TALKING WITH PATIENTS

«  “Medical care flows through relationships. The spoken word is the most important tool in medicine.” (Eric Cassell)

«  “The doctors’ misconception is in thinking their usefulness is in medications.” (Norman Cousins, Anatomy of an Illness)

Symptom control demands that we come alongside the patient to meet his needs. Sometimes professionals say “How do I talk to dying patients?” which makes the incorrect assumption that dying persons are different from other persons.

It is usually more important to listen than to talk. (see Listening)

Getting close to a dying person reminds us that we too will die some day, which can raise uncomfortable questions about our beliefs and the direction of our own life. Patients are often far more realistic than we are. They are hoping for kindness, not miracles.

A commonly expressed fear is “What if the patient asks me a question I can’t answer?” This is one worry that prevents many professionals from approaching too closely. The answer is that we needn’t always give answers, and there may not be any.

When asked a difficult question the important principle is to ask it back (reflective listening). The most feared questions are “Is it cancer?” and “How long have I got?” It is surprising how often patients will answer these questions for themselves.

It is essential (especially initially) to reflect the question back:

• “Is that what you’ve been thinking?”

• “What do you feel about that?”

• “What have you been told already?”

• “How long are you hoping for?”

• “Why have you asked me that just now?”

It is never necessary to answer questions “blind”. Feelings are more important to patients than facts, and this approach helps meet the patients’ primary need to express feelings. When facts are clearly being requested, it is usually more comfortable and straightforward to discuss facts after the patient’s feelings are known.

One of the biggest mistakes in talking to patients is making assumptions about what they mean, how they feel and what they need. This can be avoided by asking questions. Combined with listening skills, questions are the key to identifying real needs.

«  Open questions open up communication.

Open questions starting with “Why ... ?”, “When ... ?”, “What ... ?”, “How ... ?” invite more than “Yes” or “No” answers. They encourage patients to express feelings.

For example:

• “What do you understand about your illness?”

• “What is the hardest part of this illness for you?”

• “How do you feel about changing the treatment?”

• “Why do you think you feel frightened?”

• “How do you see the future?”

• “How is this illness affecting your children?”

The immediate response may be “I don’t know.” but allowing time often leads on to other responses.

Closed questions starting with “Do you ... ?”, “Have you ... ?”, “Will you ... ?” can be answered with a “Yes” or “No”. They are useful occasionally to pinpoint particular areas.

For example:

• “Have you known anyone else with cancer?”

• “Are you still able to cuddle together?”

• “Is there anything else on your mind?”

• “Have you seen anyone die?”

• “Are you an active member of a church?”

Leading questions should be avoided. They close conversation down. (“You seem fine today – are you?” “You don’t need anything, do you?”)

«  There is more to conversation than waiting to talk. The words we use should be influenced by what has just been said. It is helpful to use the same words and phrases as the patient to improve communication and build empathy and trust.

Transactional analysis can be a helpful way of looking at professional patient relationships. All of us (even young children) can fluctuate between three ego states:

• “Parent” (protective)

• “Adult” (capable, logical)

• “Child” (in need of support)

An interaction between patient and carer may be adult-adult (logical discussion) or parent-child (reassuring, supporting, protecting). All human beings (patients included!) need adult-adult interactions at some times, and parent-child interactions at others.

It is helpful if professional carers can be aware of the patient’s need to be a “child” at times and to regress and receive encouragement, warmth and physical touch. Patients often have good reason to be irritable and miserable and carers need to make allowances for such behavior. At other times patients need to be “adult” and assume responsibilities again.

Professional carers also have needs and feelings. In a therapeutic relationship it can be all right to become a “child” occasionally. (“I feel tired today.”) This can bring balance and normality to what is, or should be, an adult-adult exchange most of the time.

Sometimes it is necessary to change the interaction from parent-child to adult-adult. For example, a patient who is inappropriately dependent for his degree of physical disability might be asked “What are your thoughts about getting home again?” This may re-focus the conversation on adult responsibilities. (Professional carers who are comfortable with traditional parent-child medical interactions may on occasion feel threatened by a patient who demands an adult-adult relationship.)

All patients, even children, have responsibilities. They are responsible, not for the disease, but for their own responses to having an illness.

First words are remembered best. First impressions are often difficult to reverse. If time is limited, first words are even more important. Compare “Hello Mrs. Jones, I’m Doctor Smith. I’ve come to spend a few minutes to talk with you about your illness “ (while preferably sitting down on a nearby chair) to “Hello, I can only spare a few minutes to talk about your illness.” Since first words and first impressions are so important, some preparation is essential before meeting new patients.

Good manners (proper introductions, use of correct names, courtesy, respect for social expectations, etc.) are essential.

Non-medical talk is important. To talk to someone about illness and dying without talking about life and living is a great affront. It has been shown that to discuss non-medical matters, even briefly, increases the chances of the patient liking you, which in turn increases the likelihood that the patient will trust you. Skillful “talkers” find a point of contact with each patient early in the conversation and build on it in subsequent conversations.

Be aware of the juxtaposition of words, which can convey information (just as avoiding a subject can convey information). Introducing a new topic of conversation may simply be due to bad listening, but it can convey an unintended message. For example, if a patient mentions weight loss and the doctor then asks a question about the family, the patient may assume (rightly or wrongly) that the doctor has gone from thinking about weight loss to thinking in terms of a poor prognosis and how it will affect the relatives.

Be aware of the power of words. In an emotionally charged situation, such as a first visit to see a hospice or palliative care doctor, words can take on an extraordinary power. (“He said he’d see me soon, I must be getting worse.”) Words can be “mis-taken” by patient or family to mean impending doom. Use words carefully and sparingly. Use kind, positive words rather than harsh or negative words whenever possible. (“Your strength is not so good today not “You are getting weaker.”) Choosing to use technical words carries a message. It is a way of signaling emotional distance.

Be encouraging. To encourage means “to fill with courage” and it is one hallmark of leadership. Emphasize and affirm a person’s strength when possible. (“Look how strong you have been up to now.”) A person’s role may finally be restricted to being a patient. (“You are a good patient — we enjoy looking after you.”) Telling of other patients’ successes and triumphs, small as well as large, can be encouraging and can reduce the sense of isolation.

Words can reframe a situation. Words not only describe reality but can also change a person’s perception of reality. (“I hadn’t seen it that way before.”) Words can re-label a situation to give it positive connotations. This can increase a person’s confidence and ability to cope.

“There is nothing good or bad, but thinking makes it so.” (William Shakespeare)

Use silence. As we talk to someone and tell him things, he is also telling himself things, if we allow time and space for this to happen. Learn to recognize the signs that a patient is dealing with important material (loss of facial expression, absence of blinking, immobility). New information may need to be integrated with current beliefs and memories if it is to bring about useful changes. “New” information may not come directly from another person but may be re-awakened from memory.

Miss J.W., a woman with advanced cancer, met a hospice nurse for the first time. She talked at some length about her feelings and her fears. The nurse said very little, but reflected back some of her comments and encouraged her to talk. A week later she surprised the nurse by saying "I’ve been thinking about what you said and I’ve decided to accept my illness."

Avoid giving advice when discussing feelings or reactions. Listen instead. The answers lie within the person. Advice is only helpful when discussing facts. (see Advice, Explanation, Reassurance)

Respect secrets. It is important to balance the need for emotional openness with the need for personal uniqueness. Patients are vulnerable and often confide their deepest secrets to their carers. These secrets must be respected because secrets can give a person strength. People who have survived prolonged torture often speak of focusing their thoughts on some secret information that only they knew about.

(Occasionally a patient may confide a harmful secret.  The question then arises whether the carer should keep this secret, or share it with other members of the team. The key issue is whether keeping the secret is likely to result in harm to other individuals. The principle of confidentiality is extremely important but cannot support keeping secrets which are harmful.)

Change insight into empathy. Sharing insights can be threatening. It is often better to use insights to increase empathy and build trust. For example, if you notice that a patient’s pain seems worse whenever his family visits, avoid pointing that out directly. It can be useful to make a comment such as “It is difficult to cope with pain especially when you have a lot of other pressures on you.” Such an observation can encourage the patient to discuss his real problems. 

An honest reappraisal of the situation can sometimes bring great relief.

Mrs. D.D., a woman of 60 with a brain tumor, had struggled for several weeks to get walking again, but her legs gradually became weaker. She and her husband became increasingly frustrated and depressed, having decided to try for her mobility above all else. One day the doctor explained to them “Times change, and times have changed for you; your legs simply don’t have the strength left now for you to walk any more.” Initial sadness was soon replaced by relief that the unsuccessful battle to walk was over. They started to have more realistic aims. She enjoyed going out for “walks” with her husband pushing her wheelchair.

Avoid colluding with unrealistic statements or aims.

Miss G.E., a woman of 62 with far advanced abdominal cancer said to a doctor “Well, I’m glad I’m getting better.” The doctor made a point of going back to the woman, sitting down and saying “I’m glad you are feeling better and the pain and sickness are gone, but we cannot make this tumor go away.” The woman smiled and accepted this statement. By avoiding collusion the doctor was able to continue visiting the woman every day, without feeling awkward or embarrassed, right up to the day she died, 10 days later.

Honest description of our own feelings can sometimes provide a breakthrough in communications.

Mr. R.H., a man of 58 with recurrent cancer of the larynx, seemed withdrawn and negative at every visit to the out- patient clinic of the hospice. On the fifth visit the doctor said “You always make me feel helpless and hopeless!” The man smiled and from that time communication was improved. The patient had finally succeeded in communicating the way he felt.

Anecdotes (true stories) can sometimes be a helpful way of gently and indirectly conveying an idea. Therapeutic suggestions can be passed on by means of an amusing story (perhaps with no obvious relevance at the time). This leaves the patient with new information or new possibilities, and allows time for change to be self-initiated. Anecdotes are usually memorable and non-threatening. They can be used to encourage or motivate a person. People often have in their own history the forgotten resources to overcome a problem. Anecdotes can stimulate memories and associations and can bring change in awareness or attitudes over a period of time.

Mr. R. C., a younger patient struggling to walk again with the help of a walking frame, was amused to hear about the efforts of the doctor’s one year old daughter, who was just learning to walk. The doctor mentioned this in conversation without thinking of the implications. From then on, the patient asked about the little girl and seemed keen to talk about her. Learning to walk had somehow been reframed by the anecdote as something normal, healthy, entertaining and fun.

Wrong or hurtful words are those spoken without kindness. It is usually the lack of kindness and not the words themselves that cause pain. Our words flow from our attitudes. Our attitude to the incurably ill often reveals our appraisal of our own self-worth.

Humor is important. It can be strengthening and unifying. Humor enables us to rise above a situation. It can be a way of mutually regressing to childhood, if only for a few moments, to allow a rest from powerful emotions. Humor also involves reflecting on experience. It helps to put things in perspective. It can be a way of allowing discussion of a painful or difficult problem. Humor can sometimes be used alternately with sadness, so the sadness is dealt with in small doses. (This technique can be especially useful when discussing sad things with children.) Laughter can allow us to ventilate and release intense feelings. (Many jokes are about otherwise taboo subjects.) There is truth in the saying “laughter is the best medicine”. Laughter can be therapeutic and can raise the pain threshold. Laughter, like play, brings a sense of shared experience and can convey friendliness and raise morale. Patients who are very ill continue to enjoy amusing events or stories and appreciate being told “You haven’t lost your sense of humor.” Sometimes as professionals we “cry with those who cry” but forget to “laugh with those who laugh”.

Important – Do not hide behind an insincere, hearty joviality. This is one way of avoiding the real issues and distancing ourselves from emotional pain. (“Come along now, it can’t be that bad, give me a smile!”) Similarly some patients display a persistent joviality to mask their anguish and carers must not be pulled into behaving the same way, which keeps all conversation superficial.

Who should talk to the patient? A sick person can relate in depth to only one or two carers. Repetitive questioning by members of different professional disciplines is tiring. This is one reason why good communication within the team is essential.

The context of talking. Most patients cope because of the support of family and friends. Words can be especially therapeutic in the context of a family group. Often the best way of supporting a patient is to support the family. (see Family Meetings, Talking with Families)

The author and publisher have taken precautions to ensure that the information in this book is error-free. However, readers must be guided by their own personal and professional standards of good practice in evaluating and applying recommendations made herein. The contents of this book represent the views and experience of the author, and not necessarily those of the publisher.