When airline magazines are interested in the world of healthcare advocacy, it means the profession has reached an broad area of recognition as a topic of interest. Sandra Yin (see article at: http://tiny.cc/o4ogww )contacted Healthcare Liaison in 2011, inquiring about the profession of Healthcare Advocacy. She wanted to write an article about the profession and then “shop” it to the “on-board” magazines that all airlines produce.
American Airlines just published her story in their May edition. The article is particularly interesting because it shows all the myriad types of healthcare advocacy that exist: everything from accompanying someone to the doctor to get a list of questions answered to hospital discharge planning, billing, insurance, grievances, appeals, medication problems, doing research and setting up second opinions–it is a diverse field. For the consumer, the most important aspect to consider is: what kind of help do I need, and is this person skilled in that particular area? If what you need is a second opinion, the list of questions is helpful, but how do you locate and get an appointment with the specialist you need? And will your insurance plan pay for it? What happens if you have no insurance? Consumers need to interview their advocates carefully to ensure the advocate has the particular skill base that will help the consumer solve their problem!
To help consumers with the process, the National Association of Healthcare Advocacy Consultants (NAHAC) has just launched a “zip code” search on with website. Consumers can read profiles of advocates and contact them to talk about what they need and see if it is a “good fit”. NAHAC is a non-profit organization, founded by the CEO of Healthcare Liaison, Joanna Smith. You can reach the home page at: www.nahac.com.
Bateman has been adopted! A woman who already had two cats offered to take him. He appears to be settling in well and slowly getting to know the other cats. So this story has a happy ending, thanks to energetic and concerned friends and neighbors.
If you know someone who is ill and is concerned about their pet’s future:
The SPCA has a program where the pet can be relinquished to the SPCA and then placed with a specially selected family who agrees to care for the pet. It is best if this is set up before the owner dies (there is some paperwork to do), but it means that a system is in place for care for the pet in the future. It can be an enormous relief for an ill friend or family member to know that plans are in place for their pet in the future.
An elderly client of Healthcare Liaison died this week, and left a 16-year-six-month old cat named Bateman. Bateman had had a difficult time during my client’s very brief illness until we brought in 24-hour care givers to help my client. He was glued to them, seeking them out to nestle and purr when they were available. Each one of them became very attached to him. It was not hard to do……
So now that his “person” is gone, the dilemma is what to do about Bateman, and this is a common theme when someone dies. There are no family members who can adopt him, and he is definitely a cat senior citizen, although in good health. A devoted friend comes twice a day to feed him and give him medicine, and the family is looking for a good home for him. Interested? Let us know!
I was in the waiting room of a doctor’s office recently, and I overhead a patient talking with the receptionist. She was saying she would wait to have a skin biopsy scheduled because she was only a few months from being on Medicare. She currently had a high deductible insurance policy, and if she had the procedure done now, she would have to pay for it completely herself; if she waited for Medicare, she would only pay a very small amount for the procedure.
This conversation started me thinking about insurance in the U.S.. In an attempt to offer policies that people could afford, insurers designed and started to offer “high deductible” policies where the initial $2,500 or $5,000 or even $7,000 would be paid by the consumer and then the insurer would step in if the yearly amounts for healthcare exceeded that amount. The problem, of course, is that many people started using their insurance as a “major medical” policy only and did not seek routine care because they would be responsible for the cost of the care.
Enter Medicare, where there are HMOs and Original Medicare–each of which costs the patient much less when they need a procedure or other care. But that is exactly the problem: people who must self insure defer care during the years they self-insure. They build up “unmet need” by the time they are Medicare eligible, and Medicare will then cover it. This is the opposite of the way medical care needs to be delivered.
If we are to reduce the cost of Medicare, let’s start with providing complete care for people in their earlier lives so they won’t build up so much unmet, expensive care needs as they age. Yes, older people have serious and complex medical conditions, but some of those are the result of deferred care earlier in life.
We need to start with government-funded care for everyone early in life: early intervention saves later intervention. If we want to reduce the cost of Medicare, we have to start providing care early in life, ensuring good access to care. It will be cost-effective and it will be good care at the right time.
The granddaughter of one of my clients just sent me an email about a conversation she had just had with her 93 year old grandfather who is quite forgetful. And he knows he is forgetful. She had just had a very lucid, lovely conversation with him, and had written me about it. I had written back that the only problem is he forgets the conversations as soon as he hangs up the phone, and won’t remember that she had called. I was trying to provide reassurance to her, in case it was upsetting in the future when he didn’t remember she had called. That is probably one of the hardest situations for family members who are involved in caring for an aging parent—or in this case, grandparent.
In this case, the granddaughter wrote back and said “I know he forgets as soon as the visit/phone call is over; but that’s just cognitive. His head forgets. His spirit keeps the exchange just as ours does.”
A way to go forward when care giving is stressful: His head forgets: his heart remembers……
Medicare has a list of “never events”—situations that are devastating, unambiguous and preventable in healthcare. For a complete list, follow this link: National Quality Forum Never Events
I have created a new set of “never events’ from the Consumer’s viewpoint:
- I should never leave a doctor’s appointment without understanding what was said
- I should never say yes to a procedure I don’t understand.
- I should never feel a question is silly
- I should never be interrupted 15 seconds into my story
- I should never think I’m taking up too much of the doctor’s time
- I should never see that lack of insurance is shutting me out from needed, medically appropriate care.
In the Hospital:
- I should never see a provider walk to my bedside without washing his/her hands first, and I should not have to be the one to remind them to do so.
- I should never be asked to sign papers in a hurry without a family member or friend to review them;
- I should never be approached by a discharge planner I’ve never met on the morning I’m discharged;
- I should never feel that I’m taking up too much of the doctor’s time;
- I should never be surrounded by a team of students or providers without my permission;
- I should never have blood drawn without knowing why.
- I should never be sent home without a clear, verbal explanation of what my follow-up care will be.
- I should never be scared to go home.
These are some of the events healthcare advocates can help their clients avoid, and these are some of the ways to ensure good healthcare is being delivered to you and your family.
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.
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.
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.
There are many exciting things happening at Healthcare Liaison, even in the midst of summer!
- We are pleased to announce the sale of our Workshop CD on the HCL website. If you haven’t yet taken the workshop “Becoming a Healthcare Advocate: 11 Steps to a New Career in Healthcare” or if you would like to listen to the updated version, it’s for sale on our web site at: http://www.healthcareliaison.com/store.html. While it sells for $199 on the web site, if you call us to order at 510-704-8476, you can purchase it via credit card for $125 until August 15, 2011
- We have a book coming out (well, a chapter in a book!). The book is entitled “Health—Mind, Body, Soul” and is a collection of information on different aspects of health. Joanna was pleased to write the chapter on Healthcare Advocacy. It will be for sale on our web site in August, also in the Web Site store at the above address.
Our credentialing classes for the fall are filling up and we have five spaces left. Have you been considering signing up? Now is the time!! We are offering a “Summer Special”: discounted pricing on our two versions of the Credentialing Program. The 9 month program for people wanting to be credentialed in healthcare advocacy is normally $3,500; until August 15th we will be offering it for $3,000.
Our twelve month program, for people who want to be credentialed but also want assistance with actually setting up a business, is ordinarily $4,100. Until August 15th, we are offering it for $3,600.
- We are introducing a program for non-medically trained people who would like to be certified in healthcare advocacy. Acceptance is based on qualifications and experience; interested people can submit a resume and arrange for an interview. Please contact us for more information: 510-704-8476.
To take advantage of these program savings, you must send in a resume, be accepted into the program and complete your deposit to hold a place in the class, by August 15th. The first session will be on Sunday, September 11th (exact time to be decided on by participants).
As an added bonus, if you sign up by August 15th, we’ll add in a free copy of the updated workshop “Becoming a Healthcare Advocate”.