Posted in Caregiving

As If You Didn’t Have Enough to Worry About

Welcome to Caregiver Friday!!

Just when you think being a decision maker in the role of caregiver/wellness partner a new study lays an extra burden of responsibility on your shoulders.  The findings are in reference to a study done on patients who had been labeled in a permanent vegetative state.  In many cases the family is asked if they want to continue the person on life support or have other extreme measures performed.  That decision can be easier if you know that the person is truly in a permanent vegetative state.  But what if you’re not sure.

The Wall Street Journal (WSJ) reported on the study that was published in the New England Journal of Medicine.  The study examined 23 patients who had been diagnosed as being in a permanent vegetative state.  Four of the patients showed signs of consciousness…can you believe it 4 of 23.

Using MRI scans the patients were asked questions and their brains were monitored.  Certain responses would light-up certain parts of the brain.  The WSJ article stated “Four of the 23 vegetative patients responded to the commands and exhibited brain activity in the same areas as healthy control subjects”.

When trying to make potentially life and death decisions as a caregiver (hopefully you were mindful to have a Durable Power of Attorney for Healthcare) you are now burdened with the quandary, “Is the person I’m caring for really in a permanent vegetative state or is he/she one like in the studies that can still responds to questions?’ 

I believe the medical ethicists are all gathering to take up this matter on a big-picture discussion.  How would you handle this situation as a caregiver?  If the decision is your, how will you know whether the person you’re caring for has some level of consciousness?  

Dr. Allan H. Ropper said, “the line between consciousness and unconsciousness will be blurred” as scientific understanding of the vegetative state depends.  This is not the most comforting statement for those of you caring for someone who is facing end of life issues or has been in an accident, but for now it’s the reality.

Who do you have that you can discuss these issues with such as a medical ethicist or spiritual director?  Did you have thorough conversations with the person you’re caring for about end-of-life issues?  There are those who even though they may have brain activity, on whatever level, wouldn’t want to live the rest of the days unable to speak, move, or communicate.  Even if the brain might register some activity is this a life?  You know this will wind up in the courts at some point, but for now the onus of responsibility is on you.

I know there is more to come; this is truly the tip of the iceberg.  Please have conversations with your loved ones about end-of-life care.  Decision-making for caregivers is tough enough without the burden of deciding one’s level of consciousness.

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


Life has become more complicated and simultaneously easier as a result of technology.  In addition to magazines, radio, and television we have the internet and mobile devices that not only give access to information, but give it on demand.  So what’s the problem?  The problem for many is that if you read or research voraciously, then trying to keep up with all the latest and greatest information is a full-time job.  The information you receive may not be in accordance with everything you read yesterday, and you may not have created a system about how to handle all the information.

I read the Wall Street Journal six days a week and overwhelmingly there are articles related to medicine and health.  Yesterday alone had issues about your brain on music and information about how CT scans are linked to cancer.  Well if you are diagnosed with an illness, many diagnoses require that you have a CT scan so how do you weigh the benefits and risks?  Has your doctor read the study(ies) about CT scans and cancer risk?  The information was not only in the Wall Street Journal but on a segment on National Public Radio, so it’s prominent in our consciousness.

There are a couple of things to consider when retrieving the endless stream of health information.  It’s important that you pick what type of information you want on a regular basis.  Are you looking for information related to treatment, detection, or risks for particular illnesses?  Do you want to find information related to quality of life, pain management, or holistic health?  You need to know what your focus will be so that other information can pass you by without being inundated by the avalanche of information.

Focusing the type of information you desire will also direct you to the sources that will provide that type of information.  It will limit the amount of sources you have to acquire and search for while at the same time picking resources with reporters or scientists you trust and believe.  It’s easy to get caught up in all the information, but it can also cloud your vision because trying to sift through all the information is daunting task.  It can cause more psychic harm than physical health so be picky.  Don’t subscribe to everything and anything, be a connoisseur of health.

Posted in newly diagnosed illness

Pay Attention to Demographics

On Tuesday the Wall Street Journal (WSJ) had an article about Imerman Angels ( , 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 after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Family Are the Best Protectors

There probably isn’t anyone who knows you better than your family.  In the family therapy community there’s a joke, “Why does your family push your buttons?   Because they installed them!”  Funny but also very true.  The connections you have with loved ones can save your life when you’re in the hospital.

A Wall Street Journal article discussed new legislation being passed in states that gives family or those with legal rights to make medical decisions the right to call for help in times of trouble.  When a family notices potentially lethal changes or problems as a result of medical errors hospitals are beginning to create emergency teams that will respond.  Why has this happened?

There have been cases where a family member noticed changes in a patient and the only people who have had contact with the patient were nurses and residents.  Believe it or not there are times when we need the big guns, the attending physicians who can spot the problems that residents may have never encountered in their training.  These laws have come about because of deaths that resulted from this lack of care.

The article states, “…a new patient-safety law in the state (South Carolina), is one of a number of hospitals to give patients families the power to demand immediate attention from experienced medical staff when they fear a worsening condition.”  The article does on to say, “…studies show patients particularly vulnerable on nights and weekends when hospitals are often thinly staffed and those on duty may hesitate to call in senior physicians.” 

We’re dealing with multiple systems, but the truth is as a someone caring for a loved one in the hospital, show some moxy and call the senior physician.  Do you really want to start your career with an unnecessary death on your hands?  I know the problem is deeper because we’re dealing with a culture in the medical community that has perpetuated itself for a very long and time and breaking these unspoken rules gets the intern/resident in trouble.  As patients and caregivers we have to get past the politics of the medical community and do what’s right for our loved one. 

As a result of these medical errors there is a group forming called “Mothers Against Medical Errors”.  This tells us that it’s not a fluke, but a true epidemic in our hospitals.  The website will be launched at the end of the month,  If you or a loved one is going in to the hospital, learn the symptoms that could be the result of an escalating problem.  Ask a lot of questions?  Don’t take vague answers!  Give yourself and your loved ones every benefit to leave the hospital on the road to health and healing.

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

What if Everyone Came Clean?

We live in a litigious society.  When it comes to errors made in medical settings, the stories of the legal battles would blow your mind.  The bottom line is no one likes to be lied to and we all know that cover-ups aren’t a hit with most people.  The lessons we learned as kids about telling the truth should apply in the medical arena, but risk managers, hospital administrators, and insurance companies are terrified of how it will effect the bottom line.

Yesterday I mentioned that studies show that when medical personnel make an error when the provider told the patient about the error and apologized the number of lawsuits dropped dramatically.  The truth is that we all want to be treated with civility.  We put our faith in our healthcare providers and if something goes wrong we hope that they could at least show us the courtesy of being honest.  In most cases I don’t think the medical personnel would hold back but they are ambushed by those who pull the purse strings and that’s where everything goes haywire.

There are new strategies being tried with incredible results.  This past Tuesday, the Wall Street Journal had an article titled, “Hospitals Own Up to Errors”.  One example of the changes being made were shared as follows, “The University of Illinois center set up a specialized service in 2004 to help staff communicate with patients and families after harm occurs.  Since 2006, the center has had a policy of fully disclosing medical errors, and swiftly offering a financial settlement.  And patient-family members sit alongside staff on a board charged with overseeing plans to prevent errors.”  That’s a fresh take on this whole situation.  There is transparency and as patients it’s what we want and deserve.  When our emotions make our decisions things become contentious and that doesn’t reverse the harm that has occurred or change how medical facilities interact with patients.

I feel it’s our right to always ask our providers for the truth.  If they are truly the professionals they purport to be it shouldn’t be an issue.  If they are more concerned with their reputation and their insurance carrier than we have bigger fish to fry.

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

Too Many Deaths from Errors

I was reading an article in the Wall Street Journal yesterday about how hospitals are owning up to their errors.  I think this is great because studies show that the big malpractice suits come not because of the malpractice, but because the physician/hospital didn’t acknowledge the wrong nor did they apologize…I guess they’re making progress.

The statistic in the article that was staggering was that “Medical errors kill as many as 98,000 Americans each year, according to the Institute of Medicine, a government advisory group.”  That’s a big number, one that we really need to be conscious of each and every time we go to the doctor, get a new prescription, have a procedure done, or most of all enter the hospital. 

The problem is that we’ve been indoctrinated not to ask questions.  New drug dispensing systems like bar codes that have to match the drug container with the wrist band on the patient are important steps in saving lives, but it isn’t enough.  We need ongoing training to be ramped up.  There are states in the country that don’t require continuing education for healthcare professionals.  The only reason most of them do take continuing education is that is lowers their malpractice insurance. 

It’s critical that patients and caregivers become savvy about the medical profession.  Books such as Jerome Groopman’s, How Doctor’s Think should be the first book that people go buy following a diagnosis.  In fact I believe the newly diagnosed person should drive (after the shock wears off) from the doctors office to their favorite bookstore to buy that book.  We have to begin to understand how doctor’s think so we can ask better questions, challenge them when necessary, and keep them accountable.

Do yourself a favor, become informed, keep a watchful eye for omissions and errors like anything related to sanitation issues, and most of all have a voice.  Be empowered to ask questions because the last thing anyone wants is to be one of the 98,000 Americans who die annually from medical errors.  You have a part to play in this equation.