Tag Archives: harm

Critical care

I was one of the lucky ones this year and was not working on Christmas Day. After my shift on Christmas Eve I fed the cat, packed up the car with presents and headed to my brother’s house. Waiting for me was a glass of mulled wine, and a hug. Christmas Day was lovely and it was with a heavy heart that I left my family and battled the driving rain in order to get back to London for my night shift on Boxing Day. My feelings of dread were not misplaced: the shift was tough. But most of my shifts have been tough of late. I am in the midst of a six month rotation on ICU (the intensive care unit), having left the familiarity of the acute medical ward and the outpatient clinic, replacing them with a world of ventilators, alarms and intense emotions. I am used to hard work, but I find intensive care physically and emotionally exhausting. It has taken me by surprise just how difficult it is to get through the weeks and I have begun to realise that this is primarily due to a concern that not everything I am going is ‘the right thing’.

Clinicians in Intensive Care Unit

I spent a large proportion of Boxing Day night with a single patient. He was intubated and ventilated when I met him, so I found it difficult to engage with him as anything more than a body in a bed – a constant challenge for me on ICU. I spent the night watching his organs fail and escalating his treatment: I performed fluid challenge after fluid challenge; added inotropes and vasopressors and maximised their doses; corrected his electrolytes; gave bicarbonate in an attempt to improve his acidosis; watched his urine output fall to nothing and started haemofiltration. He did not improve. During the day shift whilst I was at home asleep he had a cardiac arrest. CPR was performed which led to return of a pulse. I returned and continued to try to fix his physiology, but it was futile. We all knew it. He died attached to machines and monitors: oedematous, battered and bruised. It is not a death I would wish on anyone. He had presented with an acute problem which warranted aggressive treatment but as all treatments failed it rapidly became clear he would not survive. And yet we continued. And performed CPR. And still continued. I do not know what he would have wanted, but this is not what I or his nurse wanted.

He was not the only patient I felt uncomfortable about that night. As I proceeded around the ward, inserting needles and lines, changing ventilator settings, sedating and paralysing those whose numbers were wrong, more than once I did so with gritted teeth. Many of my patients had not arrived in ICU after a sudden unexpected event like a stabbing or a car accident, but as the result of chronic disease and advanced age. More than once I asked myself whether I was saving lives, or prolonging death.

I am sure my unit is no different to any other. I am also aware that I rarely see the results of good outcomes. Some patients do make near-miraculous recoveries. Patients with severe head injuries leave the unit alive and breathing but unable to speak or walk – I do not see them after months of rehab when they are leading happy, productive lives. I also know that many of the senior physicians are expert is discussing limits of care, realistic prognoses and withdrawal of invasive treatment. But these conversations happen too late. Too many patients with chronic disease arrive in ICU without ever having considered what they would want if they became severely unwell. Too few people understand what ICU is, and what can and cannot be achieved by expensive machines. Too few people express their wishes in advance, and so the default is always to treat, treat, treat, and when there is no hope left, treat some more. A quote from Atul Gawande’s book from an ICU physician sadly rang true when she complained she was running “a warehouse for the dying.”

In this context it was with great interest that I read a number of studies into ‘moral distress’ suffered by ICU staff. Moral distress is described as the angst of feeling trapped between “what people think they ought to do, and what they’re compelled to do.” Moral distress is studied to a greater degree in nurses, and is perhaps more common in nurses than doctors, due to perceived powerlessness in the hierarchy. It is recognised that moral distress is a complex phenomena, dependant not only on an individual’s beliefs, but also the context in which he or she practices and the support structures that exist. A number of factors are contributory, including end-of-life controversies such as inconsistent care plans and families demanding that aggressive treatments are initiated or continued when all hope for recovery is gone.  Perceptions of futile interventions were highly correlated with moral distress, and increased with duration of experience in ICU.  Reading these studies was reassuring, as others experience the same phenomena as I have been, and also concerning, that such distress is relatively common. Most studies suggest processes or interventions to ensure staff can voice their concerns and feelings, in order to reduce distress. This certainly happens on an informal basis on my unit, where colleagues are open, honest and supportive, and on a formal basis during morbidity and mortality meetings (although it now strikes me that only doctors are present at these meetings). However, we do not have Schwartz rounds, or an equivalent and I wonder what effect they would have when the fundamental problem, a lack of advance care planning, still exists.

death_everyone

Of course it is difficult and upsetting to talk about death. Death itself is upsetting. But we are all heading there, and not talking about it is damaging us all. Doctors need to better equip themselves for talking to their patients about what happens at the end, and what their priorities are. And patients need to feel more empowered to make their wishes known. I have met patients who want every possible invasive intervention until the second they die. I may disagree with their choice personally, but would fully support it as a professional. But I have met many more who, given the choice, have clear ideas on what they do and don’t want and where, for them, dignity and quality of life become more important than more time. I am sure a significant number of patients who have died on my ICU in the last two months would have chosen a different death.

I have four months left in ICU and a lot more to learn about ventilation modes, renal replacement therapy, and inotropes. But more importantly I have a lot more to learn about death, decision making and dealing with my own moral distress.

The Dangers of DIY Diagnosis

I spend all day talking to patients about their health and disease, explaining the rationale for tests and discussing the possible outcomes of different treatment strategies. This is often difficult and complex. I struggle to articulate risk, uncertainty, and the art of medicine; the shades of grey that are a day to day reality, and which medical school does not necessarily prepare you for.  I was therefore outraged when, on my way home after a hard day at work, I saw this advert on the Tube:

An advert on London Underground for an over the counter blood test.

I should sue Myrios for emotional distress: I almost fell onto the tracks. What shocked me was the cynical, and cheerful, exploitation of people’s worries about their health.

On their website Myrios say “with all conditions, preventative medicine is key, so it is important to check your health and well-being periodically.” I have no objection to this statement and wholeheartedly endorse the “prevention is better than cure” message. But to suggest that this can be achieved by having a random panel of blood tests is outrageous.

The advert offers testing for a number of ailments, ranging from anaemia to syphilis. Below I offer my initial reaction to each of these, and a reason why you should not buy the test (I suggest you spend your hard-earned money on a giant Easter egg, lunch and an exhibition at the Tate Modern, a subscription to the LRB, or a nice bottle of red).

What concerns me about this advert, and others like it, are the ethics of marketing to vulnerable individuals and the validity of consent to the tests.

I imagined I was one of the patients I often see in clinic and typed “do I have lung cancer?” into Google. The top hit (if you don’t have the wonderful Adblock installed) is Insight Medical offering “peace of mind” from a CT scan of the Chest. This test could indeed reveal a Lung Cancer, and if detected early the outlook is better. But the test involves exposure to radiation, and should only be offered to those with the right risk factors and symptoms or signs to make sure the potential benefit outweighs the known harm. In this context, the test will be offered by a Respiratory Physician, for free on the NHS.

An example of a particularly advanced CT scanner, capable of producing amazing images in seconds

Research is ongoing for an effective lung cancer screening programme for asymptomatic individuals, and progress has been made in the use of CT for screening (a low dose protocol). I hope that in my lifetime we create an effective programme to find early cancers, amenable to aggressive curative treatment. But disappointingly there is currently insufficient evidence that CT screening makes a difference to outcomes, even in carefully selected high risk populations, which is why it is not offered as an NHS screening programme, which are subject to rigorous controls and quality assurance.

I could go on for pages about the complexities of screening; about the need to evaluate the sensitivity and specificity of a test and to know the prevalence in the population you’re testing to have a good idea of false positive and false negative rates; about the need to have a good knowledge of the natural history of the disease you’re screening for and consider lead time; about the need for precise protocols on patient selection, frequency of screening; about  how important it is to know what the intervention will be if an abnormality is detected; about the need to have systems set up to manage and perform these interventions, with appropriate after-care. I recommend The Pod Delusion Episode 129 for a great discussion with GP Dr Margaret McCartney on this subject, and also her BMJ article.

What is not often talked about is the difficulty in dealing with incidental and indeterminate findings.  What if you go for a CT Chest looking for “complete peace of mind” and it identifies a small nodule? It doesn’t look like cancer, the rest of the scan is normal and you are otherwise well. But it’s there. And you’re “high risk” as you’re a smoker. It’s too small to biopsy and your doctor recommends “watching it” with a repeat scan in 6 months (which you pay for and have.) The nodule is unchanged and your doctor recommends a further scan at 12 months. It is again unchanged so, as per guidelines,  she recommends one further check CT at 24 months. The nodule is still unchanged so she says there is no need to watch it anymore. What started as a desire for “peace of mind” has resulted in 2 years of repeat scans (with the associated cost and radiation exposure) and the unquantifiable psychological cost of knowing there is something there. Even at the end of this period you may feel uneasy that this nodule exists and there may be longterm anxiety about it. I wonder whether a scenario like this is discussed in the consent process for the initial CT. I also wonder how many patients switch to NHS care after the initial scan, leaving the NHS to pick up the bill for ongoing care and tests. As always private companies want all the profit, none of the responsibility.

I absolutely encourage you to be an empowered patient, to take control of your health, to research your condition (from evidence-based and peer-reviewed sources) and to practice preventative medicine yourself. I encourage you to talk to your doctor about your concerns. In this model of healthcare delivery there is a partnership between the patient and physician; the physician providing the expertise necessary to evaluate and contextualise the evidence, in order to advise patients on their options. Admittedly not all doctors will respond well to this, and many are still uncomfortable with the “medical Googler” but as healthcare providers we need to get better at this – our duty of care extends to protecting patients from exploitation and worry. I expect to have more and more conversations that centre around critical analysis of evidence found on the Internet. I expect to be challenged and educated by my patients in the future, and hope to steer them far away from exploitation and harm.

Don’t be taken in by cynical marketing. If you are ill or are worried about your health see your doctor. The NHS is a wonderful system and, for now, remains free at the point of need. If you need it, use it, and save your money for enjoying life.

Below are the specific tests offered by Myrios and reasons why not to buy them. 

1. Anaemia. This is a condition in which the Haemoglobin (Hb) level is low. Hb carries oxygen from the lungs to the tissues and if it is low you may feel tired or breathless. Your GP would routinely do this test (for free) if you had these symptoms. There are many, many reasons for anaemia that would require your doctor to talk to you and examine you, in order to decide on subsequent tests.

2. Cholesterol. An important and necessary component of cell membranes, but high circulating levels of some forms of cholesterol (LDL) and relatively low levels of other forms (HDL) promote atherosclerosis and so are linked to cardiovascular disease (heart attacks, strokes). This test is offered for free in NHS Health Check schemes to everyone aged 40-74, and is part of a comprehensive assessment taking into consideration personal and family history, lifestyle factors and other risk factors.

3. Diabetes. A diabetes assessment forms part of the free NHS Health Check, and  is not just an isolated blood glucose test but takes into consideration other risk factors. An isolated single test of high blood sugar does not diagnose diabetes, so further tests such as an oral glucose tolerance test might be needed, in addition to lifestyle advice and support.

4. Glandular fever. This is a viral infection caused by Epstein Barr Virus, also known as infectious mononucleosis. It often affects young adults and is contagious. Common symptoms include fever, sore throat and swollen glands/lymph nodes. For most people this condition is unpleasant but not dangerous and they get better in a few weeks. There is no reason at all for a healthy person to be tested for this disease. A doctor can advise on when the test could be helpful (including when a simple monospot is appropriate, and when other antibody tests may be needed), as part of an overall assessment of a patients’ signs and symptoms. Available for free on the NHS.

5. Gout. A condition in which patients suffer from recurrent inflammatory arthritis. They have attacks of hot, swollen, painful, red joints; often the joint at the base of the big toe, but other joints can also be affected. It is caused by elevated uric acid levels in the blood, which crystallise in joints and cause inflammation. Unfortunately a blood test for uric acid levels is very inaccurate in the diagnosis of gout. High levels are not always associated with a patient suffering from gout, and low levels do not rule out gout. In fact in an acute attack the patient may have low levels as the crystals leave the blood and enter the tissue. A hot, swollen, painful joint needs assessment by a doctor as it may have many possible causes, requiring different tests and treatments. This is available for free on the NHS.

6. Hepatitis B and C. These are viruses which are transmitted through bodily fluids, including blood and sexual contact. They may cause chronic liver disease, which puts patients at risk of cirrhosis and liver cancer. There are vaccines available to help prevent transmission. If you think you are at risk of Hepatitis B or C you need a comprehensive assessment, taking into consideration risk factors, travel and sexual history, signs and symptoms. You may need tests for other blood-borne and sexually transmitted infections such as HIV. You may need further liver tests such as an ultrasound. All for free on the NHS.

7. Hypothroidism. This refers to an underactive thyroid gland. It has many causes ranging from iodine deficiency (rare in the Western world), autoimmune diseases, to pituitary disease. Symptoms are often vague and include tiredness, cold intolerance, weight gain, constipation and depression. These symptoms also have many other possible causes. If you think you may have hypothyroidism you need to see your doctor so that they can consider other possible explanations for your symptoms, and arrange the appropriate tests. For free on the NHS.

8. Iron, Vitamin B12 and Folic acid. These are all substances needed for many functions, but specifically as part of the process producing red blood cells that carry oxygen to the tissues. If they are low you may become anaemic. There are many reasons why your iron, B12 or folic acid level may be low, ranging from dietary deficiencies, to stomach and bowel diseases, so you need to be seen by your doctor to evaluate what the most likely cause is in your case, and they can then suggest relevant further tests. For free on the NHS.

9. Menopause. This is a normal stage in the reproductive life of a woman, when menstruation stops. During the transition some women experience symptoms for which they seek help, such as hot flushes, sleep disturbance, vaginal and urinary symptoms. There is no definitive test for the menopause, although changes in hormone levels may be detectable. There is no reason to check hormone levels in most cases. If you are having distressing symptoms your GP would want to see you to talk and support you through them. For free on the NHS.

10. Stomach ulcer. A stomach ulcer (which can actually be in the stomach or first part of the small bowel, the duodenum) may lead to abdominal pain, nausea, bloating and blood in the vomit. It has a number of causes, but by far the most common is infection with Helicobacter pylori. A small minority are caused by gastric cancer. If you have symptoms you need to see your GP to assess you and consider whether a blood test (for H pylori serology) will be helpful, whether you would benefit from a trial of treatment, or whether you should have further tests such as an endoscopy. All this is available for free on the NHS.

11. Syphilis. This is a sexually transmitted infection caused by a spirochete, Treponema pallidum. The initial stage of infection stage presents with a single “chancre” a firm, painless, non-itchy skin ulceration. Syphilis is very easily cured with antibiotics. If left untreated it can eventually spread to other areas of the body, including the central nervous system, and cause serious illness. If you think you are at risk of having contracted syphilis you need to be tested for other sexually transmitted diseases and need to be seen at a GU Medicine or Sexual Health clinic. For free on the NHS.

12. Vitamin D. Humans get this from diet and from synthesis in the skin in response to sun exposure. Severe deficiency leads to rickets, a childhood bone disease (almost unheard of now in the Western world) or osteomalacia in adults. Your doctor may test your Vitamin D levels if you have certain bone diseases (for free, on the NHS). There has been recent interest in Vitamin D and its role in multiple health problems including cardiovascular disease, asthma, MS and neurodegenerative diseases. There is a lack of evidence to support Vitamin D supplements unless a patient is severely deficient (uncommon in those with a normal diet who occasionally see the sun), therefore there is little value in testing.

Why I’m against the Health and Social Care Bill

“Are you political, then?” I was asked by a colleague yesterday who had noticed my “doctors say stop the bill” badge fixed proudly to my dress, beside my ID badge and stethoscope. Yes I am. But you don’t have to be “political” to be against this bill. You just have to want an NHS free at the point of need; an NHS in which clinicians are making decisions based solely on your clinical need; an NHS in which you can’t buy your way to the front of the queue; an NHS in which all money goes towards patient care, not shareholders. If you believe in equality and democracy you must make your voice heard, or forever regret it.
So here is a summary of why I, as an NHS doctor, citizen and patient am against the bill. At the end are things you can do to get your voice heard.

1. The government has failed to show that this massive, top-down, reorganisation of the NHS is “vital” as it claims. The NHS needs reform. No-one doubts this. But this bill is not the answer. There is no clear vision of what is trying to be achieved. I have not heard a single politician articulate the aims of the bill. In fact the changes that politicians, patients and doctors agree would be beneficial, including shifting decision-making powers to clinicians and streamlining patient pathways do not require legislation, and can be achieved without wholesale structural change. 

2. The government has no mandate for the destruction of the founding principles of the NHS. The changes proposed in the bill were not in the Conservative or Liberal Democrat manifesto. They were not in the coalition agreement. There has been no vote. The government has already started implementing parts of the bill before any House of Lords approval or Royal Assent. This premature and rapid implementation is already causing chaos on the ground, destabilising services. The government has also blocked demands to publish the risk register, and is ignoring the ruling of the information rights tribunal to publish it, underlining its total lack of respect for public opinion and democracy. The last time similar actions were taken was when there was a public demand for release of the legal advice the Blair government received about the legality of military action in Iraq, prior to the start of the conflict in 2003. We all remember how that turned out. The government has also ignored the e-petition and refused to hold a debate, despite gaining far more than the required 100,000 signatures. Pushing forward with the bill is undemocratic, autocratic and wrong.

3. Privatisation will increase under this bill. This is bad for patients. The record of private company involvement in the NHS is not good. PFI may have created a few sparkly hospitals but taxpayers will continue to pay extortionate amounts     for this privilege for years. Private companies only want to undertake simple, straightforward procedures in patients who are low risk. Not only does this leave out many older people with multiple co-morbidities, but when any patient has a procedure done privately, complications are dealt with in the NHS. The PIP implant disaster exposed the fact that private companies cannot be held accountable by the government; have no obligation to collect or supply accurate information about what they are doing; fiercely resist any duty of care to patients; and are more concerned with cost than quality. Look forward to more of this, not just in relation to cosmetic surgery. Private companies want all the profit, none of the risk and this bill hands it to them.

4. Those expected to implement the bill do not want it. The coalition have attempted to sell the bill to the public on the basis of clinician-led commissioning, giving power back to clinicians. Well, clinicians have made their opinion clear. Name a professional body and you can find a statement opposing the bill. Every day I am thankful that I am free to make decisions with patients based on clinical need, not cost. In all but a few specialist circumstances, such as new and expensive cancer drugs, cost never enters clinical discussions in the NHS. And we want it to stay that way. GPs, the clinicians who supposedly have the most to gain have made it clear that they do not have the time or skills required to deliver commissioning in the proposed model. They are first and foremost doctors, not managers.  Therefore the CCGs will outsource to private companies. More public money in the hands of shareholders, rather than patients.

Reorganisations and increased bureaucracy will cost the taxpayer heavily, at a time of austerity and cuts.

5. The bill will introduce more bureaucracy, which will cost, and will distract from care-giving. It will replace three layers of management in the NHS with at least six new ones. Many of the staff in primary care trusts have already left, returning to work for the commissioning groups and commissioning support services, often as consultants on a higher salary. This bureaucracy will not only slow down innovation and change, but will be hugely expensive. Management costs in the NHS are about 5% of the total budget. In the healthcare system in the US they are above 25%. It is a fallacy that markets drive efficiency. If the bill is passed, management consultants such as McKinsey and KPMG will make millions from the NHS budget “advising” clients on both sides of the purchaser/provider split, with additional contracts “advising” government and health regulators how to cope with the tangled web of contracts the new system would create.

Nye Bevan, founder of the NHS said “the NHS will survive as long as there are people left with the faith to fight for it”. I have faith. Do you?

Write to your MPadopt a peerwrite to your local paper, tell everyone you know, twitter your thoughts with #SaveOurNHS #dropthebill, directly tweet MPS eg @nick_clegg, @SWilliamsMP, @VinceCable #LDConf #lostvotes.

Other people have said all this and more, much more eloquently then me. Here are a few examples:

1. Clive Peedell, Clinical Oncologist and campaigner speaking at the Save Our NHS Rally

2. FalseEconomy.org.uk’s assessment of the effects of the bill – 5 facts

3. The Lancet’s summary, highlighting the failure of the bill to safeguard the core principles of universal care and the duties of the Secretary of State to uphold those principles. “The duty on the Secretary of State to provide or secure provision in accordance with the founding legislation of the 1946 Act must be restored if England is to have a national health service.” 

4. A patient who has found “gratitude, if not joy, in illness because we have a National Health Service, built on care.”

5. David Nicholl, a neurologist and human rights activist, explains why the NHS bill is beyond repair

6. Kailash Chand, a GP and the originator of the “Drop the health bill” e-petition

7. Analysis of Health and Social Care Bill published in BMJ, which concludes that it introduces a legal basis for charging and providing fewer health services (summary and link to full text)