Systems awareness and systems design are important for health professionals, but are not enough…..Ultimately, the secret of quality is love.

Last week, Lown president Dr. Vikas Saini was presented with the Donabedian International Award. 

Dr. Avedis Donabedian was a revolutionary physician who is credited with creating the field of healthcare quality and outcomes research. His model for measuring quality, the Donabedian model, has shaped the way healthcare quality is conceptualized. Like our founder Dr. Bernard Lown, Dr. Donabedian was a physician activist who advocated for compassion in healthcare. 

In his acceptance remarks, Dr. Saini shared his vision for a future of medicine that uses new technologies for socially responsible goals, while still keeping empathy and the human connection in medicine at the forefront.  View the video or read excerpts from the transcript of his speech below.

Dr. Saini on the art of healing: “Across the millennia a shaman accompanied us whenever we had an illness, whether serious or minor, reminding us of our frailty and transience in this world. Healers have always been honored–for healing if successful, but mostly for being present as a trusted companion on an unwelcome journey.”

Dr. Saini on AI: “Intelligent machines could unburden us of the tedious calculations of clinical effectiveness and cost utilities. More than that, they could democratize expertise and radically reduce the division of labor between knowledge workers and manual ones.  Most importantly, they offer the promise of democratizing healthcare policy itself by helping non-specialists understand complex issues, set priorities and make trade-offs. But the barriers are enormous. AI models trained on backward-looking datasets will reproduce biases and reinforce obsolete paradigms. The massive capital required increases the risk of monopolies of the few.  Critically, machines have no values; they do not care about people. It is therefore urgent that all of us engage in a debate on the role of AI in reshaping health care.”

Dr. Saini on the future: “There is a yearning worldwide…because people want to escape the cul-de-sac of a sterile modernity and return to a geography of connection and of solidarity–solidarity with each other and with the natural world. If we fail, we may become the tools of our tools and turn machine intelligence into the enemy of human freedom. If we succeed, we may create the space for all health workers to focus their energies on Right Care for their patients.  Freed from the burden of repetition, we could enjoy a future of radical fulfillment and a democracy of knowledge that enables a democracy of health. If we can imagine such a future we can create it–a world that allows us to return to our roles as shamans in a digital village, free to focus on the things that matter most: warmth, empathy, and profound human presence that can overcome the angst of the clinical moment.”

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This realization was what drove palliative care doctor and filmmaker Jessica Zitter to create the documentary “Caregiver: A Love Story.” The film follows couple Bambi and Rick as they navigate the joys and challenges of trying to give Bambi a “kinder death” at home.

This raw and emotional film shows Rick’s journey as primary caregiver: his sense of duty to take care of his wife, his frustration at not having help, and the impact on his health. As much as Rick feels “thrust into the role” and unqualified to provide this level of care, he doesn’t see an option to stop because of the love he has for his wife. “Why am I doing this? It’s all about love,” Rick says. Yet this takes a toll on his physical and mental condition, and he feels his health is “deteriorating with hers.”

Dr. Jessica Nutik Zitter practices critical and palliative care medicine at a public hospital in Oakland, California. She is the author of Extreme Measures: Finding a Better Path to the End of Life and her work was featured in the film EXTREMIS, which was nominated for an Oscar and two Emmys. We spoke with Dr. Zitter about the film and why they are trying to get as many clinicians as possible to watch it.

To watch the film, check out the full list of screenings. Clinicians who are members of Docola can watch the film and attend a Q&A with Dr. Zitter on January 26th.

Lown Institute: Where did the idea for this documentary come from?

Dr. Jessica Zitter: We originally were making a film about how getting out of the hospital was a good thing, it was not intended to be about family caregiver burden. But when we reviewed the film, we recognized that Rick’s story really needed to be told, not just Bambi’s. We needed to share the voice of people like Rick taking care of loved ones at home, work that is not usually given attention.

What do you hope that clinicians take from the movie?

I hope that clinicians will lift their heads out of the hospital and understand that the hospital is not the limit of their responsibility. For me it was a shock to watch my own movie and realize I was sending people home without any knowledge of what they were up against. I was setting them up for failure when I could have had an impact. Hospitals are used to focusing on the patients inside the hospital, but not very good at looking at the patient as a person that lives outside the hospital too. Even those in palliative care are missing something.

We need to start to think about creating a structure that provides support to the people we treat, not just kick them out of the hospital. We shouldn’t be the “hospital on a hill,” siloed off from the rest of the world. This will just make things worse for people.

How can hospital clinicians better support family caregivers?

Hospitals have the responsibility to identify caregivers while patients are in the hospital and direct them to resources, so they’re not going out blind. Caregivers should be connected to resources like Meals on Wheels, hospice, respite services, support groups , educational programming, and adult day care centers. We should have a follow-up mechanism, so that clinicians at the hospital aren’t depending on caregivers to reach out if they need help (caregivers are often too overwhelmed to do this).

How is the health of caregivers being impacted by the move from hospital to home?

Caregiver burden is one of the rising silent epidemics in our time. In 2017, more people died at home than the hospital, but we’re not shifting support outside the hospital. As people are leaving we’re not supporting them or their caregivers. All of these caregivers are having to leave the workforce, and many more women than men leave the workforce. That’s tens of billions lost because caregiving itself is a full time job but we don’t pay for it.

There are profound consequences for caregivers of doing this job unsupported and untrained. There are very high rates of depression and loss of financial security. Family caregivers don’t take care of themselves; they forgo their own care. You see this in the film very powerfully.

Do you have advice for patients or caregivers who are feeling overwhelmed?

A lot of people don’t realize that they are family caregivers or that they need help. This film, if nothing else, mobilizes a movement. We are creating a program for the film specifically for family caregivers, as a first step to help them find resources within their community.

The post “I feel like my health is deteriorating with hers”: The struggles of caregiving and what clinicians need to know appeared first on Lown Institute.

Ioannidis et al. identified four key problems with clinical evidence:

1. Too much medical research is of uncertain reliability, offers no benefit to patients, or is not useful to decision-makers. Bias is rampant due to industry funding, and many studies do not measure outcomes that patients actually care about.
2. Health care professionals are unaware of the problems with medical research, and (justifiably) assume that because something is published in a journal, it must be good science.
3. Many health care professionals, even those creating clinical guidelines, lack the skills to discern the reliability and usefulness of evidence. 
4. Patients and families don’t have access to accurate information and guidance when they need to make medical decisions, and clinicians rarely lead patients and families in conversations about the risks and benefits of treatment.

In a new article in the Journal of Evaluation in Clinical Practice, researchers Morteza Arab-Zozani at the Tabriz University of Medical Sciences, Ray N. Moynihan at the Institute for Evidence-based Care and University of Sydney, and Mohammad Zakaria Pezeshki at the Tabriz Medical School suggest that shared decision making can be the solution to reducing overuse that happens as a result of medical misinformation.

Bias and spin in clinical research leads both clinicians and patients to overestimate the benefits and underestimate the harms of treatments, which contributes significantly to overuse. Arab-Zozani et al. write that shared decision making can ameliorate our tendency to do more to patients, by addressing individual patients’ concerns, preferences, and treatment goals.

They define shared decision making as “an approach where clinicians and patients share the best available evidence when faced with the task of making decisions, and where patients are supported to consider options, to achieve informed preferences.”

When patients are empowered to ask specific questions about how a treatment will help them achieve their health and life goals, it encourages clinicians to examine the evidence around a treatment more critically. For example, the authors cite health literacy researcher Gary Fradin‘s four key questions that patients should ask their doctor before every medical intervention:

1) Out of 100 people like me (people with similar age, risk factors, etc), how many benefit and how many are harmed according to studies? 2) Is this intervention overused in the real world? 3) Would most physicians make the same recommendation or might some suggest something different? And, 4) How many patients like me do you treat annually?

A former smoker considering lung cancer screening may have heard that screening reduces their risk of death from lung cancer by 20%. However, by asking Fradin’s questions to their doctor, this patient would find out that out of 100 patients like him, 0.3 people would be saved from lung cancer over five years. At the same time, 2.5 people will have an abnormal scan result and will have to undergo further testing, which can be stressful and costly. The patient might also find out that the effectiveness of this intervention is still under discussion, and many physicians would choose not to recommend this screening.

By asking the right questions and having shared decision making conversations, patients and clinicians can help wade through the mess of medical misinformation and avoid harmful overuse. The authors also point out that movements like the Right Care Alliance are reinforcing the need for cultural change in health care, to ensure that patients receive all the care they need, and none that they do not.

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Nearly 10 million older adults received help from a caregiver in 2011, about one-quarter of older adults. However, more than 50% of adults over 85 received help from a caregiver. As the U.S. population ages, caregiving from both family members and home health aides will become undoubtably become even more prevalent. 

However, despite the increasing importance of caregivers in the lives of older adults, health care systems are not always built to accommodate caregivers into the care team. According to a 2015 AARP survey, only one-third of caregivers say that a health care provider asked them about what we needed to care for the recipient.

In a recent perspective piece in JAMA Internal Medicine, Dr. Madeline R. Sterling and Dr. Amy L. Shaw at Weill Cornell hospital write about the need to integrate both formal and informal caregivers into health care for older adults. Sterling and Shaw point out that information about caregivers is not always included in patients’ medical records, so physicians may not always be aware that there are other people providing care for their older patients. Additionally, most physicians do not receive any education on caregivers during their training or in continuing education, they write.

Without this information and training, it is less likely that doctors will include caregivers in conversations about the patient’s health care. This is an unfortunate missed opportunity because, when caregivers are included (with the patient’s consent), they can provide essential information to clinicians about the patient’s health. Including caregivers who assist with health care needs at clinician visits can also ensure that any new treatments or medications are implemented at home as necessary.

Sterling and Shaw give an example of a patient who brought her home health aide and her daughter (virtually) to their visits:

After several months, and many more 4-person visits, I realized that each of us played an essential but distinct role in Yanick’s care. While I always directed my questions toward her, Marie and Christine often chimed in with important observations or questions.

“Did you tell the doctor about your stomach pain?” Marie whispered at the end of a visit, during which Yanick spent the majority saying she felt fine.

“Doc, did the records arrive from the orthopedist?” Christine asked one afternoon. “They said something is wrong with mom’s knee.” Before she mentioned this, I didn’t know that Yanick had been to another orthopedist for a second opinion.

Sterling and Shaw offer recommendations for clinicians who see older patients, to help integrate their caregivers into their health care. They recommend that clinicians ask patients about their caregivers’ roles when taking a medical history and record this information in the medical record. Clinicians should also be sure to ask patients’ permission to involve caregivers at medical visits. Because caregiver roles and patient preferences may change over time, clinicians should reassess this information periodically.

All of these recommendations will require clinicians to recognize the crucial role that formal and informal caregivers play in the health and well-being of many older adults. Welcoming caregivers to participate in clinical visits, with patient consent, is an important way to support both older patients and caregivers.

The post Bringing caregivers into the conversation appeared first on Lown Institute.

Despite her father’s wishes, he was being scheduled for surgery. It wasn’t until their family realized that the surgery would only prolong his life by six months, and he have to endure chemo, radiation, and other side effects, that they realized that surgery was the wrong choice. “[My father] preferred eight weeks of being with his family over eight months of disability and unpleasant treatments,” said Oster.

Oster’s story illustrates how powerful the phrase “Do you want everything done?” can be when patients and families are making end-of-life treatment decisions. A recent study by Dr. Guilio DiDiodato, at the Department of Critical Care Medicine, the Royal Victoria Regional Health Centre, shows that the “Do you want everything done” effect is more than anecdotal–it has a remarkable impact on family members’ treatment decisions.

DiDiodato created a survey that gave respondents a hypothetical scenario in which they were a surrogate decision maker for a loved one who is critically ill. Respondents were asked to decide whether or not to withdraw life-sustaining treatment, based on their loved one’s hypothetical age; prognosis for survival, physical function, and communication; length of stay in the hospital; and stated preferences, all of which were given in the scenario (see table for examples).

Unsurprisingly, the survey respondents subjects were more likely to consider withdrawing life-sustaining therapy in older patients, those with a worse prognosis, those who had been in an ICU for a longer period of time, and those who had expressed their wishes to not be kept on life-sustaining therapy. The most influential factors affecting the decision were age and stated patient preferences.

Knowing that the patient “wanted everything done” had a significant impact on survey respondents’ decisions. Even in the worst case scenarios, when the hypothetical patient was older and had poor prognoses, when patients said they “wanted everything done,” survey respondents said they would withdraw life-sustaining therapy 18.8% of the time on average, compared to nearly 60% of the time for patients with similar characteristics but different stated preferences.

“Regardless of a patient’s age, time spent in ICU, poor prognosis for survival, or recovery, once a surrogate decision maker has heard a patient given an affirmative response to “Do you want everything done?” the likelihood of WLSTs is markedly diminished by a factor of 2–3 times compared with another phrase that may have been used to elicit a patient’s goals of care and values,” DiDiodato writes.

This is problematic because usually when patients agree to have “everything” done, there is little or no discussion about what “everything” entails. It could mean surgery, harsh therapies, or indefinite life support. It could mean that the patient is kept alive but with no ability to communicate or move at all. This presents serious ethical problems for both patients and clinicians.

For example, as Dr. J. Lane Wilson recalled in a heartbreaking story earlier this year, the family of a woman who was dying of sarcoidosis refused palliative treatment, insisting that the clinicians do “everything they could” to keep her alive. What the family did not know was that “doing everything” meant that the patient “spent the last months of her life in the hospital, barely aware of her surroundings other than her struggle to breathe” and that the last thing she saw before she died was “a stranger pounding away at her chest.”

DiDiodato concludes that clinicians “should never use the phrase ‘Do you want everything done?’ as part of soliciting a patient’s goals of care and advance directives. By using this phrase, not only are they asking for informed consent to provide an intervention that does not exist, but they are also potentially exposing both the patient and their surrogate decision maker to a future of needless suffering.”

At the same time, we should make patients and families more aware of the harms and benefits of treatments, and stop equating palliative care with “giving up,” to encourage patients and surrogate decision makers to engage in conversations about what they really want at the end of life, rather than defaulting to “everything.”

The post “Do you want everything done?” How language impacts advance care planning appeared first on Lown Institute.

Shared decision making is especially important for older patients with multiple chronic conditions, because guidelines may suggest certain treatments based on targets (such as A1C or blood pressure), without taking into account how these treatments will affect patients’ quality of life or treatment burden.

In a recent study in JAMA Internal Medicine, Dr. Mary Tinetti at the Yale School of Medicine and colleagues measured the effects of patient priorities care (PCC) on patient-reported outcomes and treatment burden for patients with multiple chronic conditions. Patient priorities care is “an approach to decision-making that includes patients’ identifying their health priorities (ie, specific health outcome goals and health care preferences) and clinicians aligning their decision-making to achieve these health priorities.” They found that patients who received PPC were twice as likely to have medications stopped, less likely to have diagnostic tests ordered, and reported decreased treatment burden, compared to patients who received usual care.

While shared decision making models like PCC have shown the potential to improve patient outcomes and reduce treatment burden, they have proved difficult to implement on a larger scale. Studies of clinician-patient conversations show that few clinicians elicit patient concerns before making treatment decisions, and clinicians who do ask patients about their goals often interrupt patients within a matter of seconds. Even though guidelines may require shared decision making before doing tests like cancer screenings, clinicians regularly fail to point out the harms and benefits of testing.

In an accompanying commentary, Dr. Ian Hargraves and Dr. Victor Montori from the Mayo Clinic discuss ways in which clinicians can better align treatment decisions with patients’ priorities. They posit that many shared decision making efforts have failed because clinicians have been trained to document patients’ preferences and values to check off boxes, rather than have a real conversation with patients. They write:

“In our experience with developing shared decision-making interventions, we have found that patients often struggle with questions about their preferences or about what matters to them, and clinicians often seem unable to act on their answers. The commonsensical “What matters to you?” may be the wrong question. This inadequacy may lie in that values, preferences, goals, and what matters most to us are not relatively set traits of a person available for extraction. Rather, the values, preferences, and goals arise in living life and are discovered in understanding how life is lived.”

With PCC, the patient and non-physician clinician have a conversation about the patient’s life, relationships, and activities to help the patient identify their health goals. Focusing on how patients live their lives and want to live their lives may help identify which health care treatments are helping or preventing patients from reaching their goals.

The post Prioritizing what patients care about appeared first on Lown Institute.

In a recent study in The BMJ Open, CEO of Patient Safety America and Right Care Alliance member John James and his research partners conducted a survey of several patient groups to better understand what patients want to know before making a significant treatment decision. 

They found that, overwhelmingly, patients want more information on the benefits and harms of all treatment options, including:

• Whether there are alternative treatment options to invasive procedures, such as doing nothing;
• Whether a drug has been prescribed off-label or has a black-box warning;
• The names and experience levels of clinicians performing their procedure; 
• The out-of-pocket costs of treatment options; and
• Knowing the nature of the recovery process after any invasive procedure, including infection risk.

Patients also approved of having certain tools and supports available during treatment decisions, such as:

• Having the use of decision aids during conversations;
• Having a family member present to advocate for them;
• Having a full day to think over the treatment options before signing anything (for non-emergency procedures); and
• Having the option of reviewing their medical records and making entries.

To learn more about the study and discuss the findings, we asked John James a few questions.

Lown Institute: How did you first think of the idea for this study?
John James: I got the idea for this study because I was frustrated by bureaucratic hurdles in my attempts to improve patient rights. The Center for Medicare and Medicaid Services (CMS) simply did not want to listen to the voice of a patient advocate. I saw an article noting that half of the states (including my home state of Texas) had defined informed consent as the information a “reasonable patient” would want to know. To my knowledge, no one had defined that in a systematic and comprehensive way, so I thought that gaining more information about what patients want to know would be valuable.  

How did you find the research and collaboration process?   
The research was great fun, especially when the survey results came in showing great consistency in what patients want to know. It was like magic when the national survey was accomplished in 1-2 days and the data were compiled. My former NASA colleague, Bob Scully, and my other collaborator, Darwin Eakins, were great to work with. I have to say that the requirements of the reviewers and editors made the paper into a bit of a monster; it’s harder for a non-expert to read now than in its original form.  

Why do you believe that studies like this are so necessary?   
This sort of study is essential if the voice of patient is to be heard as health care is made more affordable and safer (hopefully). Physician-driven informed consent and patient-centered informed consent are miles apart. If we want a health care system that supports genuine informed consent and shared decision making, we have to move toward patient-centered definitions of informed consent.   

How do you think treatment decisions would change if patients received all the answers to the questions in the survey? How would the clinician-patient relationship change?  
I believe there would be fewer invasive procedures and that patients’ trust in their doctors (which has declined) would greatly improve. The cost of health care would diminish some as less invasive procedures are chosen. Care would also be safer because the patient would know that they are in control of what is done to their body and that they have a say in what is entered in their medical record. That responsibility would impel them to be make sure the delivery of care is safe.  I think doctors would eventually like this version of informed consent because it would encourage a closer and more humane relationship with each patient. However, time management for clinicians could be a challenge, given that it takes more time to ask and answer these questions and have a conversation about harms and benefits of treatment options.  

What’s next for your research and writing on this topic?  
My plan is to co-write an article with some lawyers for a major legal journal. The goal for this paper would be to inform lawyers about the improved definition of informed consent in terms of what a reasonable patient wants before an invasive procedure is undertaken.

The post Redefining informed consent: What do patients want to know? appeared first on Lown Institute.

But don’t despair–in the latest edition of NPR‘s Life Kit series, Lown Institute Senior Vice President Shannon Brownlee, patient advocate Liz Salmi, and Johns Hopkins surgeon Marty Makary offer some tips on how patients can maintain control over their health care in stressful situations. The segment was hosted by Georgetown University family medicine physician Mara Gordon and general internist and President of the University of Oklahoma John Schumann.

Listen to the radio piece on NPR here!

Salmi used her story of receiving a diagnosis of brain cancer to illustrate some of the challenges in dealing with the health care system. “The words of what you have are delivered in really technical speak. They don’t say, you have brain cancer. They say… you have a grade two astrocytoma,” said Salmi. Other challenges include not knowing which doctor to contact about which issue, getting access to doctors’ notes, and learning all of her options before making treatment decisions.

“Any doctor who doesn’t want you to get a second opinion is a doctor you shouldn’t be seeing” — Shannon Brownlee

The panelists emphasized the importance of having a primary care doctor be the center of your care team. “We have primary care doctors who want to be in the loop of everything that happens with that patient. You want someone who’s fighting for you like that,” said Makary.

However, when making a major treatment decision, getting another doctor’s opinion is key. “Any time you are told, you need a seriously invasive procedure, you need a second opinion,” said Brownlee. “Any doctor who doesn’t want you to get a second opinion is a doctor you shouldn’t be seeing.”

Taking your time to weigh these options once you know them is extremely important; you should not feel rushed into surgery if it’s not an emergency. Brownlee suggests questions to ask your doctor before embarking on a major procedure: What happens if I don’t get treated? What are the chances this treatment will work for me? How will this affect my quality of life? And in general, a doctor’s outright dismissal of your concerns without an explanation should be a red flag. 

For more tips, listen to the full piece on NPR.

The post Managing your health care in the face of a serious illness appeared first on Lown Institute.

Jacobson describes a difficult case in which a patient with advanced lung cancer came to Dana-Farber after her local oncologists told her they didn’t have a way to cure her cancer. Jacobson’s team started her on an aggressive course of radiation, which left the patient significantly weaker and led to a cascade of interventions, exacerbated by the patient’s underlying chronic conditions. A few months later, the patient died in the ICU, never having had a conversation about her goals of treatment.

As Jacobson reflects on this story, he realizes that the desire to “rescue” on the part of both patients and doctors is preventing us from recognizing the harms that aggressive cancer treatments can cause. Despite the “disabling toxicity” and financial costs of seeking aggressive and experimental treatments, we rarely discuss whether this treatment is preferable, or even ethical, because the ubiquitous message to cancer patients is “keep looking for options and don’t give up,” writes Jacobson. 

We rarely discuss whether this aggressive treatment is preferable, or even ethical, because the message to cancer patients is “keep looking for options and don’t give up.”

Jacobson describes how the culture of oncology and professional incentives put more value on rescue than on incrementalism, and acknowledges the responsibility of oncologists to engage with patients in conversations about expectations. However, there are several factors that drive the expectation of rescue for advanced cancer that Jacobson does not mention in his story, but are worth discussing. 

Cancer is a “battle”

One reason patients and doctors expect aggressive treatments for incurable cancers is because of the prevalent but problematic metaphor of cancer as a war. When someone receives a cancer diagnosis, a common response from friends and family is that they can “fight cancer and beat it.” Obituaries often say someone died “after a long battle with cancer.” The message is clear: Cancer treatment is a war and we need to fight with everything we have to survive.

Unfortunately, not all diseases can be overcome. Thinking of cancer or other diseases as battles is discouraging for patients who do everything they can, but don’t find themselves getting better. “If the chemotherapy and radiation and surgery and drugs don’t work, and I die, will people be disappointed in me for not ‘fighting’ hard enough?” asked former cancer patient Xeni Jardin in a CNN op-ed.

Cancer is strange to think of as a battle, because the enemy is inside one’s body and comes from our own cells. As cancer patient Kate Granger wrote in The Guardian a few years ago, “In my world, having cancer is not a fight at all…I live with it and I let its physical and emotional effects wash over me. But I don’t fight it. After all, cancer has arisen from within my own body, from my own cells. To fight it would be ‘waging a war’ on myself.”

Despite pushback from cancer patients and advocates, the metaphor of cancer as a war is widespread and affects patients’ and oncologists’ expectations of cancer treatment.

Hospitals marketing hope

Jacobson points out a few reasons why some advanced cancer patients have expectations of rescue, but misses a large one: marketing by cancer centers that imply that patients can beat the odds and be cured. 

Last year, the consumer watchdog group Truth In Advertising (TINA.org) documented marketing practices of top cancer centers in the US and found that 90% of centers used advertisements with deceptive marketing practices, such as using atypical patient testimonials without including information on typical results for a patient with that diagnosis.

According to TINA, the Dana-Farber Cancer Institute (where Jacobson works) was the 4th-largest marketing spender among all US cancer centers. Dana-Farber’s advertisements included many atypical patient testimonials, implying that patients can “beat the odds.”

As Dr. Lisa Schwartz and Dr. Steven Woloshin wrote in a 2016 editorial about cancer centers’ marketing practices, “Cancer center advertisements generally make appeals based on emotion—not fact. The appeals raise the stakes, in essence saying you are in great danger but can be saved provided you make the right choice or doomed if you do not.”

Is it any wonder that advanced cancer patients come in with the expectation of rescue, when our culture tells cancer patients to fight as hard as possible, and hospital advertisements tell patients that they too can be saved? As Jacobson writes, we have to confront the ethical implications of treating patients with fatal cancers with multiple rounds of chemotherapy, radiation, and other aggressive treatments, without engaging patients in a conversation on their prognosis and treatment goals. 

The post Hope, Hype, and Hospitals appeared first on Lown Institute.

Lown Institute: Tell us about how you got involved in education around health literacy

Gary Fradin: A long time ago, I studied public administration at Harvard. Whenever we evaluated a program, we would ask the questions, “How well does an intervention work?” “Who benefits and who loses?”

It occurred to me that we don’t ask these basic questions in health care. Somewhere along the way, we stopped asking, “How well does it work?” and just asked, “How does it work?” We get too involved in the mechanisms. From a public administration background, this doesn’t make sense.

Why is “How does it work” not the right question?

We often get caught up in the mechanisms of health care interventions, so we ask how something works. But treatments all sound good if you just talk about the mechanisms. It happens very often — almost half the time — that a new intervention that is biologically plausible (for example, opening up arteries with stents prevents heart attacks) turns out not to be more effective than existing therapies.

What questions should we be asking in the doctor’s office?

In the presentation I give to insurers and patients, I include four key questions that patients should ask their doctor before every medical intervention:

• Out of 100 people like me (people with similar age, risk factors, etc), how many benefit and how many are harmed according to studies?
• Is it overused in the real world?
• Would most physicians make the same recommendation or might some suggest something different?
• How many patients like me do you treat annually?

Where did these questions come from?

The questions are designed to help patients learn more about an intervention before they agree to it, in the same way you would do research before making any big purchase. For example, before you buy a car, you would want to know: How well does the car work? What are my options for types of cars to buy? Which company makes that type of car best?

The first two questions help doctors and patients understand how well an intervention works, both in studies and in the real world. The third question starts a conversation about the options for treatment. And the last question helps patients find out the level of experience their doctor has with the option the patient decides is right for them. 

What if a doctor doesn’t know the answer to a question?

“I don’t know” can be an acceptable answer, because sometimes the research does not exist yet. But asking the question should open up a conversation about the risks and benefits. What you don’t want to hear from a clinician is, “The treatment reduces your risk by 30%” or “Side effects are infrequent.” These answers don’t give you an idea of your absolute risk.

If you ask your doctor a question and they don’t want to answer it, that doesn’t mean the conversation is over. I would tell the doctor, “If you don’t know the answer that’s okay. But I’m uncomfortable proceeding without talking about this first.” This is why medical literacy is so important. The better you understand the issues, the more confident you will be in pursuing the conversation.  

Someone who took one of my classes later told me that he had asked both his cardiologist and dermatologist, “Out of 100 people like me, how many benefit from this intervention?” The cardiologist said, “I don’t know, let’s find out” and they looked at some of the research together and talked about it. This helped the patient feel more comfortable asking questions of his cardiologist and helped them build a better working relationship.

When he asked the same question of the dermatologist, the doctor said, “If you don’t trust my judgement, you can find another doctor.” So he learned an immense amount about these health providers just from one question.

How important is medical literacy to facilitating shared decision making?

Medicine is both an art and a science. These four questions and the discussions they provoke help uncover the scientific part, the facts. The art comes from interpreting those facts, determining if an intervention works well enough for a specific patient and applying the doctor’s experience and wisdom to the patient’s needs. Medical literacy is necessary but insufficient alone to make wise decisions. 

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