cancer – your right to choose
by Jenny Bryan
As Gail Collins lies dying in Channel 4's powerful drama series, Swallow, she accuses her guilt-ridden brother of bullying her into the cancer treatment that has made her last few months of life a misery.
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'I let him choose my treatment. I let him persuade me drugs would save me. I was in charge of my health and I let his fucking fear take over in bad faith. I am going to die, and how I lived the last bit of my life – you took that away from me,' she says.
During the programmes we watch as Gail gives up the complementary therapies she has been using to try to keep her aggressive bone marrow cancer (lymphoma) at bay and is sucked into a world of chemotherapy and stem cell rescue, sickness, hair loss, chest infections and oral thrush. A world of brief consultations with busy specialists and stark choices – take the treatment or die.
It's a world with which thousands of people with cancer are all too familiar. But it's also a world which is changing, as cancer doctors recognise that people are individuals and the 'one size fits all' approach to decision making simply doesn't work.
individuals, not stereotypes
'We are all very different with different value systems. We place different emphasis on life and well being. So what may seem irrational to one person may seem sensible to another,' explains Professor Lesley Fallowfield, head of the Cancer Research Campaign's Psychosocial Oncology Group at Sussex University.
She and others have carried out studies which consistently show that people with cancer want much more information than their doctors think they do. Many doctors are also rather poor at judging what information their patients are capable of understanding.
'There are a lot of stereotypes – old people who don't need much information because they won't understand, anxious people who will only get more anxious if they are told anything. Sometimes it's true, but if you use these stereotypes as your primary approach to giving information, you'll be wrong most of the time,' says Professor Fallowfield.
no certainties with cancer
As patients, we may unwittingly give out the wrong signals. By asking 'what would you do, doctor?', we may appear to hand over the responsibility for making our decision. And, by demanding certainties – 'how long have I got?' – we encourage our doctors to be overly optimistic.
Professor Fallowfield explains that people have a need for certainty but, when it comes to cancer, there is none. No one can predict the outcome, even for cancers where there are good treatments. But the failure to find any certainty is psychologically very destructive.
'Doctors want to believe in the same miracles as their patients and studies show that they tend to be hugely over-optimistic about prognosis. The closer they are to their patients, the less accurate they are likely to be. They want them to get well so they look in the upper range of possibilities,' Professor Fallowfield explains.
sharing the decisions
Few people want to go it alone when it comes to deciding what treatment to have. Two recent studies reported that people who were happiest with the way their treatment had been chosen had shared the decision-making with their doctor.
But making decisions takes time, and that's something which is often in short supply in outpatient clinics. A growing number of cancer centres employ specialist nurses or other liaison staff who do have more time to discuss the diagnosis with patients, look at information booklets with them and answer their questions.
more time to decide
No one should be expected to make 'on-the-spot' decisions about their treatment – as Gail Collins appeared to do in Swallow. Although cancer should normally be treated as soon as possible after it is diagnosed, taking a few days to consider the options is not going to affect your chances of recovery. It will give you time to consider the information you have been given, talk again with your medical team, and check out other specialist sources of cancer advice, such as those provided by CancerBACUP (see help and info).
what to ask
Before making any decisions, you should feel that you have been told everything you need to know about the proposed treatment, what it aims to do, how it will be done, how long it will take and what the side effects might be. Be sure you know what steps will be taken to minimise those side effects and how to get additional help if you are having problems.
Once the decision has been made, treatment should normally start as soon as possible, to reduce the anxiety of waiting. That should mean within a few days for simple radiotherapy or chemotherapy, up to a maximum of a couple of weeks for complicated, intensive treatments which require considerable planning.
complementary therapies
Surgery, radiotherapy and chemotherapy (with or without stem cell rescue) form the basis of treatment and can be very effective in curing cancer or prolonging survival (see abc of body under 'radiotherapy', 'chemotherapy' and 'stem cell'). But that doesn't mean that complementary therapies do not have a valuable role in helping people to feel better. Some cancer centres offer relaxation, visualisation and other techniques as part of their treatment as they have a recognised place in making people feel better and stronger and more able to cope with their cancer and its treatment.
Cancer diets are more controversial, as they are often based on raw vegetables and fruits in meals that are time consuming to prepare and may not offer the energy-giving balance of nutrients that people with cancer need.
changing your mind
Everyone has a right to change their mind at any stage of their treatment. Unfortunately, setbacks in cancer are common and, because of the side effects of many treatments, you may well feel worse before you feel better. However, if you decide not to continue, your doctors must respect your wishes. There may be other options and withdrawing from one treatment should not prevent you from trying something else.
Your doctors, nurses, family and friends can offer advice and answer your questions but you always have the right to choose.
help and info
Channel 4 is not responsible for the content of third party sites.
organisations
CancerBACUP
3 Bath Place
Rivington Street
London EC2A 3JR
Helpline: 0808 800 1234 or 020 7739 2280 (Mon-Fri 9am-8pm)
Tel: 020 7696 9003 (Mon-Fri 9am-5.30pm)
Website: www.cancerbacup.org.uk
Provides up-to-date information, advice and support to cancer patients, and their families and friends on all aspects of cancer and its treatment, and on the practical and emotional problems of living with the illness. The helpline, above, is staffed by specialist cancer nurses.
Macmillian Cancer Relief
89 Albert Embankment
London SE1 7UQ
Macmillan Cancerline: 0808 808 2020 (Mon-Fri, 9am-6pm)
Textphone: 0808 808 0121
E-mail: cancerline@macmillan.org.uk
Website: www.cancerlink.org
Contact the Cancerline for cancer information and support, details of local organisations, relevant publications and other resources. Staffed by people with experiences of cancer. The website has more information.
Marie Curie Cancer Care
89 Albert Embankment
London SE1 7TP
Tel: 0800 716 146
E-mail: info@mariecurie.org.uk
Website: www.mariecurie.org.uk
Marie Curie Nurses care for seriously ill cancer patients in their own homes and should be accessed through the district nurse or GP. Marie Curie also has 10 hospices around the UK.
Cancer Research UK
PO Box 123
Lincoln's Inn Fields
London WC2A 3PX
Tel: 020 7242 0200
Website: www.cancerresearchuk.org
Dedicated to research on the causes, treatment and prevention of cancer, with the aim of controlling the disease within two generations.
websites
Cancer Index
www.cancerindex.org
A guide to the internet resources available for cancer. Includes UK-based organisations, a guide to medical terminology and over 4,000 links to cancer sites.
Lymphoma Forum
www.lymphoma.org.uk
A nationwide support organisation for people diagnosed with non-Hodgkin's and Hodgkin's Lymphoma. Their website provides information on types of lymphoma and treatment as well as details of their helpline and how to find out about lymphoma support groups around the country.
Gray Cancer Institute
www.graylab.ac.uk
Detailed site providing information and links for both patients and health professionals.
Patients Talking
www.patientstalking.com
A website for people to read and write diaries about a wide range of medical conditions and, if requested, confidentially make contact with others. It can also help people who may not directly have a condition but have concerns for a friend or relative with an illness.
National Electronic Library for Health
www.nelh.nhs.uk
Run by NHS libraries, this is a pilot site for a digital library. For use by NHS staff, patients and the general public.
reading
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Choices in Healing: Integrating the Best of Conventional and Complementary Approaches to Cancer by Michael Lerner (The MIT Press, 1996) |
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Complementary Cancer Therapies: Combining Traditional and Alternative Approaches for the Best Possible Outcome by Dan Labriola (Crown Publications, 2000) |
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Recovery from Cancer: The Remarkable Story of One Woman's Struggle with Cancer and What She Did to Beat the Odds by Elaine Nussbaum (Square One Publishing, 2003) |
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'Participation of Patients in Decisions about Treatment for Cancer' by L Fallowfield in British Medical Journal vol 323 (17 Nov 01) page 1144
Available to read or download from www.bmj.com
(December 2001, resources updated January 2005)
