Integrative Medicine to Address Chronic Pain

Listen with empathy, and use a team approach to assess and address an individual’s pain. Physical medicine, nutrition, acupuncture, healing touch, chiropractic, biofeedback, etc. It’s not necessary for physicians to have all the answers. Use a holistic team approach to help the patient.

kevinmd.com

Medical students need exposure to chronic pain patients
Sarah Cohen | Education | September 27, 2016

Pain. It permeates every aspect of medicine, crawls into the deepest corners of our practices, sinks its claws in and stays put. Opiates are at the center of a vicious national debate, and our patients are trapped in its clutches. But my thoughts are less on medications, protocols, and procedures and more on how we approach the patient who cries pain. Through everything I have observed, as a caretaker and student physician, I have come to a concerning conclusion: The burden is on the patient to prove his or her pain.

A patient recently repeated a remark made by her previous doctor, who had declared she was not in “that much” pain. My patient’s response was simple: “How do they know how much pain I am in? Only I know how much pain I am in!”

She was right. When a patient has any sort of pain, our question is always, “On a scale of one to ten, how bad is it?” They answer, and we immediately judge whether the number fits the presentation. Does the patient really look like an eight out of ten? Are they writhing in enough pain to satisfy us?

This is a ridiculous routine. Do not ask and then ignore what they say. Obviously, clinical judgment is an indispensable tool, so if a patient comes in with 10/10 pain but they are resting at ease on the emergency room stretcher, you can likely delay the exploratory laparotomy. But consider assessing their pain in context.

I recently saw a young lady who called her abdominal pain 10/10, but was interacting pleasantly, with no grimacing nor guarding, and only occasionally rubbing her right flank and flinching when the pain periodically recurred. On further exploration, she had never in her life experienced any significant pain – not even a sprained ankle for comparison. For her, this was the worst pain she could imagine.

Conversely, the judgment that follows mention of 12/10 pain is always the same: “There is no twelve,” we say out in the hallway, “they are just being dramatic.” But if we already ignore 8/10 pain, it follows that a patient may declare twelve out of ten pain to get our attention.

My sister demonstrates a useful paradigm. She is in chronic, bone-deep pain at all times. Her joints ache, her muscles spasm, her head pounds… daily. She suffers from Ehlers-Danlos syndrome and is in constant agony, but was blessed with a spirit that keeps her motivated and enables her to present a deceptively happy face. When she submits to going to the emergency room, we know she must be in unimaginable pain: pain bad enough that it is worth the mistreatment she will endure. Why? Because she internalizes her agony and thus she does not fit the stereotypical picture of a person in pain. So doctors write her off as exaggerating when she quietly uses her words. She does not appear worthy of their time.

I recently cared for a cranky elderly patient who had been reporting pain for days. At first, every question was met with a glare and a growl, but I was determined to be thorough and tried my hardest to coax out the quality of the pain. After several days of this, we had a breakthrough: the patient began to cry while describing shooting, burning pain, plus aches and cramps that made physical therapy too daunting. I returned to my chief and asked to change the patient’s orders: in addition to the typical opiates, I added gabapentin for neuropathic pain, muscle relaxants and heating pads for the cramps, and a B12 titer to address the paresthesias and fissures at the corners of my patient’s mouth. Impressed with my initiative, the chief agreed. When I arrived the next day, the labs showed a B12 level just below normal limits; I had been right. I went to see the patient and was met with a hesitant smile. The new regimen was beginning to work.

“That is what is missing in medicine these days,” my patient explained, “no one takes the time to listen, and no one took my pain seriously, until you did.”

So what is the “right” kind of pain? I once witnessed a resident describing an ER patient with pelvic pain as “actually not that crazy looking,” as if her presentation automatically implied mental instability. When my team told her the “good news,” that she could go home because we had not found any pathology, the patient, with a tortured expression, I will never forget, explained that it was not good news because we had not given her any help, any answers, or any hope. I trailed after my team as they left the room, embarrassed to be associated with them.

These attitudes are not universal, although it can feel that way to the patient. I strive to emulate physicians who approach patients with respect and an open mind. One such attending once explained how everyone has his or her own way of coping. “Some patients shout about it, some get very quiet, others look distracted, and still others joke about it, so you cannot take anything at face value.” It was some of the most important advice I ever received.

The best-case scenario is when pain has an obvious source and will resolve naturally, as with fractures and post-operative pain. But when patients start to complain disproportionately, or when no clear cause exists, we start to write the patient off in our minds. We run our battery of tests, while rolling our eyes.

What is it about pain that makes us want to judge patients, accuse them, and abandon them? Why do we go into medicine and then find ourselves surprised when our patients report pain? Pain is the body’s way of telling us that something is amiss, even if it is the pain receptors themselves! This does not mean such pain is a figment of the patient’s imagination, and it does not mean everyone must react identically. There is no available method to compare pain, and yet we still try to do so, because nuance is too hard to document, and too scary to treat. We do not understand pain well enough to treat it adequately, and we have no way of quantifying it other than asking “well, is it really bad? Or really bad? Or just … bad?”

I believe the solution starts at the foundation, as soon as we begin medical school. We need exposure to these patients, to understand what we are facing, so we are not surprised when we reach intern year. We must hear their stories, of mistreatment and misjudgment. Treatments are limited and outcomes are often poor; thus, our burden is enormous. We must stop the cycle, and we must remove the burden of “being believed” from the patient. We are the providers, and it is time to change how we understand and treat pain.

Sarah Cohen is a medical student.

 

Patient Information Tools for Healthcare Coordination

This is a national discussion that needs to happen! In my advocacy business I gather a detailed health history and review medical records. I put the information on a thumb drive for my patient-clients to carry with them. Providers appreciate this as it offers a medical history, current list of medications, specialist referrals, critical labs/procedures, advanced care instructions, and more.

Perhaps a Novel Idea to Assist Care Coordination

The United States has some of the best healthcare systems, minds, and clinicians in the world.

Great bio-informatics and healthcare innovations and technologies spawn daily to assist with patient care, continuity of care (or care coordination) and research across multiple divides in efforts to provide better care and outcomes for patients. But they are strained by one major thing, a true universal patient identifier.

The U.S just hasn’t adopted or progressed in this area as well as others. It’s no fault that other countries have ameliorate methods for care coordination. It’s actually pretty simple.

The European Union (EU) along with other participating countries offers their citizens a European Health Card. This identifier along with its shared data is utilized across multiple systems, clinicians and even countries.

If an unknown or unconscious patient gets in a car wreck in the EU the medics can swipe this card which holds all the patient’s demographic and up-to-date health information. They know the patient’s history, disease & medication list, advance directives, et cetera, right on the spot. They can even transmit or transfer that patient information along with any treatments given at the scene right into the accepting hospital’s system while in route. From there the continuity of care just continues on and improves.

Maybe it’s been here all along, circa 1935 to be precise. The Social Security number?

 

 

End of Life Discussions with Healthcare Providers

Scheduling a specific appointment to discuss EOL issues is excellent advice.  It offers everyone an opportunity to take a deep breath and recognize there will be a very important conversation about to happen.  If more people did this, insurance companies (and all of us!) would see how critical it is to offer community programs for discussion, and how everyone over the age of 18 should be encouraged to complete an advanced care document.  Agingwithdignity.org and theconversationproject.org are both excellent resources.
huffingtonpost.com

How To Talk To Your Health Care Provider About Your End-Of-Life Wishes

Follow Karen M. Wyatt, M.D. on Twitter: www.twitter.com/@spiritualmd

2016-09-06-1473179730-4046963-womandoctor.jpg

One of the most important conversations you will ever have—and also the most difficult—is to share your thoughts and feelings about the end of your life. The people closest to you need to know what you want for your last days so that they can advocate for your wishes, if you, for any reason, are unable to speak for yourself.

This conversation could help you avoid being kept alive for months on a ventilator with a brain that no longer functions. Your loved ones will only be able to protect you from excessive futile medical care if they know that this is your preference.

Read more here about having an end-of-life discussion with your family and friends.

But talking with your personal health care professional about your feelings and wishes is also essential. Your provider may be part of the medical decision-making team at the end of your life and will know, in alignment with your loved ones, what choices you would make for yourself. In addition, your medical practitioner can offer you valuable advice about your current state of health and the tough decisions you may need to face in the future.

While every care provider should be prepared to engage in end-of-life conversations with patients, your practitioner may or may not be comfortable with the subject matter. But it is important that you pursue the discussion and insist on receiving answers to your questions, because this step is crucial for the future wellbeing of your family and you. In addition, you can help bring about change in the medical system’s approach to the end of life by becoming a champion for advance care planning. Here are some tips for taking responsibility for your own end-of-life wishes and engaging in the conversation with your health care provider:

1. Don’t wait for your provider to bring it up.

You will most likely need to initiate this end-of-life discussion. Even though there is a current movement to encourage doctors to have these conversations by providing Medicare payment, studies have shown that only about 14% of physicians are engaging in advance care planning discussions with their patients. So your care provider might be one of those who are reluctant to start the process.

Be prepared to speak up, loud and clear, about the importance of this subject to you.

Read more about why doctors struggle with the end of life.

2. Schedule a dedicated appointment for the conversation.

Medical office visits for chronic health issues tend to be filled with many necessary tasks like arranging for lab tests, prescription renewals, and specialty referrals. Your doctor is likely to feel too rushed to have this important discussion in the middle of managing your hypertension or other health concern. Your annual physical exam appointment is also not a good time to introduce the subject of end-of-life planning because the provider should stay focused on your current state of health and will probably already feel pressured to cover all the important components of the wellness visit.

So, to allow enough time for a more relaxed discussion, you should schedule a separate visit, tell the receptionist that it is for advance care planning, and ask for at least a 30-minute appointment. It may be necessary to reinforce that you have some important health-related issues to discuss with your provider.

3. Be prepared.

Your visit with your health care provider will be much more productive and gratifying if you have prepared in advance. Spend some time learning about the options available at the end-of-life and thinking about your own preferences.

The Conversation Starter Kit (available at theconversationproject.org) is a great place to begin. Download and print the free kit and complete it before your appointment. You can also sign up for The SMART Decisions Challenge, a free step-by-step program to guide you through completing your advance directives. Learn more about it here.

4. Choose your health care proxy.

Decided in advance who you would want to speak on your behalf if you are unable to express your own wishes. Remember to choose someone who will be able to handle that responsibility emotionally and who also will be able to agree with your choices. Talk with that person and make sure they are willing to fulfill this role before your appointment. Also be prepared to name two people as alternates.

5. Print your paperwork in advance.

Your state of residence will have specific forms you will need to complete, usually called the Living Will and the Health care Proxy form (or Durable Medical Power of Attorney), though your state may use different terminology. This is the official paperwork your provider will help you complete, so you can save a lot of time if you bring it with you to your appointment.

You can download and print the advance directive forms for your state at caringinfo.org. Note that you will need separate forms for each state in which you reside during the year.

6. Bring a list of your questions.

As you review the advance directive forms and the Conversation Starter Kit, write down any questions that come up for you. During the appointment with your provider it will be difficult to remember all of the issues that occurred to you before so having them listed will be very helpful. Ask about your own health status and what you can expect in the future. You also might have questions about some of the terms used in your advance directive forms, like mechanical ventilation, artificial nutrition and CPR.

7. Schedule a follow-up visit if necessary.

These are complex conversations to have and difficult decisions to make so don’t hesitate to return to your provider’s office for more discussion. It’s important that your wishes be clarified and understood so take all the time you need to accomplish that. Also it is recommended that you revisit your choices and update your paperwork every 5 years or whenever your health status changes.

Planning ahead for the end of life is an ongoing process rather than a one-time task, so be prepared to have multiple conversations in the future. For now, the most important step is simply to get started: complete the Conversation Starter Kit or the SMART Decisions Challenge, record your thoughts and wishes, and schedule a time to talk with everyone who needs to be informed of your choices.

People who have completed their advance directives say they feel more at peace and comfortable about the future. Get your own planning started now so that you too can rest easy and live your life with less fear.

Dr. Karen Wyatt is a hospice and family physician who writes extensively on spirituality and medicine, especially at the end-of-life. She is the author of “The Tao of Death” and the award-winning book “What Really Matters: 7 Lessons for Living from the Stories of the Dying.” Connect with her at karenwyattmd.com, on Facebook at fb.com/WhatReallyMattersWithKarenWyatt and on Twitter @spiritualmd

This post is part of Common Grief, a Healthy Living editorial initiative. Grief is an inevitable part of life, but that doesn’t make navigating it any easier. The deep sorrow that accompanies the death of a loved one, the end of a marriage or even moving far away from home, is real. But while grief is universal, we all grieve differently. So we started Common Grief to help learn from each other. Let’s talk about living with loss. If you have a story you’d like to share, email us at strongertogether@huffingtonpost.com.

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Transforming Healthcare with an Integrated Practice Model

      The Institute of Medicine’s To Err is Human came out in 2000, estimating that we are killing over 100,000 people a year with the way we practice medicine in the U.S.   An updated September, 2013 study in the Journal of Patient Safety reveals that each year preventable adverse events (PAEs) now lead to the death of 210,000-400,000 patients who seek care at a hospital. Those figures would make medical errors the 3rd leading cause of death behind heart disease and cancer, according to Centers for Disease Control and Prevention statistics.

One direction of correction we need to pursue is to get out of our respective silos, and learn to communicate and collaborate.  PAE’s harm, waste and deaths are linked to a long history of top-down, abusive relationships among the professions, fighting between doctors and nurses, and various other wars within organizations that oddly tout patient care as their number one priority.

It would seem that “healthcare” would be better achieved if an integrated plan were used.  Exit the silos, learn about other disciplines, “cross-pollinate” the information for the best of service delivery, and empower the patient in the process.  Sounds like a perfect opportunity for team building and leadership, doesn’t it?

Many studies have shown that people like people-centric, relationship-centered, hands-on disciplines.  Since we know that 45 to 85 percent of people with chronic conditions explore one or more forms of “alternative medicine”, then the only way to be patient-centered in healthcare delivery is to include on the teams the practitioners who are experts in those areas.

The problem with this approach to team-building is that business likes the margin on products that are more expensive.  Medical business favors sick people over well people, and tertiary care provides the highest margins.  So why would they want to extract the most value to health out of a chiropractic adjustment, a therapeutic nutrition consult, an acupuncture treatment, or an hour spent in assisting behavior change?…..especially if the outcome would keep people from needing the high-ticket interventions on which their business model is based.  Healthy, empowered people are the antithesis to medicine’s profit centers.

The good news is that the bad news is causing a rumbling about the meaning of health, how individuals might be coached to self-empowerment and well-being, and the transformative cultural shift that has begun to affect healthcare delivery.  These outcomes are emerging in policy discussions, federal health law, and organizational practices.

Using the IOM’s Triple Aim of values over profits (better patient experience, enhance population health, and lower per-capita cost), we are entering an era where health systems might actually get paid to keep people healthy!  The Affordable Care Act has vastly increased the recognition of licensed integrated practice fields such as acupuncture and chiropractic.  There are sections within this law that clearly stipulate non-discrimination in reimbursement, research, health promotion and prevention, work force development, and delivery models such as Patient Centered Medical Homes.  All of this is creating a patient-centered, team-based, health-focused, community-oriented future for medicine.

In order to continue the momentum of this movement, we’ll need to learn and practice the roles of leader, “change agent”, advocate, navigator…..any position that puts a premium on communication and collaboration.

To quote John Weeks at the 2013 NYCC commencement address:  “Go out and create relationships.  Populate that picture of you with at least one of every other type of practitioner or service provider that may at some time be useful to a patient.  Create your own circle of care of medical specialists, nurses, other integrative health providers, addiction services, and farmers markets.  Stop the cycle of self-inflation and polarization that are bred by silos of education and practice.  Continuously invest in these relationships even as you consult and refer unto others as you would have them consult and refer with you”.

The time has come us to put on our big person pants and do things differently.  We must grow with the movement in health and medicine toward respecting the whole person, putting the patient at the center, focusing on health, and teaming with others.

Stephanie Frederick, M.Ed., RN is an Integrated Health consultant, independent RN Patient Advocate, and Medical Improv trainer (Improv to Improve Healthcare!).  Visit her website for a description of services and contact information @  www.stephaniefrederick.com

 

 

Higher Readmission and Death Rates When Unstable at Discharge

Many of the patients I advocate for, and navigate the medical system, were discharged in an unstable condition.  There is an overwhelming need for development and implementation of national hospital discharge guidelines to prevent medical errors and improve patient safety.

utsouthwestern.edu

1 in 5 are discharged from hospital with unstable vital signs, and experience higher readmission and death rates: August 2016 News Releases

Dr. Oanh Nguyen (left), Dr. Anil Makam (center), and Dr. Ethan A. Halm (right) of UT Southwestern’s Center for Patient-Centered Outcomes Research.

Dr. Oanh Nguyen (left), Dr. Anil Makam (center), and Dr. Ethan A. Halm (right) of UT Southwestern’s Center for Patient-Centered Outcomes Research.

DALLAS – August 9, 2016 – Twenty percent of people hospitalized are released before all vital signs are stable, a pattern that is associated with an increased risk of death and hospital readmission, a new study by UT Southwestern Medical Center researchers shows.

As hospital stays have shortened dramatically over the past 30 years, there is increasing concern that patients are being discharged before all vital signs have stabilized, putting them at risk of adverse events after discharge. However, no studies to date have examined the extent to which patients are discharged with unstable vital signs, and whether this practice is actually associated with higher post-discharge mortality and readmission rates, the researchers said.

“We found that nearly 1 in 5 hospitalized adults is discharged with one or more vital sign instabilities such as an elevated heart rate or low blood pressure,” said lead author, Dr. Oanh Nguyen, Assistant Professor of Internal Medicine and Clinical Sciences. “This finding is an important patient safety issue because patients who had vital sign abnormalities on the day of discharge had higher rates of hospital readmission and death within 30 days even after adjusting for many other risk factors.”

The researchers assessed electronic medical records (EMR) of 32,835 unique individuals from six Dallas-Fort Worth area hospitals, and noted abnormalities in temperature, heart rate, blood pressure, respiratory rate, and oxygen saturation within 24 hours of discharge. Nearly 20 percent had one or more abnormalities, with elevated heart rate being the most common vital sign instability (affecting about 10 percent). About 13 percent were readmitted or died, and individuals with three or more instabilities had a nearly four-fold increase in the odds of death.

“Our findings, that ‘vital signs are still vital’ have important implications for the development of national discharge guidelines to improve patient safety for the 35 million individuals being discharged from hospitals in the U.S. annually,” said co-lead author, Dr. Anil Makam, Assistant Professor of Internal Medicine and Clinical Sciences.

“At a time when people are developing complicated, black box computerized algorithms to identify patients at high risk of readmission, our study highlights that the stability of vital signs, something doctors review with their own eyes every day, is a simple, clinically objective means of assessing readiness and safety for discharge. There’s a good reason we call them vital signs,” said senior author Dr. Ethan A. Halm, Chief of the William T. and Gay F. Solomon Division of General Internal Medicine, Chief of the Division of Outcomes and Health Services Research in the Department of Clinical Sciences at UT Southwestern, and Director of UT Southwestern’s Center for Patient-Centered Outcomes Research. “It is important for clinicians to look at all of the vital signs in the 24 hours prior to discharge and not just the last set or the best ones in judging a patient’s readiness for discharge.”

Researchers concluded that:

  • Discharge guidelines should include objective vital sign criteria for judging stability on discharge to improve disposition planning and post-discharge patient safety.
  • At a minimum, patients with one instability on discharge should be discharged with caution.
  • Close outpatient follow-up and appropriate patient education about warning signs and symptoms that merit urgent medical attention may be warranted.
  • Individuals with two or more instabilities should likely remain in the hospital for continued treatment and observation in the absence of extenuating circumstances.
  • Though post-acute care facilities are frequent sites of post-discharge care for those discharged with vital sign instabilities, patients sent to these facilities had still higher rates of readmission and death, suggesting that an alternate site of discharge may have been more appropriate for a significant subset of these individuals.

Other researchers included Dr. Song Zhang, Associate Professor of Clinical Sciences; and researchers from Parkland Health & Hospital System, the Parkland Center for Clinical Innovation (PCCI), and Texas Health Resources.

The study, which appears in the Journal of General Internal Medicine, was supported by grant funding from the Agency for Healthcare Research and Quality, the UT Southwestern Center for Patient-Centered Outcomes Research, the National Institutes of Health, the Commonwealth Foundation, and the UT Southwestern KL2 Scholars Program.

The UT Southwestern Center for Patient-Centered Outcomes Research, led by Dr. Halm, Professor of Internal Medicine and Clinical Sciences, who holds the Walter Family Distinguished Chair in Internal Medicine in Honor of Albert D. Roberts, M.D., is supported by a $5 million grant from the federal Agency for Healthcare Research and Quality and seeks to assess the benefits and harms of different preventive, diagnostic, therapeutic, and health delivery system interventions to inform decision-making, highlighting comparisons and outcomes that matter to people.

The Center works in conjunction with UT Southwestern’s Center for Translational Medicine, part of a $28.6 million grant from the NIH to promote rapid translation of basic laboratory findings into patient care. The Center is a member of a national Clinical and Translational Science Award Consortium that includes more than 60 medical research institutions.

About UT Southwestern Medical Center
UT Southwestern, one of the premier academic medical centers in the nation, integrates pioneering biomedical research with exceptional clinical care and education. The institution’s faculty includes many distinguished members, including six who have been awarded Nobel Prizes since 1985. The faculty of almost 2,800 is responsible for groundbreaking medical advances and is committed to translating science-driven research quickly to new clinical treatments. UT Southwestern physicians provide medical care in about 80 specialties to more than 100,000 hospitalized patients and oversee approximately 2.2 million outpatient visits a year.

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Media Contact: Cathy Frisinger
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How Patient Advocates Can Help You and Your Loved Ones

“Patient Advocates” are not certified, and the field is not (yet) regulated.  As an independent RN Patient Advocate for the last 6+ yrs, I help individuals with a variety of needs…researching conditions, guiding them to available options, navigating the medical system, encouraging family/physician communication, etc.  Helping patient-clients achieve their highest level of health and well-being is a much needed and rewarding process to advocate for. 

http://www.nytimes.com/2016/08/20/business/patient-advocates-help-navigate-health-care.html?_r=0

nytimes.com

Patient Advocates Help Navigate Health Care

by Constance Gustke

Moreover, despite efforts to rein in costs, the system is still driven by a pay for service model, which encourages excessive procedures and inflates prices, she added. “We’ve been sold a false model, like having too much imaging,” Ms. McGiffert said.

Finding an effective patient advocate isn’t easy. Currently, there is no certification, and anyone can qualify. Courses are being offered at over 30 universities and colleges, but there are no common guidelines. As a starting point, Ms. Torrey said, patients should ask potential advocates whether they have handled similar cases.

Elsa Newmyer taking stock of the medications she needs every day. Andrew Mangum for The New York Times

Ms. McGiffert agreed, suggesting that patients should ask for referrals from at least three previous clients. She also encouraged choosing someone without a stake in the system. “A patient advocate hired by a hospital or health plan probably won’t be the best person,” she said.

Advocates can be costly, which makes selecting a good professional even more important. The hourly rate ranges from $100 to $450, especially as more doctors come into the field and more research is required to determine the value of emerging treatments.

“Specialty illnesses take some real digging,” said Elisabeth Schuler Russell, founder and president of Patient Navigator. The firm, which charges $150 an hour, scours academic literature and reviews drug trials to uncover more information, among other tasks.

Ms. Schuler Russell, a former foreign service officer, taught herself to navigate the medical system when her daughter was diagnosed with an inoperable brain tumor. “There’s no guidebook or lifeline,” she said.

In the case of Ms. Newmyer, Patient Navigator’s advocates also helped her find a doctor at the Cleveland Clinic to handle a rare illness that threatened her life as well as a good local gastrointestinal doctor and nutritionist. They even attended internist appointments with her.

“Patients can focus on their own healing,” Ms. Schuler Russell said. “We save them stress, time and money.”

Jane Morrison, 67, had a good experience working with a patient advocate when she was employed by IBM. So Ms. Morrison, who lives alone and is housebound, turned to a patient advocate again when medical bills began piling up.

“My advocate has saved me thousands of dollars,” said Ms. Morrison, who lives in Roswell, Ga. Her advocate also helped her sign up for Social Security and hire a more trustworthy caregiver. “She has connected me to resources, and checked in to see if my nursing care is going well,” she added. “When you’re ill, you’re not up to embracing details.”

Many patients find it hard to negotiate for themselves. “They have more traditional, accepting patient roles,” said Judith Hibbard, a professor of health policy at the University of Oregon. “Advocates can help in a number of ways.”

Dozens of medical bills, some 30 pages long, began piling up after Elsa Newmyer had surgery last year and spent months in a hospital bed afterward. Andrew Mangum for The New York Times

Some doctors, seeking to challenge the increasing bureaucratization of health care, have changed roles. “Part of medicine was being pushed out by insurance companies,” said Dr. Annette Ticoras, who became a patient advocate two years ago. “I knew I had to do something.”

Dr. Ticoras, who charges $200 an hour, now helps people understand complex medical explanations, especially ones for complicated diagnoses. She also accompanies people to hospitals, books medical appointments and researches the best doctor for rare diseases or clinical drug trials.

Families can be effective advocates, she said, but they are not always experienced. And as patients’ medical options multiply, choices can be more difficult, said Dr. Ticoras, who lives in Columbus, Ohio.

“Patients are demanding full disclosure of their options,” she said. “Previously, you were instructed by the doctor.”

Kathy Schmidt, 59, started working with Dr. Ticoras a year ago. Mrs. Schmidt had been sick for over eight years, and bedridden most of that time. “When I called a doctor, I got the runaround for weeks,” Mrs. Schmidt said. She said she endured surgeries she didn’t need. “I needed someone who was an expert and could work through the medical jargon.”

With her permission, Dr. Ticoras talked directly to Mrs. Schmidt’s doctors. As a result, Mrs. Schmidt ended up having a final surgery that solved her health problem.

For people with chronic illnesses, advocates can be particularly helpful. Ms. McGiffert said. Another reason to hire outside help is when you are being pressured by insurance coverage. “But if you have a good health plan, you might not need one,” she said.

With digital processing of medical bills, it is now possible to have them analyzed online. Using crowdsourced data, the patient advocacy site Copatient lets consumers upload their bills for review, get a free report, and then opt to use an advocate to negotiate savings. Copatient receives a share of the savings.

More than 20,000 patients have registered for Copatient, which began three years ago.

“Many consumers aren’t aware that you can negotiate bills,” said Rebecca Palm, co-founder of Copatient. “So we do a lot of work to educate the market.”

Ms. Newmyer has regained her pre-surgery health and is out and about in the world again. “I’m profoundly grateful,” she said.