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Communicating With The Dying

Be Available

Enter Gently

Set The Stage

Play It By Ear

Accept Denial

Offer Honesty

Leave Gracefully

Return

Drain Your Pool

Work Together

Communicating with the Dying

The aspects of communication discussed in this chapter are not by any means unique to people thought to be approaching death. However, I will be taking that group of people as an example, in order to make some points about communication with patients in a hospital, hospice or sickroom.

I have chosen this topic partly because it represents something that I have spent a great deal of time doing, and partly because it illustrates many aspects of clinical communication which are often found to be difficult, even by experienced clinicians.

In this chapter, I will suggest some simple ways of enhancing the helping interview in the context of serious or terminal illness. The ideas I suggest are not original, nor are they particularly exciting. Rather, they are included on the basis of their perceived value, during my years as a hospice physician.

These ideas are certainly not a substitute for communication and counselling skills. Nor are they a substitute for the personal qualities discussed under Non-verbal Communication. They are simply a framework, on which to build an overall approach to the patient or client. Within that framework, you will (as usual) employ "everything you know and everything you are".

Be Available

This may seem a little obvious, but many obvious things are important in this context. Two sorts of availability are needed. The first is the logistical one, which, when absent, prevents any useful communication between dying patients and their carers. Getting past this hurdle may involve negotiating a maze of switchboards, intermediaries and frustrating delays.

At the end of that obstacle course, there is still the matter of the "next available appointment". In this context, too much delay, or sometimes any delay, can have the same effect as refusing to see the patient at all. Even if the patient is still alive, their ability to communicate effectively may be severely impaired.

The second sort of availability is the ability and willingness to remain fully aware and engaged while end of life issues are aired, rather than hiding behind any of a multitude of available defensive tactics. It may be very tempting, for example, to listen with no sense of involvement, to respond with purely clinical information, or to "answer" unanswerable questions with a standard reply from a stock of platitudes.

This second aspect of availability is, of course, part of the listener orientation, which was discussed previously under Active Listening. Of particular relevance in this context are the listener's own feelings about end of life issues, and a willingness to join as a full participant in whatever conversation the patient wishes to have.

Any unresolved painful emotions relating to illness and death which the listener carries, may cause incongruent non-verbal outputs, as previously discussed. Therefore, previous and ongoing work on the resolution of painful feelings is even more important in this context than are well-honed communication skills. This is discussed a little later, under Drain Your Pool.

Enter Gently

Most patients will prefer to be wearing something other than a bedpan when they greet you. The simple courtesy and respect that are considered important in everyday life can all too easily be forgotten in a hospital setting. At the very least, a verbal warning of your imminent appearance is usually a good idea.

Where possible, it is best to be introduced at your first meeting by someone the patient already knows. If this is not possible, at least make sure that your visit is expected. Then introduce yourself fully, including your role and your reason for being there, and ask whether it is a good time to talk. If there is any hesitation, gentle negotiation is necessary.

As always, the listener orientation mentioned previously is essential to a gentle entry into the interview itself. Most patients will have had ample opportunity to become quite allergic to every possible type of insensitive behaviour, and of course many will have their own small (or large) volcano of "unfinished business" smoking away in the background.

It is sometimes said that talking about sensitive issues is like walking on eggshells. That analogy is not suitable for the whole of the process, but it does suggest one useful practice. Testing proposed statements and actions in one's own imagination, to see whether they could conceivably give offence, can often help to smooth the path to a good rapport.

Set the Stage

Some of this may be best done in advance, but some will always need to be done as you go along. First, see that the patient is physically comfortable. If significant pain or other symptoms are present, then their management must take priority. The interview can wait.

Ask whether the patient would like curtains drawn around the bed – or perhaps would prefer a different venue altogether. Reduce ambient noise as far as possible (but ask the patient before closing windows or doors, as the subjective sense of ample available air is of symptomatic benefit to many breathless patients).[1] Make sure there is a box of tissues handy! Finally, in most cases, you will have to decide where to sit.

It is preferable to have your eyes at about the same height as those of the patient, and to be close enough to make physical contact if appropriate – but not close enough to seem intrusive. If you are going to sit on the bed, make very sure that you do not land on any part of the patient, or any attached devices!

As soon as possible, find out what name the patient prefers to be called by, and what name they prefer to call you by. This might be negotiated during the introductions, or left until some rapport has developed, depending on other aspects of the situation. The preferred names are not always equally informal. In Australia, quite a few patients prefer to call a doctor either "doctor" or "doc", and a nurse either "sister" or "nurse", while preferring to be addressed by their first name or nickname.

There are many other possible ways in which the "stage" may need to be set, and some of these relate to local rather than general conditions. By paying careful attention, you will soon notice most of the factors which are detrimental to rapport, and they can then be addressed. Then, on future occasions, it may be possible to address them in advance.

Play it by Ear

You probably know a great deal about communication, and perhaps also about counselling, but this knowledge must not intrude on the natural flow of the conversation. There will be things you want to achieve, but it is best to achieve them without fragmenting the interview. I'm sure you won't talk too much, but don't talk too little, either. Listening may be your main task, but sometimes the patient will ask for information. In all of this, it is necessary to be quickly responsive to the ever-changing situation.

A request for information may not be direct, so careful attention to the subtleties of meaning is necessary. Your own language should usually be simple and direct, but symbolic, poetic or oblique statements are sometimes appropriate in response to a similar message from the patient.

Alternatively, accepting a symbolic statement as needing no explanation may be sufficient. For example, if a patient said "I don't think I'll buy any more lottery tickets" it might be sufficient to nod, make eye contact and say "OK". In some cases, this might lead to a more direct discussion of diagnosis and prognosis. In other cases, it might go no further.

Above all, be flexible. You may be there for a minute, or an hour (the latter is not often feasible, but the subjective sense of "plenty of time" may be). You may talk about feelings, facts, symptom control, trivia – indeed, literally anything. You may seem to be wasting your time at one moment, and find yourself swimming in a flood of significant content the next. You may be perfectly relaxed at one moment, and perhaps feel quite uncomfortable a moment later.

The cause of such discomfort needs attention, but there will not be much opportunity for that during the interview. In most cases, it is sufficient to note it at the time, and think about it later. On the other hand, if a personal issue is interfering with your ability to continue the interview, it is sometimes better to find a graceful way to withdraw and reschedule.

Essentially, "playing it by ear" just means responding to whatever happens next. There is no script, no director and no audience. Well, there might be an unofficial audience – on the other side of the bed curtains. People don't very often join in conversations conducted behind hospital bed curtains, but they most certainly do listen. Consequently, if confidential information needs to be discussed, "playing it by ear" would include "setting the stage" at a different location.

Accept Denial

Denial of the unwanted reality tends to occur whenever ill fortune strikes, and it is especially likely when the near future includes one's own impending death, or the death of a loved one. I will also mention a related phenomenon, the "conspiracy of silence", later on under this heading.

Denial is a normal response, though not usually a permanent one. It may seem a bit surprising, when considered by a healthy person with healthy loved ones, but it is simply one aspect of grieving, and needs to be accepted in that light.

Denial may vary from a totally unconscious (and totally impregnable) repression of the unwanted information, right through to a slight tendency to minimise the seriousness of the situation. There is nothing more foolish than battering at the gates of the former. The latter, on the other hand, is sometimes little more than a ripple on the surface of the conversation.

All degrees of denial between those two extremes exist, and the degree usually varies, in either direction, over time. Such different, and changing, degrees of denial may also be found in different members of the patient's family and circle of friends.

The "conspiracy of silence" is a different, but related, phenomenon, involving refusal to share the truth even when it is wanted. In this case, one or more groups "protect" one or more other groups, including (usually) the patient, from the alleged disaster of knowing the diagnosis and prognosis.

The "conspirators" do not themselves deny the reality. Instead, they deny various other people the right of entry into that reality. Therefore, while a denial is involved, this is a different phenomenon from the denial discussed above. There might, however, be a rather similar secondary gain achieved, if the "conspirators" find that keeping the information secret makes it easier for them to avoid distress themselves.

Writing about the "conspiracy of silence" always reminds me of a midnight call I once made, as an after hours locum doctor, to a dilapidated terrace house in East London. (That part of East London had not yet been demolished to make way for the soul-destroying vertical concrete monstrosities seen later.)

When the door opened, I found myself facing a large number of relatives, jammed into a very narrow corridor. They were competing strenuously for the right to address me. Just when serious domestic violence began to look inevitable, one of them was finally acknowledged as the spokesman.

"'Ere, Doc", he said, very, very earnestly, "e's in there – 'e's got cancer, an' 'e's bleedin' dyin' – but fer Gawd's sake don't tell 'im – it'd kill 'im!"

The assembled multitude was emulating an operatic chorus, nodding in unison and repeating "it'd kill 'im". I struggled slowly through their ranks and went "in there" (the door didn't look very soundproof). When I got "in", I couldn't see "'im" at all – until I closed the door. While it was open, it hid his bed almost completely, boarding him up in a tiny cell.

"'Ere, Doc", he said, with even more earnestness, if possible, than the spokesman in the corridor (though with considerably less vocal power) "ah got cancer, an' ah'm bleedin' dyin' – but fer Gawd's sake don't tell 'em, it'd kill 'em!"

This sort of situation, far from protecting those who are denied the truth, simply prevents any real communication between the various parties who have been told different stories. Consequently, it interferes with preparatory grieving; and it allows no chance whatever for saying goodbye. This "conspiracy of silence" can present quite a challenge. I will look at how to respond to it under the next heading.

Fortunately, whether dealing with denial, refusal, or both, the initial situation is just the starting point. It must simply be noticed, and accepted as a normal phenomenon. The interview then continues, and where the rest of it (or perhaps a future interview) might lead, is something which remains to be seen.

Offer Honesty

In most cases, the doctor under whose care the patient is will be the best person to discuss the diagnosis and prognosis. For this reason, I hope that some of my readers are doctors. However, the general ideas discussed under this heading are not limited to the medical (or any other) profession. In fact, they are not limited at all. They are just part of life.

Honest discussion of the diagnosis and prognosis is one of the most important aspects of communicating with terminally ill patients and their relatives. Clear and complete information needs to be available when requested. This does not mean ramming all the available facts down all the available throats, at every available opportunity. However, any tentative request for information should always be explored rather than sabotaged (as it easily can be, and often is).

It is actually incredibly easy to sabotage a request for bad news. You can look busy or harassed. You can appear to be deaf or preoccupied. You can finish some vital task on your computer while the moment fizzles out. You can agree, but choose to discuss something else first, and then forget. You can test your pager, and pretend that it is calling you away. In other words, you can do virtually anything except what you have been asked to do – and you will always get away with it.

However easy and tempting it may be to sabotage requests for information, doing so adds considerably to the suffering of patients and their loved ones. For this reason, requests for a discussion about diagnosis and prognosis must always be accepted. Not only that, but it is often appropriate to create an opportunity, when such a request could easily be made.

To create an opportunity for important questions to be put to me, I would often ask a patient whether there was "anything else you would like to ask me about, or tell me about, while I'm [or you're] here?" Sometimes, they would almost shout their negative response. Probably, they suspected that there was bad news, but they didn't want to know about it.

On a later occasion, the same patient might ask whether I was "getting anywhere". If I said there were some findings, and offered to discuss them in more detail, they might say they would rather leave the details to me. Perhaps they were ready to accept the existence of unpleasant facts, but not yet ready to talk about them specifically.

Later still, the question might be much more direct. "Do you know what is wrong?" I might reply that there was quite a lot I could tell them, but the news would be bad. Sometimes, they would again change the subject, or perhaps they would say that they didn't feel like hearing any bad news just then.

At some point, however, most people want to know the news, even though it is bad. They would rather it were not bad, of course, but they would rather know it, than guess at it. In some cases, they are already pretty sure of the facts, and just want to confirm them. When people reach this point, they may or may not make a specific request for information, but they will rarely retreat from any openings prepared for them.

The "conspiracy of silence", discussed under the previous heading, is one situation in which honesty about diagnosis and prognosis may require even more care and skill than usual. In this case, many of those involved know the truth, but feel compelled to impose ignorance on others. Sometimes a family conference, with all interested parties together at the same time, can resolve this issue.

Alternatively, if the destructive effect of the conspiracy is first explained to the group or groups withholding the truth, their agreement may sometimes be gained before talking to those who have been kept in the dark. This does not mean that the agreement of the "conspirators" is necessary, as it is the patient who owns this information, after all. However, a negotiated solution usually causes less turmoil than an imposed one.

In cases where no agreement is reached with the conspirators, and they remain determined to restrict access to the truth about diagnosis and prognosis, they are quite likely to make strenuous efforts to persuade you to promise to keep the secret. Obviously, such a commitment cannot be contemplated.

There is another, rather different, situation which also calls for honesty. That is the situation in which you do not know the answers to the questions put to you. Then, honesty about your lack of knowledge is what is needed. Attempting to fill the gaps with vague generalisations may get rid of the questioner, but it will not help them, and it is bound to damage rapport.

The last thing I want to mention under this heading is honesty about your own feelings. As mentioned under Active Listening, disclosure of personal feelings may well need to be filtered. However, pretending you are full of jollity, when your true mood is quite low, makes for very incongruent non-verbal messages. Likewise, if you are feeling very angry, a warm smile will probably not quite "come off".

Without necessarily realising exactly what is happening, most people will notice something phoney in such situations. Just like the evasive answers that fail to hide ignorance, this emotional evasion can easily damage rapport. A middle path between excessive disclosure and an unconvincing façade is what is needed here, and that requires some experience.

Leave Gracefully

The end of an interview can be just as important as the beginning. Sometimes, you will be informed (either verbally or non-verbally) that your departure would be appreciated. More often, you will have to arrange the time of departure yourself.

It is often a good idea to let the conversation gradually return to everyday matters before leaving. Sometimes, though, this would create an anticlimax. If, as may well happen, you are called away as a matter of urgency, just apologise and promise to return as soon as possible. Then keep the promise.

Imminent departure can also be used as a tactic to encourage meaningful discussion. If there has not been much progress during the interview so far, then (assuming that your time is flexible) it can sometimes be helpful to ask an open question as you are (allegedly) preparing to leave.

I mentioned my favourite question for this purpose under the previous heading: "Is there anything else you would like to ask me about, or tell me about, while I'm [or you're] here?" This sort of question is obviously not a good idea if you want to get away quickly, but if you have the time, it can sometimes lead into the most valuable part of the interview.

Finally, when you are actually in the process of leaving, inform the patient how they can contact you (or someone else). In addition, either arrange the next interview, or explain when and how it is likely to occur. This is really part of being available, which was discussed earlier, but departure is an important time to reinforce your continuing availability.

Return

Continuity is important in all helping interventions, but it is especially so, if emotive issues were discussed at the previous interview. In that case, it is often a good idea to return within a day or so to deal with any repercussions which may be occurring. This can sometimes be a rather intense business. You may even find yourself quite unpopular, being perceived as the culprit who "caused" those repercussions. (That is a sure sign that some progress is being made.)

Alternatively, you may need to go back a number of times before you ever have a significant conversation at all. Either way, go again and again. Occasionally, you may be denied permission to do so. In that case, hand over to another member of the team – who may then have the potentially valuable task of listening to what a terrible person you are!

Drain your Pool

The importance of "going back for more", as discussed above, is a timely reminder that, whether in hospice work or any other field that brings us in contact with people in distress, we often do not feel like going back for more. Why is this so?

Is it because the suffering we witness all day long hurts us sufficiently to deter us? In other words, does the emotional pain suffered by our patients cause us pain too? There is a sense in which that is true, but I contend that it can only occur with the aid of our own emotional memories.

As Elisabeth Kübler-Ross[2] used to say (at the slightest provocation) you cannot feel another's pain. Whether physical, emotional or a combination of the two, pain is experienced inside each person's mind. I feel mine, you feel yours, others feel theirs – but nobody feels someone else's pain. What we do feel is the reawakening of painful emotional memories; and that occurs very easily, when witnessing another's pain.

In other words, if I think I am suffering another person's emotional pain, it is really because some emotional memory in my own mind is resonating to their distress. Kübler-Ross likened a person's store of painful memories to a "pool of pain". Because such memories have not yet been resolved and left behind, she also referred to them as "unfinished business".

In most cases, the majority of such unfinished business has been forgotten long ago. However, as we discover when something sufficiently similar to it wakes it up, it may have been forgotten, but it was not gone! These issues, and the "Emotional EEEEs" technique which I recommend for dealing with them, are discussed fully in my first book, "Wanterfall".[3]

It can seem very tiresome to have to work on one's own unfinished business, when so many other things are waiting to be done. In addition, those with multiple degrees in psychology, counselling or related subjects might easily feel that, with all their training, they should be able to rise above such mundane matters.

However, the simple truth is that everybody has some unfinished business, and some of it will certainly be stirred up, from time to time, by hospice work. When that happens, there are really only two choices. The first is to work through the feelings in some way, such as the "Emotional EEEEs" approach mentioned above. The second is to try to push them back where they came from, and forget all about them.

I would not be at all surprised if you are expecting me to recommend the first approach. After all, it occupies about half of my first book. Nevertheless, I think the second choice is usually essential – as a short-term solution. Why? Simply because the amount of emotional resolution achievable in the middle of a day's work is very limited, especially if you are conducting an interview with a distressed patient at the time.

However, as a long-term solution, that second choice simply doesn't work. If persisted with, there will be adverse effects for patients and carers alike. The patients will suffer because their carers are under intolerable stress, so that, no matter how hard they try, the care they provide will inevitably deteriorate. The carers themselves will also suffer, and increasingly so, from the effects of that unresolved emotional stress. Sooner or later, if the problem is neglected, they will "burn out".

"Burning out", which is also discussed in "Wanterfall", may be an insidious process, resulting in an unhappy life but no very obvious dramas. Alternatively, it can manifest as unexpected rows, serious accidents, depressive disorders, other mental disorders, loss of employment, divorce, harm from alcohol or other drugs, uncharacteristic violence, or occasionally suicide.

Any of those consequences can occur partly or wholly as a result of trying to do the impossible. In this case, trying to do the impossible means trying to do the work of caring for others, without doing the equally important and absolutely essential work of caring for one's own emotional health and wellbeing.

In summary, it doesn't matter how much work we have done on our own feelings in the past, or how many university degrees we have. If we work with people in distress, we will come across unfinished business of our own. When we do, we will either have to work it through, or risk burning out.

Fortunately, the necessity for such (often tedious) work, which is really personal growth work as well as personal survival tactics, comes with considerable benefits attached. With every episode of unfinished business which is worked through, the pool of pain referred to above is drained a little more. As it shrinks, our innate capacity for things like joy, peace, kindness, friendship and love seems to expand. It is almost as if the shrinking "pool" leaves more "space" for better things.

Work Together

The previous heading was about a hazard faced by individual carers which, in the worst case scenario, can destroy them personally. This heading is about a similar danger that threatens teams, and which, equally, can destroy them. It is related to the previous discussion, but it has an important twist.

Most carers are used to helping people who want to be helped, and who are therefore happy to accept help. They are usually also pleased to have received it. However, patients are occasionally encountered who appear determined to sabotage all attempts at helping them. In addition, such patients may try to hurt the team members who are caring for them, especially by setting those team members at each other's throats.

Unfortunately, this situation is far from unknown in hospice care. The patient involved might be one with a great deal of unresolved anger, who is expressing it in the form of hostility directed at anyone available. Alternatively, it might be someone who has lifelong experience in employing an abnormal degree of manipulative behaviour.

The latter is often the most difficult type of patient to care for, being usually far more expert at the game than any of the carers. In some cases, an underlying personality disorder, or some other psychiatric condition, is also present. Sometimes, unfortunately, unresolved anger and abnormally manipulative behaviour coexist in the same patient.

In such a situation, each member of the team will find their personal resources tested to an extreme degree. Those resources will not usually survive the test unless they are combined with effective teamwork. I am not suggesting that this is the only situation that requires teamwork, but I think it requires teamwork more desperately than any other situation likely to be encountered in patient care.

As communicating with manipulative clients is an important aspect of communication and counselling in its own right, I have given it a chapter of its own. In other words, the references to manipulative behaviour above are really only an introduction. Most of my thoughts on this difficult and important aspect of clinical communication are to be found in the next chapter, Communicating with Manipulative Clients.