Posted in Medications

Trick or Treat(ment)

Happy Halloween!!

Can’t believe we’re at the end of October, closing in on the last eight weeks of the year.  The healthcare reform debate in Washington makes everything related to healthcare front and center.  It could be that because of all the healthcare talk it’s in our consciousness and what has always been there is really being seen, doesn’t matter cause we’ll take it any way we can get it.

I’m finding lots of information about two particular topics, misdiagnosis and drug interactions.  Misdiagnosis although decreasing due to better diagnostic techniques is still a cause of death in too many cases.  Overwhelmingly the reason seems to be not allowing the patient to tell their story in its entirety.  This happens in every profession, in a race to be right we don’t allow the storyteller to complete their story.  We miss out on valuable information because the storyteller shuts down and unfortunately when it comes to medicine that could be the key that unlocks the diagnosis.

The other area of concern is drug interactions.  I know that there is a desire to find the magic bullet that will cure your health challenge.  The problem is that we’re not pharmacists so we don’t understand the interactions.  Just because something is sold over the counter doesn’t make ti safe.  It may be fine when take by itself, but combine it with anything else, another over the counter medication, a prescription, or a supplement and we begin to have problems.  When asked what we’re taking it’s not uncommon to leave out the over the counter meds and the supplements (herbal or otherwise) and that’s a big mistake.  The concern is that many contain ingredients that are listed as inactive and too many people don’t consider the impact these inactive ingredients can have on the body. 

Want the best care?  Before taking anything other than what’s prescribed, contact your pharmacist and do a consult.  Don’t wind up in the emergency room because of a drug interaction.  Don’t play pharmacist, play informed patient and use the team you’ve assembled that will guide you on your road to wellness.

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Posted in Caregiving

Are Others Empathic Enough?

Welcome to Caregiver Friday!!

Years ago when I was doing trainings for healthcare/complimentary health providers it was important to understand their level of empathy.  It was clear that they had the knowledge to help their patients/clients, but could they really understand the other’s point of view?  I started thinking about this because we had a snow storm starting Tuesday evening and we got 24+ inches of snow.  I was prepared so there was plenty of food, but it meant that we’d be in the house for at least a couple of days.  Started wondering about cabin fever, and for those of you caring for someone who is sick or injured I’m sure this is something that creeps into your consciousness on a regular basis.

The trainings we provided to the healthcare community were called empathy trainings.  The goal was to create an environment where they would experience, on the smallest of scales, the challenges of those they were serving.  One example was to attach popsicle sticks to their fingers and then ask them to open a jar simulating someone with extreme arthritis.  Another example was to put vaseline on a pair of glasses to simulate cataracts and then have them try and get around.  Obviously it’s not the real thing, but they were able to begin the process of understanding.  Where does this fit in for caregivers?  We had them rotate through being called by the empathy participants to receive help in most would consider to be everyday tasks…not to easy.

I guess the truth is that anything can be a learning experience if you frame it that way.  Being homebound, not by choice, can create feelings of physical, emotional and spiritual claustrophobia.  In places where this type of weather takes away the phone and/or power lines it leaves you isolated.  All of these give rise to anxiety that many caregivers experience feelings trapped in their homes unless arrangements are made for an alternate caregiver. 

There’s no way to for others to go through an empathy training, but it would be nice.  Having others be able to walk a mile in your shoes would bring about different conversations and actions.  It would provide greater understanding for what goes on within you on a daily basis and encourages others to reach out more often.  Empathy is good because it evens the playing field and brings people to a deeper level of understanding.

Posted in newly diagnosed illness

Pay Attention to Demographics

On Tuesday the Wall Street Journal (WSJ) had an article about Imerman Angels (http://www.imermanangels.org) , a Chicago based organization that pairs a mentor with a newly diagnosed person with cancer.  The organization matches the mentor and the newly diagnosed patient based on as many parameters as possible, but most importantly age and type of cancer.  The implementation of a mentor program is critical when you consider the way healthcare has changed.  Yes, technology and research have increased the treatment options and prognosis for patients so now it’s time to pay attention to the person with the diagnosis; their emotional, spiritual and even their practical questions about living with the disease.

The startling part of the article was about survival rates, “…cancer survival among patients ages 25 to 35 hasn’t improved since 1975, according to the National Cancer Institute.  Some cancers are less responsive to treatment in young adults than in other age groups.  But those patients may be less likely to seek immediate help for symptoms, resulting in a delayed diagnosis, and they often lack insurance.”  This is both sad and disturbing.  I understand it developmentally; young people don’t believe they’re going to die so a symptom is something stupid that will go away.  Unfortunately the other part of the equation, lack of health insurance is an obstacle that has to be addressed.  If survival rates haven’t improved for this age group in 34 years then we’ve got a lot to do to change how things are being done.

No matter your diagnosis, finding someone who has blazed the trail is enormously helpful.  Having a go-to person who can let you know about the bumps in the road before they happen is a gift of tremendous proportion.  Most importantly, having someone who is living proof of what life can be like after your diagnosis provides hope, reduces isolation, and gives you the strength to make the tough choices that come with any diagnosis.  Look for a mentor by contacting the nonprofit organization either on the local or national level that represents those with your diagnosis.

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Published Outcomes

What if the success of your doctor’s practice was published on a website for the world to see?  Do you think it would change how your doctor provides care?  A group in Minnesota has done just that; taken the information about standards and goals and compared them with other health providers in the state.  MN Community Measurement began publishing healthcare results back in 2004.  It’s an interesting premise because you want the motivation to be providing the best care, when in fact it may be the competition between medical practices.

How would your medical decisions change if your provider was given a report card?  The reports are for illnesses like diabetes where there are clear guidelines and it’s easily monitored.  Diabetes is certainly a leading concern in healthcare because the ramifications if not kept under control can be devastating.  So what does this tracking system provide for us as patients?  It provides us with outcome results that we can bring to our provider to further our conversations about our care.  In Minnesota, tracking the diabetes patients is done using five measures.  If you knew the five measures you could bring it to your own doctor and have the discussion.  Sometimes you have to simply take matters into your own hands instead of waiting for a watchdog group to make standards of care universal.

As time goes by other illnesses and conditions will be added to the mix.  The article about this monitoring process had some interesting quotes such as, “Physicians are very competitive people,” says Linda Walling, medical director for clinical informatics at HealthEast clinics…”  I guess I should be thankful that physicians are competitive and want to rank higher or their care would be less than ideal…is that what she’s saying?  Another quote by Judith Hibbard, a senior researcher at the University of Oregon states, “…Her research has found that public reporting motivates health-care providers to work harder on improving care, largely because of concern about their reputation.”  Did I read that right?  They’re more concerned about their reputation than providing optimum care in the first place?  I’m confused.

How do you think this type of reporting will improve your level of care?  What would you like to score your doctor on?  Would you use the information provided on a website like the one in Minnesota and if so how would you use it?  Let’s start the dialogue because it could truly be a matter of life and death!

Posted in Uncategorized

Does Everyone have a Secret?

Families are funny because they create interesting communication scenarios that complicates life.  I had a funny experience with my family this weekend that I want to share and see if you or someone you know has ever experienced something similar.

My parents came for a visit, a long weekend, since we hadn’t seen each other in a while.  At one point I’m walking with my dad and he tells me that my mother’s doctor had left a message saying that the blood test she had gone in for came back with results that were elevated.  The message also went on to say that my mother needed to go in to speak with the doctor about treatment options (it was a glucose test).  My father went on to say that he didn’t want to tell my mother about the test results until their mini-vacation was over so she wouldn’t worry. 

A day later my mother, who is technologically challenged, had me look at her cell phone.  I noticed she had a small envelope at the top of the screen and told her she had a message.  Lo and behold the doctor had left a message about her test results.  She didn’t seem scared or anxious at the news, but resolved, like it’s just one more thing.  She told me not to tell my dad.

At this point I had to tell each of them that the other knew about the message.  What’s the underlying message of the story?  Each was trying to protect the other from the news left by the doctor.  Like most people my family doesn’t always deal with medical issues that well ( they leave that to me) so a possible diabetes diagnosis was not in the cards.  I thought it was sweet that they wanted to protect one another.  My dad definitely doesn’t deal with medical issues well, he won’t even take an aspirin when he’s sick, so the idea of treatment of any kind sends him to the stratosphere.

What’s the real essence of the story?  We want to believe that we’re protecting others by not sharing news, but that often backfires.  You may not think others can handle the news, but you’d be surprised; I certainly was this weekend.  When facing a health challenge, or a mental illness the truth is that when we put ourselves in the competent and compassionate care of a good provider the journey is easier.  It’s never pleasant, but it does make it easier.

The secret, although well intended, can bind you in uncomfortable communication patterns.  Get it out there and free yourself from being bound!

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Emotional Health, living with chronic illness, Living with Illness

When Do You Know the Time is Right?

I’m still blown away by the Public Service Announcement about mental illness, http://www.bringchange2mind.org, but I’ve been thinking more extensively about why is now the right time to bring this message to consciousness?  The truth is that we’ve been pushing mental illness to the background because it’s misunderstood.  Even in this day and age people don’t know what bipolar disorder is until you say it’s what used to be called manic-depression.  The common belief about schizophrenia is that it’s multiple personality disorder, not sure how that happened.  Is this the right time for that public service announcement because we’ve made advances in treatment or public opinion?

Look at physical illnesses like Parkinson’s Disease, until Michael J. Fox announced his diagnosis people didn’t talk about the disease.  Organizations that emerged to support Parkinson’s patients gained increased credibility when the Michael J. Fox foundation put money into research, advocacy, and support.  Was it Michael J. Fox’s job to bring the disease to the general population’s consciousness?  It certainly brought people out of hiding because they now had a visible community for support. 

I’ve noticed that in the past two years, during the warm weather, there has been a dramatic increase in Walk-A-Thons for various illnesses.  In most cases, it brings out those impacted by the disease both directly and indirectly.  Organizations create public relations campaigns to educate the public in hopes of receiving donations.  These walk-a-thons are very public announcements about illness.  Those who walk self-identify to the world their personal health challenge.  As I look back at the notifications I get, I don’t recall ever seeing one for a mental illness organization; they’ve all be physical illness organizations.  This get’s back to the question, “When is the time right?” 

Are we becoming a more tolerant or accepting people?  Are we at the point where most of us have come in contact with someone who is facing a physical illness or mental illness?  Does that personal experience make us more compassionate?  Are we willing to create conversations about the challenges we or our loved ones are facing?  If you have any thoughts on this please share them so we can expand the conversations!

Posted in Caregiving

Disbelief

Welcome to Caregiver Friday!!

If you haven’t been following the blog this week then you’ve missed out on learning about the new public service announcement (PSA) about mental illness.  You can view the video at http://www.bringchange2mind.org and see not only the artistry in the piece, but the power of the message.  So why am I writing about the PSA once again?  Up till now I’ve been focusing on the message, the importance of bringing mental illness to our consciousness, and the courage of those who participated in the PSA.  Now I want to turn my attention to one of the parents who accompanies her son in the PSA. 

The woman is the mother of an adult son who is schizophrenic.  When they interview the pair she tells about how they found out about their son’s disability.  They had gone on vacation when they received an emergency call that their son was in a psychiatric hospital.  They immediately rushed home, went to the hospital and proceeded to check him out not believing he was ill.  Over the next few days the son’s symptoms surfaced in a way that the parents couldn’t deny the problem and he was re-admitted to the hospital.  Why do want to live in the land of disbelief?  How does it serve our world view?  What happens when our assumptions about health are shattered?

This mother was well-meaning, loving, concerned and a host of other admirable characteristics, but like all of us, her blind spot got exposed.  We all have it, that place just outside our consciousness that nags at us and gives us clues but we choose to ignore.  When this happens, whether it’s a mental health or physical health challenge, the clues land at our feet and for some it takes a crisis to get everyone on the same page and to acknowledge the problem.  I’m wondering if our blind spots get revealed on the health issue, do they become exposed in other areas of our lives? 

We don’t like to think about mental illness because for many it conjures up images of Jack Nicholson in One Flew Over the Cuckoos Nest.  Fortunately, our understanding of mental illness has progressed over the past thirty years.  Treatments are more effective and less toxic, although side effects still remain a huge hindrance in maintaining the treatment protocol.  We’re afraid, disgraced, and confused when a loved one is in a psychiatric hospital, but seem to be okay if the problem is physically based…why is that?  How much of our own prejudices create the veil of disbelief?  I want to be very clear, this is not about blame, but of consciousness.  As Oprah say, “When we know better we do better”; just look at the loved ones in the PSA, you’ll see the transformation from disbelief to consciousness and acceptance!