Tragedies in pain management


I thought about putting a warning at the start of this post, because if you’re enthusiastic, passionate, committed to good pain management, what I’m about to write may make you weep!  It’s about systems and missed opportunities and the effect this has on patients.  NB: this post is my personal opinion, does not reflect the opinions of my employers, children, partner, dog or cat.  I am not referring to any specific centre or service, and nothing in this post should be construed as anything other than opinion (although I’ll happily provide facts on request).

Did you know that in New Zealand, one in six people has an arthritic or painful health condition?  And that the financial costs are thought to be around NZ$2.5 billion, financial costs comprise health sector costs and indirect costs.  This doesn’t include the dollar value placed on the burden of disease, or the years of healthy life lost, which is estimated to be NZ$2.56 billion.  That’s a whole lot of money! (Figures drawn from Access Economics report for Arthritis New Zealand, prepared in 2005).

This estimate also doesn’t account for the additional costs of chronic pain from non-arthritic conditions, such as complex regional pain syndrome, chronic low back pain, abdominal pain, pelvic pain, non-cardiac chest pain and so on.

You’d think, well I would anyway, that with this sort of analysis showing the horrendous cost of these diseases that there would be a national strategy for managing pain, and that every New Zealand District Health Board would have a consistent and well-funded approach to address the needs of people with these disorders.  I’m sorry, there is no such thing.  When I reviewed the referrals to a pain management centre recently, the average duration of pain was between 2 and 5 years, and the majority of people were no longer working as a result of their pain.

What causes this sort of delay in referring people for pain management?  I wish I could tell you.

What’s interesting is that even though the average pain duration is 2 – 5 years, half of those referrals were for people who had already been seen at that centre.  An even greater tragedy? Some of the new referrals will be turned away because they will be waiting more than 6 months to be seen, while others will be accepted not because of the greater burden of disease, but because of their funding source.  And clinicians are asked to overlook this discrepancy in serving the needs of people because that funding source provides income, but that income isn’t streamed back into that specific service  (it goes into the general coffers).

Some curious things to ponder…

  • Collecting information on who refers to pain management and what the referral characteristics are isn’t being done
  • There doesn’t appear to be any review of the re-referrals – why are people who have been seen being referred again? What initiates a new referral?
  • While there is a database of psychometric information on people being assessed, this isn’t being analysed except on an individual case-by-case basis
  • The goals identified by people attending for comprehensive assessment are primarily around reducing or removing pain – but pain is often reduced by only a small amount

I could go on – the problem is, these issues are not new.  In fact, they’ve been raised many times with managers.

I suppose I shouldn’t be disheartened.  Pain management services are often the ‘Cinderella’ servicein health  – everyone wants someone else to take care of these people, but no-one is very keen to admit that they haven’t been able to ‘cure’ the problem.  And the costs of health care in this group are, as you can see, very high.  But they’re hidden because these people are present in every service in every sector of health in every town and city – so the costs just look like part of doing health care.

If I had a wand, this is what I’d wish for:

  • analysis of the pathways to pain management – from community to treatment facility and back again
  • a systems approach to identifying these pathways and looking at ways to streamline access
  • a stepped care approach starting in the community with a psychosocial risk factors intervention included in any biomedical input
  • close integration of tertiary level treatment with primary level follow-up
  • a forum for helping people with multiple diagnoses – problems managing pain is associated also with prescribed and nonprescribed drug use and abuse, mental health problems and work disability
  • outcome measurement alongside careful collection and analysis of information about the people being referred so that services can be integrated and matched with need and the outcomes achieved

The thing is, pain management is often captured by people with a particular agenda.  I don’t think it’s always about health care providers being greedy and wanting to make money, although I acknowledge there are some unscrupulous people doing just this.  I do think it’s about dogma and believing that there is Only One Solution.  I also think people can be very fearful of transparency – especially transparency in outcomes.  There’s no doubt that pain management is complex, and that it can be really difficult to review the burgeoning literature on what works for whom and when.  But this shouldn’t excuse poor science – it’s more of a reason for really good knowledge of science and learning to read the literature very, very carefully, and using data as the basis for decisions.

We also need to remember that pain is a political motivator.  People in pain, and especially distressed people in pain, can capture the hearts and minds of those around them – especially the media.  It’s not uncommon to see articles in the media about a person who has been denied some sort of service and learn about the incredible pain they’re in.  Media-savvy patients can pull political strings very easily.

But managing pain is not a sexy political topic.  It’s plain hard work, it’s often a slow process to systematically work through a series of treatment ‘experiments’ to establish the one that provides the most benefit with the least negative effect.  And even when something is ‘successful’, it rarely completely abolishes pain, so people with chronic pain can feel disillusioned.  Some get very angry when they find that there simply is no medication that ‘takes the pain away’ and that they will ultimately learn to ‘live with’ their pain.  This is sad – it’s more sad when they don’t hear that there is a team of people who can help them learn to ‘live well with pain’.  And even more sad if some of those treatment providers don’t use the scientifically established treatments that are known to have a good effect but instead prefer to use unsubstantiated treatments that rely on chi or similar woo.

Maybe I’m being pessimistic, but I see service fragmentation, no attention to outcome measurement, capture of various groups of patients by health professionals and limited transparency about what is being done and whether it works as a tragedy.  As if it wasn’t bad enough to have a chronic pain problem, for some people, the ‘best’ treatment they get just doesn’t cut it.  Surely we can do better than this.

8 comments

  1. I’ve often pondered the term ‘Cinderall Service’.

    Is it because so many of the staff are badly dressed and spend their time watching the clock ready to dash out?

    Never quite understood the term……

    P

  2. I believe the issue of poor pain and symptom management is a global issue, with little evidence to indicate that these highly costly programs are effective. However, there is research out of Canada from the University Centre for Research on Pain and Disability that has examined why some individuals have an uncomplicated recovery pattern from injury and other individuals recovery patterns are more complicated. This research has lead the Centre to create the Progressive Goal Attainment Program, or PGAP for short and it addresses the disability associated with injury and illness. The goal is to minimize the disability by addressing the psychosocial barriers and assisting clients to maximize their functional independence.
    In Canada we are beginning to see a paradigm shift in the treatment of all individuals away from the traditional medical model towards a more holistic, client centred method which promotes self-management of illness.
    If anyone is interested in finding out more about PGAP, you can look it up on the web at http://www.pdp-pgap.com
    Cheers

    1. Thanks for taking the time to comment on my blog. I’m familiar with PGAP and PDP, although have my reservations about its use in people with complex chronic pain problems which is the group with whom I work. I’m also aware that while the programme has some excellent researched outcomes in Canada, the outcomes in New Zealand have been considerably less favourable.

      As I review the literature on chronic pain management it continues to support the more intensive programmes for the kind of people that I work with, while people with sub-acute pain and much less complex presentations may beneift from ‘pain management lite’ such as PGAP and PDP. Despite this, early intervention has always been the aim but the outcomes from these interventions thus far have been equivocal. There continue to be the same proportion of people moving from acute, sub-acute pain to chronic disability over time.

      Michael Nicholas (University of Sydney, Royal North Shore Hospital Sydney) has made the point that programmes delivering less than 100 hours of specific pain management input have less effect than more intensive programmes. One size does not fit all and it’s vital to have a titrated approach to ensure the right intervention for the right person at the right time.

      My final reservation about PGAP and PDP is the way in which it doesn’t recognise the specific skills of each health professional within each country. For example, in New Zealand occupational therapists have training in CBT and interpretation of psychometric instruments such as TSK, HADS, CES-D and so on, while psychologists in New Zealand don’t have any specific training in pain management in their professional training programmes (unless they have an internship in a pain management facility). As a result, there are psychologists involved in PDP with less knowledge and experience in pain management than occupational therapists who can only carry out PGAP programmes and are apparently not ‘qualified’ enough to conduct the PDP. This doesn’t respect the skills that various health professionals bring to pain management and reduces the effectiveness of such programmes for the people we work with.

      The tragedy is that even with PGAP, PDP and various ways to approach sub-acute pain, the time it takes for individuals to have psychosocial factors actively managed is far too long. There continues to be a belief amongst some clinicians that provided the nociception is abolished and pain reduced, people will ‘return to normal’. Hence, many people with yellow flags are not referred for input that may help, and by the time they are referred their disability has been present for some years. Many people being referred for PGAP and PDP in New Zealand have chronic, complex and challenging disability that simply can’t be addressed by one or two clinicians working in relative isolation using a manualised approach.

      There continues to be a need for a stepped care approach and one that recognises that disability associated with pain is multifactorial and needs a multidimensional approach. It also needs funding, strategic planning and policies that recognise that outcomes must be measured and the information from outcomes used to further refine and target intervention.

      Sorry for the rant, but this is dear to my heart – too many people I work with have had repeated failed input that includes both biomedical and programmes like PGAP. If something doesn’t provide an effective outcome the first time, maybe it’s time to look a little closer at the problem and reconsider the management approach.

  3. I saw this article and thought you might want to check it out. It outlines the fact that not only is pain grossly under-treated, but the fact that it is a violation of international law.
    http://www.chronicpainrevolutions.com/showthread.php?t=18671

    It is an interesting take on the subject. Perhaps rather than fear for their licenses for prescribing medications, they should fear that they are not only causing their patients harm but violating the morals of the majority of the world.

    Pain treatments are even difficult to attain in Canada we have several months to wait for specialists or pain clinics.

    The problem is world wide and it is good to see that this is getting some attention. As always. Thanks for the great blog and awesome to see you back !

    Take Care
    Nate

    1. Hi Nate
      It’s an interesting idea, that we have the right to pain relief – what do you think this means in the case of chronic pain that does not respond to medication? And there are a lot of people who have this type of pain…
      I’d prefer to think the ‘rights’ should be about effective pain management, with the emphasis on the management rather than relief as a right. Because when you can’t obtain relief, managing life and everything else becomes the next most important thing, and even if you can obtain relief, managing life etc is still important.
      It is a tragedy too when people get more and more medical input that is fruitless and doesn’t help people LIVE. It’s for this reason that I think we need so much more and early input to look at how to live WELL even if we have pain.
      cheers
      Bronnie

  4. I was in a car accident and referred to a doctor who specialized in pain management. What a mistake. He not only gave me meds for the pain but meds for side effects after side effects. I was a walking mummy or maybe dummy. I finally went to a pharmacist to ask how many of the one page list of drugs were addictive and how many could I manage to get by without. I ended up with 5 scrips which I will soon cut back to 4. I didn’t do it all at once or without help to ween myself off but I did it and I want to encourage you to be cautious and take responsibility for your health.

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