#MSCOVID19: moral distress

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Barts-MS rose-tinted-odometer: zero stars

A dear and very close friend of my wife and I tragically passed away from inoperable cancer two weeks ago.  She sadly died alone in hospice with no family members by her side to comfort her. She is one of the many collateral deaths that have occurred due to COVID-19. From the time she got symptoms to suggest her cancer had returned in late April last year, it took almost four months before she was examined under anaesthesia when it was found her tumour had grown and spread to such an extent that it was then inoperable. Three to four months is a long time in the natural history of highly malignant and invasive cancer. The delays in her management were directly due to the COVID-19 lockdown and reconfiguration of oncology services to cope with the first wave of the pandemic. Pre-COVID-19 she would have been seen and managed within weeks and would almost certainly be still alive today; maybe not cured, but with enough life in her to witness her youngest daughter turn twenty-one.  

In cancer the outcome is black and white; survival or death. In MS the outcomes are more subtle and nuanced. How long is too long in the course of a disease that last decades? Saying this I have a collection of patients who I follow when relatively small delays in diagnosis and treatment have major and rarely catastrophic consequences for the individual. Occasionally a spinal cord relapse can leave someone wheelchair-bound or result in loss of bowel, bladder or sexual function. 

It is clear that fewer new patients are being referred to our MS service. Where are they? I doubt COVID-19 is preventing MS. A better explanation is that people are sitting on neurological symptoms that in normal times would prompt a referral to a neurologist and a diagnostic work-up. Even if patients are being referred into neurology services they are being seen and assessed virtually and are waiting for MRI scans, evoked potential and other non-urgent diagnostic investigations. These have been suspended until the current COVID-19 surge settles and neurology staff are de-deployed back to neurology. Even if some patients are seeing private neurologists and being diagnosed with MS outside the NHS they still have to wait to access DMTs on the NHS. 

This is why a commentary in this week’s BMJ on ‘moral distress’ hit a nerve when I read it. Moral distress is ‘psychological harm’ arising when people are forced to make, or witness, decisions or actions that contradict their core moral values. I can relate to the sense of powerlessness and feelings of guilt, shame and anger that are associated with moral distress. These are some of the feelings we neurologists are having when we can’t diagnose and treat our patients with MS in a timely and appropriate way. 

If you are reading this and are one of these people waiting in the COVID-19 induced NHS bottle-neck for either diagnostic or therapeutic decisions about MS, or any other non-urgent problem, you need to understand what your NHS HCPs are actually going through. Unfortunately, there is no alternative but to wait it out and hope that not too much time passes before you get diagnosed and appropriately managed. Writing this is particularly hard for me as I am the chair of theMS Brain Health: Time Matters  steering committee with the primary objective to ‘maximise your brain health’; to achieve this time really does matter

If you have 5 minutes I would recommend you read the full BMJ commentary on moral distress; if not, I have pasted a few excerpts that will give the gist of commentary and how HCPs working in the NHS are being affected. 

Coming back to our friend; the most we can do for her in death is to attend her socially distanced and very delayed funeral and help support her grieving husband and children. It is going to take a long time for us to digest, understand and accept the full impact COVID-19 will have on our society. I am going to be optimistic and predict that we will come out of this pandemic better for the experience; more in touch with each other’s and the environments’ needs, more tolerant, more willing to share the spoils of our education and careers, and a better understanding of the limits and promises of modern healthcare. 

Julian Sheather. Covid-19 has amplified moral distress in medicine. BMJ 2021; 372:n2 (Published 08 January 2021)

Excerpts

….. Simply working harder cannot resolve the conflicts caused by responsibility without autonomy

…… Doctors are accustomed to difficulty, to long hours, high stress, heavy responsibility. The job involves helping people navigate life’s gravest challenges: death and dying, suffering, loss and grief. 

…. But as the profession draws deeply on its resources to respond to covid-19, a new concept is entering the mainstream: moral distress. 

…. Moral distress is psychological harm arising when people are forced to make, or witness, decisions or actions that contradict their core moral values. While exposure to the suffering of others can lead to distress, it is not necessarily moral distress. But if serious and sustained resource constraints mean doctors cannot meet patients’ needs, it can open the door to moral distress. If you know that delays to treatment will likely lead to serious harms, consider the effect of repeatedly being forced to place patients on ever-lengthening waiting lists. Moral distress arises in the gap between what professional judgment dictates should be done and what healthcare systems permit. It is also associated with powerlessness—the impossibility of altering the situation so that professional acts can accord with professional values.

…. Understandably, moral distress has been strongly linked to the psychological harms of combat. The term entered health through nursing ethics: lack of professional agency meant that nurses felt unable to challenge behaviour at odds with their core values. 

…. Typical emotional responses to moral distress include feelings of guilt, shame, anger, and, in extreme form, disgust. If moral distress is sustained it can lead to moral injury—a deeper or more enduring harm that can lead to burnout and psychological trauma.#

…. Covid has highlighted how essential the NHS is to our collective wellbeing. It is beyond time to fund it effectively—and to make clear the costs of not doing so. Until then, all health professionals need support in managing moral distress—before its effects become too toxic.

CoI: multiple

Twitter: @gavinGiovannoni                                    Medium: @gavin_24211

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

9 comments

  • Sorry for the loss of your friend. During this pandemic I too have lost friends and family to both Covid and cancer. I have seen a worsening of my MS and had telephone consultations. Unfortunately it’s not safe to have any treatment. I’ve had two diagnostic procedures cancelled for problems connected to my MS. I’ve been shielding and spent Christmas and New year alone. Recently I had an urgent referral to my local hospital that is overwhelmed with Covid patients. In consultation with my GP I have decided not to accept the appointment until I’ve at least had the vaccine. All these decisions have not been taken lightly, but a sensible discussion with doctors I trust have helped. I know the risks, not everyone dies of cancer and not having a DMT is not a guarantee of permanent harm. As I sit at home listening to ambulance sirens(I live nowhere near a hospital) thinking of the thousands of people that didn’t make it.

  • Thank you for posting about what some of us have suspected must be happening in healthcare. So sad and frustrating to hear about your friend, and knowing that things could have turned out differently if prompt treatment had been possible.

    ‘It is beyond time to fund it effectively’ – Absolutely – how to achieve this? Surely the pandemic has shown how incredibly valuable the NHS is to the whole of society.

    • ‘It is beyond time to fund it effectively’ – Absolutely – how to achieve this?

      10 years of chronic underfunding has left the NHS on its knees, yet it continues to outperform the expectations placed on it. The simplest remedy to putting the NHS back to where it was pre 2010 is to consider how you vote next time.
      Simples.

  • Charlie Mackesy has provided a number of illustrations thanking the nhs but the one that resonates with me the most is the one with the mouse saying there isn’t enough cake to say thank you as a clinician is squatting with their head in their hands.

    One of my sense of overwhelms with the pandemic is the impact on nhs staff in a country that appears to have sifted from clapping for our heroes to ‘ok I’ve had enough of this now’ Of course, the deaths both Covid and others we are all experiencing is the other. I’m therefore so sorry this includes your friend ProfG!

    Although I have NEDA and am stable with my symptoms, it is still an insidious anxiety I haven’t been able to shake off that I’ve not had any communication from my ms nurse since last February. I am emailing her once every three months to confirm I’m not seeing any side effects from having had Alem, but it makes me feel unease to be in this vacuum. Added to which I’m due my annual mri and have heard nothing. This generates a disconcerting mix of feeling that it’s fine because of what the nhs is dealing with alongside wishing I could have it as usual.

    I can therefore only begin to imagine what it must be like for those waiting on diagnosis and treatment.
    Added to which there’s the pressure clinicians will be under to crack on and get on top of waiting lists at a point they will most be needing some time to recuperate!

    I’d also add that sadly there’s the fact that this combination has the capacity to undermine the onset or reestablishment of positive clinician and patient relationships – the potential for two depleted, haunted, anxious and angry people coming together.

    • Bugger…Thank you so much for reminding me. The mouse is also saying thank you to COVID-19 the number of animals used in research tis year will have plummeted we are down over 95% I need to get Home office returns done…I’ld forgotten

  • “The simplest remedy to putting the NHS back to where it was pre 2010 is to consider how you vote next time.”

    I am so sorry for your loss. Friends who work for the NHS have been saying for years how starved of funds it is. Surely after all this there will be better recognition of what a valuable service it is and the public will support calls for better funding?

    • Better funding and also spending money better. You hear so many stories from healthcare workers of massive wastage all the time. Also should so much be going externally to private services? I don’t know enough about it to comment properly and it’s way too complex anyway, but surely this is more expensive in the long term than investing in services within the NHS itself. It all reminds me of that guy who started Babylon health – Ali Parsa
      https://en.m.wikipedia.org/wiki/Hinchingbrooke_Hospital
      What an absolute sh*t show that turned out to be. Though I think that was when Gordon Brown was in power.. maybe deal done when cam/clegg..
      seems they’re now building super hospitals in China… I digress.

      To the original post – i am sorry for the loss of your friend. Surely as humans with our politics aside we can all agree that this is no way to run things going forward in this country post pandemic. Our society has to fight for the healthcare system we want without putting our citizens in this position time and time again. Moral distress would be an outrage in any other profession. I don’t think it would be accepted, so why with public health workers?

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