Everyone Needs a Healthcare Advocate
It took me a few moments to realize what was happening in the first floor bathroom of the Children’s’ Hospital. A very exasperated Mother was having a one-way conversation with her son who was behind a locked stall door. She was pleading with him to come out so he would not be late for his appointment at the clinic. His only answer: “I have to go. Now.” In frustration, she asked me if I would watch her son while she went to tell the clinic that he would be late for his tests–again. She exited the door, and all was suddenly very quiet in the bathroom.
Feeling the way carefully, I said “I bet you don’t like going for tests at the clinic”. There was a long pause. Then a small voice said “I don’t know what they’re going to do and I don’t know if it will hurt”. Choosing my words carefully, I said “you know—those are really good questions to ask. You’ve been thinking about this for a while, I can see. The very best people to answer those questions are the doctor and nurse at the clinic and your Mom. I do know you can’t get answers if you stay in here. Would you come out so you can get those questions answered?”
A very long pause, with no sound, and then the sound of the lock clicking as he opened the door and came out. He was small, very thin, and very scared. “Will you tell my Mom?” he asked. “Will you tell her the questions?” “We will tell her together” I replied.
At that moment, his Mom returned from the clinic. She looked from him to me in astonishment. “What did you do?” she asked. “I couldn’t get him to come out.” I told her about our conversation as we all walked to the elevator. I knelt down and looked at him and the worry lines on his face. “You have very good questions: keep asking them” I said. “Tell you Mom, the doctor and the nurse your questions; that way you’ll be sure to get them answered.”
I did not understand, years ago, when I encountered this little boy that he would open my eyes to a simple concept: everyone needs a healthcare advocate. No matter what the situation, there are times when whatever is going to happen medically seems too overwhelming, too scary and too filled with questions. At that time, people—children and adults—need someone by their side to help make sure they understand what is happening, the choices and medical decisions to make or the incomprehensible hospital bill or insurance papers. Frequently a family needs someone to help them grapple with a life-threatening illness. This is the world of healthcare advocacy.
I began my practice in 2005, offering services to people of all ages. A family with a child newly diagnosed with juvenile rheumatoid arthritis; a 40-year old considering treatments for MS; a senior try to live out her life at home rather than in assisted living. The complexities of in-patient and out-patient care were the situations my clients came to me for help with. I worked with diverse populations: most people could pay for services, some I worked with pro-bono. A number of families from out-of-state contacted me to work with their family member who was in-state and on Medi-Cal.
Everyone wanted someone who could follow them or their family member everywhere they went, in-patient and out-patient, and make sure that the treatment plans made sense and their wishes were being followed. This is exactly where we are today: everyone who hears about the services of a Healthcare Advocate wants to work with one because medicine is so complex and will not be getting any easier in the future. Treatment decisions are more complicated; insurance is more baffling; communication within the world of healthcare is often more fragmented, even with electronic medical records, and uncoordinated. Most people still do not understand that their primary care physician will not follow them into the hospital if they need that level of care. Healthcare Advocates provide the “Three Cs”: consistency, continuity and collaboration. And these days, those “three Cs” are the keys to receiving the best care possible in medicine.
A New Twist on Advance Directives
I heard a story the other day from a colleague about a situation that is occurring more frequently as the population ages, and some people are trying to manage living alone and staying in their own homes.
In this particular case, an elderly woman, who lived alone and had no living family members caring for her, was being admitted to the hospital for surgery. At the admitting office, the hospital employee asked, as is required by federal law, if the woman had an Advance Directive (which names an agent to make healthcare decisions on her behalf if she is unable to). The woman said she did not. What is supposed to happen next is the hospital employee is directed to ask if the woman would like to speak to someone about filling one out.
What happened instead was the hospital employee offered to become the agent for the woman and complete the directive right then. The woman gratefully accepted. She was in a vulnerable position, and someone offered to help her: why would she refuse the help?
Because it is a clear violation of federal law, and is a version of elder abuse—both legal, emotional and physical. After the woman had her surgery, her agent—the employee of the hospital– approved placement in a nursing home. The woman stated that she wanted to return home, but the agent would not authorize it. She visited regularly, and the woman became quite attached to her. When a distant nephew questioned the relationship, his aunt became extremely upset and told him to “stay out of it”.
Why is this wrong? Hospital employees may not be agents on someone’s advance directive (unless they are already related) because it is a conflict of interest, and federal law prohibits it. In addition, this is victimization of an elder who is vulnerable. In this situation, a single, elderly woman with no known support system agreed to have an unknown person assume the responsibilities of making the most fundamental healthcare decisions for her. It also appears that this hospital employee may have obtained control of the woman’s checkbook and financial affairs.
What can you do if you see or hear of this kind of situation? There are several approaches. Some people are mandated reporters—physicians and social workers, for example. If they SUSPECT elder abuse, they need to report: they do not need to have proof, they only need to suspect in order to report. But other people can still report, even if they are not required to and they, also, do not need to have proof, they only need to suspect. In your county or city, you can report, depending on local regulations, to the Adult Protective Services agency or the local police.
There is another way to address this, however, and that would be to call the Risk Management Department at the hospital. That department is charged with reducing the hospital’s exposure to law suit, but they also can address the issue directly with an employee who is violating the law. While Risk Management will not tell you the outcome, you can be assured that they are interested in protecting themselves from suit and will address the issue. It’s best to report to both: Adult Protective Services and the Hospital.
Insights on Pain
I was reading a post at the Center for Advancing Health (www.cfah.org) on Chronic Pain that a colleague had posted on LinkedIn. Because chronic pain is a frequent reason that clients contact Healthcare Liaison, I read with special interest a quote from Dr. Paul Christo, director of the multidisciplinary pain fellowship program at Johns Hopkins School of Medicine. He is discussing the frequent referrals that people receive at pain management clinics for psychotherapy:
Dr. Christo: “A lot of people have the misconception that what I’m telling them [when recommending therapy] is that their pain is a figment of their imagination. That’s not what we mean. Pain has such an emotional component and psychotherapy is extremely useful in terms of helping patients reorganize and rethink how they interpret it and how it affects their lives.”
One of the most frequent comments I hear from clients with chronic pain IS “they told me it was all in my head”. It seems that the dialogue between consumer and provider about pain is frequently a “mismatch”: the provider thinks he or she is communicating one view, and the consumer, defensive from experience with healthcare systems, hears a much different version. These are times when it is most helpful to have another person in the room, monitoring the conversation so the communication can be corrected at that moment, rather than leading to even more pain–emotional and physical and delayed help–in the future.
Another very frequent comment from families, particularly families coping with end-of-life issues for a relative, is “I don’t want them to have too much medication and become addicted”. I have always wondered about that comment: it’s not that people want their family member to die unaddicted but in pain, they simply haven’t considered what that statement means in end-of-life care. Strong pain medication–like opioids– (e.g. Oxycontin) do carry a risk of addiction, but with people at the end of life, addiction is less of an issues and pain management is the main issue.
In a review of studies on pain management, Cochrane Review (Cochrane Reviews investigate the effects of interventions for prevention, treatment and rehabilitation in a healthcare setting.) found that: “for people without a prior history of addiction, (italics added) less than 3% of patients who take opioids regularly for pain will become addicted to the drugs. That means almost everyone without a history of addiction could reasonably talk with a healthcare provider about opioids for relief of pain: addiction is not really the issue. what IS of importance, especially at end-of-life, is management of pain so people can complete what they need to before they die. This may mean giving them pain-free time to talk with family, sit up in a chair, eat a favorite food or enjoy music. Good pain management improves the quality of life for those remaining days, months and years and is a necessary part of a comprehensive plan for anyone.
Hospital Mysteries
The father on the phone was obviously in distress. His daughter, now 15 months old, had spent the major part of the last year in a pediatric hospital. His child, he said, had trouble breathing and needed suctioning every 15 minutes, but the hospital was saying she was ready to be discharged. “How can this be?” this perplexed father asked.
This is not an unfamiliar story: how and why things happen in a hospital is a mystery to many families, no matter what age their family member is. What are some strategies we all can use to make transitions to and from various settings easier?
- Core Strategy: Begin planning for discharge the day of admission. The moment someone enters the hospital we have to think about the discharge plan. Too many times patients say, “I never met this person before, and she/he came in one morning and said I was going home that afternoon.” Some of the most difficult discharge planning scenarios occurs because the process is too abrupt and patients and families get scared. If a patient looks “low priority” on admission, that does not mean we can wait to “get to them” until the day they are discharged. Much of the resistance we encounter at discharge might disappear if we did a brief introduction the day of admission.
- Core Strategy: Think “out of the box” about communication with patients and families. So many misunderstandings that happen during the hospital stay occur because families do not understood what is happening. In extremely complex medical situations the norm is to communicate through team meetings with the family, but this may not be the most effective way to work with them. Families frequently call me for help after just such a meeting. “There were all these people in the room”, they say, “and we couldn’t remember what they all do and they were trying to tell us how things were going and we couldn’t understand them.” In any large system, a family will have certain providers they seem to talk with more easily. Instead of “Team Meetings” with all the players there, what if we called them “Family Updates” and just one member of the team met with the family? After all, we frequently say to families, “Pick one person in your family as the point person,” because we know it is a more effective communication system. The same is true for families: it is more effective for them (and much less intimidating) if they talk with just one team member so they are not overwhelmed: they need a “point person” on the medical team. In some cases, this “point person” may not be a physician: it may well be another member of the healthcare team. We need to be flexible in the way we communicate information.
- Core Strategy: Use simple language. It is easy to forget that the world of medicine is an alternate universe with its own language, customs and behaviors. Patients enter this alternate universe, and they encounter all the problems of cross-cultural travel. In addition, they are very ill and do not have the resources to think and analyze information well. Even their friends and family may not understand our language. If we drop medical jargon from our explanations and are prepared to repeat the information several times, the families we work with have a greater probability of understanding us. Stressed families can only absorb a limited amount of information at one time. They need to hear it multiple times so they can move to a point of decision-making.
- Core Strategy: Focus on care coordination. The system of care has changed—and most patients do not know it. They do not understand the Hospitalist system of care and still expect their family physician to follow them into the hospital. It is a shock to learn that may not be the case. They may already be struggling with a new diagnosis or a poor surgical outcome, and a different system of care adds to the stress. Be prepared to explain this system of care and provide reassurance that their primary care physician will get a report of what happened during their hospital stay.
- Core Strategy: Realize that patients do not know how medical decisions happen. Medical decisions—good ones—are “found” not “made”. There is a big difference between how the medical team looks at decision-making in healthcare and how our patients do. Patients frequently believe that their provider can get information (from labs, scans, biopsies etc.) and then simply “make” a decision about the best treatment option. In reality, those decisions are “found”: the healthcare team looks at all the information, tries to judge what might work best, integrates more information, changes their minds, suggests something else: it’s a moveable process. Treatment plans can shift quickly. In the end, we hope to “find” care that works and enhances the patient’s quality of life. The process may look chaotic to patients and families. We need to communicate how and why we do what we do.
- Core Strategy: Have an answer for the hardest words: “I promised I’d never…” We hear this all the time: “I promised I’d always take care of them”; or “I promised I’d never send them to a nursing home.” We need to help people look beneath those words to what they were really promising: to care for their family member in the best way possible. It is important to have these discussions because it helps move families from feeling guilty about their care decisions to feeling peaceful about them. When they have made that shift, options that did not seem possible before can emerge and ease the transition to the next level of care.
The father of the 15-month old girl had struggled unsuccessfully to understand the decision to discharge rendered by a complex system. His daughter’s medical team had struggled to provide the best care possible after a devastating medical event. The challenge now is to integrate the family and the team so that the next step (e.g. accept discharge, or advocate for continued medical care) will be in the best interest of the patient, and one the family can understand and successfully accommodate.
The Right NOT to Know
I heard from a colleague the other day about a healthcare advocate who had been advised that she had a legal and ethical responsibility to tell a client information, such as a diagnosis, even if the client or the client’s family did not want that to happen. The question was, did I feel this was an ethical and legal way to act? It is a complex issue worth looking at more carefully.
One of the values in healthcare advocacy that is most important is client autonomy, meaning that the client has the right to know or not know medical information about themselves. In some family systems, members believe that information is, more properly “held” by a senior family member and given (or not given) to someone as is deemed appropriate by the family.
When I begin to work with a client and their family, one of the questions I ask is what they believe about information; i.e. if there is a life-threatening diagnosis, who should know? I ask these questions because I need to know how the family system handles potentially difficult information. Once I understand their system, then my ethical obligation is to follow it, even if it does not agree with what I might wish would happen. Personally, I believe that a client can have more autonomy if they have information. That statement is a reflection of my beliefs, value system and perhaps culture; that belief, however, is only mine and it may not be shared by some of my clients. Every client is different; some people want to know, and others do not.
My goal as a healthcare advocate is to discover and honor whatever system my client and family use and most closely follow the wishes of my client. I have found, in doing this work for many years, that some clients simply do not want to know “bad news”; they may even identify a family member that medical results should be given to; they would rely on the family member to tell them–or not–believing that this system works best. As a healthcare advocate, I am comfortable working with my clients and families this way because I believe that it is the only ethical way to act. I know of no legal mandate anywhere in the U.S. that says clients MUST be told when they do not wish it. I would consider it a breach of ethics to force information on them that they have been clear they do not want. There is a right NOT to know.
There are special situations with children that may arise, simply because they are minors and medical information is given to their parents who decide what and when to tell their child. Some children have shown an amazing capacity to grapple with complex medical diagnoses and life-threatening illnesses, however. The world of pediatric medicine recognizes this and many clinicians encourage the child’s participation, as much as they are able, based on their age and capacity to understand and the parent(s) permission. In this situation, the legal guardian(s) receives the information and may elect to disclose some or none or all of the information to their child. My role as a healthcare advocate here is to assist the parents in figuring out if and when to disclose this information to their child and continue to respect their beliefs, values and culture.
The ultimate goal is to understand what my client wishes and follow those wishes: that is the ethical path a healthcare advocate needs to follow.
Advocacy for Everyone
Healthcare Liaison has a training and Credentialing Program specifically for medical professionals who want to be certified as healthcare advocates. A class of seven just passed their certification exams, and they are now running their own businesses as Certified Healthcare Advocates. You can see them–and see if one of them is in your area–by going to www.healthcareliaison.com/advocates.html .
Each time a group graduates, I am struck by how many people want to go specifically into the field of eldercare advocacy. While it is true that the population is “graying” as baby boomers enter their retirement years, I constantly wonder about how young families with children with life-threatening illnesses manage to navigate our complex system. I puzzle about there are many advocates who want to work with the elderly, but few who want to work with children and families: after all, it’s not just seniors who are confused and overwhelmed by healthcare; it’s everyone. It is one of the aspects that I most love about how I work: I have clients of all ages and it keeps me focused on the entire range of healthcare, not just one age group. I love working with seniors, and I love working with other age groups as well.
I have thought about this a lot because one of the populations I like working with is families with children who have complex medical conditions. Somehow, I think, there is a belief, even in medical systems, that young children and families don’t need help navigating through a medical crisis because the medical system takes care of them through the concept of “Medical Home” and there’s no need for more help. I know, however, from watching parents with a sick child in the intensive care unit, or a family struggling with a child’s diagnosis of leukemia, that there is a need. What kinds of services can I offer those families?
- Help in formulating their questions to ask the medical team
- Explanations of what is happening
- Assistance with complex decision-making about treatment options
- Support for second or third opinions
- Guidance with decision-making
- Help with managing family and friends
- Following the family through the entire range of care
- Insurance company assistance
My concern with healthcare advocates and the emerging profession is that advocates will specialize too quickly without first having a solid background in working with all age groups. I think an advocate is a better advocate when they choose breadth first and then narrow to a specialty.
How Much Does It Cost?
I am frequently asked how much it “should” cost to work with a healthcare advocate. The honest answer is that it varies tremendously, depending on your part of the country. The range I have seen, in talking with advocates nationwide, is enormous, but most people fall in the $50-$200 range. What determines the cost?
* Geographic area. Where you live and the cost of living there will drive the cost of all of your advocates expenses. And your cost.
* How your advocate works. Healthcare Advocates who travel to see you in your home or the hospital (as opposed to having you see them in their office) will cost more. The advantage is that you don’t need to travel to them; they travel to you, but there are many costs (time, mileage) associated with that system.
* The amount of time your Advocate has been working. People frequently start out at lower rates and as they establish themselves, their rates go up. An exception could be businesses that are incorporated as a non-profit or Advocates that have a sliding scale for fees.
* The amount of training your Advocate has. As with many services, people trained or certified in that area will cost more.
What can you do to control your costs?
* Make sure you have a written agreement with your Advocate for the services you want. Your goals should be clearly spelled out by the end of the first meeting so you both know what you’re trying to accomplish.
* Divide up the tasks. Frequently, once we have the goals identified, my clients say “I can do these pieces and I want you to do these other ones. It’s a cost saver for them and helps them be more empowered in their on-going medical care.
* Keep communications clear. Your Advocate should be giving you–via phone or email–updates on what they are doing for you. If you’re in the hospital, they may be communicating with your family and friends. I frequently set up email groups with my clients so that everyone they want “in the loop” receives the same information from me at the same time.
* Trust your intuition. If it seems like it’s difficult to work with your Advocate–for whatever reason–talk with them to try to resolve it. If it still feels like it’s not a “good fit” with that particular Advocate, find another one. The idea is to assist you in your goals, and you need to be working with someone that can help you do just that!
Some Nifty New Apps
These came to my attention through Harvard_Womens_Health_Watch.htm.
If losing weight is your concerns, look at “Lose It” for iPhone. It helps you set up a weight loss program and track calories and exercise. The one thing it can’t teach you is how to tell when you’ve had enough!
ICE (In Case of Emergency). An app that allows you to enter basic data about you into your phone: blood type, family/friend contact information, medications you are taking and medical conditions you have. Emergency personnel will look for that app if you have a smart phone.
MedPage Today Mobile. Gives you breaking medical news that will be widely reported.
Outbreaks Near Me. Uses your phone’s GPS system and the Centers of Disease Control data to pinpoint outbreaks of diseases in your area.
There are many more, but these will get you started!
HIPAA–Something to Hide Behind?
I have been exasperated the last few weeks with both insurance companies and hospitals. When I work for my clients, I have them sign HIPAA compliant release forms so I can speak with healthcare providers and insurers on behalf of my client. It may be something as simple as helping resolve a billing question, or as complex as helping a client understand the chemotherapy she is about to begin.
In the last two months, I have had increasing problems getting access, and the reason cited is “HIPAA Law”. While I have, and use, an authorization for release of medical information that is “HIPAA Compliant”, increasingly insurers and providers will not accept my form: they require that their own form, vetted by their own attorneys, be filled out. This presents a significant problem since these forms are not on-line, the member has to request it directly from the insurer or hospital and the forms may only be sent to the member directly, not to an advocate such as myself to fill out with my client. In addition, this provider refused to even FAX the form directly to the client, insisting that they could only use the U.S. mail.
In another case, the insurer sent out a form to my client, but the insurer had pre-filled the blanks; my client did not like the limited access they were granting me, so he changed the form, signed it and returned it. The insurer said the form was invalid because there were changes on it! But it is the client’s form, the client’s information and the client’s signature! The insurer said they had to send out a new form, and that my client could not make any changes on what they set up as the parameters for release of information. This completely violates HIPAA: the client controls the information, not the insurer. And it contributes to delays in access to information.
What can you do about this?
- Always initially try to resolve the problem with the insurer or provider directly: ask to speak with a supervisor if the representative is unable to assist you.
- If you are experiencing a delay in accessing your healthcare information or have other HIPAA-related complaints, you can file a complaint with your state Health and Human Services Agency or the Regional Manager, Department of Health and Human Services.
The Consumer as Advocate
I was talking recently with a colleague in the healthcare advocacy world, and she was wondering aloud in puzzlement how people who did not have medical training could be healthcare advocates. I laughingly said, ”We asked for it and we got it!” The world of “consumer driven healthcare” has done exactly what I had anticipated: it has put the consumer in the foreground of healthcare. No wonder consumers are flocking to the field of healthcare advocacy!
In the not-so-long-ago world of healthcare, the focus was on moving to “consumer driven healthcare” where consumers–those insured by (primarily) employer-provided health insurance– were asked to start assuming more responsibility for the cost of their healthcare. Their economic responsibility for their coverage was increased, and the “first dollars” of coverage often came from the consumers themselves before their insurance would move in with coverage. The insurance companies believed their mantra: consumers with more responsibility for their own healthcare would be more cautious and not utilizes as many services.
That strategy was partially effective, but sometimes in a counterproductive way. Consumers delayed care; the cost “containment” came at the expense of the long-term goal of reducing costs: if care is delayed, then the care eventually provided will cost more because of the delay. Did we save money? That part is unclear.
But consumers, while delaying care, became highly informed consumers. They researched their diagnoses on-line; they formed support groups; they started to contact physicians and researchers directly to find out more information on their particular condition. They read about treatments and outcomes of clinical trials, and they became savvy consumers of healthcare. And then they realized they could share information and be a support to each other; they could help others with similar conditions navigate the complex waters of healthcare. In short, they became their own advocates, and then helped others do the same.
Click this link to see a funny (and serious) comment on this new world of the empowered healthcare consumer:
So why are people surprised that consumers have gone into healthcare advocacy? Consumers are smart, creative—and have the biggest stake in their healthcare future. Insurers and employers said “accept more (economic) responsibility”; consumers replied, “If we’re paying for it, then we will be involved in many ways, not just economically. We will no longer passively sit and accept what you tell us: we can organize, inform ourselves and push for the care we want.” That is the new world of consumer healthcare advocacy. Some of these consumers have opened practices where they assist others through healthcare systems. The thoughtful providers see consumer advocates as partners in the complex world of healthcare.