|Twitter debate: On Thursday 16 April we held a twitter chat discussing the wider health impacts of the covid-19 pandemic. Read the discussion at #BMJdebate and let us know what you think by leaving a comment to this article or sending us a tweet using the hashtag #BMJdebate Twitter: @bmj_latest
The opinion piece below sets out some of the key themes of the debate. You can read a further list of comments at the end of this piece.
I get a call from the daughter of an old friend. She is choking back tears.
“Mum’s in hospital, and she has just rung to say she’s been told she has cancer on the lung and there is nothing to be done. They can’t do tests because of “corona.” Dad and I are desperate to visit her but it’s not allowed.”
Three weeks later, the picture is clearer. After a stressful few days in hospital during which “Mum” was moved from ward to ward, told different things by different doctors, and at one point challenged to explain “why on earth” she had been admitted (a decision by staff in the emergency department, triggered by a radiological alert about an abnormal follow up X ray) this active 58 year old lady is back at home.
We talk. She gives me a blow by blow account of her recent experience and the shock of an unanticipated diagnosis. I ask how she is feeling and what the next steps are? “Not bad,” she says. “I’ve been told a doctor will be in touch about a possible biopsy which may have to be on the liver, not the lung.” She is being characteristically stoical. The family are worrying about diagnostic delay and uncertainty around treatment options.
With services stretched responding to high and predicted demand for care of patients with covid-19 there is increasing concern about the wider health impact of the pandemic. Disruption of “normal” services is affecting many, particularly those with chronic conditions and cancer, patients waiting for planned surgical operations including organ transplantation, and others in need of prompt assessment, investigation, and treatment. A recent feature in the Financial Times was entitled “Empty beds prompt fears for non-Covid cases“ includes reference to the 30% fall in A&E attendance rates in NHS hospitals due in part, it is suggested by people who need urgent assessment delaying seeking help. Shortage of medicines are reported and not only on intensive care units. Steroid inhalers are one example, hydroxychloroquine another; although the merits of hydroxychloroquine as treatment for covid-19 are unproven and trials only recently launched, alongside hundreds of other trials exploring new possible treatments.
As uncertainties and gaps in the evidence to inform the political decisions continue to be aired, debate on “lockdown” policies has escalated. The sudden loss and falls in people’s income are having a disproportionate impact on the poor. The UK Food Foundation reports rising levels of food insecurity and the impact on mental health, and domestic violence is provoking much concern. Looming high for all is the mind boggling scale of the damage to countries’ economies. Damage, which is closely intertwined with health and social impact, and where the cost of recession will be felt most by the young.
Solidarity among uncertain trade offs
As countries struggle with implementing their policies to combat covid-19 it’s still not entirely clear which are proving most successful, how best to mitigate the adverse impacts, and what “exit” strategies to pursue and when. While attempts are being made to learn from different countries approaches, comparisons are hard and trade-offs contested. Some believe that lockdown may risk killing more people than it saves.
As citizens in most countries follow the emotionally charged covid 19 media coverage, which may itself be having an adverse effect on public health, the case for solidarity on shielding, social distancing, lockdown, and increased surveillance has largely been accepted. And few have pushed the solidarity message better than the Queen. The call for “international solidarity (not isolationism)” is also being heeded in some quarters.
Meanwhile, action being taken by patient advocates, patient organisations, voluntary, and civil society groups has been swift and equally passionate, if less eye catching. They have provided information and authoritative guidance for their communities and other forms of support.
The European Lung Foundation, for example, is running Q and A sessions. UK based charities have also been quick to point to flaws and inconsistencies in the government’s definition of who counts as a “vulnerable patient” The umbrella UK organisation National Voices has issued a strong call for continued commitment to human rights and equality. It’s also drawn politicians’ attention to the fact that independent charities, including hospices, have suffered sudden drops in staffing, revenue (and non covid 19 related research budgets resulting in services being scaled back at a time when demand is high. Clarion calls for patients and the public to be involved in decision making on what policies are “in the public’s best interest” have been issued. The initial NICE guidelines on admission to critical care, omitted their input, but were subsequently modified as a result of patient and public feedback. As research related to covid-19 escalates the importance of including their voice in this agenda is underlined too.
Arguably, the voices who most need to be heard are the frail and elderly. Chronological age might not be the best indicator of survival, but frailty and pre-existing multiple conditions seems to be. Hospitals are not where most wish to die. It seems likely that given the option—although it seems that at present this option is open to few—most would prefer supportive, and where needed palliative care at home or other community settings. The accounts of patients dying alone, in hospital and care homes without family at the bedside are harrowing, and video links surely not the answer.
Despite the unprecedented challenges, person centred care and shared decision making, outside as well as inside hospitals remains as vital as ever. Trust matters and clarity about low survival rates and the risks as well as benefits of intensive care for covid-19 is needed, and the scale of excess deaths it’s causing over expected deaths, based on previous annual data. The ethical dilemmas must be discussed openly too. Confronting mortality is not easy, and society has got out of the habit of doing so, but sensitive discussion and advanced care planning for those whose life expectancy is known to be short makes sense. And it also makes sense for many more of us who are currently well, but over 70, or not far off, to make these plans.
Assessing the impact of the pandemic
Full assessment of the wide health impact of the pandemic won’t be easy and will only become apparent over time. Hospital deaths dominate current headlines, but primary care doctors are reporting “fallout” too and beginning to share information about it. The European Forum for Primary Care has set up weekly webinars to air what it terms “collateral damage due to covid-19.” At one I joined last week, a GP asked, “what data should be we collecting?”
It’s a good question. The quantitative data that health systems are collecting will provide a lot of information but they won’t capture the full impact of the pandemic. And as ever, data will be least well captured from poor and marginalised communities and low income countries, which are set to bear a disproportionate burden of the pandemic. The bodies on the streets of Ecuador, may be counted, but what about the impact on families and the lives of other dependents? And on countless others who were already struggling to afford or get access to the care they needed before the pandemic swamped their health systems? Those who fall prey to opportunists pedalling fake products and cures? And what of those who have borne the brunt of punitive lockdown policies?
Qualitative data, narratives, surveys, and online feedback will also provide valuable insights. Vivid accounts from junior medical staff working at the front line of healthcare have already caught attention, as have reflections from senior doctors. Patient organisations are encouraging people to post their experience on their web sites, mainstream media are doing the same, and some dedicated platforms are being set up to collect feedback over time.
The BMJ’s policy to co produce its content with patients and the public has already spurred patient advocates to share illuminating early perspectives of the impact of the pandemic. We invite others and comments to this article. We also warmly invite wide participation in a twitter chat we are holding on 16 April 2020 at 5.00 pm (BST) to extend the accumulating feedback into the impact of the covid 19 crisis. Follow the chat using the hashtag #BMJdebate.
Although much is adverse and worrying, not all is negative. Many have noted positive environmental change and the rapid move to use online, phone, and video interaction to replace face to face exchange, although it’s highlighted the digital divide. Reports of innovation and improved collaborative team working are also heartening. As health professionals and others at the frontline of care are drawing on their courage and resourcefulness, patients and the public are too.
But courage and resourcefulness can only go so far. Unmet needs for support, timely assessment, care and treatment, including for patients like “Mum,” are all too real, and growing.
|Twitter debate: Join us on Thursday 16 April at 5pm (BST) for a twitter chat discussing the wider health impacts of the covid-19 pandemic. Join the debate using the hashtag #BMJdebate Twitter: @bmj_latest|
Tessa Richards, The BMJ
Competing interests: TR has adrenal cortical carcinoma
Patient consent obtained