Breast screening and compassionate healthcare

For the past 3/4 years I’ve been campaigning about breast screening. Increasingly, research has shown screening (not to be confused with diagnostic mammography) actually causes as much or more harm than benefit.

Yes, I know, at first this doesn’t seem to make sense. Find cancer ‘early’ when small, before it spreads, and your life will be saved. That’s the message which has been promoted. But, since the early days of screening our understanding of the biology of breast cancer has grown.

Finding it ‘early’ is not necessarily a good thing, nor does it guarantee this is going to save your life. As mammography machinery has become better at finding smaller and smaller  ‘changes’ it has just meant more and more people are diagnosed as breast cancer patients, without a decline in mortality. So getting an early diagnosis has just meant women are breast cancer patients for longer – with all the negatives such a diagnosis brings – medicalisation, over treatment, short and long term side effects of treatment eg lymphoedema from surgery or radiotherapy, endometrial cancer from drug therapy, effects on insurance and even dependents’ insurance status. All this apart from the risks of radiation-induced cancers. The irony is that aggressive cancers are more likely to pop up between screenings and be less easily treated, while finding less aggressive cancers when small means earlier medicalisation and the cancer patient label, though these are likely to respond just as well to treatment if symptomatic.

I feel great concern for people who are turned into patients unnecessarily, who lose a breast unnecessarily (cases of Ductal Carcinoma In Situ are usually treated with mastectomy, although ‘carcinoma’ is a misnomer in this case, since the ‘changes’ may never develop into cancer). And I am alarmed that this practice continues despite the research showing lack of benefit and extensive harms of screening mammography – even while we await the outcome of the Marmot Review – the Independent Review of the NHS Breast Screening Programme. And I am concerned that women invited to screening are sent an unsolicited fixed appointment, purporting to come from their GP (though it does not – that GPs have a financial vested interest in their attendance) which gives official backing to mammography screening – pre-judging the Review outcome. If they decline the ‘invitation’ they are told to discuss it with their GP or screening clinic (which puts the onus on these  (healthy) women to take action) and refusal may affect the GP/patient relationship. Even if they do decline by letter they are sent a reminder, and even then their decision is not respected – if they do not want further ‘invitations’ they must fill in and return a form.

And I am alarmed that despite the ongoing Review, the Programme has been extended to include women from either end of the age spectrum, that the invitation they receive does not explicitly state that they are actually being invited into a Randomised Controlled Trial (RCT) (M Richards, bmj 2011), that they are not given full and honest information about screening or the trial and so their ‘consent’ is by default – yet there are usually strict rules governing human experimentation and research.

So where’s the humanity? Where’s the compassion? And what of health professionals involved in all this who have concerns? GPs see the fallout from a breast cancer diagnosis – bad enough when it’s via symptoms. Research has shown screening mostly does not save lives or breasts. But few seem to understand the research – neither public nor health professionals.

According to Emeritus Professor, Michael Baum, top breast cancer surgeon, to continue the screening programme as it is without adequate informed consent is in breach of GMC ethical guidelines.

“RARM (Risk assessment/risk management) is needed.”

A triage system: Those at highest risk first need genetic counselling/testing; those at lowest risk need screening for risk factors for cardio-vascular disease/life-style advice etc; the intermediate group might have the most favourable benefit/harm ratio from mammographic screening.

Sadly, there can be huge political pressures involved in health policy. Imagine the uproar if breast screening were to be withdrawn – imagine the political fallout at the next election – and all because for years the general public has not been given the truth (harms/lack of benefit) about screening – and that the programme must recruit optimum numbers to make the system viable.

So how much do systems drive a wedge between health professionals and patients? How much are we each ‘victims’ in our own way?

References:

1Jorgensen KJ, Gotzsche PC. Who evaluates public health programmes? A review of the NHS Breast Screening

Programme. JR Soc Med 2010;102:14-20.

2 Breast cancer screening. Table 1: Harms of screening mammography. Questions about cancer. National Cancer Institute at the National Institutes of Health.

http://www.cancer.gov/cancertopics/pdq/screening/breast/healthprofessional/Table1 (accessed 9 October 2011)

3 Should I be tested for cancer? Maybe not and here’s why. H Gilbert Welch University of California Press, 2004. ISBN 0520239768

4 Breast screening: the facts – or maybe not. Peter Gotzsche et al. BMJ 2009; 338:b86

5 Effects of mammography screening on surgical treatment for breast cancer in Norway. Suhrke P, Maehlen J, Schlichting E, Jorgensen KJ, Gotzsche P C, Zahl P-H. BMJ 2011; 343:d4692 7 July 2011

http://www.bmj.com/cgi/doi/10.1136/bmj.d4692 (accessed 9 Ocober 2011)

6 Hazel Thornton, M Baum et al, letter, The Times Newspaper, 19 February 2009

7 It is not wrong to say no. Iona Heath, general practitioner, London. BMJ 2009;338:b2529

8 Breast screening: some inconvenient truths (28 Oct 2010)M Baum’s UCL Lunchtime Lecture.http://tinyurl.com/2urbjq2 (accessed 9 October 2011).

9 Screening for breast cancer – balancing the debate. Klim McPherson.

BMJ 2010; 340:c3106

10 NHS breast screening. NHS Cancer Screening Programmes. Department of Health in association with NHS Cancer Screening Programmes. 2010. (Tel 0300 123 1002 quote: 403722/Breast Screening.)

http://www.cancerscreening.nhs.uk/breastscreen/publications/ia-02.html (accessed 9 October 2011)

11 Breast cancer mortality in neighbouring European countries with different levels of screening but similar access to treatment: trend analysis of WHO mortality database.

Autier P et al. BMJ 2011; 343:d4411.

12 The Breast screening programme and misinforming the public. Gotzsche Peter C, Jorgensen KJ. JR Soc Med 2011;104:361-369.

13 Baum M. Science in Parliament (SIP) Vol 66, Autumn 2009.

(There is yet more up to date research, but I’m too tired to look it out at the moment!)

For more discussion on how to put compassion into healthcare see newly launched:

www.heartsinhealthcare.com

HEARTS in HEALTHCARE aims to put the care back in healthcare
HEARTS in HEALTHCARE is an inspirational community of health professionals, students, patient advocates, health leaders, and many others who are champions for compassionate care. We believe bringing like-minded people together is the first step to re-humanizing healthcare around the world.

Healthcare is in crisis, all around the world. Too many health professionals are feeling stressed, overworked, tired, and heading for burnout. And the deteriorating working conditions are doing great harm to patient care too.

The sheer pace of work, the overwhelming workload, the staff shortages, and the increasing use of technology, mean that too often the basic human needs of patients are neglected.

Yet research shows that whole-person, compassionate care is safer, more effective, achieves better outcomes, reduces demand, satisfies patients, gives meaning to work, and costs less.

HEARTS in HEALTHCARE aims to put the care back in healthcare

And joining this community could be good for your health. We’ll be sharing the simple practices that make a significant difference to your happiness and wellbeing.

Even better, we’ll enroll you in a major international research collaboration with Dr Martin Seligman, the founding father of positive psychology. You can opt to join a longitudinal study of the happiness and wellbeing of those who bring their hearts to practice.

Our aims are simple.

  • To encourage health workers to reconnect to the heart of their practice
  • Allow compassionate caring to rise above institutional rules and limitations
  • Promote and encourage whole-person care that serves the needs of patient and families
  • Explore together what is best in healthcare and inspire new communities of practice in compassionate caring
  • Increase the happiness, well-being and resilience of all our members
  • Create the world’s most inspiring community of health professionals, students, patient advocates and leaders, working together in a worldwide movement to transform healthcare from within

Find our more about how our community can work for you

Dr Robin Youngson

Founder, HEARTS in HEALTHCARE

Join us at www.heartsinhealthcare.com 

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About bmitzi

Medical writer, author, artist. Cancer campaigner. Aiming always to improve health services and bring compassion into health care.
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