How much do you cost the NHS?

First published on Open Democracy

Tory MP Jesse Norman has come up with an idea to send everyone who uses the NHS an Annual Healthcare Statement. It is designed to dissuade people from presenting to hospital or GP surgeries unnecessarily by showing them how much they have cost the NHS and ‘by implication the value of NHS services’. The report goes further to suggest that ‘more incentives’ could be added in the future.

Fear that a free NHS would result in overwhelming demand has been around since the very idea of an NHS and has been superbly deconstructed by Julian Tudor Hart. Politicians and economists couldn’t believe that free healthcare wouldn’t result in unsustainable demand and in a panic, introduced prescription charges which led to Nye Bevan’s resignation.

In 1951 the first postwar Conservative government set up a Royal Commission to measure abuse and extravagance. After painstaking studies the Guillebaud Commission found no evidence of either, only hard-working staff and stoical patients, underfunded and lacking investment.

Study of a poor inner city area in the early 1970s showed that for each person who consulted with a minor problem, more than two others failed to consult at all, despite recent severe or worrying symptoms. Contrary to subjective impressions of overworked doctors, fear and denial of illness were more powerful than avidity for free consultations. Despite free universal access to the NHS, for most important chronic conditions less than half are medically recognised, of which roughly half are treated, and roughly half of these are controlled. Far from expecting infinitely, NHS patients expect too little.

The most vulnerable patients already fear that they are a burden on the NHS and consequently attend too little, or fail to attend because they are feeling ashamed, or even because they are feeling too unwell. Parents of young children feel strongly influenced by a sense of responsibility to act as competent parents and the fear of overwhelming guilt should they fail to do so. And consequently feel ashamed and stigmatised if they are made to feel they are wasting professionals’ time. I have had a patient present with a breast cancer that had almost completely destroyed one breast, another that had a stroke but waited 3 days until they could see me instead of going to A&E, and another who ended up on a ventilator because she thought she was wasting NHS resources because her asthma is so difficult to control.

For the last two years GPs have been required to review their patients who attend out of hours, A&E and the GP surgery most frequently in order to try to identify whether they can be better cared for. The majority are very sick with severe heart, lung or neurological diseases, often requiring intensive treatment. I can think of one patient who spent 6 months in hospital with recurrent perforations of his intestine due to his Crohn’s disease.Under Jesse Norman’s proposal patients like him would be presented with the highest bills. Others have serious mental illnesses, sometimes compounded by illicit drug or alcohol use.  There are certain groups of patients who attend frequently, who on superficial analysis might be assumed to be attending inappropriately. Some of them are suffering from ‘medically unexplained symptoms’. These are physical symptoms like chest and abdominal pain, headaches, blurred vision, numbness and tingling, weakness and so on. In some cases they represent serious, difficult to diagnose disease, and in other cases the symptoms are a manifestation of unresolved, and often unresolvable psychological pain.

Other groups that frequently attend are patients who are extremely anxious, those that are suffering domestic violence, those that have been abused and the the very lonely. Experienced GP John Launer has asked, ‘What is an emergency?‘ He recalls diagnosing a child with meningitis who appeared, at the time they came into his surgery, entirely well. He continues,

I will happily accept having seen tens of thousands of mildly snotty toddlers over the years, giving their anxious parents a bit of friendly advice and education, and seeing them on their way in less than 5 min. We cannot, in other words, preach the importance of our own expertise and at the same time berate people for making use of it.

Jesse Norman said to me this morning, that it would be very easy to see a GP reviewing an annual account with a very vulnerable patient and encouraging better use of services with better outcomes. He said that it would be ‘especially valuable to the most vulnerable patients’.

When we meet with our most vulnerable patients, we spend the time trying to work out how best to help them. Usually we know them very well, because they come to their GP a lot as well. I have a pretty good idea about the impact of an Annual Statement. It will almost certainly add to their sense of being a burden on society and the NHS, something that they already feel. It will add to the anxiety parents of young children feel when they try to identify the goldilocks zone where their child is sick enough to warrant medical advice, but not so sick that they’ve left it too late. It will encourage a superficial view of healthcare as a commodity, rather than care as something complex that happens between people. Something recorded as a minor illness on a hospital letter happens to someone with a history and a home-life, hopes and fears. Once you start to understand these, you might come to the conclusion that there’s no such thing as a trivial consultation.

Which coincidentally was the first blog I ever wrote.

How to handle shame

“I feel so ashamed”

Vivienne had just been told by Hannah, the young gynaecologist that she had pelvic inflammatory disease (PID), an inflammatory condition caused by sexually transmitted infections.

“I didn’t know how to respond” Hannah later confessed. “I wanted to tell her that it was nothing to be ashamed about, but that seemed so insensitive, because she she really did feel ashamed. But also I didn’t want to say, “it’s OK to feel ashamed”, because then she might think that I was saying, “yes, you ought to feel ashamed”.”

We had been discussing an essay I had written about how shame presents in clinical encounters.

The bottom line is that shame is never a good thing. Which is not to say that shame never leads to a positive personal transformation, because there are plenty of testimonies to show that it sometimes does, but rather that the negative consequences of self-harm and self-loathing, isolation and the rebound effects – doing more of the things one has been shamed about – considerably outweigh the positives.

Shame often leads to unbearable loneliness so one of the best things we can do for people who are feeling ashamed is simply to stick with them and see them through it.

Brene Brown uses the example of someone who is feeling ashamed sitting at the bottom of a pit to show how we can helpfully respond.

Vivienne is sitting at the bottom of a deep, dark pit.

Hannah is walking past with another doctor. Her colleague peers in.

“Oh dear” her colleagues says, “Sorry to see you there, it looks pretty bad. I hope you can get out soon.”

She walks off.

Hannah looks down.

“Hi, I’m sorry you’re stuck in the pit”

silence

“I’d like to come down and see what it’s like, but it’s too far”

silence

“Is it as cold and dark as it looks down there?”

“It is. It’s really dark. And cold and damp too”

“oh, that sounds awful”

“it’s the cold I hate the most”

“Would you like a blanket?”

“Yes please”

“I’ll get one for you”

“Thanks”

“Are you on your own? Is there anything else down there?”

“I prefer not to see anyone. Sometimes my sister comes down, but not much. I think it’s too dark and damp for her”

“I’m sorry to hear that, do you get lonely?”

“I do, but I can’t really handle other people, and I don’t think they can really handle me either”

… continues …

When Brown describes empathy she describes someone climbing down into the pit to sit with the person. She proposes that what people need when they are feeling ashamed is empathy, someone willing to let them know that they too also feel ashamed and vulnerable at times. I think that this is too much to ask of young doctors who have probably never experienced anything like what their patients are going through. It’s made even harder by differences in age, class, culture, power and so on.

What I think matters, in these professional interactions, is showing an interest, a gentle curiosity, a sincere desire to know what it’s like to be at the bottom of a deep pit, – that is, what is like to live with a chronic illness, or be faced with an serious or incurable disease, or to feel ashamed. We need to let our patients tell their stories.

Philosopher Havi Carel is very helpful here.

Living with a serious illness herself she reminds us,

  • Describing to others what it is like to live with and experience a serious illness can be really difficult (even for a philosopher). Patients might need our help to do this
  • Doctors and healthcare professionals are interested in symptoms, but rarely ask patients what it is like to actually live with and experience illness
  • Patients’ interpretations are often uninvited, unrecognised or ignored because of lack of time, or a perception that they are unimportant
  • Patients are afraid to offer descriptions of their lived experience – what Carel also calls the phenomenology or embodied experience of illness because professionals are in a position of power over patients and only allow patients to tell the medical narratives they want to hear
  • I would go further and say that at a policy level there is no accounting for the time and continuity of relationships necessary to have these conversations

In Illness as Narrative, Ann Jurecic explains,

“if one of the consequences of modernity is that we no longer depend on traditional explanations for suffering, loss and morality, and if doctors’ offices and hospitals cannot function as spaces where personal meaning can be developed, then the existential questions about human fragility and significance have to be asked and answered elsewhere” (Jurecic 2012)

Patients may feel very exposed when they tell these stories, especially if they include shame or fear of death, disability or loss of independence. They need to be invited, not forced to share them with us. Doctors may be afraid of inviting patients to tell these stories because we share the same fears ourselves. The lessons of doctors who have been patients is that when we do this both doctors and patients benefit.

As medicine continues its transformation from being curative to supportive because more patients are living longer with more serious conditions it will become increasingly important for us to understand their experiences. The sacking of NHS managers, impossible to achieve savings, and an obsession with regulation and targets is forcing doctors and nurses to spend ever-more time staring at computers and sitting in meetings, leaving little time to listen to patients.

Closer attention to our patients’ narratives can make our work more humane and effective. We must demand more time with our patients and better continuity of care, so that we can do this.

Further reading:

Listening and measuring. Abetternhs blog.

Patient reassured. How to give patients confidence. Abetternhs blog.

Patient voices. Illness and epistemic injustice. Havi Carel

Epistemic injustice in healthcare: a philosophical analysis: Havi Carel

Seen but not heard. Children and epistemic injustice: Havi Carel

Patient stories, narratives of resistance and the ethics of humane care: a la recherche du temps perdu Mishler 2005

Perceived weight discrimination and changes in weight, waist circumference, and weight status. 2014

‘Care left undone’ during nursing shifts: associations with workload and perceived quality of care. BMJ Quality Safety 2014

Computer templates in chronic disease management. Swinglhurst 2012

Giving voice to the lifeworld. More humane, more effective medical care? A qualitative study of doctor-patient communication in general practice. 2001

“Patient reassured”

“Patient reassured”

GPs write this so often in patients’ records that by the time we’ve written Pat… the software has completed the phrase. It’s almost certainly the commonest concluding remark of a consultation, especially one involving a parent of a sick child or someone worried about a symptom that they had associated with something serious like cancer. We spend a lot of time learning about communication in medical school and afterwards in our GP training (believe it or not), and I am still learning.

Maisy’s ears look fine, her throat is a little pink, her glands are a little enlarged, her chest is clear and her tummy feels fine, and her temperature is just a little bit up at 37.8 It looks like she’s got a viral infection and I expect she will be like this for another two or three days before she gets better

I watched Keris, the trainee GP describe her examination findings to three-year-old Maisy’s mum. Keris looked kind, friendly and concerned as she faced Maisy’s mum, consciously ignoring the computer screen next to her. Maisy looked tired and pale and sat on her mother’s lap with her head leaning against her chest. Her mum looked tired and worried. Keris noticed this,

“Was there anything else you were worried about?”

“No not really, thank you. I suppose, well you’ve checked her and you’ve said she’s going to be OK”

“If she gets any worse, or you’re worried, you can always call us again and we can see her if necessary”

“Thanks, and thanks for seeing us so quickly” Maisy and her mum left and Keris turned to finish typing up her consultation. She began to type, “Pat …”

We looked at each other, was Maisy’s mum really reassured? Was reassurance what she wanted or needed?

A series of studies looking at parents of sick children suggested that what parents want is not only reassurance – that there are no signs of serious illness and their children will be OK, but reassurance that they have done the right thing at the right time, by asking for medical advice. Beyond reassurance, the articles suggest that what parents want and need is confidence in the doctor and confidence in their own abilities.

In one study, parents

felt excluded from the apparent mystique of the professional’s assessment. The commonest example was seeking advice about a chld’s cough when they feared infection “on the chest” because the child’s chest sounded, and even felt, “rattly”. However the doctor would pronounce the lungs “clear” on examination despite apparent evidence to the contrary. Parents would then find it difficult to question the doctor’s authority and were left feeling silly for worrying or still perplexed by the problem.

The significance of this is highlighted by another study about parents experience of criticism when presenting with sick children,

Parents reported being made to feel stupid or silly in these negative encounters with health care professionals, usually doctors. They felt that they had been criticised, even when no directly critical comments were made the criticism was communicated through the attitude or manner of the doctor concerned.

Being made to feel stupid or silly makes parents feel of guilty or ashamed, for example that they’ve wasted health-professionals’ time or that they are bad parents. The consequence of this felt or enacted criticism was that parents tended to feel more anxious about their abilities to recognise and manage their childrens’ illnesses. Thinking back on my own experience as an inexperienced A&E doctor and an exhausted GP, particularly before I had children of my own, I have no doubts that I left parents feeling bad about wasting my time. My intention, in a rather careless, ignorant or callous way, was to try to make sure they didn’t come back with a similar problem in future. My role was conflicted between my duty to my patients and my duty to stem the tide of demand. These pressures are even higher now as a result of cuts to NHS funding at the same time as rising demand and increasing emphasis on individual responsibility. Parents feel in a double bind, expected to find the ‘Goldilocks zone’ where their child is sick enough to warrant medical advice, but not so sick that they’ve left it too late, whatever the illness. Signs on buses and A&E (Emergency) departments warning parents and patients not to waste healthcare professionals’ time highlight the ignorance of government advisers, suggesting, “You won’t get any sympathy here if you’re child isn’t seriously ill”. GP and educator, John Launer has asked, rhetorically, “What is an emergency [anyway]?

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Doctors who make parents feel bad about bringing in sick children may believe they are avoiding patient dependency especially when the parents don’t come back. But,

Parents leave such encounters without the capacity to manage the situation, still anxious about their child’s illness and therefore may need to seek advice again.

And so, still anxious, they present elsewhere where they are less likely to see the same health professional again or where they think they are less likely to be criticised. It has been suggested that because of their position of authority, doctors are more likely to be perceived as critical than nurses. I’ve met gentle doctors and fierce nurses, but in general this rings true.

What should we do?

We should start by acknowledging, explicitly if possible, that parents are,

strongly influenced by a sense of responsibilty to act as competent parents and the fear of overwhelming guilt should they fail to do so. (Kai)

So we should reassure them, not only that their child is OK, but that they are not wasting our time and we understand their concerns. GPs are taught to explore parents ideas, concerns and expectations, but while these shouldn’t be pre-empted, it helps to know that in one study, parents of children coughing worried that their children might die, by choking to death or that they might develop long-term damage like asthma. Almost all parents have experienced a child who has been listless, feverish, coughing and miserable all night only to perk-up as soon as they get to the GP or hospital and wonder how or why they did that.

Secondly, the experiences of parents of sick children reveals that we need to go beyond learning about ideas, concerns and expectations to understand informal social rules, our  role as moral agents, how actual or perceived criticism can lead to guilt or shame, and how to use our own power to empower parents (and other patients).

Thirdly, we need to give explanations that make sense to parents. In the first study, If the doctor told them that,

their child had ‘a virus’ or ‘a bug’ it was confusing, provoking anxiety rather than reassurance, and sometimes anger. Some parents believed that a viral explanation was offered when the doctor was unsure about the diagnosis.

Finally, we need to go beyond reassurance, to give parents and patients confidence in themselves and their ability to cope. One of the reason this is difficult, especially for inexperienced doctors is that first they have to reassure themselves that the child is OK, and have confidence in their own abilities. Sometimes when we think we’re reassuring patients, we’re really just trying to reassure ourselves, like Keris above. My own experience and that of other older doctors is that trainees these days have more anxiety-provoking assessments, but less confidence-building experience than they used to. We also need to think critically about patient choice and information – the twin obsessions of policy makers, because they are only means to the ends of patient reassurance and confidence. Used carelessly, too much choice and information and can worsen parents’ anxiety and undermine confidence.

One of the most effective ways I learn is by watching my colleagues and trainees work and by inviting them to watch me. When experienced surgeon Atul Gawande noted that even the most experienced sports-stars benefit from a coach he invited a colleague to watch him at work and was amazed by how much he could learn. I’m in a fortunate position of teaching trainees when I work, but I’m now making time for my experienced colleagues to watch one another.

Even though I’ve been a GP for 14 years, I still find this useful. Just as parents share stories, which often take the form of moral tales, about their experiences with sick children and medical professionals, by sharing stores about how we struggle to be better doctors, we realise we’re struggling with the same issues. To be a good GP – or indeed any healthcare professional, is difficult because it’s bound up with sensitive relationships. We need to articulate this to policy makers who think our work can be automated or industrialised and we need to support one another and know that we can help each other change.

Further reading: 

Why do mother’s consult when their children cough? http://www.ncbi.nlm.nih.gov/pubmed/8359610 1983

What worries parents when their preschool children are acutely ill, and why: a qualitative study http://www.ncbi.nlm.nih.gov/pubmed/8892420 1996

Parents’ difficulties and information needs in coping with acute illness in preschool children: a qualitative study http://www.bmj.com/content/313/7063/987 1996

The role of felt or enacted criticism in understanding parent’s help seeking in acute childhood illness at home: a grounded theory study. http://www.ncbi.nlm.nih.gov/pubmed/22137590

Shame. How it affects patients and their relationships with health care professionals. https://abetternhs.wordpress.com/2012/11/16/shame/

What is an emergency? John Launer

Conversations inviting change. John Launer

An immodest proposal for medical education

Right at the very beginning of their studies, medical students have strong ideas about what kind of doctor they want to be, even if they know very little about how to actually be a doctor. In one study medical students regarded empathy, motivation to be a doctor, good verbal communication, being ethically sound and honesty as the most important qualities. Medical education needs to be radically reformed if it is to support these ideals which are too easily lost.

Educationalist, Sir Ken Robinson interviewed on radio 4 last week, was asked whether he thought it necessary to master basic skills in literacy or numeracy before giving expression to language or mathematics. He responded,

“Well it’s wrong … it’s just not true. It is important that you learn these things as you go on , but this is a matter of pedagogy. I mean for example, we’re here in Liverpool, this was the birthplace of the Beatles. When they started out they knew about three chords but they had fantastic energy, compassion, enthusiasm for music. Well, nobody would deny that they became much more sophisticated musicians as they went on, but they were impelled to become more sophisticated by their passion for the music they were creating.”

He continues to say that great teachers give students a passion for their subject and their enthusiasm for learning follows from that. We need to give medical students a passion for the practice of medicine right from the first day they start medical school.

I’ll acknowledge here, that increasing numbers of medical schools have introduced patient-contact in the first year. But it needs to go much further.

The entire first year of medical school should be vocational.  Students should spend the whole year seeing how medicine is practised from the perspectives of different types of doctors, allied health professionals, managers, policy makers and most important of all, patients. They need to know what it’s like to live with a chronic disease and deal with doctors and the health and social care systems in which they will one-day work. They should learn about what it means to be a professional, about the privileges, responsibilities and stresses of their profession. They should learn from close observation and role models about the responsible use and irresponsible abuse of power. A grounding in narrative medicine and the medical humanities will be essential for them to develop the ability to critically balance such a wide range of perspectives.

They should learn about medicine’s historical, social and political roots, the role of advocacy and the importance of global health, public health and the social determinants of health.

To make sense of this they will need plenty of opportunities to meet with their peers and more experienced mentors to see how their experiences fit with their preconceptions and their ideals. This is how most medical education should happen, especially if we want our students to understand the complexity of clinical practice. These groups would be ideal fora for discussing the contested grounds of professional behaviour and medical ethics and learning about the value of narratives, the skills of peer supervision and the ability to reflect.

At the end of this year, they should be asked a question,

Which of you still wants to be a doctor?

If the experiences are sufficiently rich, both wide-ranging and deeply considered then there will be a minority who have discovered that medicine is not at all what they had expected (or it is as bad as they had feared, but had hoped it was not) and they will have the opportunity to change career before investing several more years of their life and money.

Those that remain will be much clearer than most medical students are at present, about what it means to be a professional, why medicine matters and what matters to patients.

And when they then start their basic medical sciences their ideals will be rooted in an ethically informed professional identity, a much clearer idea of their heritage and their future.

And, one would hope, their learning will be impelled by their passion.

Beyond first impressions

“Jennifer Jones?!”
“Jennifer… JONES!”
“Mrs JONES!”

Three times I called, increasingly loudly across our large, busy waiting room, each call louder and more impatient than the last. A few patients, especially those who were hard of hearing or didn’t speak English, stood up, looked hopefully or asked me to say the name again. I all-but-scowled at them. I was exhausted, my surgery was running 25 minutes late, I was the only partner in the building and almost every consultation was interrupted by a phone call from another doctor, nurse or receptionist.

Somebody who evidently wasn’t Jennifer Jones – because she was a lot younger than the 86 years I knew Mrs Jones to be – almost ran over to me.

“I’m really sorry Dr Tomlinson, she had to use the toilet, she’ll be out in just a minute”

The woman ran back and knocked on the toilet door, “quick mum, the Doctor’s calling you!”

I sighed, gritted my teeth and looked at my watch. I was holding open the door between the corridor outside the consulting rooms and the waiting room, as other patients walked passed and other GPs called their patients in.

“Fatima!” Dr Brown cheerfully called her next patient in by her first name. Fatima stood up, obviously in discomfort, but greeted her GP with reciprocal warmth, and they walked down the corridor side by side.

Several patients were watching all this from the waiting room. Jennifer Jones’ daughter was helping her mother shuffle over towards me and I was shuffling irritably on the spot. I spotted my next patient and apologized for the wait, gesturing to Mrs Jones.

The next day I was supervising a trainee GP working in our out of hours service, CHUHSE. She is a fully qualified doctor, with 3 years of hospital medicine behind her, but this was only her 4th out of hours GP session and she wanted to watch me manage a few calls from patients and then for me to watch her. Most of the out of hours work is answering patients’ calls by phone. A few days before, in preparation for our session, I had asked her to read an essay by GP/sage, John Launer called, The Three Second Consultation.

We imagined what it might be like if we taught medical students and doctors the importance of the first three seconds of any encounter with a patient. This would mean training them to be alert to every verbal and non-verbal cue that patients brought with them into the consulting room. It would mean making sure that our initial responses were calculated to put patients at their ease, gain their trust and set the scene for a productive consultation.

Before we stared I asked her if she had read it, she said she had but wasn’t sure of what to make of it – after all, it’s what she tries to do all the time. So for the next few consultations we agreed to concentrate on the first few seconds. We prepared by reading the records we had. We listened for how the phone was answered; hurriedly, anxiously, suspiciously, or more relaxed. What background noises were there? A screaming child, street sounds, a bus? We made sure that we gave callers our full names and titles, explaining as often as was necessary. Our calls began with #hellomynameis. We asked who it was we were speaking to with the same attention to detail. Very often we were speaking to a friend or family member rather than the patient and names were often difficult for us to understand, so we checked spelling. The trainee and I listened carefully to the tone of each other’s voices, for kindness, concern, confidence and reassurance and to the tone of the caller’s voices for fear and concern, comprehension and any other clues about how they were feeling. As we worked our way through consultations the effort required for such close attention became progressively less and it felt more natural.

After a couple of hours we had a short break and I had to share a confession. I told my trainee about how I had behaved in surgery the day before with Jennifer Jones, about the tone of my voice, her anxious daughter, the looks on the faces of the other patients in the waiting room, about the impression this must have given to the other patients, the stress and irritability that must have spread and affected the rest of the surgery.

What I discovered when I went back to work the following day, even though I had far too little sleep after the out of hours shift, was that I was so attuned to the first few seconds of every patient meeting, that every consultation seemed a little easier than usual. Our receptionists, who saw me stand in the doorway to the waiting room 19 times that morning and call every patient in with a smile and greet them with an introduction and a handshake, noticed the atmosphere in the waiting room lift.

 

What I learned was not just the importance of first impressions, but what can be learned from having someone watch me at work. Making the implicit – what you do unconsciously – explicit for the benefit of a witness, reveals things you knew but had forgotten or neglected, or let slip under the duress of workload and stress. I’ve been a patient often enough myself to appreciate just how often simple courtesy is neglected. As accomplished surgeon Atul Gawande notes, even the best sports-stars or doctors can benefit from coaching but we need to be prepared to perform under the watchful eyes of others and be open to critical feedback.

Feedback from our peers, who understand what it is like to try to be cheerful, patient and compassionate when we are stressed, running late and constantly criticised, is essential. My trainee was as quick to respond with kindness and forgiveness to my ‘confession’ as she was to appreciate the value of what we were achieving by paying such close attention to the first few seconds.

As doctors we need to be critically reflective teachers and to do this we must be able to reflect on our own practice, invite our peers, our students and our patients to appraise our practice, and engage with the literature that illuminates the things we may have forgotten.

80% of GP practices have one or more GPs suffering from Burnout

Originally posted on pracmanhealth:

Are you in despair for your future in General Practice – Final Report

In 2013, my practice advertised in the British Medical Journal, on two occasions, for a salaried GP with a view to partnership. This recruitment process resulted in only one credible candidate. At the time my surgery constructed an unconvincing narrative to explain our failure to recruit. During the year and early in 2014 we spoke with other surgeries in Oxfordshire and realised that we were not alone in being unable to recruit.

In April 2014 we ran a Survey Monkey questionnaire across GP practices in Oxfordshire. We received 167 replies in the space of a few days. This convinced us that there was a serious situation developing that could affect the future of General Practice. At the end of June 2014, at the request of a group of concerned GPs from North and North-East Oxfordshire the survey was…

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Smoking, oxygen and COPD

In this edition of Inside the Ethics Committee the question is, ‘should home oxygen therapy be allowed in patients with severe chronic obstructive pulmonary disease (COPD) who continue to smoke?’

I don’t have time for a ‘proper blog’ but here are some brief notes and links.

The reasons that oxygen might not be allowed are because in the presence of oxygen, things (like oxygen tubing, facial hair, clothing, etc.) are much more flammable and patients, including one of mine, have set fire to their heads resulting in serious burns and occasionally even death.

Oxygen therapy is used in patients who have Chronic Obstructive Pulmonary Disease (COPD), and is delivered through plastic tubes that go up the patients’ nostrils. Quite a lot comes out of the nostrils and effectively bathes the face, head and clothing. Patients have set fire to themselves when not smoking, for example lighting stoves, and one patient was killed when an e-cigarette exploded.

The tubes that the oxygen goes through are made of PVC which is quite flammable and releases highly flammable vinyl chloride gas when it burns.

Oxygen therapy is used in patients with COPD to reduce the risk of complications like pulmonary hypertension, heart failure (caused by the strain of pushing blood through the damaged lungs) and polycythaemia (thickened blood). In very severe COPD when the oxygen levels fall below about 92% patients feel confused or ‘foggy headed’ and the oxygen helps with this. Stopping smoking is a far more effective way of reducing these complications than oxygen therapy.

An assessment for oxygen therapy is often completed when a patient has been admitted to hospital with a deterioration of their COPD, for example with a chest infection. Unfortunately the assessment is not often repeated after the patient has been discharged. This is unfortunate because by then the patients’ condition has considerably improved and oxygen may no longer be necessary.

The symbolic value of oxygen.

Everybody knows that you need oxygen to live, and without it you die.

Taking oxygen away from patients is very difficult.

The perception (I’ve spoken to some of my patients about this) is that once you need oxygen, it’s pretty much the only thing that’s keeping you alive, and if anyone takes it away, pretty soon afterwards, you’ll die. Hearing these concerns, taking them seriously and working through them is difficult. I left the programme not entirely convinced that we had explored this issue enough.

Whole person care.

Anxiety, depression and feelings of shame and guilt are very common among patients with severe breathlessness, especially among smokers who quite frequently blame themselves for being a burden on their families and others. A smoker interviewed for the program who set fire to himself while using oxygen was too ashamed to go to hospital and waited until the next day when the pain was unbearable, before going. The more we punish and shame people the more isolated and self destructive the are likely to become. Our job is to help people who need it. Oxygen therapy provides relief from some of the anxiety, but sadly effective psychological support is often lacking and oxygen is a kind of substitute.

The bottom line.

I think that we should only prescribe oxygen therapy to smokers if certain conditions are met:

  • we have done everything we can to help them stop smoking
  • they are fully aware of the risks and awareness is not impeded by intoxication or other reasons, e.g. dementia
  • they have demonstrated the ability to smoke safely, i.e. stop the oxygen for 10 minutes and then going outside before smoking
  •  we have made every possible effort to help them with underlying anxiety, shame and depression (where it exists)
  • they have been given every opportunity to discuss their understanding about the risks and actual (and symbolic) benefits of oxygen therapy
  • We have done what we can to mitigate the risks, e.g. good ventilation, safer oxygen delivery systems
  • We have repeated the assessment to show that oxygen therapy is still effective and no safer alternatives exist

It seems very unlikely that in the case of the last patient discussed in the programme, that these conditions could be met and oxygen should not therefore be prescribed.

Links 

Use of oxygen therapy in COPD 

In New Calculus on Smoking, It’s Health Gained vs. Pleasure Lost. A little-known cost-benefit calculation that public health experts see as potentially poisonous is the happiness quotient. It assumes that the benefits from reducing smoking — fewer early deaths and diseases of the lungs and heart — have to be discounted by 70 percent to offset the loss in pleasure that smokers suffer when they give up their habit. NY Times August 6th 2014

Doctors, patients and shame – stigma, shame and blame experienced by patients with associated with lung cancer.

Some patients said that family or friends had not been in touch since they heard about the diagnosis. One patient with mesothelioma said that his daughter had not telephoned because she felt “dirtied” by contact with cancer.

Long-term oxygen therapy and quality of life in elderly patients hospitalised due to severe exacerbation of COPD. A 1 year follow-up study: In conclusion, the future need for LTOT cannot be judged after a few days treatment in hospital due to exacerbations with hypoxaemia in elderly patients with COPD. A standardised oxygen withdrawal test can be safely done. Health-related QOL is low in patients during the stay in hospital, but improves after returning home.

Home Oxygen Therapy and Cigarette Smoking: a Dangerous Practice: Patients are told not to smoke, but recent surveys show the percentage of home oxygen users still smoking to be between 14 and 51%. The use of a less combustible material for cannula tubing and a more efficient oxygen delivery system may reduce the incidence of such burns. Another suggestion would be labelling the oxygen cylinders with large stickers emphasizing the danger of smoking in the presence of oxygen.

Got a match? Home oxygen therapy in current smokers  Fortunately, at least 30% of patients meeting the criteria for domiciliary oxygen after 1 month of apparent stability no longer met the same criteria after an additional 3 months of observation

Smoking and Home Oxygen: Doubling the Danger There is no safe way to smoke when using home oxygen. Until patients quit, they can practice safer smoking. Should an individual need to smoke, it’s important to first turn off the tank, and wait 10 full minutes before going outside to smoke. This practice should decrease the amount of oxygen in the home and on the person. The best way for patients to protect themselves, their families, neighbors, and emergency responders is to quit smoking.

Home oxygen therapy. Adjunct or risk factor? 27 patients were admitted to a burns unit as a result of burns sustained while using oxygen therapy over 10 years, 25% were had terminal illnesses and ‘many’ were receiving hospice care. 24 were smoking, 2 were lighting pilot lights, 1 was lighting wife’s cigarette. 4 (15%) Died

Palliative care in chronic obstructive pulmonary disease: a review for clinicians.