I wonder who has the most control in my health care decisions.  Is it me or the doctor or my health insurer?  I have to consider who gets to say NO the most.

Here is how I see the flow.   I go to the doctor for a variety of reasons from annuals to sick visits.  The doctor evaluates my situation, then orders tests, procedures or writes a prescription.  The insurer may agree and pay the doctor or not agree and the bill goes to me.

The insurer may get an appeal from the doctor if any treatment isn’t approved but they don’t have to reverse it.  And the most interesting part is the insurer is not obligated to give you a medical reason for the denial.  Some of the most common denials are:

“This is not medically necessary”

“Our medical staff has reviewed your request and feel it is not necessary”

“We want you to see someone in the network.”

“We would like you to try another medication in our formulary.”

I recently had a case where I specifically requested the insurer to  give a medical explanation, if the appeal was denied.  I had researched the disease process and discovered, the surgical treatment a several local surgeons wanted to perform, was not supported by the most recent replicated research and data. The long term outcomes were far better than the older method which often resulted in a second surgery. I sent copies of the research with the appeal and felt I had proved my point beyond a doubt.

I didn’t get approval for my client and I didn’t get a medical  explanation as to why they supported the old out dated research.  I estimated the cost was about the same.  The difference was the surgeon my client wanted was out of network.  The cost saving philosophy was  more important the evidence based research.

Who is responsible if the insurer denies coverage for the current most effective treatment  and the patient has a poor outcome?  My vote is the insurer.

When many are faced with a serious diagnosis and need extensive care, who controls the care?  Many insurance policies limit options or opinions.  Patients are making medical decisions based on what their insurance company will pay.  Many patients must consider what will be the lowest out of pocket cost to me?  No longer can the thought be, where can I get the best care?

I have experienced after many appeals, that complicated cases rarely get approved.  Complicated cases often mean more payout.  I also have learned that the medical review team are not always the experts in the area being appealed.  I had one insurance appeals doctor state to the office RN that it didn’t matter what research or information was sent, he was not going to reverse his decision.  He didn’t like the procedure.

Politicians espouse the need to not let government control our healthcare.  I say, don’t let the insurance companies control our healthcare.

I turned on my computer and there was an email from an a past client.  As I read the email, my heart began to break.  She had breast cancer that had metastasized to the bone.  She was wondering if I could help her.  She didn’t have very good insurance as I remembered.  She had been one of my early clients when I started my business.  I called and let her know I would help her in anyway she needed.

Later that same day, I  was glancing through  my new emails.    My dear friend and fellow patient advocate had breast cancer.  I just didn’t know what to do with this information.  This woman and her business partner have been a support and inspiration in my journey with healthcare advocacy.  She is a sharp business woman and a compassionate advocate.  I knew who to call when I was over the top with anxiety or needed input.  All I could do was send an email with my love and prayers.

What is with this cancer?  Can it please just go away?   Cancer takes over one’s life.  Treatments are intense and frequently debilitating.  I am always amazed and awed at the strength and courage it takes to get through a treatment protocol, whether it is surgery, chemotherapy, radiation or a combination.  Side effects can wreak havoc on one’s life.  Depression is ever looming from one of the treatments or just dealing with the diagnosis.

I have sat with my clients’ families waiting to hear on surgical results.  I have sat with clients during chemo.  I have taken people to radiation appointments and I have celebrated with clients at the end of treatment protocols and the cancer being gone.  I have stepped away from my desk to get a grip on my emotions when a client calls and says the cancer is back.  And when an old client and a beloved colleague have cancer, my heart breaks because I know the path and the journey that each is starting, is long and arduous.

Cancer got the best of me today.

The Boston Globe, part two in the series on the use of anti-psychotics in nursing homes, offers a look at  alternatives.  The article focuses on a nursing home, The Life Care Center of Nashoba Valley and how they do not have anyone on these medications for behavioral issues.  According to the data released by the Center for Medicare and Medicaid, they scored a 0%.  How do they do it?

The approach is multilayered both with the individual and the physical layout.  The staff, Boston Globe writer  Kay Lazar states, ” try to tailor care to each resident, to make it familiar and comforting.  Staffers conb residents’ past to learn their preferences, hobbies, and accomplishments, tapping bedrock emotions that endure long after memories fade.”   Once this is accomplished, the staff can begin to understand what might trigger behavioral outbursts or agitation.  They can initiate care plans to decrease potential triggers.

The Alzheimer’s wing has a circular hallway, so those who wonder do not get agitated by reaching an end.  They also have llamas and goats that are in the front lawn.  The llamas are even brought into the wing to be petted.  The literature has shown that animals can be calming and soothing for people with dementia.

The administration believes it is important for the staff to be trained effectively in how to deal with people with dementia without using medications.  It is the culture of the institution from the top down.  This includes the medical team who supports this approach.

I have visited this nursing home and can verify what was said in the article.  The staff I met were open and communicative.  There was a real feeling that the facility was patient centered.  I saw the llamas.  When I took a family member to visit, the admissions person asked if we would like to meet the llamas.  I think that was a first for me.  I like that sense of personal interaction.  Unfortunately, there is over a six month waiting list to get in.

For me, what both articles illustrate, is how important it is to ask about the use of these medications when searching for a long term care facility.  When an institution is actively seeking ways to enhance the lives of the elderly residents, I am impressed.  I can say, there aren’t many.

http://articles.boston.com/2012-04-30/lifestyle/31500889_1_antipsychotics-nursing-home-elderly-dementia-patients

I want to thank the Boston Globe writers, Kay Lasar and Matt Carroll, for doing the series on the use of anti-psychotic medications to treat Alzheimer’s disease  and persons without a mental illness called ”A Rampant Prescription, A Hidden Peril.”  I applaud them for their research and investigation into the over use of these drugs in the majority of nursing homes.  The essence of the article is that nursing homes are using these medications to sedate residents who are deemed more problematic or having behavioral issues. The first article appeared on April 29, 2012. http://articles.boston.com/2012-04-29/news/31478153_1_nursing-home-antipsychotics-skilled-nursing-center

The article was based on data on more than 15,600 nursing homes across the country complied by the US Centers for Medicaid and Medicare.  The data examined by the writers was based on two areas.  First, the percentage of  long term residents without a psychosis who received medication contrary to US Nursing Home regulations.  Second, the characteristics of  each home, such as staffing levels, number if patients on Medicaid and the number reported by staff with behavioral problems.

Here are some of the findings:

1. 21% of US nursing homes (28% in Massachusetts) at least 1/4 of residents without illnesses recommended for medications.

2. “There is a clear link between the rate of anti-psychotic use in the nursing home and its staffing level.  Homes that most often used these drugs for conditions not recommended by regulators had fewer registered nurses…”

3.” The data do not include the reasons why patients received anti-psychotics, but homes that most often used them for conditions unrelated to psychosis tended to have more residents deemed by staff to have behavioral problems including wandering, being verbally or physically abusive or resisting care.”

4.  ”… a greater percentage of residents covered by the government Medicaid program, which pays nursing home bills for people with limited incomes… They have fewer residents with private insurance, which pays a much higher rate than Medicaid.  That means these homes have less money for staff.”

As a patient advocate with several clients in nursing homes, I am constantly at odds with the staff  about these medications.   It seems anytime a patient is upset or in anyway agitated, the facility will call the psychiatrist or consulting mental health group and ask for a medication.  Sequel is the drug of choice.  Unfortunately, the side effects for some people is increased agitation.   The remedy is to increase the medication.  One of the main complaints from family members is why is loved one on these medications?

It can be a battle with a facility to stop anti-psychotic medications.  Most medical staff will try to dissuade you from discontinuing the medications.  It can be hard for families to insist because they feel they are not as medically knowledgeable.  I tell them to not back down and insist on a trial of stopping the medications.

This article brings to the forefront the use of anti-psychotics as medical restraints.  It is a question to ask when selecting a nursing home for a loved one about the use of anti-psychotic medications.  Here is a link that gives the information on nursing homes and antipsychotic use.   http://www.bostonglobe.com/lifestyle/health-wellness/2012/04/28/database/j8FWvjNHMaP6uo7hQ0mrHO/story.html?p1=News_links 

Part two tomorrow : Nursing Homes that don’t use anti-psychotics.

This post is written by Erica Moss, who is the community manager for the Masters in Nursing online program at Georgetown University, offering one of the nation’s leading nurse practitioner programs. Outside of work, she’s a dog lover who enjoys photography and meeting new people.

The Internet is changing almost every aspect of our lives. It impacts us at every level: how we communicate, how we learn, how we search for work. It even impacts how we get sick, stay healthy and learn more about our health. E-patients are the next wave in Internet users: People who use the Internet to gather information on medical conditions, healthy living, and even to get information about coping with and treating ailments. E-patients surf the web to learn more about their own health, or the health of a friend or family member.

Being an E-Patient

The Internet is a powerful tool, and e-patients say the wealth and accessibility of online medical information has a large impact on their health care. E-patients are very active in their own medical care, using the knowledge they acquire online to take charge of their health. They are more aware of their conditions, cognizant of their symptoms and informed enough to help their doctors monitor their progress. While there may exist a risk of overly hasty self-diagnosis, knowing more about medical conditions makes a person more attuned to their body and promotes vigilance. E-patients are more likely to try alternative remedies to medication, such as vitamins or herbal supplements, and can learn more about exercises and techniques to cope with various conditions.

An e-patient is an empowered patient, and knowing more about one’s own health is an important step to combating any illness or even just maintaining a healthy lifestyle. The patient/doctor relationship has been changed through this growing trend, as patients have more of a say in what information is provided and what courses of action are taken. They are more engaged, better able to communicate with their doctors and better prepared to make difficult decisions. Sometimes this knowledge can increase tension between patients, doctors and family members, as e-patients use information they have gathered to question to question their doctor’s rationale. It is always important to remember that an e-patient is not a medical expert, and this heightened health awareness should be used to work with doctors, not against them.

Nonetheless, many medical professionals regard e-patients as important contributors to the advancement of medicine and health care. Patients are now able to take their health into their own hands, and increased participation is an important part of recovery. They are willing to try new things, motivated to help themselves get better and able to collaborate with their health-care providers.

Resources for E-Patients

In response to this growing e-patient trend, many websites have begun to form online communities of e-patients. Here, people can share information, offer support and advice, and guide others toward better health awareness. TheSocietyforParticipatoryMedicine is a public charity that aims to increase the collaboration between patients and doctors, and promote active participation in one’s own health care. Via conferences and the distribution of web materials, the society works with medical professionals to help them understand the needs of e-patients and the importance of participatory medicine.

It empowers patients to become informed about their medical care and provides them with the resources to learn more. To help facilitate collaboration between doctors and e-patients, the society publishes TheJournalofParticipatoryMedicine, maintains a helpful e-Patients.netblog, and is involved with various conferencesandevents.

 PatientsLikeMe is another invaluable resource for e-patients. This online community not only offers medical advice and information, but it facilitates communication between patients by forming a social network that allows them to connect and support each other. Over 145,000 people have become e-patients through Patients Like Me. The organization is dedicated to putting patients first through a powerful support system that provides information and encourages openness.

Last year, the site’s ValueofOpenness blog featured E-Patient Dave’sTopInternetResources for participatory medicine. E-PatientDave is an internationally renowned speaker and medical activist who, after surviving cancer, became an advocate for participatory medicine and patient enlightenment. He has been featured in numerous medical publications and has delivered one of the most watched TEDtalks of all time.

One of the first questions I ask new clients is,  Do you have a healthcare proxy ?  This is one of the most important documents you can have when going to the doctor or hospital.  A designated healthcare proxy is the person who will make medical decisions when you are incapacitated or incompetent.  It is important to have someone who knows what you would want medically in times of crisis.

The person who will be the healthcare proxy, needs to be someone you trust to make medical decisions in your best interest.  Hopefully, a discussion about the parameters of care have been discussed.  For instance, do you want to be resuscitated?   Do you want to be on a ventilator?  Do you want to be on life support?  Do you want to have hospice care if you are terminally ill?  The person chosen can be a family member or friend.  I advise having a back up person listed in case the primary proxy is unavailable.  Often a parent, will choose as the primary, their spouse and then name a child as the secondary.

If there is no proxy in place before a hospitalization, it is not too late.  Hospitals generally want a proxy available and have the paper work.  Do not let anyone from the hospital staff be named a proxy.  It is a conflict of interest.  As long as a person is mentally competent, a healthcare proxy can be executed.  However, once someone is incompetent, a healthcare proxy can not be done or changed.  At that point it is necessary to go to court and get a guardianship which is complicated and can be costly.

I advise children of elderly parents to know, who is the parents proxy?  I find many times the parents have not informed their children of the document. The  elderly are often at risk from hospital and facility administrators, who will petition the courts for guardianship or conservatorships if there is any question who is making decisions.  This means the administrators will make all the decisions medically and financially.  It is a nightmare to get reversed.

Here are steps to get the healthcare proxy:                                                                                                                                         1. To get a healthcare proxy form, either ask your lawyer, doctor or download it from the state website.  For example, in NY http://www.health.ny.gov/professionals/patients/health_care_proxy/

2. Fill out the form with naming designated persons.

3. Get it notarized.

4. Give copies to the designated healthcare proxy,  family members and primary care doctor.

5. Keep it with all medical documents.

6. Make sure to take it any hospital procedures including MRI testing.

7.  The healthcare proxy can be changed at any time.

I was listening to the WBZ 1030 Boston radio and the medical minute came on.  Dr Murray Feingold was doing a piece called “Understanding Your Doctor.” http://boston.cbslocal.com/medical-minutes/#.  Usually I like his segments but I was surprised and annoyed by his comments.

In this minute, he discussed a study that examined communication between a doctor and patient.  The study design had a doctor giving information, a patient repeating it back and then signing a paper saying he/she understood.  On return to the office, the patient was asked to repeat what had been explained.  The result was patients often couldn’t remember the information or the doctor explaining it.

This is not news to most advocates.  Dr Feingold went on to to say patients should be proactive and take more responsibility for understanding the information. He also said, patients shouldn’t use the excuse doctors seemed too busy and  didn’t want to take the time.  His final thought was,  if your doctor doesn’t want to take the time, you should look for a new doctor.

So it is the patients fault he/she doesn’t get the information correct?  Patients should be smarter when they are told they have high blood pressure or diabetes and need to take a new medication that has a myriad of potential side effects?  I know, after waiting at least 30 minutes for my doctor, sitting in a sterile medical exam room with no windows, anxious about my results, all I want to do is get the prescription and get out of there.  I want to breath and look on the Internet for the details I won’t get from my rushed doctor.

As an advocate who goes to appointments with patients to a variety of primary care doctors and specialists, I have found it is a rare doctor who actually has the skills to truely explain a new medication, diagnosis or procedure in layperson’s terms.  It is the rare doctor who is willing to take whatever time is needed to answer questions.  It is not that most doctors wouldn’t like to be able to take the time but the system demands quickness and efficiency.

Yes, patients do need to be better advocates but not in the ways Dr Feingold mentions.  Patients need to bring a person to their appointments, and insist on getting the answers to their questions.  Doctors need to do better follow up to ensure a patient understands.  What about a phone call or email a week later from the doctor?  Would it hurt to actually find out how the new medication or diagnosis is impacting the patient’s life?

I would not conclude from this study that patients are the only ones who need to be more involved.  I would add that doctors need to look at how they talk to their patients.  How about a piece called “Understanding Your Patient.”

I often find myself wondering, while visiting a nursing home, how our healthcare system for the elderly ended up this way.  I have become very good at ignoring the smells, sounds, cries and staff’s freguent insensitivities and focusing on my client.  I also have to help  the family with the emotional, physical, psychological and financial burden.

Let me say, I have never met a nursing home that is user friendly to the family.  There is much lip service at admission but the family and advocate, if involved, have to forge the relationship.  I would like to think, there is a meeting of the minds, but there  is not.  It is a treaty, of sorts, and the family has to be vigilant  that the institution lives up  to their end.  There are smiles and pleasant talk but it doesn’t always translate into appropriate action.

This all said, and probably not news to anyone, I ask how did we get here, why is it allowed and why do we ignore it?

The obvious: People are living longer with complicated medical problems.  Many are unable to care for themselves.  Families struggle to care for an aging member, while keeping an ailing person home is not often, a viable solution.  The cost for an aide is exorbitant.  Our culture is based on a singular family unit, everyone lives in their own house or apartment.  We Americans are fiercely independent and that translates to our living situations.  Nobody ever wants to give up that freedom of their own house even when it is not medically safe.  Nobody wants to give up that control.

Most of us have never experienced  institutional life, of being one amongst many.  In these situations, individual needs are less important while the running of the institution is paramount.  The systems in place at each facility are the base by which all must adhere to.  It has to be this way to maintain safety, security and minimize liability.

Elder care is a booming business.  Nursing homes are being bought up by corporations and  profits are rising.  It is difficult to find a locally owned institution with ties to the community. Many administrations are based out of state resulting in longer times to resolve conflicts or implement new policies.  In Massachusetts, the monthly cost is between $6500.00-11,000.00.  Some people augment the cost with long term life insurance.  These policies cover between 40-60% and the rest is out of pocket.  Life savings are drained and then Medicaid will pay, which is not universally accepted.

It is becoming more difficult to find a long term available bed in a nursing home.  They are filled to the brim. How can this model be sustained ?

One of my thoughts is, if Accountable Care Organizations (ACO)  or medical home work, it may be a jumping off point for change.  How great would it be to have a community multidisciplinary health  team overseeing nursing homes?  Imagine, when a center patient needs to go to a nursing home, each ACO has an affiliated group of homes.  This would mean that the care team would be the same.  It would eliminate a change in care plan, medications and medical staff.  Relationships and trust would already established with the patient as well as the family.

The question is can it be economically feasible?  I would suggest in order to begin Medicare/Medicaid support full reimbursement to an ACO and medical homes that include nursing homes as an integral part of their system.  This approach currently exists in insurance companies that offer policies with the three tier reimbursement concepts.  This could also apply to skilled nursing reimbursements for rehabilitation through Medicare (Medicare does not pay for any long term care).

No doubt, many questions remain.  Something has to change in elder care and nursing homes.  It is a model that continually reminds me of something out of a Dickens novel.  Time to start thinking about change.

This was a  spouse/caregiver’s call to me for help.  ”He is trying to use his bag as a phone.”

I didn’t know whether to laugh or cry.  The caregiver was unhinged, scared and confused.  What had happened to make these sudden changes?  What happened was, my client had a minor procedure for back pain that caused a cascade of events physically and mentally.  There was no catheter prior to the procedure and mental status was stable.

Within 24 hours of the procedure, my client was a different person and his spouse was doing a lot of crying.  There were two trips to the emergency room.  On the second trip, the ER staff was in the process of discharging him to home when I arrived.  I informed  them, they needed to work him up and he couldn’t go home for many reasons.  They needed to do their due diligence and get  placement in a skilled nursing facility until everything was once again stable.

I earned my advocate pay because I averted a disaster.  The spouse just didn’t know what to say to the ER and they didn’t seem to get it that there were profound changes here.  No one acknowledged a possible medication side effect from the procedure.  No one was looking at the wife crying and not understanding what the implications were.  After I stopped the discharge, she said to me, “I just thought they had his best interests in mind.”  

I experienced once again, the overwhelming work of a caregiver.  The work and stress is 7/24.  There are good and bad days.  It doesn’t get easier as a disease progresses.  Financial restraints can cause limited support for private pay help.  Medicare doesn’t pay for many hours of in home aide support.  The burden of care falls on the caregiver.  This caregiver was fraying around the edges.

This was a medication side effect.  There is something called post surgical delirium.  This occurs when people have an adverse effect from the anesthesia.  It can cause a delirium.  There can be hallucinations, confusion, memory loss and misuse of words, to state a few.  Unfortunately, it is frequently misdiagnosed and mistreated especially in the older population.

I have never heard a medical professional discuss the post surgical delirium as a possible side effect.    That is why, it is very important to read the information provided on side effects, and ask questions Every person responds differently to medications and it is important to have the information before hand in order to recognize any changes.

I always advise clients, friend and families to take someone to appointments. Have a list of questions.  The accompanying person can make sure all the questions are answered.  Everyone needs this support. 

I spent part of the other night with a client and his wife at the local ER.  His primary care doctor had sent him there after hours.  My client’s wife and caregiver had thought she could handle it herself but on the follow up call, she was in distress.  My client was having a difficult time understanding what was happening to him.  She was at her wits end, feeling alone and becoming unhinged.  I told her, I was on my way.

I arrived at the ER and had no trouble being sent to the room.  I immediately assessed the situation.  I took a few minutes to speak with the my client’s wife and then headed to the nurses station.  I introduced myself as a patient advocate and nurse practitioner and requested an update.  As usual, it takes a few seconds and blank looks for the nurse or doctor to engage in conversation.

I think it surprises most of the staff that I ask very pointed questions in regards to potential diagnosis, actions taken and whether there will  be an admission or discharge.  I make it clear that I am not there to make decisions but to get all the information.

It makes a difference for my clients.  The staff can explain medical details to me and I know how to ask the questions.  I can help a family evaluate options and move things along.  I can also work with the ER staff to include discharge services like visiting nurse, physical therapy, new medication or medical devise management.  I also make sure the staff maintains the best possible safety measures like washing hands.

The problem with most ERs is communication.  Doctors and nurses move from room to room without much information.  Often it is because there isn’t any new information like lab results.  But it is scary, isolating and cold.  The lights are bright and it is noisey.  It can be disorienting for the patient and the family.

Here are some tips to making an ER visit smoother and being the best advocate for your loved one.   I advise having this information in a notebook, or electronic devise like the iPad.                                                                                                                                                              1. List of medications, dosage and prescribing physicians.                                                                                                                                      2. List of current diagnosis.                                                                                                                        3. Brief past medical history.                                                                                                                       4. Insurance cards.                                                                                                                                         5. Health Care Proxy, Power of Attorney and Advanced Directives.                                                6. Pen and paper to write down what doctors and nurses say.                                                     7. Snacks, light blanket and something to read.  It can be many hours in the ER.

I think everyone should have an advocate when in the ER.  Colleagues of mine in Connecticut ,started a service called Health Champions @ The ER Advocacy Services.  http://www.healthchampion.net/eldercare-support.services.asp                           Boston area requests are referred to Healthcare Whisperer, Inc.