distress

What it means to be a therapist


I wrote the following response to a discussion held recently on a Facebook group Exploring Pain Science – about the term “catastrophising”. It’s a term that elicits great anger and frustration from people living with persistent pain, and I see the term used poorly by clinicians as a judgement about another’s experience. There’s certainly plenty of research showing relationships between high levels of “thinking the worst” about pain, and poorer outcomes – but HOW we as clinicians respond to someone in distress may be more of a problem than the act of a person describing their fears and worries about the future. This is what I wrote:

I’ve been pondering – I think I see people as doing the absolute best they can to make the best decisions they can based on what they know at the time. And “knowing” means all the messy uncertainty, lack of logic, emotion and coercion from others! So whatever a person is doing to manage is the best they can do. All I can do is offer some options that I’ve seen other people use, maybe provide some more information, maybe even more accurate information, support people to be guided by what they see as important (usually values), and be there for them as they make their own minds up about what to do next. I’m a cheerleader, encyclopaedia, visualiser (lay out the options in a way that makes sense), perhaps a guide but only in so far as helping people notice things they hadn’t before.

To me, if someone is thinking the worst, it could be that they don’t have all the information about their resilience that they need, it might be misinformation about what’s happening in their body, it could be conclusions that over-estimate the threat and under-estimate resilience. It might also be difficulty pulling the mind away from sticky thoughts that stop clear thinking, or as one researcher called it “misdirected problem solving” – a way for the mind to remind the person that there’s an unresolved situation. It might also be feelings of helplessness, feeling like there is no point in trying anything new because nothing works anyway, a sense of not having enough energy to keep trying…

Those aren’t necessarily inaccurate thoughts, but they’re certainly not helpful thoughts, especially at 3.00am! So temporarily at least it seems helpful to bear witness to that person’s distress, to make room to be present, not to judge or dismiss but to allow those worst fears to be recognised. Sometimes bringing the worst fears out into the light shows that they can be managed better than expected, sometimes they fade into nothing, and sometimes they allow someone else to be there and support when the person’s run out of puff.

While I can understand how the language of uninvolved clinicians hurts because so often they fail to acknowledge the real distress of the person, I can still recognise that many of the contents of thoughts and beliefs won’t happen, – those scenarios are there wanting recognition, but they may not happen. If they do there will be things to do then – but mostly, when I catastrophise, I use it as energy to recognise how lacking I feel. And that’s not a nice place to be, but it’s simultaneously true (I lack) and untrue (others have what I need).

There’s a process I use for myself called creative catastrophising. I write down my worst fears, get them out on paper, make them visible. Sometimes that’s all I need to do. Other times I begin planning “what if X disaster happened, what would I do” – and when I’m in the right frame of mind, I can figure out a way to get by. I can’t tell anyone else to do that – but it’s a strategy that’s stood me in good stead as I’ve gone through the ups and downs of my life. It’s one way I cope.

Clinicians, if you can bear witness to another’s distress, without wanting to change, fix, judge or DO anything apart from being fully present, you’ll be doing the very best thing you can. The time for doing something “to help” is just around the corner – whatever you do, do NOT tell the person “you’re catastrophising” because this immediately means you’ve moved from being with to judging.

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Dealing with distress


From time to time anyone who works with people trying to help them make changes in their lives will encounter someone who is overwhelmed, distressed and generally not willing to (or able to) take even a tiny step forward. It’s hard for us as therapists because, after all, we want to help people – but hey! This person in front of us just isn’t up to it!

I think many of us who weren’t trained in psychology can find it really hard to know what to do, and like all humans, we deal with feeling helpless by hoping to avoid it.

Some of us will tell people what to do – this is the way most of us were trained, so it’s what we do when under threat. We might couch this advice in fancy words, but essentially we try to get the person to make a change on the basis of our expertise and superior position. After all, the person came to us for help, right?

Some of us will feel stuck ourselves. Perhaps we’ll give up, or blame the person we’re sitting in front of. They’re not motivated/willing/ready so we stop trying and back off.

In both of these situations, the person’s actual needs at the time can be inadvertently ignored. They’re distressed and we either ignore and advise, or back off – when perhaps what they’re really wanting is someone to be present with them and offer them time to work together on the next best step they can take.

Here’s one way I’ve used to help people who are stuck, distressed and not certain.

  1. Be fully present and let them express what’s going on. This means listening, perhaps asking “can you tell me more about that?” or “it’s tough but are you willing to talk me through what’s going on for you right now?” or “what’s your theory on why you are feeling what you’re feeling?”
  2. Listen with an open and enquiring mind and heart. That means absorbing what they’re saying without trying to respond to it. At the most, you can reflect what you hear, perhaps saying things like “I think I understand that you’re feeling [sad, afraid, overwhelmed], do I have this right?”, or “From what you’re saying, you’re not sure [what’s going on with your rehab] and this is incredibly hard”, “if I’ve heard what you’re saying… is that what you mean?”
  3. Breathe and be mindful of your own response before charging on with the session. It’s OK to tear up if someone is saying something that would make you feel sad. It’s OK to feel aghast that this terrible thing is happening. It’s OK to notice your own body tighten up, your breathing change, not to know what to say. Just notice this in yourself BEFORE you respond. If you do feel something, respond naturally – normalise the experience described by the person as being something anyone in their shoes would feel, and reflect your own response to it. You can say things like “Oh that sounds like such a tough situation” or “I feel a bit tearful myself when I listen to what you’ve been through”, or “I really don’t know how to respond to what you’ve said, I’m lost for words, it’s really hard”.  The purpose behind doing this is to acknowledge that we’re human too, and get affected by what we hear. To be transparent and real so that the person is aware of your own readiness to “show up” and be fully present alongside them.  If you need a moment to catch your breath after they’ve told you something emotionally charged, say so.
  4. When you do respond, summarise what you’ve heard and ask them if that’s what they intended to mean. In motivational interviewing terms this can be called “giving a bouquet” – collecting together a summary of what the person has said, then offering it back to them to check you’ve understood (and it also shows them you’ve been listening).
  5. Before doing anything else, ask them “where does this leave you?” or “what do you think you should do right now?” or “what’s the next step for you now?” People have ideas about what to do next, most times, and we work more effectively with those ideas than if we try to bolt on some piece of advice without recognising their thoughts.

A couple of nice tools to use at this point are the choice point  , and the matrix by Dr Kevin Polk.

The hardest part of responding this way is often our own response. Because we feel uncomfortable, and we’re aware of timeframes, expectations, and because we probably don’t enjoy people crying or being angry in our sessions, we often don’t want to take the few moments needed to be present with someone who is in the middle of it all. Being present is about being there and not trying to change the situation, or rush away from it, or fix the problem – it’s about being willing to bear witness and honour the vulnerability that person has shown us. What a privilege!

It can be emotionally tough after a day of seeing people who are feeling distressed. I think this is where using mindfulness as I’ve described above can be really worthwhile. Noticing what our body is doing when someone is distressed can help us notice the work we do (and help explain why some of us don’t want to talk to anyone at the end of a hard day!). The odd thing is, that when we honour someone by being present and not trying to change their situation at the time, we often find the person is ready to move on and engage in therapy far more quickly than if we’d tried to “make” it happen. At least, that’s my experience!

A good clinician once told me “never be afraid of allowing someone to have a crisis, because after a crisis, shift happens”. I’ve found that to be true.

I’d love to know your thoughts on this post – I don’t have loads of references for it, but a couple that come to mind are:

Beach, Mary Catherine, Roter, Debra, Korthuis, P. Todd, Epstein, Ronald M., Sharp, Victoria, Ratanawongsa, Neda, . . . Saha, Somnath. (2013). A Multicenter Study of Physician Mindfulness and Health Care Quality. The Annals of Family Medicine, 11(5), 421-428. doi: 10.1370/afm.1507

Goubert, Liesbet, Craig, K., Vervoort, Tine, Morley, S., Sullivan, M., Williams, A., . . . Crombez, G. (2005). Facing others in pain: The effects of empathy. Pain, 118(3), 285-288. doi: dx.doi.org/10.1016/j.pain.2005.10.025

Two strikes and you’re out – referrals and readiness


I’m in a bit of a dilemma. As you know, health resources are scarce and it’s not easy to get an appointment for treatment of a chronic condition. There’s something to be said for making sure that our precious health care time isn’t wasted by people who would rather not be there.
On the other hand, there is also something to be said for people being in the right headspace, or in more technical terms, the right stage of readiness to engage in therapy. If the person is referred for treatment before they’re ready, it’s going to be difficult for them to engage – and they may very well do the resistance thing that we see so often ‘yes, but’, ‘OK but’ or not actually do what we’ve suggested they do to help manage their condition.

The discussion that has raised this in my mind happened on Monday. (more…)

Distress and wellbeing – two sides of the same coin?


ResearchBlogging.org

Predictors of psychological distress and well-being in women with chronic musculoskeletal pain: Two sides of the same coin?
Alexa Hubera, Anna Lisa Sumana, Giovanni Biasib, Giancarlo Carlia

This is an interesting article on the concepts of wellbeing and distress. Distress is often considered a key element in whether someone has ‘good quality of life’ (see my post from a day or so ago), but in this article, the relationship between psychological distress and well-being was explored, and the predictors of both in patients with chronic nonmalignant pain are identified.

Why would we be bothered about distress and how is it measured? Distress is not a particularly well-defined concept, but is often referred to in the same breath as ‘eustress’ and ‘distress’ (see this entry in Wikipedia for an exploration of several theories relevant to stress and coping). If its used in this way, it often refers to suffering (which is about negative judgements of a situation or event), and is distinct from depression. Using Loeser’s onion rings model of pain, it’s the emotional judgement of pain that negatively impact on the individual.

In this article, however, the authors refer to two traditions and the impact these traditions have on our ideas about wellbeing. To quote ‘[the] hedonic approach focuses on happiness, while the eudaimonic approach defines well-being in terms of the degree to which a person is fully functioning, which may or may not be accompanied by feeling good.’
This reminds me of the traditional WHO definition of health – which is not simply the absence of disease!

One of the reasons I was drawn to this study was the statement by the authors that ‘To date, few studies on well-being in patients suffering from chronic pain have been published’. (Of course I’d argue that experiencing chronic pain may be mandatory, but ‘suffering’ is optional!) This is precisely the point I’ve been trying to make for some time in that most of our knowledge about people experiencing chronic pain is drawn from people who are seeking treatment. People who live well despite having chronic pain are not studied often and hence we know relatively little about them.

So, getting down to the nuts and bolts of this study: 69 women recruited from a University Hospital Rheumatology centre. The majority of them met criteria for fibromyalgia, while the remainder had widespread pain, and many of them also experienced other conditions associated with central sensitisation syndrome (e.g. psoriasis, irritable bowel syndrome, headache, fatigue).
They all completed a raft of measures, but the ones I want to focus on are those assessing distress:
The Symptom Check List-90 (SCL-90) measures psychiatric symptoms and psychological distress and has been used often in this type of research.
The State–Trait Anxiety Inventory Form Y (STAI-Y) consists of two scales measuring state (STAT-Y1) and trait anxiety (STAT-Y2), respectively. It’s been used in many studies of anxiety in different patient and community groups.


The Multidimensional Affect and Pain Survey (MAPS)was used to measure pain-related emotional suffering and well-being. It consists of 101 descriptors within 30 clusters, grouped into three scales.
1.
The Somatosensory Pain scale measures somatosensory pain sensations, and its results weren’t considered in this study.
2.
The Emotional Pain scale (EP) measures pain-related emotional suffering within eight areas: Physical Illness, Depressed Mood, Self-Blame, Anger, Anxiety, Fear, Apathy, and Fatigue.
3.
The Well-Being scale (WB) measures aspects of wellbeing in five clusters. The first two clusters—Mentally Engaged (e.g.,“interested”) and Physically Active (e.g., “vigorous”)— measure healthy activities and follow the eudaimonic tradition (which defines well-being in terms of functioning, not happiness).
The third and fourth clusters—Affiliative Feelings (e.g.,“sympathetic”) and Positive Affect (e.g., “happy”)—measure happy thoughts and really within the hedonic tradition. The fifth cluster, Treatable Illness, measures to what extent the patient believes that his/her illness is “curable” or “manageable” and represents a separate dimension of well-being.

(Just a comment – I’m not sure of the relationship between this measure and measures of acceptance such as those being studied by McCracken and others).
The other variables included in this study were ‘general epidemiological–anamnestic questionnaire, six measures of physical symptoms (tender point count, pain area, pain intensity, fatigue, stiffness, and physical disability).

Now for some statistics – not particularly challenging ones, so don’t panic!
Pearson correlation coefficients were used to assess the relationships between measures of well-being and psychological distress, applying Bonferroni adjusted α levels.

These showed only three physical symptoms—pain intensity (VAS), number of positive tender points, and physical disability (FIQ)— showed meaningful correlations with psychological distress and/or well-being.

A hierarchical multiple regression analysis was carried out to separately predict each of the six measures of well-being (WB-4 and each of the five WB clusters) and three measures of psychological distress (MAPS EP, STAI-Y2, and SCL-90 GSI).  ‘Predictors were entered in the following order in five steps: (a) age; (b) pain duration (i.e., time passed since the onset of pain symptoms); (c) pain intensity; (d) number of positive tender points; and (e) physical disability.‘ Just so you know, several of these were mathematically transformed to make the stats assumptions work (which may affect the rigour of the results), but at least they told you about it!

Ok, results.
Well, almost half the participants reached the cut-off score for trait anxiety, and many of them also reached the score for high distress.  They sound fairly like the people that get referred to Burwood Pain Management Centre.

In terms of psychological distress, higher age and more physical disability emerged as the two most important predictors of psychological distress, each making unique contributions.

‘Both Pearson correlations (and multiple regression demonstrated that wellbeing (as measured by WB-4) was significantly predicted from low physical disability alone, and was independent of age, pain duration, pain intensity, and tender point count.’

What does this actually mean?
The results really show that the relationship between psychological distress and pain-related symptoms, may be mediated by the patient’s limitations in the capacity to perform daily household chores (ie disability).

We know that disability is influenced by a whole range of factors including the responses of significant others – and the cognitive interpretation of the meaning of those limitations, such as the disparity between what the person believes is expected of them as compared with what they believe they are capable of.  It’s not simply about pain intensity.

Wellbeing, on the other hand, decreased with higher disability but, in contrast to psychological distress, was independent of age, pain intensity, and tender point count.

Now the finding that well-being was independent of pain intensity is an important result of this study.

Yesterday I quoted from Katz where it was assumed that if pain intensity alone was reduced, ‘quality of life’ would improve. I wouldn’t want to equate ‘quality of life’ with ‘wellbeing’ – but the dimensions are similar, and suggest that it’s simply not enough to reduce pain without simultaneously addressing other issues that are important to the individual.

As the authors state ‘Our findings suggest that, in patients with chronic musculoskeletal pain, well-being is related to aspects of physical disability that are not directly linked with pain. The results are in line with the literature demonstrating that the negative impact of chronic pain on physical functioning and work status is moderated by cognitive and psychosocial factors, such as pain catastrophizing and pain-related fear of movement.’

They add ‘Results are consistent with the view that pain behavior, rather than pain per se, should be the target of treatment’. Not news to many of us, but perhaps to those clinicians with a somewhat simplistic (or perhaps simply a biomedical) viewpoint, it may be surprising.

I’m also keen to support their contention that psychological wellbeing should be measured as an outcome quite distinct from a reduction in psychological distress. It’s a new concept for health care – to think that along with ways to reduce distress, clinicians could also consider ways to enhance wellbeing – and that this can occur in the absence of a focus on pain reduction.

It makes me think that the emerging field of positive psychology is something that pain management clinicians could well start to view more seriously. My post from the other day on counting blessings comes to mind. And for those of us working in the field for the long term – it might make our work just a little lighter and more fun!

HUBER, A., SUMAN, A., BIASI, G., CARLI, G. (2008). Predictors of psychological distress and well-being in women with chronic musculoskeletal pain: Two sides of the same coin?. Journal of Psychosomatic Research, 64(2), 169-175. DOI: 10.1016/j.jpsychores.2007.09.005

The impact of pain management on quality of life


ResearchBlogging.org

What exactly is quality of life? And what is pain management? This article, presented at a 2002 Roundtable on ‘The role of coxibs in successful pain management’ is written by a medical researcher, which should give you a bit of a clue about how pain management is defined for the purpose of this paper (i.e. pain control). Much of the discussion about quality of life measures, however, is useful, and the article itself is reasonably short – and it talks the language of doctors, which I thought gives an interesting slant.

Firstly, the point is made that quality of life involves assessment over multiple dimensions, with the World Health Organisation’s ‘Domains and factors of quality of life’ being used as an example of the domains that can be considered. For those who haven’t reviewed this recently, there are six domains:
1. Physical
2. Psychological
3. Level of independence
4. Social relationships
5. Environmental health
6. Spirituality
and a final ‘general’ facet that evaluates ‘overall perceptions of health and quality of life’.  This link to WHOQOL leads directly to the Seattle Quality of Life Group website.

The point is made that pain affects cognitive, motivational, affective, behavioural and physical components, and quality of life has a similarly all-encompassing nature. Katz points out that ‘quality of life … can be defined as an individual’s ability to perform a range of roles in society and to reach an acceptable level of satisfaction from functionoing in those roles’, but at the same time recognising that quality of life research is relatively new, and the effects of pain on quality of life is only just beginning to be investigated.

When we’re choosing any assessment tool, there are some practical things to consider – quite apart from the psychometric properties of the instruments we may think of. Katz nicely identifies some considerations:
1. Which is more applicable – a disease-specific or generic instrument? He identifies that there are both advantages in specific measures (for example, able to detect more subtle change) as well as disadvantages (difficulty comparing across patient groups). The SF-36 (Medical Outcomes Study Short Form 36) is suggested as a general health status measure that combines the ‘best’ of both worlds.
2. What dimensions of quality of life need to be measured? Katz acknowledges that quality of life measures are multi-dimensional since ‘an instrument that does not include several dimensions will make it impossible to determine the nature of a score change’. The areas of physical, psychological, social, somatic, and spiritual are thought to be important, and again the SF-36 is identified as a key contender because of the breadth of dimensions included.
3. How much responder burden is acceptable? This refers to the amount of work needed to complete the questionnaires – an important consideration when we recognise that many people don’t like paperwork, or have relatively low reading levels.
4. What administrative issues need to be considered? Ahhh, now that’s an excellent point! A very comprehensive database that I know of has been abandoned from time to time because of difficulty obtaining clerical time to score and enter questionnaires, and in the mists of time, some of the original scoring ‘rules’ have been lost… Questionnaires used in pain outcome measurement need to be applied at least twice, more appropriately three or four times – and ‘compliance’ or the number of people who complete all of the measures all of the time reduces over time…
5. Has the instrument been validated, and is it reliable? Well, this goes without saying… and should be a ‘given’ for people working in the area of pain management.

There are a number of issues that this paper does not cover well.
Firstly, there is an assumption that if quality of life is reduced when pain is experienced, an individual’s quality of life should improve simply by reducing pain intensity. While this intuitively makes sense, it assumes that pain intensity alone is responsible for loss of quality of life. Reports of pain intensity are influenced by things like psychological distress, fear of injury, fear of being out of control, low mood, health anxiety and so on (e.g. Severeijns, Vlaeyen, van den Hout & Weber, 2001). When analgesia is used, while it may reduce pain intensity it may not address underlying issues such as low mood, health anxiety, and most especially fear of injury. The latter is one reason some patients tell me they don’t want to take medication, because it ‘masks’ pain!

Katz suggests that ‘analgesic agents should be compared … incorporating the use of symptom distress scales, which may be the most sensitive way of discriminating among analgesics in effects of quality of life’. I suggest that distress scales may not be the most appropriate measure of effectiveness in quality of life, and in fact changes across several domains such as Physical, Psychological, Level of Independence, and Social Relationships should be observed before an intervention should be considered ‘successful’.

Another issue is that although Katz indicates that taking repeated measures is important, he makes little mention of the need for longer-term followup. At least part of the initial response from any intervention is likely to be due to the ‘meaning response’, or expectancies or placebo response that people have simply from having been given a treatment. As a result, it’s important to measure changes in quality of life (and any other outcome measure) some months or even years later after the treatment is first initiated. The risk otherwise is that an initial lifting of mood, sense of hope, even physiological changes secondary to placebo can subside over time – and in the end, it’s the effects that are sustained that are important.

However, it’s difficult to argue with Katz on this: quality of life measures should be included as a key variable in future pharmacological research. Personally, I think it should be included as an outcome measurement of any pain management intervention.

For further information on a broader range of outcome measures that are being considered for pain management, this article by Dworkin and colleagues provides some insights into the areas that the IMMPACT group recommend: (1) pain; (2) physical functioning; (3) emotional functioning; (4) participant ratings of improvement and satisfaction with treatment; (5) symptoms and adverse events; and (6) participant disposition.  Worth a read – and they’re continuing to publish more on this area.

Katz, N. (2002). The Impact of Pain Management
on Quality of Life. Journal of Pain and Symptom Management, 24(1S), S38-S47.

Severeijns, R., Vlaeyen, JWS., van den Hout MA., & Weber, JWA., (2001)Pain catastrophizing predicts pain intensity, disability, and psychological distress independent of the level of physical impairment. The Clinical journal of pain vol. 17, no2, pp. 165-172