to define the content of this briefing, which in consultation with the team needs to be communicated in a manner the team decides to do. It is necessary that briefing about an illness is done by the designated member of the team, preferably a person with experience and full knowledge of the state of health of the pateint. The disclosure would elicit questions from the family, which would need appropriate and contextual responses. It is for this reason, it is better for this to be done by a person, who is involved in the decision making about the treatment plan of the patient.
There is sometimes a question, how much of details need to be included in the briefing! Some families need lot of details and others are content with just enough information. In some situations, families may have questions or confusion about the benefits of treatment. It is for this reason, at every stage of a new treatment plan, the consent of the family or the patient is needed.
There are clinical situations such as terminal illness, where the health care team has the responsibility to introduce the family to palliative care. There may be an unfortunate situation when a patient is brain dead, in which case, dialogue with the family would extent to include organ donation.
Having worked with families, who have children with neuro-developmental needs, for the last thirty-five years, the challenge that I often faced was to define the content of the briefing. When the parents come with their baby of few months of age with definite indications of neurological insult, they would have had previous consultations and investigations. They are often in a state of shock or denial. In such situations, I have found it more useful to listen to them and help them to pursue their thinking by directing them with relevant questions. It is easier if they find answers to their questions on their own. This form of briefing about an illness needs more time, patience and rapport with the family. The families may know the facts, but they would need an affirming setting to internalise them and respond to the challenges emotionally and responsibly.
The content is central while briefing about an illness, but the setting determines its effectiveness.
2. The setting
The ambience of any hospital is busyness, hurry, and anxiety. There are events happening all the time, such as a new patient arriving or someone leaving the ward, or someone suddenly becoming sick. Patients and relatives are witnesses to these happenings. The professionals are under pressure for time and have a long list of important things to do. It is in this context, we need to appreciate the need of a setting in which briefing about an illness can take place.
The physical setting of a quiet and airy room is a desirable facility. A room with good seating arrangements, with wall pictures and text can make the room homely. It is necessary to have low decibels of noise in the vicinity and in the room.
It is important to welcome the representatives of the family, two or three with whom confidential matters can be discussed. The privacy and rights of the patient need to be protected, and we want to avoid any lose talk about the patient and his or her illness. One or two professionals need to facilitate the conversation, out of which one person ought to be the senior member of the team. In some instances, especially when a patient is terminally ill or family is in distress, it is important to have a chaplain in the room to continue being in touch with the family and patient.
It is a good practice to begin by getting to know the members of the family and sensing their state of anxiety. Similarly the professionals need to disclose their identity. So the time of introduction is most valuable. Following this, the current state of the health of the patient needs to be presented in brief. It is good to let the family ask questions rather than give an exhaustive coverage of the treatment details. The details would get drowned in the emotional upheaval that the family may go through, while listening to all that is happening to the patient.
The setting is often emotionally charged as any information about the patient does arouse concern and anxiety. There has to be pauses in between the conversations to allow the family to take in and feel the issues discussed. Occasionally it may push a member of the family into a state of grief or anguish, which needs to be received with understanding and support.
It is one occasion, when the professionals need to show availability and openness without indicating rush or hurry. The pauses of silence need to be welcome as they are a means for emotional recovery and an opportunity for the family to come to terms with the reality.
It is good to have all the mobile phones in silent mode during this period. It is for this reason the briefing time has to be chosen when there is no anticipated interruption.
Occasionally it may be useful to show pictures of what one may want to explain about the illness. It is also necessary to avoid loading the occasion with too many details.
The closure of this time has to be planned in advance. Let the professionals decide before hand the time allotted for this briefing. Avoid prolonging the time, even if the family seems to seek for more time. It Is good to plan for another occasion to meet, as such times are intense in attention and listening and prolonging it can become demanding on the professionals. It s good to greet each other while closing, and agree to meet with the family again.
3. The Attitude
The briefing time about the illness is one occasion, when families would expect sympathy and understanding. One way of communicating it, is through the modulated tone of the voice, which befits the occasion. We can convey confidence and nearness to the family by synchronising the voice and the body language.
Families are comfortable if we can use non-technical language while communicating with them. It may be better to use the phrase ‘swelling all over the body’ rather than the phrase ana sarca while describing the clinical condition of a patient with liver or renal for heart failure. It is good to use short sentences with pauses in between to allow enough time for the family to take in and giving them permission to interrupt with questions if they so desire.
I remember one occasion, when a senior colleague called the family aside and bluntly told that their nine years old daughter was about to die and disappeared back into the ICU. It was an abrupt communication without a prelude of postlude. Later talking to me about the hospital experience after one month of the child’s demise, the family referred to this incident with much regret and remorse.
For some reason or other, people assume that doctors and nurses would be kind, courteous and thoughtful. This is expected to be our natural temperament. It is for this reason, families are most uncomfortable when we get angry, shout, or show arrogance. A hospital is also a place of hospitality, which calls for utmost understanding of the needs and aspirations of people, who come for medical attention.
Let me suggest that as health care professionals, we are engaged in knowledge pursuit. This privilege can make some of us self-sufficient and condescending in our attitude. ‘I am the doctor; I know what I am doing; you listen to what I am saying’. This attitude towards patients and families would hurt them.
Instead, if we have an enquiring and considerate attitude, we would be able to keep in touch with the families and patients during the time of their need. They would turn to us to confide and to find direction in their lives when they are overcome by sorrow or bereavement. A doctor or a nurse is a companion to patients and families and not just a provider of treatment.
Most patients and families would need life style changes and order in their lives economically, socially and spiritually when they confront a serious illness in the family. The time of briefing about an illness is the staring point to build relationships.
A few weeks back when I was admitted to a hospital for a major surgery, the senior surgeon introduced us to his team and mentioned about what would happen during and after the surgery. I thought for a moment, that he almost trivialized my medical condition by speaking about it as just another ordinary illness, in an attempt to take away my fear and anxiety about the surgery. Looking back, I realized that his welcome, approach and friendly ambience helped me to look forward to the coming weeks with ease and expectation.
The professionals sometimes deliberately keep a distance from the patient and family emotionally, so as to safeguard their professional status. This contradicts the very character of health care, when we are supposed to engage in alleviating suffering and offering wellbeing, ‘physically, emotionally, socially and spiritually’. There is a humane dimension to health care, about which late Dr. K. N. Nambudiripad, professor of neurosurgery and Director of the Christian Medical college, Ludhiana used to refer to as ‘compassion - an adjunct to therapeutics’. I believe that the role of the mission hospitals is to demonstrate this dimension in practice. A consultant working in CMC Vellore mentioned to me the other day, that, the dignity and care offered to those admitted with AIDS is so touching and affirming that ‘I wish we could do the same to all the other patients who come to us’.
We are constantly engaged in communicating good or bad news in health care practice. How we convey that is the question at stake! One family was overtaken with all the anxiety associated with cancer, when the young mother was diagnosed with breast cancer. During the course of stay in the hospital stay, the patient and the family felt comforted by hope and prospects of recovery, because the attitude of the professionals conveyed that abundantly. Each conversation and contact with the family ought to become an up building and path-finding experience for the family.
4. The Dialogue
Every communication becomes useful if it creates opportunities for dialogue. The briefing about an illness to the family is an important occasion to prepare them to make several decisions. There are treatment options; there is the economics of the treatment; a choice of the hospital for treatment; outcome of the treatment; and for some families, the option may be not to choose any radical treatment, but only palliative care.
One of the rights of a patient, according to the Geneva Convention is, autonomy and right to choose. Even in an emergency situation, the relatives are bestowed with the right to choose the nature and the extent of treatment, for which a detailed presentation of facts and implications need to be made to the family. It would appear to be easier, if the medical team, ‘who know best’ was the sole decision makers! However, with the Internet offering all kinds of information, most families would have come with some thoughts and choices. It is for this reason, all decision making is arrived at, after dialogue with families. The prescriptive approach we are more comfortable with, in decision-making, is non-conducive to developing rapport with patient and families.
One family with their twelve-year daughter came for consultation for intractable seizure because of which, she discontinued attending the school for the last six months. They have been to a few well known centres and had brought reports, treatment schedule and multiple prescriptions of medicines. I refrained from looking at them till I heard their story. Their story of 11 years of coping with the frequently occurring seizures in their daughter did take a toll emotionally, financially and socially. While I requested my psychology colleague to have conversation with the girl, I allowed the family to continue with the narration of their story. After one hour, they were still ventilating their disappointments with doctors, hospitals and teachers who according to them had not supported them during their difficult times. The girl narrated her story of loneliness, tiredness with treatment and emotional weariness over the reduced social life she lives at home. For fear of having a convulsion, she cannot accompany her family for shopping.
What the family needed was for someone to listen and understand their struggles. I offered them another time to discuss about the treatment options. The parents and the daughter looked comfortable to return for further discussion. I realize from several such experiences, it is necessary for me to create time to listen. I find, when we listen, we get to know many deeper issues, which are linked to the illness, treatment or long-term implications. When we listen, we affirm the family and open the door of dialogue, including searching for options that they had hitherto overlooked. In case of this family, at the end of the third consultation, they seemed ready to look at the option of epilepsy surgery. Although this was already told to them, five years back by different consultants, they ignored it. I heard recently that she is free of convulsions after the surgery.
I have found it valuable to involve my colleagues in an active way, even to delegate the responsibility of continuing the dialogue. It is when, conversations take place in different settings and with different people, we can capture the whole picture to guide the family forward.
When a patient is In critical care, or in an emergency situation, or facing complications, the dialogue will often be brief. But while planning for organ transplant, cancer therapy, assisted reproduction, HIV counselling, etc. a detailed dialogue is central and crucial for optimum therapeutic outcome.
5. The difficulties
Most professionals may not have had any format training in briefing the family about an illness. This is a challenging issue in itself. Even now, this has not become part of the formal medical training. Most doctors pick up some precepts and practice from what they see and hear from their seniors colleagues.
We are still not conditioned to respect the autonomy of the patients adequately. This is because, we are not introduced adequately to the foundations of medical ethics, during our undergraduate or postgraduate training period. The professionals seem to exert authority over their patients by virtue of their skills and position.
Engaging the family or the patient for briefing about an illness consumes time, attention and need openness to revise our approach based on the choice a family may make. Some doctors convey disinterest to pursue a treatment protocol different from what they think as the best. This adds stress to the families and causes strained relationships between families and the professional team.
Most hospitals do not have designated space for briefing the family about an illness or to offer counselling to the family or to prepare them for treatment, discuss options or support them during their bereavement. It has not yet become one station of service in the care pathway we offer to patients.
We are in a fast changing scene in health care in India. There are commercial interests in health care. The Insurance sector is breaking the service pathways into tangible components, each of which is charged separately. The consumer forum is active to find out if there was neglect or omission in the service provided to a patient. The professionals are attempting more risky surgery or interventions for treating complicated illnesses. All of these and the increasing consciousness the public has about the rights of a patient, should make the professionals consider how they are using ‘briefing about illness’ as an opportunity to build rapport with patients and families.
It is necessary to conduct training programmes to help the health care professionals in the art of ‘briefing about an illness’. This needs to be introduced to the interns and postgraduate trainees at the beginning of their programme with refresher training programme during their training period. The consultants and senior members of the team would need advanced training to help them to be equipped to face difficult situations.
A hospital is a place to communicate wellness to patients and families. Let it be so always!
M.C.Mathew (text and photo)
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