17. ETHICS Avoiding harm Principles Emotions & Relationships Right and Wrong Best interests Respect Consequences Duties 15/06/10 MB SNHC 2009
18. Rights Decisions Personal values Critical thinking ‘ Rules’ Autonomy Theories Principles Trust, communication Standards ETHICS: Key concepts 15/06/10 MB SNHC 2009
19. Technological advances Finance Research - providing the evidence Culture/Society Expectations of medicine The law Increased awareness “ I know my rights!” Limited resources Media ETHICS: Influences 15/06/10 MB SNHC 2009
30. The “triad” in truth-telling The patient The family carers The MDT Dunlop, 2008 In pairs, consider what issues does each member of the triad bring to truth-telling? 15/06/10 MB SNHC 2009
47. EMOTIONAL WORK How many adult human beings are there now at this very minute rushing about in a mute panic, wishing they could find a nurse, the kind of person to whom they can pour out the fears they have deeply concealed. Solzhenitsyn (1968 Cancer Ward)
Many thanks for inviting me here today: I hope I can bring something useful to the day for you. Will cover other relevant issues: truth-telling vs. honesty, collusion, self-awareness in communication, as well as handling difficult questions and looking after yourself! Living with incurable neurological disease: I would want to know what’s going on, wouldn’t you? Am I going to die? What is going to happen to me? How long have I got? Will I become paralysed? Will I need a feeding tube? Although this picture represents what the patient may be feeling, it also represents how WE feel when we are asked such questions. But we still struggle with those questions: they make us want to curl up into a ball, or hand it to someone else, the Macmillan nurse, the consultant. But it is not rocket science: some simple measures can allow YOU to deal with it initially. A lot of these questions won’t have answers, e.g. how long have I got: but that doesn’t mean you can’t listen to the person, hear their concerns, be with them. However, saying you will “get someone to deal with the question”, or “you should ask so-and-so that” does not give a message of care and concern: it gives a message of avoidance, embarrassment, collusion. You can guarantee they won’t ask you anything meaningful again, they will lose trust in you, they will feel abandoned.
National reports tell us communication is a major course of complaints, and anyone working in health and social care will recognise how important it is: yet we still don’t always act in the way we should when asked such questions.
We know there are accredited courses: the ACS course (for band 6 and above~ what about the others? The cleaners, the home carers, the catering staff in the home: who trains them? They are most often asked because they are less of a fear, less of a threat.) Sometimes patients ask us questions to test us, to see if we will stick with them, listen to them, be there for them. If you fail, you fail forever.
Sometimes patients ask us questions to test us, to see if we will stick with them, listen to them, be there for them. If you fail, you fail forever.
… .reveal that doctors did not tell patients their diagnosis of cancer because they were worried they would not cope with the news (Oken 1960; Glaser and Straus 1965)
Truth- telling in healthcare, but particularly in palliative care often relates to loss: a loss which is being experienced now or will be in the future. By understanding how loss can be experienced by our patients and family carers, we may become more sensitive to the issues related to telling the truth, both to patients, families and to the MDT.
Handling Unexpected Distress on the Telephone PATIENTS AND FAMILIES Someone with a terminal illness faces many different emotions, fears, anxieties, challenges about themselves, their family, their future. They can display all sorts of emotions and feelings: Patients & family carers: Anxiety Fear Depression Anger Traumatic stress Despair Exhaustion – the last straw Grief Isolation Poor communication already! Relationship problems Helplessness Intoxication Pain Grief Separation anxiety Powerlessness Bad prior experiences with H/SC professionals PROFESSIONALS: we don’t want to get it wrong, but in trying not to get it wrong, often we don’t try at all. Out fears include: Own anxiety Don’t know what to say/ ? wrong thing Open up a can of worms Cross cultural issues Time Dying not talked about Own beliefs may get in the way But simply listening can be a great support, a way of saying, “I'm not embarrassed, I’m not frightened by you, I’m not too scared to talk to you”.
The perfect environment is no interruptions, peaceful, SOLER: S (square) O( open positioning) L (lean towards) E (eye contact) R (relax!), BUT that is rarely the case! Here are some simply statistics about communication: Words 7% Tone of voice 38% NVC 55%
An ESSENTIAL component of any communication/counselling training is a continuous development of self-awareness: knowing what YOU are doing, what you are saying, showing through NVC: Self awareness includes: Understanding and accepting ourselves as we are: our prejudices, likes, dislikes: if we don’t know what these are we can easily share them without knowing it. Knowing your prejudices doesn’t mean you want to tell them to everyone, it simply means you acknowledge what you struggle with, what your “emotional hot buttons” are. If possible try to do something about the areas that may create obstacles in your relationships, not only with patients: but colleagues, family, friends. You may discover something which you can change for the better! Ultimately self-awareness can make us more understanding of ourselves and others. Self-awareness must be self-initiated and is often painful: who wants to be reminded of what they don’t like? Or what they are not good at? No-one: but it is essential if you are to be able to put these things aside and improve in your communication with your patients and their family carers. Gaining self-awareness by: 1 Listening to oneself 2 Listening and learning from others 3 Self-disclosing
Our concepts of truth (and whether patients should be told the truth, and have their questions answered) will be set in our ethical and moral beliefs and opinions. These are influenced through childhood, friends, family, specific experiences etc
The name given to ethics in healthcare One of the major areas where ethicists practice is in the field of health care. This includes medicine, nursing, pharmacy, genetics, and other allied health professions. Example issues are euthanasia, animal testing, abortion, medical research, vaccine trials, stem cell research, informed consent, truth telling, patient rights and autonomy, rationing of health care (such as triage). The name given to ethics in healthcare One of the major areas where ethicists practice is in the field of health care. This includes medicine, nursing, pharmacy, genetics, and other allied health professions. Example issues are euthanasia, animal testing, abortion, medical research, vaccine trials, stem cell research, informed consent, truth telling, patient rights and autonomy, rationing of health care (such as triage).
Truth is also an individual thing, depending on own needs, cultural influences and specific circumstances. Truth is important in establishing relationships with patients and their family carers.
Our concept of family is very broad: however no matter what it is, it is important to deal with it. Peter Kay 1996 Tell family carers you cannot lie to a patient and want to know if the patient wants to know. The pt should be given the chance to sort things out, AD’s etc Ask patient if they know what is going on: and do they want to now more? Tell family carers they are asking to know more and deserve the truth Support the patient and family carers by explaining firstly to the family what you will do, then by telling patient whilst family are present
Challenging is one of the most important skills used when responding to clients. What I hear you say: challenge a patient or family member? Isn’t that asking for trouble? But: APPROPRIATE challenging helps the client to think carefully and positively and helps him to identify where he wants to make changes There needs to be a good emphatic relationship between you and the client to do this effectively. BUT you need to pick the right time: patient's right time, your right time. Don’t do it as a doorknob conversation… Telling the truth and challenging….doesn’t increase rates of major depressive illness (Wright et al, 2008) Some patients react with depression: this is a coping mechanism based on personality (can be a negative coping mechanism)
Collusion (working with the family carers to make sure patients are not told difficult news) vs. truth-telling and honesty with patients. Can collusion EVER be a good thing? Yes: protection of patient BUT: If that patient is competent they have a right to know , a chance to get “their house in order” and professionals have a duty to tell the truth, be honest if that is what the patient wants. With the Mental Capacity Act, patients should be spoken to first, unless they lack capacity. There is no excuse for families to be told beforehand, unless the patient does not have a capacity. And remember that capacity is never consistent: those with neurological diseases will not ALWAYS lose their capacity so we must never think they do. And even if someone does lose capacity, you should still communicate directly with them to show respect, concern, dignity. What a shame the RCN has to have a campaign about dignity: it’s not difficult, it is simply about listening, being, supporting, allowing appropriate choices, respecting the individuals’ beliefs and values.
Judd (1995) children understand that death means extinction from an early age but use coping mechanisms of denial or magical thinking to avoid the complications of this awareness. Collusion (working with the family carers to make sure patients are not told difficult news) vs. truth-telling and honesty with patients. Can collusion EVER be a good thing? Yes: protection of patient BUT: If that patient is competent they have a right to know, a chance to get “their house in order” professionals have a duty to tell the truth, be honest With the Mental Capacity Act, patients will HAVE to be spoken to first, unless they lack capacity THE PATIENT: Brings their own assumptions and beliefs about truth and honesty, and health and well-being These encompass expectations about treatment and interactions with health professionals (Shaw, 2008) The media will influence this, positively and negatively: inaccurate information may constitute a sense of truth for patients (Shaw, 2008) Unclear language can be misinterpreted by patients: must check understanding of what is told. THE PROFESSIONAL: THE PROFESSIONAL’s issues: What if the patient doesn’t want to know? Well: ask them: “are you the sort of patient who likes to know what is going on?” Their family don’t want them to know : I have to listen to them in case the sue me (stop! What about the patient’s rights: who are you advocating for? Choice has got out of hand in healthcare: how did we cope years ago: the issues were still the same but we fought more for the patient and so we should continue to do so!) I don’t want to talk about this with them I’m not experienced enough to do this I haven’t got the time to do this I don’t want to upset the apple cart They need to know: it’s their choice if they have capacity They need answers to questions, they need the truth Feeling incompetent Fear of getting it wrong and being blamed Embarrassment ‘ Failing’ the patient ‘ Not enough time’ Acknowledging own [immortality and] emotions Poor communication skills The emotional cost of caring THE FAMILY: Don’t tell Protect We will have to face the truth if they know Don’t talk about it and it will go away They won’t cope, they will give up and die They should know They need to get things sorted out I can’t lie to them any more
Collusion and truth-telling: Focus on: Relative’s feelings Relative’s reasons for not wanting to be truthful Acknowledging relative’s motives e.g. protecting the patient from distress The strain placed on the relative/patient relationship by not being truthful The relative’s perception of the patient’s understanding. Identify any evidence that the patient might already suspect the truth Then Offer to assess the patient's understanding of their illness directly Reassure relative that information will not be forced onto the patient if not wanted
So you have this common tension between yes you must tell and no you shouldn’t: Yes you must tell: Honesty is important in building and maintaining trust in all [patient] relationships Mutual respect and concern Follows values and beliefs taught in childhood: lying is unacceptable Moral distress for MDT if keeping the truth Unethical not to Patient choice and autonomy will be undermined if not told: can be included in treatment choices and plans “ Truth-telling is an ethical obligation” (Starzomski, 2009) Honesty is important in building and maintaining trust in all [patient] relationships Mutual respect and concern Follows values and beliefs taught in childhood: lying is unacceptable Moral distress for MDT if keeping the truth No you mustn’t tell Will burden patient Need to protect patient, and family themselves! Family also have to face up to the truth and talk about it Not take away hope To carry on “fighting” and not give up They’ll be upset I won’t cope with their distress Well, that’s not an answer is it? Yes: it’s a judgment call, use your nouse: you can still do that in healthcare although I’m not sure there is a policy about it!!!??
Don’t forget that in truth-telling / challenging you will be a threat to the other persons. So, make sure you have as much information as you can, do it sensitively, in a supportive way. I believe you can actually say anything to anyone: it’s the way you say it, the way you approach it, which is most important. OK, now to difficult questions (at LAST!) So you have patients with a life-limiting illness, which will cause them to deteriorate, to lose perhaps physical and / or cognitive function, living with fear, anxiety, maybe denial? Their world has decreased to the illness, it controls everything, they live moment to moment, nothing is certain. If you answer a difficult question without using a safe strategy you may well disrupt things. There is a difference between challenging and completely flooring someone. Most of this will be around the way you approach the question and do your homework before actually dealing with it. So, please bear this in mind! You get asked a difficult question: what do you do?
Find out patient's perceptions as to what makes them ask the question, e.g. am I going to die? "What makes you think this? What makes you feel this? Why are you asking this now? After obtaining a response, repeat the question if necessary by asking if there are any other reasons for the patient feeling this way. If the patient gives no other reason or changes the subject: they may not WANT to know You might say: “You asked about the diagnosis, is that something you would like to talk about?” If the patient says “no” - leave it there; they are probably not ready to have the truth confirmed. If they do want to talk about you, you might want to ask about their own feelings about their present situation, their relatives feelings about it, how are their relationships. Also you need to consider any reasons for not being truthful (other than the family don’t want them to know). If the patient gives other reasons when you ask why they ask, etc, then: …… Confirm patient's thoughts if correct Remember about a warning shot if this is going to help. Invite patient to express their emotions and provide support if appropriate, e.g. “well it isn't good news I’m afraid……..you do have MND / PSP and as we have said before it isn’t curable……..so it’s bad news…..yes you will die from it”. Pause to see if patient spontaneously raises any concerns. If not, invite patient to voice their concerns. “What are you thinking at the moment?” Address only the concerns patients raise. Do not add any other info at this time: it will be too much for them to take in. Answer realistically; avoid rushing in with premature or false reassurances. Invite further questions. Offer to provide information (written or verbal) that may be relevant Assure continuity of care with a “next step”: what happens next is….OR I will call to see you again on such-and-such a date. But if you have any questions before them please ring me on this number”.
AND MAKE SURE YOU LISTEN: don’t look elsewhere, don’t check your phone, don’t look at your watch, don’t fiddle with your pen! And don’t think of your next question while the other person is giving you information: it will mean you are not listening: bit like trying to read something (e.g. my PPt) and listen to me at the same time, it doesn’t work! Delay judgment until you’ve heard everything: don’t jump the gun, or try to pre-guess what someone is saying: it doesn't work either! Don’t dwell on one or two more points at the expense of others: let the person lead you to what they want to talk about, and ask them about other subjects if you think they will be useful: they may not agree with you! Keep an open mind. Concentrate on the main direction of the speaker’s message Be prepared to listen Be objective: keep your emotions out of it: again this is where self-awareness comes in. If you are human, you will have emotions: that’s completely normal. Tears are not wrong: but if the patient has to comfort you then it probably is! Be aware if you are feeing tearful, and don’t play it up, don’t think it makes you look more caring. It doesn’t if they are not honest tears.
allows people to believe in something -higher power - own abilities - science hope is not a promise
How do we cope with handling distressing situations, patients dying, feeling helpless? Well we do what we think is OK, or easier, such as: by doing it for them by splitting them off (them and us) by imposition by shutting down and hardening up by detaching by blaming by denying by repressing helplessness
Recognising stress is important: it can be the first sign that you are not coping with these difficult situations.
Enjoy life: we spend our time caring for deteriorating and dying patients yet so often fail to enjoy life ourselves. No-one ever wishes, when they were dying, that they had spent more time at the office. Learn to look after yourself more Respect yourself more Create a better balance...(the mars bar philosophy) Stop hiding from the painful reality of death and dying Limit over exposure Do less……(??) but do it better Set up a supportive supervision relationship Give praise where it is due and learn to accept praise Own up when you are vulnerable Take regular breaks Deal constructively with endings Slow down and be , with rather than I do for So what? Monitor your “sod it factor” Keep an eye on your sick and tired days Buy a lottery ticket ! Move on when its time to go Set realistic goals for yourself and your team Tell your managers how they can support you Open your eyes to what you have achieved On the way home practice focussing on one good thing about your work day t can you do?
Get appropriate help if that is what you need: it’s not a weakness, it is a strength to recognise that you need help. Would you hobble about on a broken leg? No, so don’t hobble about on a broken mind.
Remember you are not one person: be part of a team, rely on each other, share the work but do not take it all~: or leave it all to everyone else.
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