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 the ‘MS 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)
….. 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.