Teresa Wright-Johnson is a giant of advocacy. We stand on her shoulders; she stands on ours. “You matter” coming from Teresa is powerful and uplifting. Teresa is a Multiple Sclerosis Warrior and Congenital Heart Disease Survivor. A retired Parole Officer, Teresa uses her life experiences to inspire and inform others. She’s careful, conscious, and confident. She sets an example and speaks for the unspoken.
Amy Gleason is Morgan Gleason’s mom. We discussed parenting style, cues for calibrating autonomy, the importance of parent support groups, managing depression, self-care, and advocacy by transitioning young adults. Welcome to this sixth in a series about Young Adults with Complex Medical Conditions Transitioning from Pediatric to Adult Medical Care.
Clinical decision support researchers, developers, and implementers this is for you. Clinical decision support (CDS) technology can maximize trust and engagement during decision-making if used to its full potential. Or NOT. Consider the patient and family perspective in making choices about pain management and opioid use CDS.
We know that often, clinical decision-making depends on the relationship between patients, the family caregivers, and the clinicians they interact with. We know that time and life flow greatly impact that relationship. The patient appointment with a clinician often lasts 10-20 minutes – sometimes less, sometimes more. That time is precious. The clinical visit for patients and caregivers represents a drop in the ocean of their health management. Clinical decisions live amid housing, child/parent care, transportation, financial and other life decisions. It’s seldom one decision, but repeated decisions. Think of taking a medication three times a day or following a diet. Only a small proportion of clinical decisions take place during the appointment. Most questions about clinical care or following the agreed upon plan of care occur before and after a medical appointment. CDS technology can maximize trust and engagement to inform decision making, but the effectiveness depends upon the information that is presented and how the CDS is implemented (e.g., when and where it is presented, how it is presented, who it is presented to).
I am a member of CDS Connect, a team of academics, researchers, programmers, clinicians, clinical leaders, informaticists, policymakers, patients, and advocates. Our work is funded by the Agency for Healthcare Quality and Research (AHRQ). The CDS Connect Repository demonstrates AHRQ’s mission of ensuring evidence-based research is clearly understood and utilized in clinical practice, by codifying and freely sharing evidence-based standards of care as CDS artifacts. In 2018 we are supporting clinical care related to pain management and opioid use.
This article provides insights on the patient and family caregiver perspective in making choices (clinical decisions) about pain management and opioid use in the face of uncertainties. That perspective includes the range of engagement experienced by patients and clinicians, recommendations for artifacts that would help, and some design considerations when researching, developing, or implementing CDS.
Patients and Clinicians Manage Pain Together
While there are 46 words for snow in Iceland, English has far fewer synonyms for physical pain (e.g., suffering, aching, torture, throbbing, discomfort, ache, sore, throb, sting, twinge, shooting, irritation, tenderness). Similarly, CDS that supports pain management should not take a one size fits all approach. Patient and caregiver engagement levels and perspectives vary as much as snow. Effective CDS artifact design and implementation understand this range of patient engagement:
Patient A: “I drive my own train”
I know my personal health and life goals. I’m the CEO of my health team. I trust my team. I want a plan to meet my goals and reduce my pain. I’m not afraid to lack knowledge. I’ll get it eventually. I’d appreciate answers to my questions when I have them. I can keep track of stuff, but welcome tools to help me do that.
Patient B: “I’ll do whatever you tell me to do”
I’m trying to manage life. I go to the doctor when I have to. I may or may not get along with the doctor. I don’t think he really likes me. I’ll try to follow instructions if I can [understand, afford, get there, remember]. Really, I prefer video, my reading of English isn’t that good. Maybe my grandson can explain it to me when I get home. I talk about medical problems [at place of worship], [at home], [with family/friends], [never]. In my culture, doctors are the boss.
And everything in-between.
And during all this, they are in pain. The severity of pain may impact people’s ability to engage with a clinician during an office, urgent care, or emergency visit. It is very likely to impact their ability to participate in decision-making and sort through all the information relevant to their condition.
Clinical care occurs in the context of a relationship between patient and clinician in an institutional setting (office, urgent care, emergency services). The variation in clinician engagement varies as widely as patient engagement:
Provider A: “What’s most important? My relationship with my patients”
I’m available when you need me. Tell me what you need and what you understood. Who is your care partner? Can you afford the care being discussed? I’m comfortable with choices, uncertainty, and risk and can explain it. I know when there’s a disconnect. I want to know and record the outcome of the decision we and others made. These CDS tools help me.
Provider B: “Just get me through the day, I’m so tired”
Here is a print-out with instructions. I’ve only got 7 minutes for this visit. I’ll get dinged if I don’t check the right boxes. What do you mean, you didn’t follow my instructions? Really, who cares? Where do these people come from? What am I supposed to do with this pop-up or instruction? It’s disruptive. I’m spending too much time in the EHR already.
And everything in-between.
CDS may be most effective when designed to match the level of patient and clinician engagement. Well-designed CDS that presents relevant information to the right person, when they need it, in a format that is useful and easy to understand, via the right channel (e.g., an EHR, a patient portal or perhaps a mobile app) is a feasible and realizable approach to bridging some of these divides – whether based upon motivation, skill, experience, or culture.
Patients could use your help to manage their pain, in partnership with their clinicians
Imagine CDS delivered via an app or a patient portal that is available 24/7. The “tool” displays a pain management dashboard comprised of the following information:
- Treatment goals – including physical function, behavior modification, and any associated milestones
- Plan of care – who’s doing what and when are they doing it (including the patient, their caregivers, clinicians, and ancillary care team members). This includes a calendar view of the plan of care, to more easily track and act upon each entry.
- An up-to-date list of all care team members (including the lead clinician for pain management and caregivers) with contact information and preferred communication methods and hyperlinks
- Links to moderated information and social resources tailored to the patient
This dashboard could support both patient perspectives described above – the “take charge” patient who wants as much access to their information as possible and the “tell me what to do” patient (or their caregiver) who might benefit from the information as a reminder of the plan of care. It also supports the patient’s clinicians by placing the patient in a better position to agree upon, track and comply with their plan of care.
Other patient-centric CDS tools may include:
- A pain tracking app integrated with the EHR
- Reminders of tests, activities, behavior modification plans, or prescriptions along with their status and any actions needed
- Mobile health technology used to present CDS, such as Telehealth or mobile apps
- A display of treatment options, the circumstances that led to those options, and the option chosen
Your Efforts Can Influence CDS Engagement, Acceptance, and Effectiveness
Patients, direct care clinicians, and those that support them need to have a seat at the table from the inception of the CDS – and provide their input during research, design, development, testing, implementation, and evaluation. Simple, intuitive, user-centered design is critical to acceptance and usefulness. Well-designed artifacts are developed with an awareness that frequently, the work of using these tools falls to caregivers and clinical support staff. Effective CDS is designed and implemented to support both patient preferences and clinical workflow. Rich involvement of all people at the center of care allows for consideration of their varied preferences, abilities, life flows and workflows, thus improving the adoption, impact, and usefulness of CDS.
This article seeks to provide insights into the patient and family caregiver point of view while making choices about pain management and opioid use. It accepts that one size does not fit all and considers the range of engagement experienced by patients and clinicians. It provides recommendations for CDS artifact development through actual use. The key is involving the people at the center of care in all phases of CDS development and implementation, including patients, their caregivers, and direct care clinicians. Embracing these strategies helps to ensure that ultimately, CDS will positively impact patient health outcomes.
Last month I asked for a reality check from my social networks on behalf of the Patient-Centered Clinical Decision Support (PCCDS) Learning Network about helping people use information better in managing pain:
Everyone makes decisions about managing pain sometime in their lives. Most people with chronic illness make repeated decisions about managing pain every day. Some people are fortunate to have strong relationships with trusted clinicians and care partners to share the decisions about managing pain. An alarming number of people have found themselves in a downward spiral of addiction to opioids first taken to manage their acute or chronic pain.
Many (more than 25) of you responded. You being People at the Center of Care (people with pain, medical and non-medical professionals advising and treating people with pain, and the people who support patients and professionals day-to-day.) Thank you for your insights. They make a difference. Here’s a summary, lightly edited, of what I heard.
Opioids and Pain
Most respondents couldn’t relate to opioid clinical decision support. They could relate to pain management. Nobody said they preferred to take opioids. A few said that when their chronic pain was really bad, opioids were the only thing that worked. They were frustrated that they couldn’t get them anymore due to the heavy focus on opioid reduction.
- When I have a sickle cell crisis, only opioids relieve my pain. I’ve had to remain in excruciating pain because they thought I was drug seeking.
Describing pain is frustrating and limiting
- The question frustrated me every time. I asked them to create a standard list to choose from addressing the quality, duration, intensity, location, etc. of the pain. That would have been so helpful. As you have learned to gain awareness to name and to know your pain, your mindful ability to stay with it, rather than run from it, I believe is part of the equation you seek to address. Aversion and fear of our experiences only add another layer of pain.
- I have to manage my doctors’ abilities to hear about the pain. If I score too high I’m a complainer and they think nothing will work. If too low, then I’m not worth treating.
Pain Goals and Concerns
Managing pain occurs in the context of a life (determinants of health)
- Discuss my pain goals and concerns with me, including financial & emotional goals and concerns.
- Care about my life and what I’m trying to accomplish. I need pain relief to be a parent, a worker, a partner, a contributor.
- Chronic pain is expensive to manage when most health insurance benefit plans readily cover Rx, but only sometimes cover non-medication therapies. E.g. denial of physical therapy claims for on-going pain management relief. In an ideal scenario, health insurance would cover non-medication-centric pain management services as a matter of course, in parity with Rx coverage for the same condition.
- Refer patients to integrated behavioral health support to address coping skills in recognition of the chronic pain and depression relationship.
The bridge between evidence and personal expertise.
- Managing pain is a continual experiment. Nothing works every time you’re in pain, including medication. You need several proven choices.
- I try to keep a journal of how I’m feeling, what I’m doing, and what works as I manage pain. It’s really hard to do when you’re in pain.
- There are many therapeutic strategies that address the symptoms of physical pain and ways to interrupt the pain cycle and the experience of pain. I wish I were an expert on the subject. I know that there are some good answers available to people who struggle with chronic pain. I believe that people need a combination of coaching and knowledge, as well as hands-on treatment, to benefit from these answers.
Doctors and Managing Pain
- Doctors only know about drugs. They can’t admit they don’t know about anything else that might work.
- Doctors don’t have time for pain management. It can’t be done in occasional 20-minute visits.
- Most of my questions about pain management occur when doctors aren’t available, like the middle of the night.
- Technology is not a substitute for time and the relationship with my doctor.
- I think we need to make the WHO pain ladder (cancer pain) one outcropping of a multimodal pain strategy but start with nonpharm, reorienting the meaning of pain, and subsidize multimodal pain plans before surgery and after injury. As a pediatrician, pain researcher, inventor, innovator, and former procedural sedationist (I’ve pushed a LOT of fentanyl/propofol/ketamine), I’m much more interested in prevention and lowering the amount of opioids in circulation.
- We have an evidenced-based six-week peer-led pain self-management program that is widely used in the US, Canada and elsewhere. People can find locations near them by going to the Evidence-Based Leadership Council and clicking on the program locator on the upper right.
- As part of The Pain Companion book launch, I’ve been on a number of excellent radio and TV shows recently talking about life with chronic pain and how we might find greater ease and well-being.
- I recommend getting in touch with the British Pain Society. They are the organization that supports British Pain Clinics. The Pain Clinics in the UK have embraced some of the complementary and alternative remedies that are quite helpful with pain management. It is part of their standard protocol and clinic staff work with patients to implement these treatments.
Suggestions and Questions
- We should compensate doctors better for pain management discussions.
- Why don’t we use palliative care specialists when patients have chronic pain? Palliative care is not just for the dying.
- Pay post-op patients $200 to spend on a Pain Plan approved intervention if they don’t fill an opioid prescription.
- Give a list of evidence-based non-pharm options to every pre-op patient, and with every new opioid script.
- Isn’t there a start-up in compiling non-medication pain management resources by zip code?
- Why don’t we do more research about non-medication options for relieving pain?
Wow. Responses are still rolling in. Thanks to everyone. I am compiling these into a resource center that will include a pain management section. This is just the beginning of the conversation.
Everyone makes decisions about managing pain sometime in their lives. Most people with chronic illness make repeated decisions about managing pain every day. Some people are fortunate to have strong relationships with trusted clinicians or care partners to share the decisions about managing pain. An alarming number of people have found themselves in a downward spiral of addiction to opioids first taken to manage their acute or chronic pain.
Greetings fellow patient/caregiver activists and advocates! I need your help to be successful in some work I’m doing to help people use information better in managing pain. This post takes two minutes to read. A couple of links might take 7 minutes to read. Thinking and responding…. If you can, please take the time. I’m part of this team and I have my own experience with pain management and decision-making. We need a wider reality check. That’s you. Thanks for all you do. Read More
Yesterday, I was listening to Casey Quinlan’s podcast, Healthcare is Hilarious: an interview with Victor Montori who wrote Why We Revolt-The Patient Revolution for Careful and Kind Care. I haven’t read his book yet, but I will. The interview on Healthcare is Hilarious is stellar.
Merriam-Webster says a revolution is:
- a sudden, radical, or complete change
- activity or movement designed to effect fundamental changes in the socioeconomic situation
- a fundamental change in the way of thinking about or visualizing something: a change of paradigm * the Copernican revolution
- a changeover in use or preference especially in technology *the computer revolution *the foreign car revolution
One of the things that Victor said was that reformers are important, but healthcare is not designed for health and wellness, care and kindness. The entrenched forces will not fundamentally change with reform. It needs a revolution, a patient revolution. I’ve never been good at putting other people’s labels on myself – I don’t know if I’m a reformer or a revolutionary. During my professional and now activist career, I’ve seen myself as a catalyst for change – sustainable change that continues when you’re gone.
My revolutionary heroes include: Mary Wollstonecraft (sparked the change to allow women to have the right to full participation in society), Mahatma Gandhi (the power of nonviolence and forgiveness), Oliver Cromwell (translating the Bible into English so lay people could read it), Florence Nightingale (invented nursing and used statistical analysis to improve care), Albert Einstein (the theory of relativity changed how we think of time and space), and Rachel Carson (sparked the global environmental movement).
The relatively recent revolutions in healthcare that stand out to me include the discovery of anesthesia, legislation for Medicare, Medicaid, the Consumer Protection Bureau, Patient-Centered Research, and universal voting rights for citizens over the age of 18. Add value-based payment, elevators, asynchronous communication, palliative care, anti-viral medications, precision medicine, synthetic opioids, desalinization of water, mass-produced solar power, worldwide transportation (of people, food, products, and pests), smoking restrictions.
With some revolutions, there’s no going back. Anesthesia isn’t going away. Neither are elevators. Every revolution has unintended consequences affecting some people badly, even lethally. Anesthesia can cause harm. So can elevators, asynchronous communication, and synthetic opioids. Legislation can be undermined or rescinded. Almost anything can be co-opted and diluted. Most revolutions are never-ending projects requiring constant vigilance and advocacy.
In my narrow world frame, I look for the magic levers of best health. What small things make an outsized difference? Obviously, drink clean water, eat just enough, don’t smoke, get plenty of rest, do meaningful work are magic levers. Maybe the revolutions are magic levers, too.
The revolutions that I’ve hitched to are:
- People at the center of care sitting at the tables of governance, design, operations, and learning for research, policy, payment, technology, and care delivery.
- Individual ownership (access to, contribution to, authorization for, and payment for) their own health data.
- People and relationships at the center of care making decisions together for best health.
- Healthcare as a right with universal access.
Note: people at the center of care are patients, direct care clinicians, and the people that support them.
I like to try to predict future revolutions, although my track record of predictions is terrible (I was never going to get married or have kids. I was going to keep my last real job until I was 70 and then I’d retire). The thing about revolutions is that they’re crazy difficult to predict and harder to consciously engineer. I’m old now. I don’t want to run anything anymore. I’m happy to follow revolutionary leaders who are charismatic, kind, caring, and persistent. I can be a thought leader, a writer, and a solid team member. So, I am not the revolutionary.
Viva la revolution!
My pathological optimism is under assault. How do I live with myself as a privileged white man? How do I continue my advocacy as a patient activist? This week I listened to Terry Gross speak with Maya Dusenbery on Fresh Air about her book, Doing Harm, The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. I listened to Amy Chua speak about her book Political Tribes: Group Instinct and the Fate of Nations on the Lawfare Podcast. I watched Samantha Bee on Full Frontal talking about women, history, and the treatment of pain. The wind has been sucked out of my sails. I may style myself a feminist, but the country, the healthcare system, medical research and the breaks are designed for me. I certainly have my challenges, but they are minimal compared to those outside my shrinking white man minority tribe.
I care about learning what works for people – groups and individuals – as they strive for best health. Yet most historical evidence – research – has been designed for white men, not women, not refugees, not people with limited means and power. It makes me crazy. What is wrong with us? Plus, our nation seems to increasingly petty, mean, shortsighted, and self-interested.
OK, white boy, get over it. I once got myself in trouble at diversity training. I said, My father was gay, my parents were holocaust survivors and refugees, my brother and sister are of mixed race, and I’m a man in a female dominant field – nursing. And now I’m disabled. My prejudices aren’t about gender, religion, race, disability. I’m prejudiced against thoughtless people. I was not appreciated.
Anyway, nothing has changed from before this week and now. The world is still crazy. I live in a racist, misogynistic, mean-spirited country. Thankfully, there are tribes of people trying to do the right thing. I can’t afford to lose my pathological optimism. I’m still working more and more on advocacy about making collaborative health choices (informed decision-making) with my health team based on science and my environment, circumstances, and values. Treating health choices as a grand experiment is still a sound approach. Try stuff, see if it works. If it doesn’t, adjust. I am so heartened by the March for Our Lives initiatives. Activated young people are our hope and our future.
It’s Passover, time to celebrate liberation. Liberation is not a destination, it’s the journey.
Thanks for listening to me rant. Good to be on this journey with you. We have work to do.
Thoughts on Liberation
Let us not seek to satisfy our thirst for freedom by drinking from the cup of bitterness and hatred. Martin Luther King Jr.
I did nothing but international liberation politics for ten years, and usually it was like, you gain an inch, you lose a half an inch. It’s slow going, man. Steven Van Zandt
If you’ve got nothing to dance about, find a reason to sing. Melody Carstairs
On the road to liberation, learn to press Next. Even if there is no such an option. Talismanist Giebra
I am the bended, but not broken. I am the power of the thunderstorm. I am the beauty in the beast. I am the strength in weakness. I am the confidence in the midst of doubt. I am Her! Kierra C.T. Banks
We (patients and clinicians) need all the help we can get making informed health care decisions. We need the right information to the right person, in the right format, through the right channel, at the right time in our life flow and workflow – The five rights. Let’s take managing acute pain as an example. Clearly, we need to make some decisions together. I (the patient) am in pain for whatever reason – hurt my back, migraines, colitis, sickle cell, a million reasons. I (the clinician) need to help my patient manage that pain with the least long-term risk possible, e.g. relief with maximum function without addiction, constipation, confusion, whatever. This pain could be new – never had it before, or familiar – chronic (we have experience with what works and what doesn’t). Clinical decision support can help us to structure and inform a routine to make choices based on research and clinical and life experience. What has worked for groups of people (those with acute back pain, migraines, colitis, sickle cell) and what has worked for the individual (me or my patient)? We can welcome this decision support when symptoms first occur, when the patient and clinician first communicate, when they first meet about the symptoms, or as we try treatments until the pain goes away or is manageable – anytime from first pain to living with pain to no pain. Read More
I trust my primary care doc. I trust my neurologist. I trust my instincts. I trust my gut. I do. I trust my wife. She trusts me. That certainly doesn’t mean that we don’t question almost everything each other says. Trust is not blind faith. Trust is NOT no second opinions. Trust is for when I’m in a crisis and I can’t think clearly, I will listen to my immediate family and my two lead docs (in that order) and I’m likely to do what they recommend… unless I’m unsure. Trust is for when I need to make a decision but can’t or don’t want to. And these are all people’s opinions about what I should do with my life. I know I should lose weight. People I trust say I should lose weight. It takes a certain alignment of the stars for me to lose weight. I lost 30 pounds eight years ago when the stars were in alignment. They were in alignment again three weeks ago. I’ve started to lose the same 30 pounds again.
I’ve questioned my primary care doc about taking cholesterol-lowering meds. She wants me to take them. I’m not so sure. The evidence appears pretty clear. I’ve been taking them for nine years because I trust her. Now with Medicare, they’re going to cost me more. It has me thinking again. I still trust her. I’ve stopped taking them.
I trusted my doctors for twenty-five years as they worked me up, over and over, for cardiac issues. Now I know I have multiple sclerosis, not heart disease. I’m a trusting fellow until I’m not.
A friend of mine had breast cancer. She asked her doctors, “Should I take chemo?” They all said yes. She trusted that they wanted the best for her, but wondered where their trust in that advice came from? Was their research current, reliable, and apply to her as an individual? She did the chemo.
Webster says, Trust = you can rely on the integrity, strength, or ability of a person or thing. Trust is respect + communication + context. Making choices about your health in a bed of trust is hard enough. Making choices in the swamp of distrust can be crazy making.
As a person, I try to build trust – in relationships. It starts with being trustworthy. I feel better in that bed of trust. Still, trust in myself, ourselves, is key. Ultimately, it’s our lives. We face the consequences of our decisions. I’m greatly relieved that I trust I can adjust and make a different choice if the one I made didn’t work out. Trust.
Imagine sitting down with your patient and care partner to find them prepared to choose a treatment that works for them.
Imagine that they know their life priorities and their life challenges and can and will communicate them to you.
Imagine that you have a key to the Tower of Babel and can communicate with anyone.
Imagine that you have the latest research at your fingertips so you can have informed conversations with your patient.
Imagine that they understand that recommended treatments might work. It’s an experiment based on pretty good research, your clinical experience and training, and your sensitivity to them.
Imagine that you all accept the uncertainty of evidence and of life.
Imagine that they trust you.
Imagine that you have all the time you need together with no distractions for you or them.
Imagine that your practice runs so efficiently and effectively that most of your face time with patients is spent in relationship building, exam, and problem-solving.
Imagine that by spending a few minutes together, you can to input assessment and exam and their data seamlessly into their electronic medical record (EHR).
Imagine that they can and do submit corrections to the data in their records and that those corrections can be reviewed and entered quickly.
Imagine that it’s easy to track in the EHR how well the actions taken to treat actually worked over time using your entries and their entries.
Imagine that the recommendations chosen automatically populate a personal care plan for your patient along with all the other choices you made together about treatment and self-care.
Imagine that they will follow the plan, track progress, and let you know when they don’t and why.
Imagine that the up-to-date treatment plan and tracker is shareable in real time with anyone the patient chooses using any EHR or health app.
Patient and Care Partner
Imagine that you have all the information you need to make decisions about your medical treatment including the cost of those choices.
Imagine that the information can be shared with your family, friends, and advisors so you are prepared to advocate for yourself and make decisions with your doctor.
Imagine that you can talk about your life’s goals and challenges and that your doctor can hear you.
Imagine that all health professionals realize that they are guests in your life.
Imagine that you have time to talk and share with your doctor without distractions.
Imagine that your doctor trusts you to be the expert about you.
Imagine that your doctor helps you understand research and how it applies to you.
Imagine that you have a care partner who goes to doctor visits with you, listens and advocates for you.
Imagine that your health and wellness choices and plans can be found in your EHR.
Imagine that you can correct and update your health data and track your progress in your EHR.
Imagine you have one up-to-date EHR for all settings and providers and you control who has access to it.
Imagine that you have access to medical advice and can get questions answered when you need it, in a manner that you can digest.
Imagine that if you try something and it doesn’t work, you can adjust quickly with your health team to try something else.