Moral distress
Imagine the frustration and inner turmoil of being caught between what you believe is right and what you can do, given the current constraints on the NHS.
As a senior clinician, I always tell my mentorees that they have to engage in politics. Health, however, you measure it, is one of the best metrics to judge political systems. Currently, the UK and several other countries are not doing too well. Whether you are looking at infant, maternal or disease-specific mortality, obesity and other lifestyle-related diseases, preventable infectious diseases, poor-health-related unemployment rates and longevity, the UK is doing badly given its relative gross domestic product (GDP). Using these metrics, the US also does poorly.
The poor overall performance of the UK on health metrics, and by implication, the NHS, will almost certainly apply to the care of people with multiple sclerosis (pwMS). Caring for people with MS doesn’t take place in a vacuum; it is embedded in the healthcare system as a whole. If a healthcare system fails, it tends to fail everyone. Improving health outcomes requires political intervention and leadership.
When my colleagues and I noticed the first signs of deterioration in MS care about a decade ago, we set up several initiatives to address these problems, with some of the exemplars being ‘MS Brain Health: Time Matters’, ‘Raising the Bar’, PROMS, the MS Care Unit and ‘Improve access to MS treatments’. Due to the COVID-19 pandemic and an unfortunate accident in which I sustained polytrauma with the need for prolonged rehabilitation, I had to withdraw from all of these activities except MS Brain Health. Although some of these initiatives are ongoing, they have not been able to improve MS services in the NHS substantially. On the contrary, many MS services have deteriorated. As a result, many MS centres are now looking inward as a survival strategy. They refuse to take out-of-area referrals and discharge out-of-area patients back to their local providers.
Several MS neurologists I know well describe a form of moral distress. Moral distress is psychological anguish experienced when a healthcare professional (HCP) feels they know the ethically right course of action but are prevented from taking it due to internal or external barriers. Imagine the frustration and inner turmoil of being caught between what you believe is right and what you can do, given the current constraints on the NHS.
Restricted resources, perverse institutional policies, pressure from management, and witnessing or participating in unethical practices contribute to moral distress. Regarding MS, the latter consists of outdated, very restricted prescribing guidelines, inadequate supportive care and disparities in care. Many of us have witnessed patients receiving different levels of care based on their socioeconomic status and where they live (postcode prescribing).
Many neurologists feel powerless to advocate for their patients because they cannot challenge managers' and senior staff's decisions. There is also a pervasive fear of repercussions. Speaking up against perceived wrongdoing or becoming a whistle-blower can sometimes lead to fear of retaliation or damage to one's career.
A colleague working at a large teaching hospital was ostracised by his managers for speaking to the press about how he was forced to manage one of his patients with MS in a way he deemed unsafe. Thankfully, he won the day, and a process has been implemented to rectify the situation.
Moral distress can have serious consequences for doctors, including burnout, compassion fatigue or indifference, and an increased risk of medical errors. This is one of the reasons why many doctors are leaving the profession. Many of you may have detected signs of moral distress in the HCPs caring for you. If you have, you can help the NHS address it. I see no reason why a group of patients at a particular MS centre can’t form a group to support their HCPs. Potential strategies for addressing moral distress at a systems level include.
Open communication: the NHS needs to foster a culture where HCPs and patients can openly discuss ethical concerns without fear of retribution.
Ethics support: The NHS needs to provide access to ethics committees to allow HCPs and patients to navigate challenging situations.
Empowerment: HCPs and patients need to be given more autonomy and a voice in decision-making processes within the NHS. Central diktats are part of the problem.
Support systems: Resources like counselling and peer support groups must be available to help HCPs cope with moral distress.
Recognising and addressing moral distress can help healthcare institutions create a more supportive and ethical environment for patients and those who care for them. However, the elephant in the room is the politics of healthcare and what needs to be done to change how we configure and run our healthcare systems.
I plan to share many ideas with you in the coming months. Are you interested in these sorts of newsletters? As consumers or users of healthcare, how the NHS and other healthcare systems are configured and run are central to how MS and related disorders are diagnosed and managed. Clearly, the NHS is at a crossroads and needs to rapidly change its approach to managing chronic diseases. The ‘same old’ will not deliver the step change required to improve things with fewer resources.
Have you seen signs of moral distress in the HCPs caring for you? Or at least some of the symptoms that underpin moral distress, such as burnout, compassion fatigue, indifference, medical errors, or any other problems that impact your care? Do you have suggestions on reconfiguring healthcare systems to address these issues? Thank you.
For some initial thoughts, please see ‘Saving the NHS for people with MS’ (20-Sep-2024).
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General Disclaimer
Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Queen Mary University of London or Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.
I was dismayed recently to be told in MS Clinic that MS DMT was ‘usually’ withdrawn at age mid to late 60’s. Based on what I don’t know. Every request for availability of treatment in the NHS is exhausting. Questions, questions, questions. We are left to our own research, podcasts (no complaints about this one 🤩), options and side effects of various treatments, that’s if they are even available to you. I feel I was treated very late. 7 years post first diagnosed attack (CIS until second relapse) how different my life would have been with earlier intervention.
I’m so sad to read this. Those of us that are service uses can’t fail to see it. GPs retire before they would want to, exhausted Nurses in the surgery. I felt guilty recently when the Nurse Practitioner looked as unwell as myself, different reasons but exhausted. The system is burning HCP out. My sister is an area manager in Private nursing homes. She was recently telling me how long a patient who suffers injuries such as broken leg bones has to wait for an ambulance. Around 18. The homes have invested in a type of blow up mattress to surround the patient and it lifts them of the floor. They now have permission from NHS to put an IV up. These would be care homes as opposed to Nursing where they can do this. My sister looks exhausted from the stress. These residents become extended family. There seems little consideration on the impact on HCP. From the NHS seniority and Politicians. Then the politicians wonder why the numbers of unemployed due to stress is so high. Wes Streeting needs to put his big boy pants on and get his so called changes moving.