An example happened a few months ago when a parent of a six month old called me.  The labor and delivery had been difficult, and the baby was born with serious birth defects.  It is the most anguishing outcome for any parent:  the healthy baby they expected was not the baby who was born.  Instead they have a child who will need lifelong care and has an uncertain future.  How can I help this family?

Working with infants and children and their families presents unique challenges. Families are grappling with guilt and fear that come with having a child with complex medical problems.  Parents do not expect to have a seriously ill child.  There are sometimes difficult decision to make about what is the best care and where can it be obtained–and who will pay for it.

With the family mentioned above, I identified several problems:

*  the parents felt responsible for their child’s condition (“If only we’d done something different  during the pregnancy, this wouldn’t have happened”)

*  the medical team met frequently with the family, but was not repeating the information enough times for the parents to “get” it.  (Health educators say people generally need to hear information a minimum of three times on three separate occasions to be able to incorporate it and use it in a productive way).

*  the medical decisions the family needed to make were complex:  did they want their baby revived if he stopped breathing?  What about using a machine to help him breath?

*  the parents weren’t utilizing all of their support systems to assist them with decision-making

*  the other children in the family were bewildered by the events

What I did to help:

*  talked with the medical team to let them know the parents confusion and encouraged individual members of the team to talk with the parents rather than the whole group at once.

*  Helped the parents identify family and friends that could be supportive in helping them make medical decisions; contacted the pastor at their church so he could provide support

*  Sat down with the family to explain in simple terms what the medical team was saying, translating medical language into sentences they could easily understand.  Answered the other children’s questions with answers they could understand

*  Walked them through the decision-making process for the medical issues they needed to reach consensus on

*  Met with the parents and the medical team to assist the baby’s parents in expressing their wishes

I think one of the most important things that I did for this family was to sit and listen as they talked.  I could be a sounding board and a third party to help them talk with each other and reach a decision that grew from an understanding of their choices.

]]> http://healthcareliaison.com/blog/2010/07/27/its-about-my-child/feed/ 0 http://healthcareliaison.com/blog/2010/07/20/is-my-mother-dying/ http://healthcareliaison.com/blog/2010/07/20/is-my-mother-dying/#comments Wed, 21 Jul 2010 01:16:59 +0000 Joanna Smith http://healthcareliaison.com/blog/2010/07/20/ I had answered my phone and was speaking with an adult daughter who was exhausted from taking care of her 89 year old Mother.  She told me her Mother had fallen several times at home that week and had refused to go to the doctor. The daughter was frantic.  What was wrong? Was her Mother dying?   How could I help her?

The stress of caring for a family member can be enormous whether you leave nearby or across the country.  It is difficult to imagine how it feels until you’re in the middle of it yourself.  What could I do to help this family?

*  See the Family– Every effective Advocate needs to see the family in their own home/apartment or living environment.  Many Advocates may work by telephone, but this does not give as accurate a picture.  Video conferencing is also a great approach to use if computer access is possible and there is not an advocate in the immediate area.

*  Take a good history–How has her health been before this week? Does she have on-going medical conditions? What drugs is she taking?  Who are the doctors she’s seen before?  Did she like them?  Have there been sudden changes in her health?  What kinds of activities does she do every day?  Is Mom still able to make decisions  about her own healthcare or does her daughter need to step forward and assist her?

* Always get a complete list of medications–many times people (of all ages) are on multiple drugs.  An Advocate can check for drug interactions quickly and suggest a thorough review by a pharmacist or physician.

*  Look at the home environment–are there ways to make it safer?  Does Mom need a walker?  Should a request be made for a Home Health Nurse or Physical Therapist?  Is there additional help at home so the daughter gets a break from care giving?  If not, are there ways to get this inexpensively?

* Develop a Plan with the Family–An Advocate  draws up a comprehensive plan, with all interested people participating in the planning, of how to proceed so everyone knows what the goals are.  The plan will also help everyone see when the Advocate’s services are no longer needed.

What Happened with this Family–When I met with them,  I realized  Mother’s hesitation about going to the doctor was for an all-to-familiar reason:  she didn’t want to go to the doctor because she was afraid she’d end up in a nursing home.  I could reassure her that a doctor’s visit would help us see how to help her.  She saw her doctor, had x-rays and I asked for and received an order for Home Health physical therapy.   The doctor reviewed the many medications she was on and suggested discontinuing one of them.   The doctor could tell her she was, in fact, not dying.  Additional help from her church group gave the daughter some breaks in care giving.

An experienced advocate can make this happen for people of any age!

Next Week:  How Healthcare Advocates work with young children and families.

The short answer is:  An Advocate can help you navigate through complex medical situations for yourself, your child, your parent or other family member.  But still, what does that mean?

As I currently see it,  after 25 years in the field of discharge planning and medical social work,  and six years running my own Advocacy business, Healthcare Advocates assist their clients in the following ways:

Making informed choices regarding available options for care  and resources within the healthcare system; working with clients at all “levels of care” in the  healthcare system, explaining diagnoses and procedures, assisting in considering alternate  treatment options, clarifying  personal values as they relate to medical treatments,   coordinating  medical services, case management and discharge planning, arranging  community-based services, assisting with complex medical decision-making, helping arrange  second opinions, securing services from other medical systems, and advocating for clients with insurance systems and healthcare providers.

These are a wide range of tasks, and some advocates will specialize in some tasks and not others.  It’s important to know what you most need help with, and then look for an Advocate with the training and background to help you in that specific area.

Equally important, however, is:  what does a Healthcare Advocate refrain from doing?  What services cross the line from Advocacy to providing direct service to a client or patient?  I think Healthcare Advocate Services should not include the following services:

1.  Giving second opinions;

2. Direct, hands-on medical care of any type, including, but not limited to the following:  physical exams, blood draws, wound care and surgical procedures.

Why is this distinction important?  Because once someone moves to “direct care” of a client or patient, it changes the dynamic; it may bring other parties (i.e., insurance companies) into the picture. From the client’s or patient’s view, it becomes difficult to see whether the direct provider is acting independent of these other parties.  Today’s world of Healthcare is moving to  transparency, and Healthcare Advocates can help ensure that process.

Over the more recent years, major attempts at educating healthcare providers in the hospital on how to reduce the risk of contributing to a “hospital-acquired” infection have been made.  One of the simple preventive actions a healthcare provider can take is to wash his/her hands upon entering a patient’s room, and this is where the focus of the education has been.  Interestingly enough, according to recent news releases, these efforts have not significantly reduced the infection rates in hospitals.

Currently a new attempt is being made to encourage patients to be active participants in a “have you washed your hands?” program:   they would be the ones to ask their care providers in the hospital if they had washed their hands before coming in the room. It’s being cast as a way for patients to be active participants in their healthcare.

This strikes me as a curious shift in responsibility.  To ask a patient or family to be the one to ask a team of doctors or the nurse or the lab technician “did you wash your hands–and for how long–before you came in?”   ignores the fact that most patients and families are quite intimidated by hospitals, doctors, nurses and other hospital personnel. Ultimately, we have to be realistic about who is responsible for hand-washing:    it’s the medical professionals and the hospital staff.    This is simply not a situation where the concept of “equal partners in healthcare” is appropriate.

In the “old world” of medicine, people seeking care were patients.  The origin of “patients” is from the Latin for  “to suffer or endure”.  Is that a relevant description for today?  Only partially.  Yes, people who are ill do suffer and endure, but they are also taking steps to learn about their options, talk with others in a similar situation and research centers of excellence and specialists.  They approach their providers with this information, and are collegial in their approach to their care:  they don’t ask a healthcare provider to tell them what to do:  they discuss options, risks and benefits and outcome data and then decide with their provider what options to take.  This is a very different way to approach healthcare.

So language needs to follow the shift:  rather than a “patient”, which conveys a static, “waiting-for-someone-to-tell-me-what-to-do” position, I think the title now is “consumer”. People look at healthcare as a product they can research and purchase.  These consumers have shifted away from the old model to the empowered healthcare model.  Patients no more, they are driving some of the most significant changes in healthcare delivery today.

What is it about the world of healthcare, where someone leaving the hospital is “a discharge” and we talk about surgeries as a Whipple Procedures or a CABG (pronounced “Cabbage”)–and we use that language with the patients and clients we work with.  How easily that language slips out!  What I am realizing is that the world of healthcare is a foreign language–just as the worlds of insurance or accounting or law are separate languages.  And people entering the universe of healthcare, under stress, without knowing the language or having an interpreter to guide them–end up under even more stress.  We end up sounding like an exclusive club–and that’s not good healthcare delivery.

So what can we do?  Drop the medical language when talking with patients and clients.  Draw pictures instead; talk about risks and benefits to whatever is being considered; don’t be rushed in explanations; involve the individual and their family in a discussion that is exactly at their level of understanding.  It’s up to healthcare professionals  to figure out and match that level.  So the focus is on us speaking our client’s/patient’s language, not the other way around.

And healthcare is a prime example.

If you cut your finger, that is a puzzle:  we know, if it’s a minor cut, it needs…washing, perhaps an antibiotic ointment, maybe a band aid.  If it’s major, it may require stitches.  But if you are diagnosed with irritable bowel syndrome or an irregularity of your heart beat, that is something different.  There are no pat answers:  you need to do a lot more investigation and thought, along with your healthcare team, to figure out the best treatment options.  This is a time when healthcare advocates can be of so much help to people.  It’s the mysteries we can help most with, by showing people how to problem-solve, interpret the information they’re receiving and make a decision.

These topics are some of what is included in the curriculum of Healthcare Liaison’s “Becoming a Private Healthcare Advocate”  workshops.  The next one will be at UC/Berkeley on February 27th and 28th.  You can look at the course description at www.healthcareliaison.com/workshops.

Membership opens on August 1st

The web site (www.nahac.com) will have a geographic listing of all the members, a searchable database of Healthcare Advocates all over the country and brief biographies of each member so people searching for an advocate can choose one that has the skills they need. And also, Healthcare Advocates will be able to locate each other for peer support and referrals. Come join the Association! The membership page will be open on August 1, 2009, and the first Annual conference will be in Berkeley, CA November 14th and 15th, 2009. Look for details on the conference on www.nahac.com on September 1, 2009. It’s an exciting step in this evolving profession!

This client was expressing a feeling often voiced by my clients: there is “no one there” to look after them, no one who is looking at the big picture. In fact, this is a common complaint of clients being treated at major medical centers:  who is in charge of all my care?  What he realized in the subsequent discussion was that Healthcare Liaison creates that system for him, and that he had found his “Medical Home”.  A good healthcare advocate does exactly that:  in a complex medical world, we create the “Medical Home”.

The concept of “Medical Home” is not a new concept.  In the era of medicine that pre-dated the rise of specialty practices, there was a medical home with the family doctor.  If someone needed to see a specialist, the family doctor referred them and was in close communication with that specialist and continued to provide the overall care. If you asked someone “who’s your doctor?”, they could easily answer that question.

With the rise in specialty practices, the picture became less clear.  You could go see a specialist for a particular problem, but maybe that specialist was outside of the regular group practice that you used.  Would the information from the specialist get back to your primary care (“regular”) doctor?

With Medical Home, we go back to the original design:  there would be a primary care physician (and office) that would effectively manage a person’s care, contacting specialists, getting updates and keeping the big picture in place.While the concept is very appealing, there are some major structural changes that would need to happen in physician’s practices to make this an effective practice:
1.  The standard primary care physician will not have the time him or herself–and it will not be cost effective–to do all of the  follow-up that needs to happen; the office will need to hire nurses or medical social workers to accomplish this–and that will be costly.
2. Finding qualified personnel to do this kind of care will be difficult:  there is currently a shortage of both nurses and medical social workers;
3. The question of whether insurance will reimburse for these services has yet to be decided;
5. The electronic medical records systems are not yet sophisticated enough for all primary care physicians and specialists to be able to communicate seamlessly with each other.

As a concept of providing care, Medical Home is exciting–and so new, it’s old!

It’s not about the electronic medical records (which are definitely still a “work in
progress”!) or even the options of clinical trials and top-rated medical oncologists,
surgeons, interventional radiologists, skilled nurse practitioners—these are all very
important in ensuring delivery of extraordinary care–no, it was the medical students
and residents that gave me hope. They had carefully reviewed records before talking
with their patients; they were sensitive in their questioning , careful in their exams,
and knowledgeable about social and emotional resources that might help. They were
developing all of the characteristics that will make them compassionate clinicians,
dedicated researchers—and, most importantly, physicians with a human touch. It was
heartening to see.