A month in primary care with Coronavirus: sudden death, end of life discussions, lockdown and inequalities.

Timeline

Like most doctors I hadn’t been paying much attention to COVID-19 until last month.

Wednesday March 11th – WHO announced that there was a ‘Pandemic’.

March 12th I saw a tweet from Prof. Trish Greenhalgh urging us to read, ‘Coronavirus: Why you must act now’, by Tomas Pueyo. The potential disaster became suddenly clear. I sent it to my GP partners at work and one replied, “then we’re done for”. https://medium.com/@tomaspueyo/coronavirus-act-today-or-people-will-die-f4d3d9cd99ca

In 2009 during the H1N1 flu, a public health consultant came to our practice and described a potential situation so utterly catastrophic that we sunk into a collective state of hopelessness and despair for several days. We blocked out any thoughts of pandemics from then on.

Friday 13th I called a consultant foot surgeon about a patient I was worried about. He said that all his clinics had been cancelled until further notice. I asked him what he was going to do. “Play golf!” he replied cheerfully. Now I like to imagine him redeployed to assist nurses in intensive care for 13 hours a day.

That same day I emailed my sons’ cycling club to suggest they called off the session the following day but they replied to say that they were going to carry on, in line with government guidance. Cheltenham festival was still going ahead after all. It was a harbinger of what was to come. That hard choice between following government guidance or doing your own thing. When you’re dealing with large groups of people – 140 kids in a cycle club or 52 employees split across 2 GP surgeries, you need clear guidelines and operating procedures. And where there is usually just one government guideline there are a multitude of feasible alternatives and a consensus can be hard to find.

Saturday 14th Our next-door neighbour told us that a teacher from our son’s school whose son had been staying over with her children and ours a few days before, had been diagnosed with coronavirus. We looked at our snotty children and thought about the number of times we had kissed them in the last 24 hours and realised that it would be impossible to avoid catching it ourselves.

Sunday 15th In the evening after work I felt vaguely unwell with chest tightness, sore glands and a cough. I couldn’t tell if it was psychosomatic. I’m a poor diagnostician when it comes to my own symptoms. A few years before my psychosomatic illness turned out to be an appendix abscess. I called work to say I planned to stay at home for a week. For the sake of my colleagues and my patients it was better to err on the side of caution.

Monday 16th I arranged to stay in touch with my two trainee GPs by phone and video. One called me at lunchtime about a man in his early 60s who worked as a hospital porter. His wife had called because she was worried about him; he was tired, nauseous and couldn’t get out of bed. No cough, no fever, no chest pain, no past medical history, not on any medication, hardly ever gets sick. I suggested that my trainee ask if he, or rather, his wife, would be happy to postpone a visit but have a follow up phone call the following day. When she called back, his wife was in a state of panic – “Come now! He’s going blue!!” The paramedic arrived at the same as my trainee, seconds after he had a cardiac arrest. They tried to resuscitate him with several rounds of CPR but he didn’t survive. My trainee didn’t even have time to put on any protective equipment. We couldn’t prove that he died because of coronavirus but we couldn’t put the possibility out of our minds.

Since then we’ve learned from personal experience and published data, that men in their late 50s and 60s are dying disproportionately and that sudden deterioration at around day 10 of the illness, with an acute worsening of fatigue is an ominous sign. Half my colleagues are men in their 50s. Many of them, because of their experience, are offering to help in the most hazardous places.

Conversations about the end of life

Last week I spend two days calling my most vulnerable patients and their carers to discuss what they would want if they caught Coronavirus and were sick enough to need hospital treatment. Some of them know what it is like to survive a cardiac arrest and ventilation and some of them would be willing to go through it again. If you are relatively well to begin with oxygen therapy might be all you need, but most people understood that the chance of surviving a cardiac arrest bought on by infection with coronavirus in an already frail body would be negligible. “I’ve had my life doc, let them save their ventilators for people younger than me”, said one woman, who is not much older than I am. If I had overwhelming infection and multiple organ failure I wouldn’t want or even expect my colleagues to try to resuscitate me. Not only would my chance of survival with any quality of life be unacceptably low, but the risk of infecting those treating me would be unacceptably high. We are supposed to have the right to refuse any reasonable treatment, but the problem is that CPR is so often performed when it is completely unreasonable, in people whose hearts have stopped because their bodies are too weak for their hearts to keep going. The refusal of CPR is a reminder to professionals whose reflexes are trained to save lives first and think later, that a peaceful death is possible and preferable.

Some of my patients wouldn’t want to go to hospital under any circumstances. We talked about what critical care might involve – oxygen might be enough. Home treatment with oxygen might be an option, but not just yet. For sons and daughters caring for elderly parents, the greatest worry was who would care for their parents if they themselves got sick. I put a note ‘Patient themselves providing care’ on their records to alert anyone that might treat them in an emergency. I promised to help anyone who chose to die at home.

I’ve never experienced so much gratitude as I did in those 2 days of conversations about serious illness and care at the end of life. It helped enormously that we had nearly 20 years of continuity of care before we talked.

Poverty and inequality

We serve a relatively young, deprived, multi-ethnic population in Hoxton in London’s East End. People in their 50s suffer a burden of diseases like heart disease, lung disease, obesity, diabetes and cancer, that people in wealthier areas don’t experience until they are in their 70s. All of these increase their risk of dying from Coronavirus. Lockdown hits them harder too. Childhood poverty is around 40%, twice the average for England and deprivation for older people is more than three times the national average. Many of my patients work as carers, cleaners, on public transport or on checkouts, shop floors, bars, cafes and warehouses.

In the last month we (my family and I) have been fortunate enough to distract and soothe ourselves by baking, gardening and exercising in the forest or in the garden and streaming movies. Life is different for most of my patients.

  • Isolation and overcrowding

I look after a family with four children between the ages of 3 and 16 and two adults in a two bedroom, 5th floor flat. One of the children is disabled and autistic, one of the adults is addicted to heroin and alcohol. There are countless variations on this theme of overcrowding, disability, mental illness and addiction.

  • Violence and abuse

Up to 10% of my appointments used to be spent with people suffering anxiety and chronic pain and for many of them it was related to living in fear. A trip to the doctor was an excuse to come to a place of safety and spend time with someone kind and attentive. We didn’t need to (and often couldn’t) talk about what was going on home. I haven’t seen any of these women in weeks. I haven’t had any reports to complete for social services about children at risk. I don’t know if they have safe places to go, or if anyone is looking out for them if they’re not seeing anyone outside the family home.

  • Digital hardware and data (streaming/ video/ phone-calls/ internet)

At home we’re online all the time. We pay for unlimited wi-fi. But many of my patients are on pay-as you go data contracts and regularly use up their data just waiting for calls to be answered, never mind Netflix. Some cannot use a smartphone or a computer. Some are illiterate. Some of them run up huge debts with multiple phone contracts. Video consultations with your GP are now commonplace, but the more I do, the more I worry about the people we’re not hearing from.

  • Bulk buying without a car/ money

We are very well served with local shops where I live in Leytonstone and can get all the fresh produce we want. But supermarkets are being stripped bare of essential produce by people whose cars and wallets are big enough, leaving only scraps for people who live one day or one week at a time, who have to walk and carry everything home. They need to get out more frequently, walk the streets and wait in queues.

  • Access to green spaces

At the weekend I rode my mountain bike in Epping Forest at sundown. It was beautiful and social distancing was easy. My sons played on the grassy flats at the end of our road. We cooked a barbeque in the garden. At work I spoke to a woman with a eight year-old daughter who has ADHD and anxiety. They live on a 8th floor, north facing flat without a balcony. If they want to go out they have to take a lift or walk down a narrow stair case where social distancing is impossible. Victoria Park, the biggest park in Hackney, has been locked shut for weeks because of adults hanging out in crowds. I know parents with young kids who have barely been outside for a month.

  • Physical distancing

I cycle 9-10km to work every day. It’s easy to keep my distance and stay fit. I have a job that I enjoy, that pays well where I am surrounded by supportive colleagues. We moved rapidly to a mixture of telephone and video consultations and home working, physically isolating ourselves from our patients.

Many of my patients work in jobs that demand travel and human contact –they are carers, cleaners, bus-drivers, shop staff, teachers, nurses, midwives and pharmacists. Most of them depend on public transport to get to work. They are having more far more face to face contact than I am having as a GP and while I have all the PPE I need, many of them have little or none. Analysis of location data from US cities shows that the wealthier you are the sooner you are able to isolate and the more likely you are to be able to work from home.

See https://www.nytimes.com/interactive/2020/04/03/us/coronavirus-stay-home-rich-poor.html

  • Social contact

No social contact may preferable if your main concern is contagion, but it is still a basic human need. My sons haven’t hugged me so much in years. They want physical reassurance and closeness, more than explanations or soothing words. When staff have been unable to come into work because they’ve had symptoms or been in contact with someone who has symptoms (none of us have been tested) they have all been desperate to come back and be around their colleagues. Before Covid-19 many of our must vulnerable patients rarely left home except to see their GP or practice nurse. Being physically present with someone with whom you feel safe and cared for is something too many of us take for granted. Cautiously I’ve allowed some of them back. We sit with our masks on at opposite sides of the room. One woman I look after, who has already spent weeks in intensive care two years ago and is on the high-risk shielding register asked me to come around to have lunch with her. Her son died just a few months ago, “You know me doc, I’m not afraid to die”.

  • Precarious employment

I have friends who work in hotels, building, catering, and others who are musicians and artists who have all lost their jobs. Many of my patients earned too little to save and are now without work or money. They are dependent on universal-credit and the kindness of strangers. They may have enough to eat but you cannot live on food alone. We don’t know how long this will last or what jobs might be there when it’s over.

  • Social capital

I can depend on friends and family, most of whom are as fortunate as I am, to help me out – practically, financially and emotionally. Like most of us, in our socially divided country, we are surrounded by networks of people whose circumstances are similar. Often, I am the only professional person my patients know.

  • Meaning and purpose

Working in the NHS – being lauded on the news and being clapped in the streets every Thursday evening and thanked all day is something I’ll never forget. We’re taking risks, but despite the overused analogies of war, it’s in no way the same as being in an actual war-zone with explosions going off and bullets flying by. We’re not dealing with the bodies of children who have been maimed by landmines and we’re not getting shot at on the way home. What we do have, now more than ever, is a sense of meaning and purpose combined with public outpourings of appreciation.

All of this is on a background of 10 years of austerity in which the welfare state has been stripped back and public health funding has been stripped bare. The NHS has barely recovered from the most shambolic re-disorganisation by Andrew Lansley in 2012, followed by 8 more years of underfunding. We have seen a rise in insecure employment, and a massive distraction with Brexit which has fuelled a breakdown in social cohesion and undermined public trust in politicians and experts at a time when we need them more than ever.

How will we recover?

We have learned that the NHS can change very quickly when driven by clinical leadership and patient needs. Resistance to Lansley’s disastrous market-oriented NHS reforms resulted in a backlash of criticism accusing the NHS of being intrinsically resistant to change and indifferent to patient needs. Now it has been found to be fleet-footed when the people that work there can see that that they are serving patients and not political vanity or private profits. We’ve been allowed to decide for ourselves what’s most important. In general practice we have rapidly taken up telephone and video consultations and we have concentrated our efforts on the interventions we know make the biggest difference – proactive care for our most vulnerable patients, immunisations for children, primary and secondary prevention of cardiovascular disease and better diabetic control. We have stopped the arduous and pointless CQC inspections, GP appraisals and NHS health-checks. We are talking to each other more than ever about patients we’re worried about and getting second and third opinions about complex decisions.

In the last month we have become better connected with community organisations than ever before. Far more of our patients depend on social support than will ever depend on medical care. Long may this develop and continue.

 

Further reading

To protect population health it will be essential to avoid a further period of austerity and the associated reductions in social security and public service spending. Instead we must build a more sustainable and inclusive economy. British Medical Journal 27/04/2020 https://www.bmj.com/content/369/bmj.m1557

A bioethicist at the heart of the Italian coronavirus crisis asks: why won’t we talk about the trade-offs of the lockdown?

https://aeon.co/essays/a-bioethicist-on-the-hidden-costs-of-lockdown-in-italy

 

 

 

16 responses to “A month in primary care with Coronavirus: sudden death, end of life discussions, lockdown and inequalities.

  1. Another great post, though hard to read it is better to know how it is than hide from the knowledge.That last paragraph says so much -I hope you and your colleagues will be able to hang on to this realization, and i hope everyone in NHS will be able to offset the disastrous attempt to make the service market oriented. Structure should match function, now even though it is a crisis time, you are all functioning. May you keep well too.

  2. Lovely words, and your life is very busy, unlike mine!

    • I m a recently retired DN .
      I can relate so much to this article .
      Very accurate description of lifestyles in many community settings.
      Not everyone has the luxury of a garden or the ability to get out for some fresh air and excercise.To get to an adequitely stocked shop isn t always an option if the nearest supermarket is 3 miles away.
      So many people have lost their income (with the uncertainty of their future ) .
      Even in a fair, well balanced ,loving relationship, the ability to become fraught with your partner or family is very real. It must be dreadful for people who are in coercive or abusive relationships.

  3. I don’t why I am blown away by this, but I am. Practically my whole family are frontline key workers mostly in the NHS. Including son in ICU who only got PPE and testing last week after 2 weeks off very sick. With a new born. And including me working in a hospital setting seeing those we must support face to face.
    I try look to the future and think how do we take any positives out of this but couldn’t articulate as well as you have done. Thank you.
    The pushing away of the can’t do attitudes because management systems say no has been a welcome culture shift. Long may it last.
    But the digital possibilities v. Understanding just how many cannot access a phone let alone have data is so hard to get over to professionals. This app reliant world also excludes. Most of my clients don’t even have an android phone if they have one at all. Poverty comes with debt and debt stops you getting phone contracts, wi fi and the gadgets needed if they are even able to use.
    And no one is following these people up. The safety net isn’t there. Destroyed by austerity and now it shows. I hope professionals remember this when we are past the worst. This is the way forward for some. Not for all. You can’t assess and support someone if you can’t contact them.
    I too feel a sense of pride when my street claps and makes noise for us. Immense pride how ordinary people have self organised. But I also know that awful things go on beyond closed doors from the loneliness and isolation of the elderly who know they are not priority for ventilation so dont call anyone through to the woman terrified in a domestic abuse situation who has no outlet or safety space now to those with pre existing MH conditions whose services have stopped completely and no one but no one will pick up. Where an app just won’t do.
    The incessant chatter about how we can stay in contact online can grate when I see and know so many who cant. Even when I know these are the platforms the community groups who have sprouted up amazingly have used so well. I feel guilty for even feeling this.
    We talk about the incredibly sad deaths of those with covid .But the collateral deaths of those for whom the destruction of the welfare safety net left them so so vulnerable, who is talking about these? GPs are probably the only health professionals who will know.
    Like you, as someone still seeing some patients and having had very little PPE for so long, I want to protect them, keep them safe but can’t. We can’t fix the breakdown of essential services. They can’t wait for the normal to return. A normal that left them behind in the first place.
    Do I feel like NHS frontliners such as my son in ICU have been used as cannon fodder ?Absolutely. 2 of his team have died. But I also feel decisions were made a long time ago that so were the most disadvantaged in society.
    Thank you. From the bottom of my heart.
    .

  4. You, Sir, are a great human being (out of very few, I’m afraid) while being a doctor! ❤

  5. Thank you.
    Roger Gartland.

  6. Well said, Dr Jonathon. I normally work overseas with Medecins Sans Frontieres, but I’m helping out at an inner city general practice in Leicester during the coronavirus restrictions. Your blog strikes a chord but I dread to think how this pandemic will affect deprived populations in Sub Saharan Africa or refugee camps in Greece or Bangladesh. Courage, mon brave.

  7. Jonathon, I love your social conscience and your work ethic. You haven’t changed and I hope you never do. I can tell you’re troubled so promise me you will do lots of self care and self love. Take care and we are all thinking of you trying to fight this hideous virus.

  8. One of the most direct and humane articles I’ve read in weeks, so relevant to what’s going on now. Thank you.

  9. Weep for the poor…
    as someone has already said, social distancing and self-isolation are a privilege for the rich
    Thank you for great insight

  10. The selfless commitment to care to which you allude in others around you is something I am seeing in our hospital in all sorts of people. The frightening burden on those least equipped to carry it is so well described here. A really helpful and reflective piece. I’m not medical yet classed as a key-worker, but am also supposed to be self-shielding. Mega-conflicted!

  11. A very enlightening and emotive piece. We can only hope real lessons can be learned from this time and compassion becomes the driving force in our society. How truly terrible it has taken a pandemic to pull our communities together. Those hypocrites of politicians who clap in appreciation of our NHS on a Thursday night should hang their heads in shame – there is no place for austerity measures for this institution which is the envy of the world. Physicians and everyone in a caring occupation, where would we be without you? I want to live in a country where everyone feels valued and is able to have not just a minimum wage or a living wage, but a decent wage and where the difference between the haves and the have nots is ever decreasing.

  12. As a primary care research nurse I have some insight into the people/patients you serve both as a GP and via this article in terms of your excellent exploration of the situation of the worst off in society, which you highlight so well in this honest and eloquent article. Please keep well and keep doing the essential work of treating and caring for your patients – you and many like you are what keep us all going right now, the best of humanity doing hard and courageous work with the most vulnerable. You’ll never know the real difference you make.

  13. These is the most honest and intelligent thing I have read on social media. Refreshingly honest and gut renchingly sad at the same time. Thank you.

  14. Elizabeth Stokell

    Very interesting read and far more enlightening than anything the government has said or reported. You’ve touched on the lives of everyone in the country in this blog and reminded the lucky ones of just how lucky we are if we escape this virus unscathed. Thank you

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