Lung Cancer Archives

Lung cancer is the second most common cancer in men and women. About 14% of all new cancers are lung cancers.

The two main types of lung cancer are non-small cell lung cancer and small cell lung cancer. The types are based on the way the cells look under a microscope. Non-small cell lung cancer is much more common than small cell lung cancer

More resources for Lung Cancer from Patient Empowerment Network.

15 Tips To Get the Most From Your Doctor’s Visit

beautyHave you ever had the experience of leaving the doctor’s office wishing you had remembered to ask a certain question? Or have you left it until the very end to tell your doctor about the real reason for your visit? These so-called “doorknob” questions – bringing up an important concern just as you are leaving the office – can mean your doctor won’t have time to adequately address your concerns. When the average time it takes for a doctor’s visit is fifteen minutes, it’s easy to feel rushed and forget what you wanted to say, or to leave an appointment unsure of the information you have heard. But with a little advance preparation you can learn how to make the most of those fifteen minutes. Follow these fifteen tips to become a more empowered and engaged partner in your own health – and the health of those you care for.

1. When you call to make your appointment, explain clearly why you need to see the doctor. Let the receptionist know how much time you will need to schedule for the visit. If you have any special needs, such as wheelchair access or interpretive needs, let the office know in advance.

2. Be sure to that where you make your appointment accepts your insurance. You can call or go online to your insurance website to see a directory of in-network providers.

3. If this is your first visit to a new physician, gather together any past medical records and family medical history to take along with you.  If you’re seeing other doctors and have information they’ve provided, bring this along too.

4. Write down a list of your symptoms before the visit. It’s a good idea to keep a diary so you can chart your symptoms over time. Include details of the type of symptoms you are experiencing, when these symptoms began, and what makes them better or worse.

Use this common medical mnemonic to guide you.

(O)-P-Q-R-S-T

  • Pain (“Where does it hurt?”)
  • Quality (“What does it feel like?”)
  • Radiation (“Does it move anywhere?”)
  • Scale (“How bad is it? How much does it affect you?”)
  • Timing (“When did it start? How long does it last? Does it come and go? Is it gradual or sudden in onset? What makes it better or worse?”)
  • Other (“Any other symptoms?”)

5. Set the agenda at the start of your visit. Did you know that a patient has an average of 23 seconds to state their concerns before a physician interrupts? According to an article published in The Journal of the American Medical Association, only 28% of doctors know their patient’s full spectrum of concerns before they begin to focus on one particular concern, and once the conversation is focused, the likelihood of returning to other concerns is only 8%. Doctors have a limited amount of time for office visits. In order to use their time wisely they usually set the agenda and control the visit as much as possible. To avoid this happening to you, prepare in advance the top two or three concerns you want to raise with your doctor. Are you looking for a diagnosis? Do you need a new treatment plan or a modification of an existing plan? Are you looking for help with feelings of fatigue or depression? Don’t forget to describe your emotional state and any personal circumstances which may influence your physical health. Write down your main concerns so you are ready to verbalize them clearly at the beginning of  your visit.

6. If you use a self-tracking device, like a Fitbit, download your data and summarize the findings beforehand.

7. Bring a list of all medications you are currently taking, including over-the-counter medications, vitamins, herbs, or supplements. If you have a smart phone or tablet, it’s useful to take pictures of your medication and supplement labels to show the doctor.

8. During your visit, tell your doctor you would like to take notes. If you would prefer to record your notes via your smartphone, ask your doctor if it is ok to do so.

9. Medical care is a conversation. So to have influence in that conversation you have to speak up. If you don’t want the treatment your doctor recommends (or you’re not sure), it’s reasonable to ask if there are other treatment options available. Never be embarrassed to tell your doctor if you don’t understand something she has said. Sometimes doctors use medical jargon without realizing they are not explaining things in terms we understand. Repeat what the doctor has told you to be sure you understand and ask for clarification if needed

10. If you find it difficult to speak up for yourself, or you are facing a potentially challenging diagnosis, bring a friend or family member along for support. This person can also take notes and help you remember what was discussed later.

11. Always be honest with your doctor. You may not like to admit how much you drink, or smoke, or if you have stopped taking your medication because of expense or side effects, but your doctor needs to know about these and other lifestyle matters to ensure you are receiving optimum care.

12. Ask you doctor to explain any test results to you, Request a copy of the results for your own files.

13. Before you leave, be sure you understand what needs to happen next. Do you need any further diagnostic tests? When will you get the results? If you have just received a diagnosis, what are your treatment options? If you have questions or concerns later how should you contact your doctor? You can also ask if your doctor recommends any specific reading materials or websites about your condition.

14. If you have been given a prescription for a new medication, do you understand how and when the medication should be taken? Are there any side-effects, for example drowsiness, you should watch for? How will you know if the medication is working? What happens if you miss a dose?

15. After your visit, review and file your notes along with any test results or other documentation and billing you received. Schedule any follow up tests or appointments right away.

Your relationship with your doctor is one of the most important you have. Advance preparation will help you use your own time and your doctor’s time more efficiently and effectively. When people take an active role in their care, research shows they are more satisfied and do better in how well treatments work. Preparing for your doctor’s visit is an important step toward becoming a partner in your own health care and a better advocate for your health and well-being.

The Benefits and Pitfalls of Blogging About Your Illness

In his book, The Wounded Storyteller, Arthur Frank, Professor Emeritus of Sociology at the University of Calgary, writes that when we are ill we are wounded not just in body, but in voice. He describes how illness can radically alter how a person relates to the world and how we need to find a way to restore our fractured identity. When I was diagnosed with breast cancer over a decade ago, writing a blog, Journeying Beyond Breast Cancer, helped me express myself, reconnect to a new sense of self, and find my voice again.

Throughout her life, the writer Virginia Woolf maintained that her work was incomplete until it was shared with readers. And I think this is also true of being part of a blogging community. When we share our writing, someone else has heard our voice. Someone else cares and understands. So often, illness causes us to feel isolated and cut off from others. Blogging is a way for us to find a shared sense of connection and community.

Yet sharing our story online is not without its pitfalls; the most obvious of which is a loss of privacy. You should consider how revealing your medical history online might have an impact on your family and professional circumstances. How will your employer, co-workers, or other family members view you? Do you risk being over-identified with your illness? For me, disclosure of my own story has evolved from initial anonymity to a point where I now choose to share more openly. However, the degree to which I share information still depends on the space where I share it and the degree of trust I have with the people I share with (for instance I consider my blog a safe space to tell my story, but I am more cautious on Twitter). But what happens if that safe space is violated and our expectations of trust are shattered? When our words are taken out of context or used for a purpose we didn’t intend? Is information shared publicly implicitly available to everyone just because it is in the public domain? What are the ethics of research that includes collecting and analyzing patient stories or observing online behaviour without individuals knowing they are being included in research? In an age when technology has outpaced the ethical underpinnings of research and the culture surrounding privacy has changed profoundly, these are questions we need to find answers to.

Although we understand that what we share online is in the public domain, we nevertheless trust each other to maintain a collective sense of privacy, which includes not having our words reproduced without our knowledge or taken out of context. The issue of maintaining privacy in the public domain was brought into sharp focus two years ago when blogger Lisa Adams became the subject of an online debate. Adams, who blogged and tweeted about her experience of living with end-stage cancer, came to the attention of two journalists who strongly criticised what they called “Adams dying out loud.” Their opinions ignited a firestorm of debate about the public disclosure of illness, and the sharing of personal choices surrounding treatment and death and dying.

Illness makes us vulnerable and learning to navigate the digital landscape while also managing our vulnerability is a skill that we need to master if we are to protect ourselves online. Think carefully about what the process of online disclosure entails. Weigh up what you expect to gain from it and what implications sharing this information might have on your career or family life. If you are a parent or carer who writes about a patient, do you have their permission to share this information? In the case of writing about a child, what future effect might this have on one who cannot give consent or understand the significance of their story being shared so widely?

People have always gathered together to share what they know about health and illness, hoping to help and learn from others. What’s new is that we now have the ability to expand the reach of our conversations at internet speed and at internet scale. What happens in real life happens on line, but faster. This has many benefits, but it also means there is a higher potential for unintended consequences when we have less control over who sees our stories. It’s a good idea to periodically review the privacy settings on your social media accounts to decide if you are comfortable with the level of control you have over the information you share. Ask yourself, if your intended audience were sitting in front of you now, how comfortable would you feel sharing this information? How do you think you’ll feel after sharing it? Are you ready for feedback (positive or negative)? Remember sharing your story online doesn’t have to be all or nothing. Go slowly at the beginning, allow trust to build over time, and share only when you feel ready to do so.

Above all, be courageous in sharing your story. I am filled with gratitude for those who bravely blazed the trail in opening the discussion and decreasing the isolation connected with serious illness. I continue to be in awe of the connections and communities forged in the digital space and I look forward to seeing how this will evolve over time.

Seven Steps to a Successful Digital Advocacy Strategy

Digital advocacy concerns the ways in which you engage your audience online and inspire them to take action around your cause. Using digital tools and applications can amplify your issue, while giving you new opportunities to listen and engage with supporters, and monitor your progress.

Creating a digital strategy will help you focus on your goals more clearly, choose the right digital tools, promote key messages, and measure outcomes more effectively. Ultimately, the right strategy gives you the best chance of using digital channels (like Facebook, Twitter, Instagram, etc.) to reach the right audiences with the right messages at the right times to advance your advocacy.

Step One: Set Your Communication Goals

The first step to any advocacy strategy is to establish clear objectives and goals that you hope to achieve. What are you trying to accomplish? For example, you might want to increase public understanding of the issues you advocate for, mobilize supporters to take action, or raise funds to support your cause. You will need to set SMART goals, which are:

  • Specific
  • Measurable
  • Attainable
  • Realistic
  • Timebound

Specific – define your goals as clearly as possible.

Measurable – put figures on what you want to achieve e.g. increase visits to the website by 40%; gain 100 new Twitter followers or Facebook Likes.

Attainable – make your goal attainable in terms of the resources and capabilities you have.

Realistic – to be realistic, a goal must represent an objective toward which you are both willing and able to work.

Timebound – your goal should be grounded within a time frame.

Step Two: Define Your Target Audience

Who does your message need to reach? Obviously, you want to reach as many people as possible, but by choosing which audience to prioritize in your digital communications you will improve your reach, enhance relevance and put your resources to the best possible use. Find answers to basic demographic questions about your audience, what issues they are concerned with, alongside which online communities inform, inspire, or influence them. You can then tailor your content more specifically to match your audience.

Step Three: Choose the Right Social Channels

Once you’ve identified your target audience, map this information to social media behavior to help determine which social channels to concentrate on. Publically available reports, like Pew Research Center The Demographics of Social Media Users, can help you with this step. Social media are dynamic and constantly changing. When you develop your digital advocacy strategy, be prepared to be flexible. As new networks emerge you might want to add them to your strategy, but it’s important to always relate this back to your goals and your audience to ensure it fits your plan.

Step Four: Create Compelling Content

What is the key message(s) you need to convey to your target audience? How will you communicate it? Sharing the stories of
real people affected by your cause will be the most powerful and compelling content you can create. Share this content via blogs, videos, podcasts, email, etc. Bear in mind the content that works best on the platforms you have chosen. The continuing growth of visual platforms, such as Pinterest, Snapchat and Instagram mean that incorporating visual content into your digital strategy is important. Whichever type of content you create include a clear call-to-action. Make it clear and unambiguous what the next step is after reading or viewing your content; for instance, sign a petition, share on Twitter and Facebook, or donate to your cause.

Step Five: Implementation

Time is probably the biggest challenge in implementing your strategy. To achieve results and credibility you have to be prepared to commit time regularly to producing and promoting content and engaging with your audience. Decide on how much time you can realistically devote to implementation. Do you have time to write regularly for a blog? Would it be better to make short videos instead? Create an editorial calendar and list the dates and times you intend to post blogs, Facebook posts, Twitter updates, etc. Use a scheduling tool, like HootSuite or Buffer, to schedule you social media updates in advance. There are numerous tools and applications, many of them free, which can help you spend your time more efficiently and productively on social media.

Step Six: Monitor Social Media

It’s important to monitor social media on a regular basis to keep on top of what people are saying about you, your organization, campaign, or issue. It also gives you an opportunity to find relevant online discussions related to your cause, allows you to adjust your strategy in real time and guides you to key online influencers and opinion leaders who can help amplify your message. Setting up a simple Google Alert (email updates of the latest relevant Google results based on your queries) with relevant keywords is a good place to start. Use a tool like Hashtracking to monitor a particular hashtag, related hashtags, and the top influencers of that hashtag.

Step Seven: Measure and Evaluate

The final step is to measure and evaluate your progress, adjusting your strategy if necessary. Some key metrics to track are the number of followers you attract and retain, which social media channels drive the most traffic to your website, the number of comments you get, and how many times your updates have been shared. Google Analytics will provide you with detailed analytics to measure your website performance. Each of the main social platforms also has their own analytics built in. Other useful tools include:

  • SumAll measures your Twitter follower growth, mentions, and engagement
  • Klout measures your online social influence via a “Klout Score”, which is a numerical value between 1 and 100.
  • Spredfast measures data gathered from Facebook, Twitter, YouTube, and Flickr, to show how many people you’ve reached and whether or not your target audience is engaging with you.

Final Thoughts

Digital advocacy helps amplify advocacy efforts by potentially reaching more people, in more places, faster than ever before. It works best when it is aligned with your existing offline tactics. Think about how you can integrate your everyday advocacy activities with your digital strategy to maximize impact. Don’t expect digital advocacy to work right away. It is a strategy that will succeed long-term, rather than be a quick success. If you want to see real results, you must be prepared to commit to it long-term. Finally, keep in mind that social media are constantly changing and evolving, and you will need to keep evaluating your strategy to ensure you are maximizing your opportunities to engage meaningfully with your supporters.

How to Read Beyond the Headline: 9 Essential Questions to Evaluate Medical News

Ben Goldacre writing in Bad Science classified science reporting as falling into three categories – wacky stories, scare stories and breakthrough stories; the last of which he views as ”a more subtly destructive category of science story”. Whether you get your news through digital or traditional means, you can’t fail to notice the regularity with which journalists report on the latest medical breakthroughs. Some of these reports are sensationalist (“coffee causes cancer”) and fairly easy to dismiss; but do you know how to separate fact from fiction when it comes to less sensationalist headlines?

The foundation of empowered patient-hood is built on reliable health information. This means not only knowing where to find medical information, but being able to evaluate it and knowing how it can be applied to your own, or your loved-ones’ particular circumstances. Headlines often mislead people into thinking a certain substance or activity will prevent or cure chronic disease. As patient advocates we must learn to read beyond the headlines to filter out the good, the bad, and the questionable. The following questions are designed to help sort the signal from the noise next time you read the latest news story heralding a medical breakthrough.

1. Does the article support its claims with scientific research?

Your first concern should be the research behind the news article. If an article contains no link to scientific research to support its claims, then be very wary about treating those claims as scientifically credible.

2. What is the original source of the article?

If the article cites scientific research you should still treat the findings with caution. Always consider the source. Find out where the study was done. Who paid for and conducted the study? Is there a potential conflict of interest?

3. Does the article contain expert commentary to back up claims?

Look for expert independent commentary from doctors or other healthcare providers to explain the findings (there should be an independent expert source quoted – someone not directly connected with the research).

4. Is this a conference presentation?

Journalists frequently report on research presented at large scientific meetings. It’s important to realize that this research may only be at a preliminary stage and may not fulfill its early promise.

5. What kind of clinical trial is being reported on?

If the news relates to results from a clinical trial, it’s important you understand how, or even if, the results apply to you. Quite often, news publications report on trials which have not yet been conducted on humans. Many drugs that show promising results in animals don’t work in humans. Cancer.Net and American Cancer Society have useful guides to understanding the format of cancer research studies.

6. What stage is the trial at?

Research studies must go through several phases before a treatment can be considered safe and effective; but many times journalists report on early phase trials as if these hold all the answers. The testing process in humans is divided into several phases:

  •  Phase I trials: Researchers test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects.
  • Phase II trials: The drug or treatment is given to a larger group of people to see if it is effective and to further evaluate its safety.
  • Phase III trials: The drug or treatment is given to large groups of people to confirm its effectiveness, monitor side effects, compare it to commonly used treatments, and collect information that will allow the drug or treatment to be used safely.

Source: ClinicalTrials.gov

7. How many people did the research study include?

In general, the larger a study the more you can trust its results. Small studies may miss important differences because they lack statistical power.

8. Did the study include a control group?

A control group allows researchers to compare outcomes in those who receive a treatment with those who don’t. The gold standard is a “randomised controlled trial”, a study in which participants are randomly allocated to receive (or not receive) a particular intervention (e.g. a treatment or a placebo).

9. What are the study’s limitations?

Many news stories fail to point out the limitations of the evidence. The limitations of a study are the shortcomings, conditions or influences that cannot be controlled by the researcher. Any limitations that might influence the results should be mentioned in the study’s findings, so always read the original study where possible.

Useful Resources

  • Sense about Science works with scientists and members of the public to equip people to make sense of science and evidence. It responds to hundreds of requests for independent advice and questions on scientific evidence each year.
  • Trust It or Trash is a tool to help you think critically about the quality of health information (including websites, handouts, booklets, etc.).
  • Understanding Health Research (UHR) is a free service created with the intention of helping people better understand health research in context. It gives clear and understandable explanations of important considerations like sampling, bias, uncertainty and replicability.

Why Your Patient Story Matters

“Tell me a fact and I’ll learn. Tell me a truth and I’ll believe. But tell me a story and it will live in my heart forever.” North American Indian proverb

As a patient or caregiver you may be asked to share your personal story with others. Your story serves as a powerful tool for raising awareness and offering valuable insight into the patient experience. Stories can be a bridge between the technical, rational world of scientific practice and the experiential world of patients. Stories also create a shared sense of meaning and community in our lives, lessening the isolation many of us feel when faced with a chronic illness.

The Power of Story

Stories have existed in our culture from the beginning of time. We use stories to derive meaning from experience and to pass along knowledge and wisdom. Recent breakthroughs in neuroscience reveal that your brain is in fact hardwired to respond to story. Your brain on story is different from your brain when it is receiving any other form of information, including straight facts and data. While facts and figures engage a small area of the brain, stories engage multiple brain regions that work together to build rich emotional responses.

In 2010, a group of neuroscientists at Princeton University used an fMRI machine to monitor what was going on inside the brains of both story-tellers and listeners simultaneously. They discovered that whilst the speaker was communicating to the listener, both their brains showed very similar activity across widespread areas. Their brains were effectively ‘in sync’ with one another suggesting a deep connection between storyteller and listener.” [1]

Tapping the Power of Patient Stories

Humans have an innate desire to feel connected with others who live life through similar lenses. When I first started telling my own story on my blog Journeying Beyond Breast Cancer, I did so in the hope that others on the same path might find some resonance and the knowledge that they are not alone. Chronic illness can be an isolating experience but the very act of sharing our stories with others counteracts the isolation we so often feel. It carries within it the seeds of community and connection which makes us feel less alone in our journey. Diabetes patient advocate and blogger Renza Scibilia captures this feeling when she writes: “There are billions of stories in the world and when we find people we connect with, we reach out and want to hold on. I know that’s how I feel about the Diabetes Online Community – I hear familiar stories and want to grab onto them and the people who wrote them because they help make sense of my diabetes life.”

Patient advocate and author, Jackie Barreau, believes the importance of sharing her personal story lies in “the ability to connect, empower and help others. It is also uplifting and inspiring to hear of people’s hardships whether through illness or unfortunate life events and the positivity & optimism they convey”.   Not only can sharing your story lessen feelings of isolation and open up new avenues of support, it can also offer vital diagnostic clues when others are searching for answers. Jackie explains, “through my volunteer work with for example, the Unicorn Foundation, as an admin for an online patient support group I see first-hand patients joining our group due to lack of knowledge and misinformation provided by their general practitioners and also physicians.”

The National Gaucher Foundation of Canada has coproduced an excellent storytelling toolkit with rare disease patient advocacy organization, Global Genes. It states that “medical terminology and data, though undeniably important, can obscure what it means to live with a disease and make it difficult for most people to relate. Personal stories, though, frame our individual experiences in a way that lets others connect and find diagnostic clues that may have been missing.” Isabel Jordan, the mother of a son with a rare disease, credits reading a patient’s blog to help her finally see the pattern in symptoms in her own son’s life, which set them on a new diagnostic path. “As a parent of a child with a rare disease I’m constantly looking for patterns, for clues, for ideas of what could be next in our diagnostic journey,” she writes, “I look for researchers, doctors, other connected parents to see what they are posting. It was through reading someone else’s blog that I could finally see the pattern in symptoms in my own son’s life. Connecting the dots by seeing them in someone else let me provide valuable clues to our own clinician researchers and now we’re heading down a new diagnostic path.”

How To Tell Your Story

Whether you tell your story through public speaking, print or online social media, take some time to plan ahead for what you will share and how you will share it. Speak from the heart; be accurate, honest and persuasive. The following questions will help you to develop your story in order for it to have maximum impact.

  • How much of my personal story am I willing to share? Be prepared that telling your story might make you feel emotional and vulnerable so enlist some support if you think you might need it.
  • What is too private to share? Let the audience know your boundaries.
  • How comfortable is my family with me talking about my story (or theirs)?
  • What supporting material will make my story stronger? Can you use pictures, research data, and statistics to support your story? Create an experience in images that evokes an emotional response.
  • What is the main take-home message you wish to leave your audience with? Focus on two or three main points for clarity.
  • What do I want my listener to do when I am done? Do you want your listeners to take action after hearing your story? Outline clearly the next steps they can take to do so.

Taking the decision to share your story is a personal one. Emma Rooney, a rare disease patient advocate has this to say:

“I’ve been telling stories since I was a child but my health story always seemed like something to keep private. Despite living with a rare disease my entire life, it wasn’t until becoming a young adult that I decide to share my journey with Gaucher disease. Openness to sharing has led me to other patients who have similar health experiences, and also connected me with stories that are very different from my own. This diversity helps me to better understand my condition and to connect the dots with new information. Storytelling has provided a type of healing that drugs alone can’t offer. My health is an evolving story, and continuing to be a storyteller is part of my wellness strategy and my way to contribute to the global community of patient advocates.”
Each of us has a compelling story to tell; a story with the power to build connection, increase understanding, and move others to take action. Developing our skills as storytellers is a powerful tool in our patient advocacy toolkit. Your story is a precious resource; use it wisely and well.

[1] PNAS.org: Speaker–listener neural coupling underlies successful communication by Greg J. Stephens, Lauren J. Silbert and Uri Hasson.

Shared Decision Making: Putting the Patient At The Center of Medical Care

“Tell me and I forget. Teach me and I remember. Involve me and I learn” – Benjamin Franklin

As gravity shifts away from health care providers as the sole keeper of medical information, the importance of sharing decisions, as opposed to clinicians making decisions on behalf of patients, has been increasingly recognized. Shared decision- making (SDM) is the conversation that happens between a patient and clinician to reach a healthcare choice together. Examples include decisions about surgery, medications, self-management, and screening and diagnostic tests. While the process commonly involves a clinician and patient, other members of the health care team or friends and family members may also be invited to participate. The clinician provides current, evidence-based information about treatment options, describing their risks and benefits; and the patient expresses his or her preferences and values. It is thus a communication approach that seeks to balance clinician expertise with patient preference.

Dr Mohsin Choudry describes shared decision-making as “a way of transforming the conversation between doctors and their patients so that the thoughts, concerns and especially the preferences of individuals are placed more equally alongside the clinician’s expertise, experience and skills.” Before physicians can really know what the proper treatment is for a patient, they must understand the particular needs of their patients. This approach recognizes that clinicians and patients bring different but equally important forms of expertise to the decision-making process. The clinician’s expertise is based on knowledge of the disease, likely prognosis, tests and treatment; patients are experts on how a disease impacts their daily life, and their values and preferences. For some medical decisions, there is one clearly superior treatment path (for example, acute appendicitis necessitates surgery); but for many decisions there is more than one option in which attendant risks and benefits need to be assessed. In these cases the patient’s own priorities are important in reaching a treatment decision. Patients may hold a view that one treatment option fits their lifestyle better than another. This view may be different from the clinician’s.  Shared decision-making recognises a patient’s right to make these decisions, ensuring they are fully informed about the options they face. In its definition of shared decision-making, the Informed Medical Decisions Foundation ,  a non-profit that promotes evidence-based shared decision-making, describes the model as “honoring both the provider’s expert knowledge and the patient’s right to be fully informed of all care options and the potential harms and benefits. This process provides patients with the support they need to make the best individualized care decisions, while allowing providers to feel confident in the care they prescribe.”

By explicitly recognizing a patient’s right to make decisions about their care, SDM can help ensure that care is truly patient-centered. In Making Shared Decision-Making A Reality: No Decision About Me Without Me, the authors recommend that shared decision-making in the context of a clinical consultation should:

  • support patients to articulate their understanding of their condition and of what they hope treatment (or self-management support) will achieve;
  • inform patients about their condition, about the treatment or support options available, and about the benefits and risks of each;
  • ensure that patients and clinicians arrive at a decision based on mutual understanding of this information;
  • record and implement the decision reached.Screen Shot 2015-10-29 at 4.43.27 AM

The most important attribute of patient-centered care is the active engagement of patients in decisions about their care.
“No decision about me, without me” can only be realised by involving patients fully in their own care, with decisions made in partnership with clinicians, rather than by clinicians alone. This has been endorsed by the Salzburg Statement on Shared Decision Making, authored by 58 representatives from 18 countries, which states that clinicians have an ethical imperative to share important decisions with patients. Clinical encounters should always include a two-way flow of information, allowing patients to ask questions, explain their circumstances and express their preferences. Clinicians must provide high quality information, tailored to the patient’s needs and they should allow patients sufficient time to consider their options. Similarly, in Shared Decision Making: A Model for Clinical Practice, the authors argue that achieving shared decision-making depends on building a good relationship in the clinical encounter so that patients, carers and clinicians work together, in equal partnership, to make decisions and agree a care plan. According to the Mayo Clinic Shared Decision Making National Resource Center, this model involves “developing a partnership based on empathy, exchanging information about the available options, deliberating while considering the potential consequences of each one, and making a decision by consensus.” Good communication can help to build rapport, respect and trust between patients and health professionals and it is especially important when decisions are being made about treatment.

Decision Aids

One of the most important requirements for decision-making is information. There are a number of tools available to support the process such as information sheets, DVDs, interactive websites, cates plots or options grids. Decision aids that are based on research evidence are designed to show information about different options and help patients reach an informed choice. The Mayo Clinic has been developing its own decision aids since 2005 and distributing them free of charge to other health care providers. For instance, Mayo’s Diabetes Medication Choice Decision Aid helps patients choose among the six medications commonly used to treat type-2 diabetes. Patients choose the issues that are most important to them, for example, blood sugar control or method of administration —and then work with their physicians to make comparisons among the drugs, based on the chosen criterion.

Discussing their options and preferences with health professionals enables patients to understand their choices better and feel they have made a decision which is right for them. Research studies have found that people who take part in decisions have better health outcomes (such as controlled high blood pressure) and are more likely to stick to a treatment plan, than those who do not.  A 2012 Cochrane review of 86 randomized trials found that patients who use decision aids improve their knowledge of their treatment options, have more accurate expectations of the potential benefits and risks, reach choices that accord with their values, and more actively participate in decision making. Instead of elective surgery, patients using decision aids opt for conservative options more often than those not using decision aids.

Barriers to Shared Decision-Making

Barriers to shared decision-making include poor communication, for example doctors using medical terminology which is incomprehensible to patients; lack of information and low health literacy levels. It is worth noting that not everyone wants to be involved in shared decision making with their doctors; and not every doctor wants to take the time. Some patients come from cultural backgrounds that lack a tradition of individuals making autonomous decisions. Some health professionals may think they are engaged in shared decision-making even when they are not.

Shared Decision-Making – An Ethical Imperative

With this proviso in mind, it is nevertheless clear that the tide is turning toward more active patient participation in decisions about health care. Research has shown that when patients know they have options for the best treatment, screening test, or diagnostic procedure, most of them will want to participate with their clinicians in making the choice. A systematic review of patient preferences for shared decision making indicates 71% of patients in studies after 2000 preferred sharing decision roles, compared to 50% of studies before 2000.  The most important reason for practising shared decision-making is that it is the right thing to do. The Salzburg Statement goes so far as to say it is an ethical imperative and failure to facilitate shared decision-making in the clinical encounter should be taken as evidence of poor quality care. Evidence for the benefits of shared decision-making is mounting. Providing patients with current, evidence-based information, relevant decision aids and giving them time to explore their options and work through their concerns, will help patients choose a treatment route which best suits their needs and preferences, and ultimately lead to better health outcomes for all.

Words of Advice from a Lung Cancer Survivor

When I was diagnosed with lung cancer, it was a shock. It was like a fist to the stomach- and it turned my life and my loved ones lives- upside down.

My world changed immediately and drastically. But I had to learn quickly not to let fear, shock, anger or distress keep me from advocating for myself.

I learned very quickly that you have to be your own champion.

So, how does a lung cancer survivor best advocate for themselves?

  • Never take no, or inaction (a form of “no”), as the final answer. Keep fighting. Your life is the most important to YOU! Don’t give up. If one doctor tells you to give up, find another. Keep fighting.
  • Research your doctor. What do others say about him? Where was he educated? Is he interested in research? Is he with a private practice or a university hospital?
  • Not all treatment facilities are created equally. The US News and World Report publishes a list of best hospitals every year. The National Cancer Institute designates certain hospitals that have been proven to deliver cutting-edge cancer treatments to patients. Other hospitals also deliver excellent services, but if you are uncomfortable with the treatment you are receiving, keep looking for a facility in which you have confidence.
  • You know your body best. If something doesn’t seem right, make sure your doctor knows. And takes it seriously.
  • Keep in mind that your oncologist works for you. If, at any moment you decide he is not doing an adequate job for you, fire him. You do not have to continue trusting your life to him if he loses your faith. Your medical team holds your life in their hands. Find the ones you trust completely.
  • Conduct your own research. Look at respected sites, such as LUNGevity, American Association for Cancer Research, Bonnie Addario Lung Cancer Foundation, American Cancer Society, American Lung Association, the National Institutes of Health (NIH), etc. Make sure that you can differentiate between opinion and vetted study results. If you are aware of what is out there, you can advocate for yourself. Unfortunately, not every doctor knows what all of the latest treatments are.
  • Start a binder or a file where you keep important test results and copies of your scans. List questions for your doctor so you don’t forget when you get into his or her office.
  • Take along a friend or family member to doctor visits. Two sets of ears are better than just one, especially if you receive some shocking news during the appointment.
  • Join support communities (in-person or online or both). It helps to spend time with others who “have been there, done that.”
  • One of the best organizations that I have associated with since my diagnosis is LUNGevity. It is dedicated to funding research for lung cancer and to providing HOPE to all lung cancer survivors. If you want to spend time with others who have lung cancer and exude HOPE, get involved with LUNGevity!
  • Spend time spreading the truth among your friends and acquaintances! Unlike what the general public, and unfortunately, even many doctors, believe, lung cancer doesn’t just happen to smokers. It doesn’t matter if you smoke or don’t, are white or black, male or female, young or old, skinny or fat. Lung cancer happens to people with lungs.
  • Try to maintain as normal a life as you can. Eat as healthily as possible. Drink plenty of water. Exercise as much as you are able. Smile, even if you don’t feel it. Watch happy movies and laugh. Cancer is an awful disease and none of us want it. But, it doesn’t have to consume your every thinking moment. And, it shouldn’t.

It is hard enough to be diagnosed with cancer. But, when you are diagnosed with lung cancer, it is a double whammy. The misconceptions and stigma that are associated with lung cancer can make people look down on you or discount the importance of your disease and your fight.

lung cancer survivor

Donna is now a stage 4 lung cancer survivor.

Keep your head up. Whether or not you have a smoking history, everyone deserves quality treatment and compassion. No one deserves to die from lung cancer; no one deserves to be looked down upon because of lung cancer. Set aside any feelings of shame or guilt or if you never smoked, the question “why me”.   Become a champion for yourself.  And remember, there is hope.

My story is a story of hope.

Yours can be too!

The Stigma of Lung Cancer

Tori Tomalia is a stage IV lung cancer patient, avid patient advocate and a writer and blogger. You can find her at Lil Lytnin’ Strikes Lung Cancer 

In the spring of 2013, my biggest concern was juggling my time between grad school, work, and caring for my 4 year old son and 2 year old twin daughters. The nagging cough and increasing exhaustion were pushed to the back of my mind as mere side effects of trying to take on too much. As my breathing troubles increased, my doctor began treating me for asthma, but none of the half-dozen inhalers and pills seemed to make any difference. It wasn’t until a CT scan revealed an enormous mass in my left lung that the words “lung cancer” entered my vocabulary. By then, the cancer had spread throughout my bones and liver. At age 37, I was diagnosed with stage IV lung cancer. Inoperable, incurable. Terminal.

How could that be possible? I was never a smoker. Like all of us, I had heard over and over that smoking causes lung cancer, but sadly I have learned first-hand that the truth is much more nuanced. Smoking is bad for you, that is obvious and I doubt you could find a single American who hasn’t heard that yet. But so is living a sedentary lifestyle, so is eating junk food, so is having too much stress. It wasn’t until I received my horrible diagnosis that I learned there is one cancer where patients are blamed for their disease, and made to feel that they do not deserve a chance at a cure.

 

If you think I’m exaggerating, take a look at the numbers:

  • Lung cancer takes more lives than breast, prostate and colon cancers combined – it accounts for 27% of all cancer deaths.
  • Lung cancer is the second leading cause of all deaths in the US.
  • The federal government spends about $26,000 in research dollars for every breast cancer death. They spend less than $1,500 per lung cancer death.
  • 160,000 Americans will die of lung cancer this year. 80% will be never smokers or nonsmokers (people who once smoked but have quit).
  • Lung cancer in never smokers is the 6th leading cause of US cancer deaths.
  • Lung cancer kills almost two times as many women as breast cancer, and three times as many men as prostate cancer.

Lung cancer is the second leading cause of death in the USA! You would think funders would be tripping over each other trying to find better treatments and cures, but the bias against this disease is incredibly powerful, and it is costing people their lives.

Another sobering development is that the incidence of lung cancer in young, nonsmoking women is on the rise. Theories abound, but there is no consensus on what is driving this troubling trend. For me, the “why” is less important. What matters to me is more time with my family, and the only way that is going to happen is through research and more treatments for lung cancer.

November is Lung Cancer Awareness Month, and what I ask of you is to simply become aware. Become aware of this disease that is a threat to every person with lungs. Become aware of the precious nature of each breath you have the joy of taking. Become aware of the challenges facing people with this disease. Become aware that no one deserves this.

And if you still feel that the people of all stripes with lung cancer are not worthy of your compassion, well there’s this old story I heard about throwing stones….

Virtual Patient Communities

Virtual Patient Communities Engendering A New Social Health Era

Howard Rheingold, who coined the phrase virtual communities, describes them as “cultural aggregations that emerge when enough people bump into each other often enough in cyberspace.” Rheingold’s words, though descriptive, may not fully capture the depth and breadth of experience many patients find when they go online.

Before the Internet connected people from every corner of the globe, many patients experienced their illness in isolation. Humans have an innate desire to feel connected with others who live life through similar lenses. The Internet, and social media in particular, has lessened this sense of isolation. It has shown us how much people are willing to reach out to others to provide advice and support – even to strangers online. Clay Shirky, author of Here Comes Everybody: How Change Happens when People Come Together, holds that “the desire to be part of a group that shares, cooperates, or acts in concert is a basic human instinct.”

There are as many reasons for joining a virtual community as there are communities online. Probably the most common reason people go online when they (or someone they care about) are diagnosed with an illness, is to find information. Figures from the Pew Research Center show that 1 in 5 Internet users have gone online to find others who might have health concerns similar to theirs. That percentage is even higher – 1 in 4 – among those living with chronic disease, or caring for someone with a disease. Not surprisingly, doctors remain the first choice for an accurate medical diagnosis. But the number of patients saying they turn to their friends, family and other patients for day-to-day advice, and emotional support is higher.

For some patients turning online for support is more convenient; not everyone can attend an in-person support meeting at the time they most need it. Online you can find 24/7 access to support, unbound by restrictions of time or location. Any person, anywhere, any time – whether they are a patient, caregiver, family member, or friend—can find someone else in similar circumstances who understands what they are going through.

For others, it is about finding hope. Corrie Painter, an angiosarcoma patient, passionately believes that networked patients save lives. In Rare Cancer Meets Social Media, Painter captures the joy of finding hope online.

“When faced with mortality, I think the first thing many of us do is try and find someone, ANYONE else who understands what we’re going through. I put feelers out into every corner of the Internet. And I found people! I sent them messages and received nothing in return. Turned out they were gone, all of them, by the time I tried to reach them. So I turned to Facebook in a last ditch attempt to find anyone who knew anything about this disease. And I found her. The one and only Lauren Ryan, alongside eight other members of an angiosarcoma facebook group that Lauren started in 2010. Every single one of them was alive. They were ALIVE. I instantly connected with each of them. Josephine was 3 years out from my same diagnosis and was ALIVE. Lauren was a year and a half out and had no evidence of disease. They took me under their wing and provided me with hope in spades. I clung to every word they wrote. It was the same story eight times over”.

Personal stories and first person accounts of illness are the life blood pulsing through the social media healthcare eco-system. By telling your story, you can help shed light on a condition’s symptoms, prognosis, and other details for those still searching for the correct diagnosis. Medical terminology and data, though undeniably important, can obscure what it means to live with a disease and make it difficult for most people to relate. Personal stories, though, frame our individual experiences in a way that lets others connect and find diagnostic clues that may have been missing. Isabel Jordan, the mother of a son with a rare disease, credits reading a patient’s blog to help her finally see the pattern in symptoms in her own son’s life, which set them on a new diagnostic path.

“As a parent of a child with a rare disease I’m constantly looking for patterns, for clues, for ideas of what could be next in our diagnostic journey,” she writes, “I look for researchers, doctors, other connected parents to see what they are posting. It was through reading someone else’s blog that I could finally see the pattern in symptoms in my own son’s life. Connecting the dots by seeing them in someone else let me provide valuable clues to our own clinician researchers and now we’re heading down a new diagnostic path. Would I have seen them anyway? I don’t know. But I credit my connections on social media for helping me keep my eyes open to new ideas”.

In the case of rare diseases, where doctors simply don’t have the answers to patients’ questions due to low patient numbers and, consequently, insufficient research into the disease, it is the patients themselves who are banding together to find the answers they need. Katherine Leon, an SCAD (spontaneous coronary artery dissection) survivor, leveraged the power of her virtual community to find the cause of her rare heart disease, and prevent it from happening to others. At the time of her diagnosis, SCAD was a poorly understood and under-researched condition. Physicians had no clinical studies on which to base treatment plans. Katherine connected with fellow SCAD survivors through social media and used their collective voice to do what hospitals couldn’t – to launch research at the Mayo Clinic. Leon credits social media as a key research accelerant. “Social media absolutely gets the credit for making scientific study of SCAD possible” she says, “in 2003, my cardiologist told me I would never meet another SCAD patient. It was just too rare. Today, I “know” more than 1,000 fellow survivors thanks to Inspire, Facebook ‎and Google”.

If stories are the life blood of an online patient network, a strong sense of community is at its heart. Members share an emotional connection to each other and a sense of shared experiences. They have a feeling of belonging to and identifying with the community, believing they matter within the community and they can influence and be influenced by them. Diabetes patient and advocate, Renza Scibilia believes that “there can be real solidarity when you are part of an online community.” She writes, “one of the reasons social media is so powerful is because of the way it connects people. By removing all the constraints that would normally prevent people from sharing, we form connections based on shared experiences and familiar stories”.

What does the future hold for virtual patient communities?

In David Weinberger’s book, Too Big To Know, the author argues that we are in a new age of “networked knowledge”; meaning that knowledge – ideas, information, wisdom – has broken out of its physical confines and now exists in a hyper-connected online state. Translating Weinberger’s argument to healthcare, the narrative is one in which the uptake of social media signifies a radical transformation of established notions of patienthood, with patients now situated within connections to other patients, family members, carers and healthcare professionals, creating a new social health experience.

CEO of Smart Patients, Roni Zeiger M.D., is convinced “that our next exponential leap in medical progress depends on us learning from networks of micro-experts.” The learning that begins in virtual patient communities can quickly translate to offline activity. Corrie Painter knows first-hand the power of tapping into a network of micro-experts.

“When people find us now”, she writes, “it actually might change the course of their disease. We have sent so many people to the same doctors that they have become clinical experts. These doctors now understand nuances of this disease that weren’t possible when only a handful of angiosarcoma patients would come through their clinics each year. Patients who get treated at these large volume centers bring the knowledge from these clinician experts to their local doctors. As a result, the patients are driving expertise in this rarest of rare orphan cancers, and that expertise is filtering out into local clinics. All because of our collective need to connect with others diagnosed with angiosarcoma”.

In the future, new online tools will come and they will go, but our innate desire to reach out, to connect, and to help one another will remain. It’s people who ultimately build communities, not technology. The communities may be virtual, but they are no less real. It’s still individuals speaking to other individuals, people helping other people. What’s changed, to quote Sussanah Fox, Chief Technology Officer at U.S. Department of Health and Human Services, is that we now do it at the speed of internet connectivity. Fox thinks that “the most exciting innovation of the connected health era is people talking with each other.” That may sound simple, but as the stories in this article illustrate, talking with each other can have profound and far-reaching effects in our connected digital age.

 

 

How to Prepare for a Second Opinion Doctor Appointment

Expert physicians and cancer patients agree that getting a second opinion is crucial, even if you are very pleased with your primary medical team. It is your health and your life; take care of yourself!

A second opinion will help you learn more about your illness and treatment options. What you learn also will help you communicate intelligently with your medical team to get the best, most personalized care.

But doctor appointments can be scary, overwhelming and intimidating. There is the possibility of bad news and the apprehension of receiving confusing an difficult-to-understand information. Here are some tips to help you make the most of your second opinion appointment.

Prepare in advance

Plan to take a trusted friend or family member with you

This is critical. Memory retention is only 10% and less when you are stressed. You will not remember everything that is said during the appointment. You need to have someone there with you to be ‘another set of eyes and ears’. Then you can discuss key points with this other person to make sure you both heard the same information, go over options, and, if appropriate, ask for their input and opinion,

Record the conversation

Ask the doctor if you can record the conversation. Pull out your smartphone and record it! Then you can play it back at your leisure and discuss it with your family and the person who accompanied you to the appointment. You can then go over key issues, play back critical discussions and not miss anything!

By the way, many expert physicians have endorsed the idea of recording the discussion at a doctor appointment so don’t be afraid to ask!

Think of questions to ask and write them down ahead of time

No one thinks and speaks at the same time and does it effectively. And stress adds to the mix. So plan ahead and write your questions down to prepare yourself for the appointment. For example:

  • Confirmation of diagnosis
  • What are the next steps?
  • Am I eligible for a clinical trial?
  • What are my treatment options and does the second opinion doctor agree with the original treatment options?
  • What are the side effects of the treatment options?

If a clinical trial is advisable, you can ask these questions:

  • What is the purpose of the study?
  • Who is sponsoring the study, and who has reviewed and approved it?
  • What kinds of tests, medicines, surgery, or devices are involved? Are any procedures painful?
  • What are the possible risks, side effects, and benefits of taking part in the study?
  • How might this trial affect my daily life? Will I have to be in the hospital?
  • How long will the trial last?
  • Who will pay for the tests and treatments I receive?
  • Will I be reimbursed for other expenses (for example, travel and child care)?
  • Who will be in charge of my care?
  • What will happen after the trial?

Bottom line: You do not need to become a medical expert in your disease. By following the guidelines above, you can become more knowledgeable to make informed decisions about your path to improved health and quality of life.

 

 

Bringing a Family Member to a Doctor Appointment

A cancer diagnosis is an overwhelming, life-changing, disruptive event in the life of anyone. When a patient goes to meet their doctor, they are usually stressed, anxious and afraid. Therefore, it is helpful and advisable for them to have a family member with them to take notes, record the conversation, ask questions and basically monitor the appointment and keep track of what transpired. The patient can then talk over the appointment touch points with the family member after the fact.

Also, the family member can either confirm or elaborate on the discussion with the doctor. It is often difficult for the patient to remember events or details when asked questions about side-effects, coping with their illness, day-to-day regimen and mental attitude. A family member can help provide these details and can add validity.

It is helpful to prepare for a doctor appointment by making a list of questions to ask and a list of events or topics to talk about. A family member can help with this and even record the conversation if that is necessary.

Make the very most of your doctor appointments by asking a family member to accompany you!

Watch the following video as Dr. Malcolm DeCamp of the Robert H. Lurie Comprehensive Cancer Center explains why bringing a family member to a doctor appointment is a great idea.

Bring a Family Member to Your Doctor Appointment from Patient Empowerment Network on Vimeo.

An Oncologist’s Perspective on Clinical Trials

(Editor’s note: This article is in 2 parts. This is Part 1 (go here to read Part 2) and consists of an interview of Dr. Anita Wolfer, Senior Oncologist and Head of Unit in Oncological Research, Lausanne University Hospital (CHUV). The interview was conducted by the “Indomitable” Christine Bienvenu, breast cancer patient, avid patient advocate and board member of the Patient Empowerment Foundation, our sister organization under development in Europe. And please, don’t be concerned that this is an interview with a European oncologist. You will be surprised to see that the issues, thoughts, concerns of patients and doctors are the same. These issues are worldwide!)

Great progress has been made today in immunotherapy and targeted therapies – especially in cancer research – thanks to patients having access to clinical trials. It is crucial that patients learn about their options.

Interview With Dr. Anita Wolfer

The Indomitable Christine Bienvenu

The Indomitable Christine Bienvenu

Christine Bienvenu (CB): How do clinicians learn about clinical trials?

Dr. Anita Wolfer (AW): It depends very much on where they’re working: Doctors in university hospitals are constantly informed of clinical trials. Their peers outside the hospital environment are not, though: It’s up to them to actively find clinical trials and stay informed.

 

CB: Here in Switzerland, are there formal protocols in place for spreading information about clinical trials?

AW: In terms of the medical system, there aren’t any formal protocols on doctors being up to date on clinical trial options. I think it’s important that university doctors take it upon themselves to keep their non-university environment peers informed. Often, unfortunately, those oncologists working outside the hospital environment only think of clinical trials when conventional treatments have failed. For researchers like us, it’s more second nature to turn to them for treatment options.

Here in Switzerland, the “Réseau Romand d’Oncologie” (Western Switzerland’s oncology network) centralizes all the information about clinical trials, and keeps it updated. For the new Swiss Cancer Center Lausanne (SCCL) opening in 2017, its director, Prof. Coukos’ vision is simple: All information – clinical trials, research, collaboration, and participatory medicine – should be accessible to patients and professionals alike.

 

CB: When and why do clinicians talk about clinical trials to their patients, and how do you view the patient’s role in trials?

AW: Often today, oncologists will only talk to a patient about clinical trials if they see that there’s a direct benefit to the patient. But in my view, it’s important to inform the patient of the clinical trial, regardless so that they too can look into the application process. In an ideal world – and I say this as an oncologist and clinical researcher – there would be a clinical trial for every patient who walks through our doors.

As for the patient’s role, I’m a firm believer that sharing is building in this profession. Patients are crucial in this process: No-one knows their bodies better than they do. The way I see it, any patient of mine gives me the opportunity to learn. I don’t want to waste that.

 

CB: What obstacles do clinicians face in conveying clinical trial information to their patients?

AW: Unfortunately, some oncologists are afraid that university doctors might “steal” their patients, so they don’t readily refer them for fear of losing income for their own hospital. With patients being so closely followed during the clinical trials as well, this is comforting: Often, they’d rather not go back to their ‘regular’ oncologist. In my view, it’s a shame to look at it that way: If there’s a relationship of confidence and trust with their primary oncologist, if patients know they will get all the necessary information, they’ll be more inclined to stay with their respective ‘regular’ oncologists. To be brutally honest, my feeling is if an oncologist is upset about a patient seeking a second opinion, then maybe it’s time to find a new oncologist? It happens in the medical profession: I’m not immune to it – no-one is. But it shouldn’t be an issue… Just like in any relationship, if the doctor/patient relationship isn’t working out for the patient, he or she has every right to move on.

 

CB: In your profession, how important is mindset – in both the patient and the doctor or clinician?

As in any profession, or with any patient or co-worker, there are always those who are willing and excited to go the extra mile. If the mindset to do so isn’t there, there really isn’t much that either a patient or an oncologist can do in terms of moving forward. A pro-active mindset is crucial.

 

CB: In the same vein, how important is mindset in clinical trials, then?

AW: Being convinced about the clinical trial is also very important – not only for the patient, but for the doctor. A well-informed doctor means a well-informed patient. Speaking for myself, I’m constantly on the lookout for the best treatment options for my patients – even if it’s a clinical trial outside the CHUV. Why wouldn’t I? It’s about moving forward in cancer research, not about being territorial with knowledge.

 

CB: What role, for you, does the sharing of information and access to clinical trials play in patient mindsets?

AW: Armed with information, most patients are willing to be a part of trials – even if it isn’t one they had specifically hoped for. Time and again, we’ve seen how patients who participate in clinical trials usually have better outcomes than patients who don’t. Beyond the obvious rigorous monitoring, the crucial element here is that the patients feel more responsible for, and engaged in, their care. What strikes me, time and again, is that clinical trials offer hope. And while not every clinical trial story is a positive one – with frustration and heartbreak often integral to the process – hope is a crucial element and great motivator.

 

CB: Getting into clinical trials is no small feat. What improvements, if any, would you suggest? Can patients be better-informed about clinical trials?

AW: In an ideal world, there would be a clinical trial for every patient. One of the objectives of the CHUV oncology department is to have a portfolio of trials so that there are alternatives for every patient. And despite limited resources, the department is working hard to open up a maximum of number of trials. Also, with the SCCL opening up in Lausanne, more research funding is coming in, and more specialised oncologists are coming on board.

 

CB: What for you is a key component of a successful patient/clinician or doctor relationship?

AW: Ultimately, it’s about trust, confidence and collaboration. And going back to your previous question, if patients feel they’re being fully supported by their oncologist, they’ll return to them – university hospital setting or not. To me, it’s extremely important that patients take the necessary steps to establish the relationship of trust that they seek.

 

CB: What feedback have your patients given you about their experiences in clinical trials?

AW: Some patients will say outright that they’re not interested. But the vast majority – I’d say 70-80% – are willing participants. So far, I’ve only ever had one patient tell me she wasn’t happy with a clinical trial. For most, it goes beyond participating for their own benefit, per se: it’s about being part of a greater cause and helping medical science advance. Patients are genuinely altruistic. What is clear, though, is that it’s a team effort that involves the patient and the medical community.

 

CB: Where can patients find information about clinical trials?

AW: There are a number of great resources out there. In no particular order, I can suggest the Swiss Group for Clinical Cancer Research (http://sakk.ch/en/) or Clinical Trials (https://clinicaltrials.gov/) which is a service of the US National Institutes of Health that lists all the studies being done in all 50 US States and in 190 countries.

Here in Switzerland, there are obviously the Lausanne University Hospital (CHUV: http://www.chuv.ch/) or the Geneva University Hospital (HUG: http://www.hug-ge.ch/) websites. Experience has taught me that the university websites are sometimes a bit outdated, but patients can send emails directly to oncologists there and should get an answer.

 

CB: Any parting words of wisdom?

AW: Patients never doubt themselves in asking questions. There is no such thing as a stupid question. If a patient isn’t having his or her questions answered, he or she has every right to find someone who will! Questions are crucial: They lead to greater understanding, knowledge, and progress.

Also, it’s important to remember that in Clinical Trials, limits have to be set to be able to provide realistic results. Make the criteria too broad, and it becomes difficult to show a trial’s effectiveness. With immunotherapy, clinical trials broaden patient eligibility. Granted, a patient needs to be healthy enough to be able to benefit from a trial, so if for example a patient is in palliative care, they wouldn’t be eligible – unless, of course, the clinical trial is in palliative care.

The National Cancer Institute’s (NCI) “10 step guide on how to find a cancer treatment trial” helps patients better understand what clinical trials are all about, how to talk to their doctors, and know what questions to ask, visit: http://www.cancer.gov/about-cancer/treatment/clinical-trials/search/trial-guide?cid=tw_NCIMain_nci_Clinical+Trials_sf39211784

8 Beliefs That Can Hold Caregivers Back (from reaching out for help)

Family caregivers too often suffer from two very common things: overwhelm and isolation. Or, to it put another way, exhaustion and loneliness. So often, the nature of illness and trauma not only disrupts our normal ways of living, but also disrupts our connections with people who care about us. Caregivers who reach out for support gain the benefits of lessening their burdens and of feeling the warmth provided by people who care.

Too often, caregivers hold back from reaching out because of beliefs they have about doing so:

  •  Nobody else can do what I do for my loved one.
  •  My loved one won’t accept help from anyone but me.
  •  I’m too busy to even begin to think about doing anything more – even reaching out.
  •  The moment I start reaching out, our family will lose our privacy.
  •  I’m afraid of imposing on people.
  •  Reaching out shows weakness; doing it yourself shows strength.
  •  I’m afraid that nobody will come forward to help me.
  •  Since I’m able to handle things now, I’ll be able to continue to do so.

These, beliefs, while completely understandable and very common, are neither healthy for you as a caregiver or for your loved one. They get in the way of your resilience and your capacity to sustain yourself for however long your caregiving is required. Each week, I will be focusing in on one of these self-limiting beliefs and invite you to come along with me in exploring those that you are now willing to let go of and change into ones that help you not only survive, but thrive.

So let’s get started:

Nobody else can do what I do for my loved one

Think of the whole range of “things” you are currently doing. First think of the practical ones: dressing, managing and administering the meds, shopping, preparing, serving and cleaning up after meals, assisting with bathing and toileting, and so on. Now focus on the emotional and spiritual ones – showing love, being a trusted confidant, giving emotional support and comfort, etc.

Nobody else can do these things exactly how you’re doing them or would your loved one experience them in the same way if they were done by people other than you. No one else is so attuned to your loved one’s needs and preferences and, most likely, your loved one is most receptive to your way of doing these things. And, no one else would be as committed to your loved one’s comfort and be as vigilant as you are. This much is true.

But, the trap here is believing that, since no one else can do things the way you do, that no one else can do them or do them satisfactorily for you and your loved one.

Let’s take a look at some of those practical things that I listed above. Take one area for starters, e.g. grocery shopping. These days, it’s not like the days when our mothers used to look the butcher in the eye and tell him she wants a better cut of meat than the way he did it last week. Shopping simply means meal planning, list making and going out and getting the groceries – all very delegatable tasks. When you think about, I think you’ll agree that many if not most of the practical things can be done by others. Not necessarily with your intimate knowledge and way of doing things, but in their own ways. And, similarly, other people will bring their own and distinctly different ways of providing emotional and spiritual support as well.

Bottom line: Is this a belief you’ve been holding? If so, how does it serve you? How does it hinder you? How might you re-write that belief so that it serves you better? For example, “There are some things that other people can help with. I’m going to try this out with some simple things.” What practical step can you take to try out that new belief this very week? Let us know – by commenting on this blog. You’ll help yourself and other caregivers by doing so.