Book Review - 'Being Mortal' by Atul Gawande

Keywords: Cancer, aging, medicine Title:Being Mortal: Illness, Medicine and What Matters in the End Author: Atul Gawande Publisher: Profile Books ISBN: 978-1846685811

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In 'Being Mortal' Atul Gawande asks a series of difficult, important but uncomfortable questions about the nature of medicine and mortality. These are tricky waters to navigate, but essential all the same as it gets to the heart of what it is we want medicine to do for us. But navigate them we must, both because we have an aging population that often faces impossible choices regarding social care and also in the context of increasing cancer incidence (one of the consequences of that aging).

The author, a practicing doctor, uses the experiences of family, friends and patients alike to illustrate the choices that face us both in aging and in cancer care. He skilfully weaves in these experiences and in doing so puts complex problems into real situations so that he explore the options available, the things we want and cannot have and also, just importantly, draws out the underlying questions. He explores the history and evolution of patient care, how changes in the pattern of work and family life have impacted our expectations of old age. The contrasts between what we want in terms of autonomy and quality of life on the one hand, and what our medical and social care systems provides on the other are brought sharply into life. For those of us who have had to navigate these problems for elderly relatives it is familiar territory outlined with a thought-provoking honesty.

In terms of cancer the problems are starker still. When treatments fail what do we want to do? We are up against the limits of what medicine can deliver. Up against what our medical systems can cope with. The dilemma here is to risk cripplingly expensive new treatments, often with horrendous side effects or to opt instead for palliative or hospice care. These are hard choices to make, assuming we are given the choices in the first place. Sometimes there are less toxic options to try, but many doctors seem to prefer to go for the toxic chemotherapy route rather than step back and look at what the patient wants.

If there’s a theme that jumps out from this book it is that we need to be moving to a different model of the patient-doctor relationship. Dr Gawande describes this admirably. There is the doctor as expert doling out wisdom from on high. There is the doctor as information source giving facts and figures impartially to patients ill-equipped to come to a decision. And then there is the hardest option of all, which is the doctor as partner to the patient. A doctor who engages with the patient to discover what it is that is most important to them and then to help the patient make the choices that deliver the best compromises that are possible. Unfortunately many doctors are simply not trained or don’t have the tools to take this role, which is hard on the patients but hard too for the doctors.

While this is a challenging book at times, it is never sentimental or emotive, it’s humane and concerned. Medical systems the world over are in flux, struggling to cope with the increases in demand that our successes in medicine have delivered. In many ways we should not lose sight of how much progress we have made. But neither should we be happy with the status quo that leaves so many patients poorly served. Something has to give. And perhaps part of what has to give is that old-fashioned view of the doctor as expert, with the patient as passive receiver of care with no say in their own treatment.

The Case of Dr Henry Mannings

It was back in December 2012 that I first wrote about the case of Dr Henry Mannings, the founder of Star Throwers, a charity in Norfolk that helps late stage cancer patients with nowhere else to go. Let me state at the outset that I am a Trustee of Star Throwers and proud to be one. Henry Mannings treated my son George when we had no place else to go. In the many years of treatment that my poor son endured before his death, we met few doctors as dedicated, concerned and open minded as Henry Mannings. George was the first patient that Henry treated with Coley’s Toxins, but by then the disease was so advanced that nothing could stop it – but George, and the rest of the family, appreciated the care and advice from Henry, and the hope that the treatment gave us when there was no place else to turn. And, let me add, Henry made no promises, he did not give us false hope and everything he said or recommended he backed up with evidence and reasoning. In the years since George’s death I have come to know Henry Mannings well and I know that the trust he inspired in us he continues to inspire in the many patients who come to Star Throwers.

However, his popularity with his patients, and his open-minded approach to oncology, makes him unpopular with some of the powers that be. And so in late 2012 a complaint was made by a senior oncologist in Norwich to the General Medical Council. The complaint alleged that Dr Mannings was prescribing chemotherapy drugs in an unsafe manner that put patients at risk, with specific mention of two cases. In neither case was the complaint made by the patient or the patient’s family. In fact the complaint was made without first asking the people concerned whether they had any complaints to make against Dr Mannings.

Based on these complaints the GMC instituted proceedings against Dr Mannings, and initially took the step of taking away his power to prescribe treatment at Star Throwers. This meant that patients who were being actively treated had to stop treatment, even if these treatments were successfully keeping cancer at bay. In response there was an outpouring of support from patients and patient families, from other clinicians familiar with Dr Mannings and his work and from experts in the field who could see no wrong in the work that he was doing or the scientific rationale behind it. He wasn’t offering miracle cures or ripping patients off or acting in any way unethically. The restriction on prescribing was removed in January 2013 but in many senses the damage had been done - doubt had been cast on Dr Mannings competence and the work he did to fund himself while working for free at Star Throwers dried up. More than that, it put him under great personal strain and incredible levels of stress that no amount of public support from patients and friends could quite counteract.

The Medical Innovation Bill

What happens when you reach the end of the road with the standard cancer protocols? A patient starts with first-line treatments, usually a combination of chemotherapy, surgery and radiotherapy, depending on diagnosis and disease staging. If the response to that first-line isn’t positive, the disease continues to spread, then there’s a second-line and possibly a third-line treatment, depending on the type of cancer and how the patient responds to these often toxic treatments. And if the disease is still there at the end of this gruelling process? At this point the prognosis is pretty grim. What happens then?

At this point I should say that I’m speaking from direct personal experience with my son, George, who died almost three years ago from metastatic osteosarcoma that resisted every treatment thrown at it. And from the experience gained in the years following his death in trying to help other people in a similar situation, often also suffering from Li Fraumeni Syndrome as George did.

What happens? In the first instance the lead oncologist will often look for a clinical trial, hopefully a Phase II or Phase III trial. But often the patient will have already been on a trial and come out the other side with the disease still active. In practice if there are trials available, and often they are not, it will be a Phase I trial. The aim of a Phase I trial is to find the right dose to use in a Phase II trial, which is looking to see how well a drug works. Efficacy – how well the drug works – isn’t normally the primary outcome from a Phase I trial.

And if there’s no trial, or you don’t want to go on a Phase I trial with a new drug that might have toxic side effects and no effect on your disease? Then you are in the realm of palliative care. If there’s no standard treatment and there’s trial, then the emphasis is on trying to keep a lid on the symptoms and trying to preserve what quality of life you have given the advanced state of the disease.

But what if there’s something that doctors are using in another country? What if there’s a drug that has been shown to have some effect in your type of disease? What if there are other options that aren’t covered by the standard protocols?

What does significant mean to you?

What does the word significant mean to you? In general usage it's another word for important or substantial, but when it comes to scientific results there's a very different spin to the word. In science results are usually classed as being 'statistically significant', and by science we include medicine and medical research. Very often new results are announced and we are told that these are 'significant', this is particularly the case when these results are announced in the press, especially the popular press rather than the scientific press. The magic phrase 'statistically significant' often gets turned into 'significant', and for the reader not aware of the difference between the two it's normally taken to mean that a result is important or substantial.

Unfortunately 'statistically significant' is just a way of saying that there's only a certain chance that the results could have happened by chance. Normally scientists will talk about a result being statistically significant at a p-level, often p=0.05, which is to say that there's around a 5% (1 in 20) chance that the result could have happened by accident. It doesn't tell us that the result is important, or substantial or even particularly interesting, all it tells us if that you repeated the experiment (or drug trial) you would expect to have to run it 20 times before you got this result by chance.

There are a couple of obvious things to say at this point. The first is to say that p=0.05 sets a pretty low bar. Another way of looking at this is to say that 5 out of every 100 results are just due to chance. Those odds might be fine for the casino or the occasional horse race, but they're way too high for drugs that can kill (or save) people. Surely for medical research we need to be looking at setting the bar higher - we should be looking at results at the p=0.01 or p=0.001 level to make sure that we're not getting spurious results. Even then, a result that is significant at the p=0.001 level means that we're ten times more sure it's not an accident compared to the p=0.01 level, but that's all it means.

A Medical Outrage

Imagine that you are suffering from a rare and aggressive form of cancer, and after the failure of all your treatments you find yourself days away from death. Unwilling to just give up and die you seek out a different treatment and, miraculously, things stop getting worse and start to turn around. This isn't a miracle cure - the cancer is still there - but you start to gain strength, you become more mobile, you have stepped away from the brink. Now imagine that if the only doctor who could prescribe this treatment was suddenly stopped from giving it to you. Your life line has just been snatched away.

That's a pretty horrible picture I've just painted, but this is exactly the position that Gary Bowden, suffering from a rare bone cancer called chondrosarcoma, finds himself in. The treatment that has pulled him off the Liverpool Care Pathway is Coley's Toxins, prescribed by Dr Henry Mannings at Star Throwers in Wymondham, Norfolk. Dr Mannings is the only person in the UK licensed by the MHRA to give Coley's to his patients. Yet because of a completely unrelated complaint Dr Mannings has been banned by the GMC from prescribing drugs at Star Throwers. Effectively this is the end of treatment for Gary Bowden and the other patients receiving Coley's.

The whole thing stinks. It's an outrage that patients with no other treatment options are being denied a treatment that is working for them. Not one patient has ever complained about Dr Mannings and his treatments - not one.

I am proud to be a trustee at Star Throwers, and I've seen the statement that Gary Bowden wrote to the GMC prior to the hearing against Dr Mannings. It's a catlogue of misdiagnoses, poor treatments and worsening disease. The failure to diagnose his disease for two years doesn't have any spin-offs, but Henry Mannings prescribing at Star Throwers does. It's an outrage.

You can read more about Gary Bowden here: http://www.bbc.co.uk/news/uk-england-norfolk-20579518

Dr Henry Mannings and the GMC

There have been a number of reports in the press and on TV about Dr Henry Mannings and Star Throwers. I have written about Dr Mannings and his use of Coley's Toxins before. In my opinion he is above reproach and the case against him without foundation. The following is a statement that has been issued by Star Throwers, the cancer charity that Dr Mannings founded, and where I am glad to serve as a trustee.

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Star Throwers would like to make it fully clear from the outset that we understand the purpose of the GMC Interim Orders Panel is to ensure patient safety, which we are in full agreement with.

Dr Mannings attended a GMC Interim Orders Panel hearing on Tue 27th November 2012, after which the GMC have concluded that there are no grounds for suspension. They have, however, decided to restrict Dr Mannings' prescribing of medication to within NHS premises only.

Star Throwers charity will remain open as usual, with Dr Mannings continuing to offer advice and support to cancer patients and their families.

The restriction is based on the allegations of one oncology consultant at one hospital, and is despite the fact that the two patients mentioned in the allegations had significantly benefitted from the therapy they had received from Dr Mannings. At no time have there been complaints from any of Dr Mannings’ patients or their families.

The loss of prescribing ability at Star Throwers is a loss to many of the patients who have been given up on by their own oncologist.

It is important to note that the IOP's decision is based "on the interest of patient safety" and has no bearing regarding any findings of fact or the veracity of the allegations.

Although we are not allowed to discuss the details of the Interim Orders Panel's decision report, we find the decision made by the panel difficult to understand considering the overwhelming evidence produced in favour of Dr Mannings, particularly by experienced senior oncologists, a professor of oncology, nurses and pharmacists.

We hope that there will be a full public GMC hearing, whose purpose is to decide the veracity of the allegations, within the next 18 months so that the true facts of this case will become evident.

Dr Mannings would like to express how touched he is by the hundreds of letters written and phone calls in support of Dr Mannings and all the staff at Star Throwers.

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Fighting Cancer?

I've written before about the metaphor of a "war on cancer" - not a phrase I find particularly helpful. One aspect of this "war" is that patients are seen as in a personal battle with the disease. They are in a fight with cancer - the disease is at war with them - and the weapons in that war are toxic treatments like chemotherapy, radiation and radical surgery. I don't think these are useful images and are more likely to inspire horror than hope.

I am reminded of all this by reading a really interesting blog post from a person with Li Fraumeni Syndrome and who currently has a rare form of cancer called Leiomyosarcoma,. The blog is called 'Always Look On The Bright Side...' - and the post on 'Fighting Cancer - A Personal View' is well worth a read.

February 29th is Rare Disease Day 2012

In the words of the the Rare Disease UK network:

• 1 in 17 people will be affected by a rare disease at some point in their life.
• This amounts to approximately 3.5 million people in the UK.
• 75% of rare diseases affect children and 30% of rare disease patients will die before their 5th birthday.
• There are over 6,000 recognised rare diseases.
• Collectively rare diseases are not rare.

Rare Disease UK (RDUK) is the national alliance for people with rare diseases and all who support them. We believe that everyone living with a rare disease should be able to receive high quality services, treatment and support.

One of those rare diseases is Li Fraumeni Syndrome, and the George Pantiarka TP53 Trust is proud to announce that it has joined RDUK. To find out more about the network, and what it's doing for Rare Disease Day 2012 please take a look at: http://www.raredisease.org.uk/news/rdd2012_2weeks.htm

In particular note that there's a political angle to this campaign:

It has now been over 2 years and 9 months since the Government signed the European Recommendation which committed them to developing a plan for rare diseases.
It has been a year since Rare Disease UK launched our comprehensive recommendations to inform the plan in our report Improving Lives, Optimising Resources: A Vision for the UK Rare Disease Strategy

As a result, we are using Rare Disease Day to call for no further delays to the plan. Please help us to do this by writing to your politician! If you have done so already, thank you very much – we have had a fantastic response rate! RDUK has also been busy contacting politicians, but as their constituent, you have the most influence over your representatives.

Information on how to contact your local politician and template letters depending on whether you live in England, Scotland, Wales or Northern Ireland are available here.

Let's hope that the activity and extra focus on February 29th has an effect at last.

An Invaluable Service by Irene Pantziarka

When entering the unknown world of watching your child slip slowly on to the path that leads towards death and the finality of non-existence, there is little comfort to be found, particularly if you are an atheist. Consequently, any support that can be identified, which enables you to go on and face each day, making the most of every moment that your son or daughter is still with you, becomes a lifeline. 

For our family, such support came in the form of the paediatric outreach nursing team (PONT) from our local hospital (Kingston). This is a team of nurses who, as the title suggests, visit families in the community, providing certain nursing services for sick children. This means that families do not have to journey to hospital every time they need for example a dressing changed or a line flushed. The nurses work around the family’s schedule. They disrupt family routine as little as possible, fitting in with your convenience, rather than expecting you to fit in with theirs. This is in great contrast to the experience of being in hospital, where almost everything seems to be done at the hospital’s convenience and patients can wait endlessly, with no apology given. In other words, the PONT service is family-centred and providers of other hospital services could learn a huge amount from them. 

I cannot stress enough the value of this service to families like ours. The PONT figured in our lives from the beginning of George’s treatment – changing dressings, flushing lines, offering help and advice – but it was during the final stages of our son’s cancer that their presence became invaluable.

Comment Spam

One of the things I've discovered since starting this blog, is that there are some people for whom no website, forum or blog cannot be exploited for gain. This site encourages comments from readers, but it has to be said that there aren't many comments being published. It's a shame, but I guess that some people just want to read and not write. The fact that traffic is increasing and that many of the visitors are being referred here via other blogs, Facebook and other social media is positive.
 
But comments are being left here that I'm not publishing.

This site uses comment moderation - comments have to be approved before being published - and it's a good thing too. Everyday there are comments left here which are really just 'comment spam'. The comments contain some innocuous are often barely literate text - 'this is a good useful nice site, for sharing' - along with a link to another site. Usually the link leads to some company selling something cancer-related: supplements, nursing care, clinics etc.

I think it's really low to try and exploit an anti-cancer site like this - have these people got no conscience?

A new cancer blog

My neice, Penny, has previously blogged on this site about her campaigning work as an Ambassador for Cancer Research UK. She has just started a new blog, Penny's Pieces, where she writes about cancer, campaigns and more personal stuff. Please take a look. Amd,, while you're at it, she is still looking for volunteers for her fund-raising day in Woodford Green.

Guest Post - Penny

The following is posted on behalf of Penny Sophia-Chistophe:

On April 25th 2011 I received a phone call to inform me that my beloved cousin Georgie had died. It was the morning of my 22nd birthday. Georgie and I had always been close so his death was incredibly hard to bear. He was the sixth of my close relatives to die in my lifetime. Two Grandparents, two aunts, an uncle and now a cousin all snatched away by cancer.

A consequence of this is that I decided to channel my anger and sadness into trying to save others.

I applied to become an ambassador for Cancer Research UK (CRUK). CRUK’s ambassadors are a brilliant group of passionate supporters working hard to help CRUK effectively influence politicians, engage the local media in their campaigns and try to help them save lives. Our stories, experiences and passion have become one of CRUK’s most powerful campaigning tools and are vital part of their work.

As an ambassador my activities are varied and interesting:

* Communication with local politicians and parliamentary representatives; flagging up our campaign issues and persuading them to back us and take positive action on our behalf.

* Engaging with our local and regional press; securing coverage for our campaigns and raising awareness in our local area.

* Lobbying for specific cancer related campaigns.

Our current campaign is “A Voice for Radiotherapy”. CRUK believe everybody deserves the best chance at fighting cancer and beating it. This means giving them access to the best possible treatments. Up to half of all cancer patients could benefit from access to world class radiotherapy treatments but only 4/10 people with cancer currently do. We are campaigning to make sure it is available to everybody who could benefit from it.

Awareness of radiotherapy is low; a recent CRUK survey reveals that 14% of people are aware of it. We are concerned that a lack of public awareness means that radiotherapy does not receive the attention is needs to develop into a world class service in the UK.

We are calling on the government in England to introduce an action plan, to tackle unequal access to radiotherapy and make sure that all services have the appropriate workforce, the best treatments and the capacity to plan for the future. We want to make sure that everyone who needs it has access to world class radiotherapy treatments.

Please take a moment to sign our petition and get as many of your loved ones to do the same:  http://e-activist.com/ea-action/action?ea.client.id=149&ea.campaign.id=9329&ea.tracking.id=PennySC

We will be handing this petition in at Downing Street in November. We are aiming for 36,000 signatures, one for every person who misses out every year.

Thank you

Penny (pennychristopher@googlemail.com)

Summer reading

Summer reading this year included 'The Edge of Physics' by Anil Ananthaswamy. The book describes a series of key experiments currently taking place that probe the raw substance of the universe. The most well-known example is the Large Hadron Collider at CERN, which is currently looking for evidence for the existence of the Higgs boson, but it is only one of a number of monumental studies in progress. We are at the point where scientists are probing for the evidence for the existence of multiple universes, for understanding at a deep level what space-time is made off, what dark matter and dark energy are.

It's amazing stuff for sure, but one thought kep coming back to me as I read through the book - why is it we know so little about cancer? Reading the cancer literature one is struck again and again by how ignorant we are about this vile disease. Even basic things - the role of antioxidants, the causes of chemo-resistance, the mechanisms of immune escape - seem to be beyond us. Where are the major theroretical breakthroughs in cancer? Where is the basic knowledge that will unlock new therapies? The more one reads of the cancer literature, the more one realises that we're groping in the dark.

Let's hope that more physicists and engineers start to look at cancer - perhaps some fresh approaches are what we need to make progress. Because major progress is what we desperately need in this area.

Volunteers Required - Fund-raising in Woodford Green, Essex

December is National Childhood Cancer Awareness Month, and George's cousin Penny will be organising fund-raising activities in his name for Clic Sargeant. We  have a personal connection with Clic Sargeant, the team at the Royal Marsden in Sutton provided lots of support for our family during George's illness. It's a great charity that helpes people in very practical ways at a difficult and distressing time.

Penny is organising activities at Tesco's in Woodford Green in Essex on December 15th and 16th. It's still in the planning stage, but volunteers to help out would really be appreciated. More details will be posted closer to the event, but if you are in the area and want to help out for a worthy cause then please drop a line to pennychristophe@googlemail.com

George's 18th Birthday

Today should have been George's 18th birthday. Instead it's just a little over three months since his death, on April 25th 2011. We miss him always but today it hurts so much more because we know how much it would have meant to him. He should have had a whole life to look forward to...

Although we are consoled by the knowledge that he knew how much we loved him, and that he loved us in return, the injustice of it all is still hard to deal with.The world moves on, but for us, the world is a poorer place without him.

Meeting your oncologist

Most of the articles on this site have so far focused on cancer research or the politics of that research. However, the intention is to do more than just summarise results or to argue for changes in policies, it is also firmly about providing practical support and advice to cancer patients, their families and friends. With that in mind this post is going to look at something that might seem trivial but in reality is absolutely essential – how to approach the meetings with your oncologist or other specialist. While some people will view an article like this as being a bit pointless, there are others who might gain some useful tips, particularly as we all have a tendency to defer to our doctors. The whole area of doctor-patient relationship is a bit of a nightmare, for all sides, but unless that relationship is solid things will be more difficult than they should be.

When you first get your diagnosis, or when waiting for results from scans or examinations, you will be stressed on meeting your doctors. No matter how much you like them or respect them, you’ll be feeling tense and nervous, a not a little apprehensive. Sitting in the waiting room can be hard, especially if the clinic is running late and you’ve been waiting for ages (which was the norm, in our experience). At times like these it’s easy to get so stressed that you forget to ask the things you’ve been meaning to ask. It’s ridiculous, because you may have been waiting for ages to ask these questions, but you can be blindsided by news (good or bad), get diverted by some other train of thought or simply forget everything and just sit there passively while the doctor leads the discussion. Afterwards, you’ll kick yourself for not having remembered to ask your questions and will either have to wait for the next appointment or get on the phone or look for someone else to ask.

Introduction

The original idea for this website came out of a series of conversations with my son, George, about a year after his diagnosis with osteosarcoma of the mandible. By this point he had been through a number of treatments but the disease was still progressing, but he was pretty healthy and thinking about the future. We had learned a lot about cancer, treatments, and supplements and were still actively looking for new therapeutic options. We felt that we’d learned a lot that might be useful to other patients and their families and friends. A website was the obvious way of sharing this knowledge and we registered the domain name soon after.

George designed the logo and had lots of ideas. He wanted the site to be self-funding and hoped that it would also make money that he could put into his university fund, so he was keen that the site carries adverts. Lots of good ideas but nothing came of it at the time. Now, after his death at the end of April 2011, I am putting the site together to put into practice some of the things we talked about. Any money raised will be distributed to the charities that he supported.

The site will include commentary on cancer research, information on supplements and treatments, diet, details of George’s story, relevant book reviews, links to useful sites and other information that cancer sufferers may find useful.

Pan Pantziarka