In a blog for anyone making health decisions, big or small, Sarah Chapman looks at some key things that can help you make a choice that feels right for you and reduce the risk that you’ll regret your choices later on. Included here are links to good resources and to some of our blogs in which people have discussed their health decisions and shared things that helped them.
Cochrane UK hosted a free webinar on Thursday 20th October on Making health decisions, with patients and doctors reflecting on their experiences and some important things to consider when making health decisions. The recording is available here.
We all make health decisions. Some of these might be about trying to stay well: whether to buy those vitamins, for example, or take up that invitation for a vaccination. Some will be about how to deal with minor ailments, while others may be complex decisions about managing serious illness or long-term conditions.
The costs may be limited to time or money spent on a treatment but of others they might be more far-reaching. Some decisions affect other people around us, adding to the complexity. What can we do to reduce the risk that we’ll regret our decision later, especially when the stakes are high? What can we do to feel, at the time and later, and if people question our choices, or the outcome isn’t all we hoped, that we made the best choice we could at the time? We’ll be talking about this during the webinar, but here are some things that can help.
Ask 3 questions (for starters)
- What are my options?
- What are the pros and cons of each option for me?
- How do I get support to make a decision that is right for me?
Researchers have found that when patients Ask 3 Questions their clinicians provide better information about treatment options.
NHS Inform (Scotland) has a handy checklist you can use to get the most out of your healthcare appointments: It’s okay to ask.
There may be specific question prompts and checklists relevant to your health condition. Lara Cowpe, in her blog Talking to GPs about endometriosis: Lara’s story, mentions resources from Endometriosis UK to help you prepare for Visiting your doctor, which include a downloadable pain and symptom diary. She discusses making decisions in partnership with her GP, and includes tips for people preparing to visit theirs, as well as things she’d like GPs to know.
I’ve written about the questions I thought might be useful to ask, and the things I weighed up in making my decision about whether to have a cochlear implant, in this blog: Discussing cochlear implants with a surgeon.
For Karen Morley, seeking help for Obsessive Compulsive Disorder, finding some relevant Cochrane evidence was key to feeling in control and to having fruitful discussion with a GP about the way forward. You can read about this in her blog My OCD story: evidence-based medicine to the rescue and, in My OCD story part 2, how – four years on – she has become a more confident partner in making shared decisions about her health.
Which brings us to….
Evidence, and learning to spot which health information is trustworthy and which isn’t
Cochrane has worked with Lifeology to produce a free flashcard course – What is an infodemic and how can we prevent it? – that walks the reader through practical tips to combat misinformation and to think critically about health information.
Tips for deciding if information is credible, included in the course, include fact-checking claims by looking for it in different sources like government and research organization websites, and asking:
- Who wrote or said this?
- Are they providing research and stats? Are they telling me where they got this information?
- What’s the purpose of this content? How does it make me feel?
- Could this be biased? Is it news or an opinion? Does it provide both positives and negatives? Pros and cons?
- Is this well written or designed? Does it have typos or look amateur?
- When was it published?
Our Health, Our Knowledge is a free, trustworthy and evidence-based online course specifically for people making health choices. It’s clear to follow and illustrates the points with examples and stories.
The Cochrane Library is one source of evidence that is free from conflicts of interest and provides the “stack of evidence from multiple research studies and clinical trials” (in its systematic reviews) that the Lifeology course points out is more reliable than single studies. It’s free to access for anyone in the UK (and in many other parts of the world). Cochrane Reviews each have a plain language summary which aim to make the evidence accessible to the general reader, and their evidence may be shared in other formats too, such as podcasts and blogs.
Cochrane Evidence Essentials is a free online course introducing health evidence and how to use it to make informed health choices.
iHealthFacts is a web page where you can submit a question about a health claim. to experts in health evidence at the University of Galway.
Evidence synthesis: what is it and why do we need it? is a short video introducing you to this topic.
If you’ve already found some evidence that seems to be relevant to your health situation, your doctor (or other health professional) should be happy to discuss it. But without any prior knowledge, you could ask what the evidence is for any options proposed, including the option of doing nothing – or not yet.
Decision aids are evidence-based tools that can help you work through treatment options.
The National Institute for Health and Care Excellence (NICE) has patient decision aids for a range of conditions, available from their page on Making decisions about your care.
NHS England has a range of decision support tools on specific health conditions, including cataracts, glaucoma and atrial fibrillation.
Ottawa Personal Decision Guides are designed for any health-related or social decisions and are available in several languages.
Our blog Heavy periods: evidence to help you weigh up treatment options highlights some questions you may wish to consider and discuss with a healthcare professional and includes a link to a NICE decision aid. There is also a decision aid on the page Featured Review: Interventions available during pandemics for heavy menstrual bleeding: an overview of Cochrane reviews.
This is a useful framework for weighing up a possible treatment choice:
What are the Benefits, Risks, Alternatives, what do I want and what if I do Nothing? These are good questions to ask yourself and discuss with your healthcare professional.
You can see how these elements looked for me when I was deciding whether to have a cochlear implant in the video about my decision, below.
Choosing Wisely Shared Decision Making Resources for both patients and clinicians include a leaflet for patients with questions that can help them make the right choices for them, and use a version of this framework.
Making decisions for other people
Making health decisions for others for whom we have responsibility can weigh heavily. Many people have shared their stories in the comments on our blog Living and dying well after stroke and tell of agonising over decisions they had to make on behalf of a loved one unable to make it for themselves.
In the blog Informed decision-making” “we can” doesn’t mean “we should” I reflect on how I navigated a health decision for my Mum, who had dementia, with the help of geriatrician Kit Byatt, who gives here some really useful information for making decisions for or with others.
In Tube feeding for people with dementia: making decisions, Charlotte Squires – a doctor in oder adult care – reflects on options for supporting patients with severe dementia and their families, including issues around decision-making. Charlotte says that useful information can be found on these pages on Talking about death and dying and How do I make an Advance Decision (Living Will)?
Clearly documenting personal wishes in advance can be helpful in terms of care planning for any individual. For information about advanced care planning, and also Power of Attorney, see the Compassion in Dying website.
Paediatric intensive care doctor Rufaro Ndokera will be co-facilitating our webinar on making health decisions, and we hope we will have a blog from her on making decisions for children.
We all need honesty from our doctors (and other health professionals), including about uncertainties. This is a huge topic and we hope to add more resources about this as well as a blog about communication across different areas of healthcare. To start with:
In our blog Glioblastoma: honest conversations for shared decision-making Peter Buckle, a patient advocate whose wife died of glioblastoma, and Professor Scott Murray, GP and palliative care innovator, call for honest communication between health professionals and people with glioblastoma and their families, enabling shared decision-making and planning, with a focus on quality of life. They give sources of information and support for patients and families, and practical suggestions for clinicians.
We have included some useful resources about honest conversations and more in the blog Talking about dying: better conversations at the end of life.
There is an excellent resource on Improving news delivery in ultrasound, which has suggestions that could be adapted for other contexts.
NICE also has a Shared decision making guideline for healthcare professionals and people using services (published June 2021)
Ten health literacy principles cancer patients need to know (published October 2022)
Some Evidently Cochrane blogs (in addition to those above) in which people share experiences of decision-making. This list isn’t exhaustive and many of our blogs now include links to useful resources and often suggested questions to ask your healthcare provider:
A blog written by surgeons for people making decisions about prostate cancer treatment: Prostate cancer: to treat or not to treat?
Personal stories of navigating treatment decisions:
Stopping antidepressants: what is the best way to come off them? (Includes questions to ask your doctor)
We will add to this list over time – do feel free to suggest any good resources you have used.
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