Who’s Driving Who?

Who’s Driving Who?


         A
recent NY Times Ethicist piece “Nursing Home Pitfalls,” raises crucial issues in
the area of geriatric ethics.”  How far
should we go in order to protect a person with dementia from herself and others?
As a geriatrician I am regularly asked by family members and loved ones what to
do about a variety of problems that are usually only seen in persons with
dementia. One of the most troubling conundrums is in the area of driving
safety.



           
The evaluation starts when a new patient arrives with a loved one for an
initial evaluation. The presence of the loved one is my first clue that there
may already be a problem with memory. When, despite my best efforts to direct my
questions to the patient, the loved one answers, I realize that memory and other
functions related to overall intellect are going to be an issue.



           
As I ask the patient to move into the exam room so my assistant can
prepare her for a physical exam, the loved one motions for me to allow a few
private moments without the patient in the room. “She keeps asking me the
same  questions over and over again. Her
car is covered in dents. Should she still be driving and how do I get her to
stop?”  The fact that the loved one asked
this question leads me to believe that the answer is “No.” 


            There are companies that will perform a
driving test that can be helpful, IF the patient will allow herself  to be examined.  If not… it is more difficult. Even if they have still retained the skills of driving, being able to safely navigate to their destination and  home may be diminished as the dementia progresses. Sometimes removing any cues for driving such as the keys or the car sitting in the driveway will help.   We know of one man who was no longer a safe driver being adamant about continuing to drive whenever the topic was discussed.  The family removed the car to get it “fixed”  and in a few days driving was forgotten.  Taking away the keys and removing the car seems drastic but
can be life and face saving.

         In addition to cognitive abilities, sensory and motor function need to be assessed also.  Vision and hearing losses make driving more risky.  Slowed reflexes and weakened motor function also pose safety issues. Medications should be monitored for side effects that could hamper driving such as dizziness caused by low blood pressure.   Once an elder says he or she is cutting down (no nights, no bad weather, no highways, no left turns, not too far), a thorough evaluation of driving skills is in order.


          Having some plans in place for how the elder will get around is important as the transition occurs.   Public transportation may no longer be a safe alternative but elder rides provided by some social service agencies and family/friend support can fill the gap.  Proactively, when seniors are contemplating downsizing, moving to warming climates, or moving to be near family,  the availability of needed services within walking distance, delivery services, and public tranportion should be factored into the decision.

 

       



The Geriascope and Geriacillin

The Geriascope and Geriacillin


            When a loved one exhibits severe frailty (can barely see, hear, walk, stand or handle basic bodily functions), dementia, or both, it becomes a  family issue.   Frequently the problems have been coming on for years incrementally and imperceptibly.  By the time the
patient, who is usually accompanied by a loved one
and an aide, reaches my geriatric practice, the patient has already been to see several other doctors: a
neurologist for memory problems and weakness, a cardiologist for breathlessness and dizziness,
a rheumatologist for joint and other pain issues and a surgeon for a hip or knee replacement.  However this coterie of physicians could not really make much of a dent into the underlying chronic and progressive  dementia and frailty.  Now the family turns to the
geriatrician who specializes in the care of the elderly believing this physician will do what the others could not and make the patient like his/her younger self.   Here are some of the statements I hear.


            “She
keeps asking the same thing over and over again.”


            “She
does not remember that I was just there.”


            “Our
aide may quit because my mother sleeps all day and is up all night.”


            “Sometimes my father gets really nasty. He never was like that.”


            “He’s
always in pain.”


            “Can’t
you give him something that will change the situation? Something mild.”


                These are the times I wish I could
pull out a geriascope, perform a gerioscopy, diagnose the problem and report
to the caregivers, “Good news!  I found the problem. We’ll just give your mother and father a dose of geriacillin,
maybe a double dose and they will be better in no time”


            There
are answers but unlike replacing a hip, the care is
on-going because the problems are progressive and keep changing. And unlike an antibiotic for an infection, there is rarely a condition that can be cured and disappears.  Here are some of the suggestions I
frequently make:


1.    If she still has enough mental capacity have her sign an advanced medical directive.  Ask your mother what consititues a good quality of life for her and what types of interventions she wants to maintain it.


2.     
Get your father’s finances into shape under the supervision of a
eldercare attorney.  It might be good to let your siblings know what is being done to prevent suspicions and hard feelings.


3.     
Train her caregivers on techniques to reduce the need for
drugs to control difficult behavior. For example,  there is no need to fight over when to eat or, for the most part, what to eat. Keep her awake as much
during the day as possible. If she is taken to the toilet on a schedule,  you may
have less trouble controlling bowel and bladder.


4.      Make sure all caregivers have a regular break. This work is
exhausting both physically and emotionally. A regular word of thanks and
gratitude is always appreciated. A “bonus” on special occasions such as
birthdays and holidays is important,  but periodically an unexpected small token such as bringing lunch or giving a gift certificate goes a long
way to making the caregiver feel appreciated.


5.     Find a healthcare professional(Geriatrician, Internist,
Geriatric Nurse Practitioner) who is knowledgeable AND available. Many crises
can be handled just by speaking to a professional who knows your situation and
is experienced, calm,  and whom you can get hold of “after hours.” They’re out
there you just have to find them.


6.     
Give yourself a break. Of course that’s why you’ve come
to  me and we’re going to make things
better but the problems are not going away. On the other hand, you did not
cause this to happen. Some people get help through attending support groups and others just need to find a
non-judgmental kind person with whom to vent. A friend? Clergy member? Mental health
professional? Your pet?  (Having a pet at such a time can be very comforting to both you and your elder.)



             You will get through this. There
are resources out here in the world to help. Find us. Use the internet, local
hospital, county medical society, religious affiliation, neighbor, pharmacist,
and medical professional. There’s no short cut or magic bullet in this but sometimes one simple idea
or a word of support is just the dose of geriacillin you need to get through that day’s crisis.


What Happened or The Lost Art of Giving Comfort?

            You’ve
suffered a painful loss; Youve experienced the death of a loved one or a job loss;
Perhaps you’ve been injured or received a serious medical diagnosis and  are in a highly vulnerable state. What do
you want to hear from friends and family.? Although I cannot speak for everyone, I know what I do not want to hear at such a time, “What happened?”

         When my brilliant wonderful
father developed dementia, people who had not heard or seen him for some time
could not restrain themselves from the need to ask,
“What
happened?” Because this was often not said in a quiet concerned tone,  the
subtext was clear. “I need to know what happened so I can see if it is going to
happen to me.” Occasionally this was followed by, “I can’t believe it.”
Subtext, “How could that happen to him since we’re so much alike?  I’m scared
it’s going to happen to me.”

Am I being too cynical? Maybe people really are just concerned and this is
how they show their concern. Sorry, I, at least do not buy it. Hearing bad news
makes everyone anxious about themselves and that’s fine but after the initial shock, we need to get a grip. Our friends and family need us to be there. They need us
to be a comfort as they grieve their loss.

            “I’m
so sorry.”


            “Is
there anything I can do to help at this time?”


            “Could
I bring over a meal?”


            “Would
you like to talk about it?”

             “Could I sit with you for a while?” 

              “I’d like to share a fond memory with you.”

Please feel free to add your own
suggestions. We’ll keep a list.

Update Alzheimer’s Disease Dementia Predicting Test: Do You Want It?

I have heard from many people about this last blog.  Almost all said they would not want the test–mostly because the news would be so depressing.  In talking to them, I realized that the main reasons most people choose to want to have the test (tie up loose ends, get things in order, reach out to loved ones)  were not as applicable to me and Sam.   Not that we have everything in our life all wonderfully  organized,  but we have seen through our practices not to take today and tomorrow for granted.  We have our wills and advanced directives.  We have spoken to the key people and shared our goals and values.  We strive to let those we love know how we feel.  I do not want to wait for the dangling sword of an Alzheimer’s diagnosis to push me to be grateful for each day and those people who make my life worthwhile.  I bet a lot of you feel the same way. 

Alzheimer’s Disease Predicting Test: Do You Want It?

Alzheimer’s Disease Predicting Test: Do You Want It?

Neurology researchers at Georgetown University have developed a simple blood test that looks at 10 specific fats in the blood to predict the likelihood of developing Alzheimer’s Disease (AD) in the next 3 years.  Early research has shown the test to be 90% accurate with no false negatives (people who tested negative but still developed dementia).  However 10% of people who tested positive did not develop dementia in 3 years.  Perhaps there are no false positives–just that the 3 year window was a bit too limited for this group. In another year or so they may also develop AD.  This needs to be followed.  Issues such as impact of this test on someone’s ability to get long term health care insurance or being refused employment also need to be addressed. 

Sam’s Dad, a man of great intellectual ability and
dignity, hid his declining cognitive functioning from us until we could
no longer have a real discussion about his condition.  When Jane cleaned
out his office, she found many tapes and books on “How to Improve Your Memory.”  It is sad to think about his isolation as he grappled with his
fears.  Would a positive test made it better of worse for him?  Sam’s
mother refused to utter the words “Alzheimer’s Disease”.  Whether saying it was too
frightening, depressing, or viewed as an act of betrayal to her husband,
we are not sure.  Would a positive test benefited or harmed  her?

Huntington’s Disease (HD), an inherited
neurodegenerative genetic disorder, leads to a different form of dementia in early adulthood accompanied by abnormal involuntary movements. There are currently no effective
treatments or cure.  While test for determining the presence of the HD gene was developed in the 1990’s,  most people with a history of HD in their families have chosen not to be tested.

Although AD is the most common cause of dementia,  there are more than 50 other causes of dementia. Recent publicity has highlighted the factor of concussions and other head trauma (as seen in football players)  in causing dementia.   Vascular dementia (also called multi-infarct dementia) is the second most common cause of dementia and can also occur concurrently with AD.  Neither AD of vascular dementia have effective treatments.  Medications for AD,  at most,  provide temporary and modest benefit.  Whether the earlier detection of AD and an earlier use of AD medications will benefit those who test positive is an area of medical exploration.

If there were effective treatments or, even better, a cure, there would be little debate about getting tested.   But this is not the current situation.  So the question remains for each of us who are older adults and in the demographic of increasing prevalence of AD, “Should I get tested?”  What would be your reasons to get tested?  Peace of mind if negative; If positive, time to address issue in your life while there is still time.  What would be your reasons not to get tested? If positve, diminish the quality of life in the remaining good functioning time left; If negative, it is only a 3 year window of predicted cognitive health.

We’d like to hear what you think about this important issue.
 

Updating advanced directives: Is your agent still capable?

We cannot over emphasize the importance of having a clear advanced directive.   Depending on the state where you live, your advanced directive can be a health care proxy, living will, medical power of attorney or a combination of these.  Other terms you might hear are medical directives and lifecare advanced directive.   It is important to know which forms are legally binding in the state where you live. 

Living wills were the earliest form of advanced directives but their limitations became evident quickly.  Having anyone, especially with a non-health care background, lay out what type of care he or she would want in various illness situations is extremely difficult.  People may think they would never want to be placed on a ventilator for artificial respiration but if they needed that treatment for a few days to survive after a motor vehicle accident they may be exactly the treatment they would want.  

The goal of all advanced directives is to give you more control over health care decisions during a time when you are not able to make the decisions for yourself.  The development of some form of health care agent or proxy was seen as a better method to achieve this goal than the living will.  The agent would be able to assess each unique situation and determine what the patient would chose if capable of choosing.

The use of an agent could be a temporary situation–such as a brief delirium secondary to an infection.  Two physicians would verify that in your delirium you lacked the capacity for informed consent to treatment.  Capacity means a person can appreciate the benefits, risk, and alternatives to the proposed treatment.  A person can be disoriented to the date or have memory deficits and still be deemed to have capacity if they can comprehend on a basic level informed consent.  Your health care agent would then be come the person consulted regarding your care.  Once your delirium cleared, you would regain control of the decision making process.
It is hard to predict when a temporary situation may occur, therefore, you should have an advanced directive made as a form of a decision-making  insurance policy.

Some illnesses may lead to a more permanent lack of capacity such as Parkinson’s Disease or Alzheimer’s Disease.   In this case, early on in the disease process, you need to create an advanced directive while you still have capacity.  Once a person has lost capacity they cannot create an advanced directive.

The most critical part of creating the advanced directive is deciding on who will serve as your health care agent.  Any adult can be your agent except those who are directly involved in providing  your care.   You can appoint only one agent but can identify a secondary agent if the first agent cannot perform the role.  This is to avoid debates among agents about what to do.  (In fact another goal of advanced directives was to avoid the confusion and debate among the patient’s relatives and friends about what should be done and how should decide) You do not have to appoint your next of kin.   You need to appoint someone you can trust to follow your wishes and someone who has the emotional strength for this important task. You may also need to explain to some of your relatives or friends why they were not chosen–this can be a touchy topic.   In order for your agent to perform the role effectively, you need to have an in-depth discussion of your goals, values, and wishes.  This can help you clarify your own thinking and also make the potential agent more comfortable in the role.

You should make multiple copies of your advanced directive.  Your agent, health care providers, and family members should have a copy readily accessible.

Now to the updating part.    It is worthwhile revisiting your advanced directive every few years.  Has your baseline health status changed?  (such as diagnosed with a chronic serious illness).  Have your goals or values modified as you have aged or your social situation has changed?  Perhaps, most importantly, is your agent still willing and able to fulfill the role?  Has your agent moved away?  Does your agent have health issues that might make serving as your agent overwhelming?  Is there someone who you feel would be better able to serve as your agent? (a grandchild or niece who is now a mature adult)  In most states, you can just complete a new advanced directive.  The one with the most recent date is legally binding.  Again be sure to let everyone know your change in agency.

We recommend the site http://www.nhpco.org for the National Hospice and Palliative Care Organization  (www.nhpco.org) to get more information about advanced directives.

The Anti-Bucket List

The Anti-Bucket List

The term,
“bucket list,”  has become quite popular
in recent years.   It refers to things a
person wants to do before they “kick the bucket.”   The 2007 movie starring Jack Nicholson and
Morgan Freeman has  two older men
traveling the world and having adventures before they die from cancer.  The book by Patricia Schultz, “1000 Places to
Visit Before You Die,” lists must-see sites. 
It has become so popular there are now spin-offs such as “1000 Places to
Visit in the United States and Canada Before You Die.” 

While the
idea of a bucket list is appealing on some levels, I don’t want to feel
compelled to experience certain things by a fear that I will have missed out on
something important.  I am very big on
making the day-to-day small things the best they can be.  Although I have been to many beautiful places
(Alaska, Canadian Rockies, Florence , Paris) 
 I will not be seeing the Great
Wall of China or Machu Picchu  and that
is OK by me.  At some point the hassle
and physical/financial expense of some activities overcomes their desirability
for me. (The equation may be very different for others. )  However, 
I will be thrilled every spring when my crocuses pop up in vivid yellow
and purple and will always get pleasure traveling to see my grandchildren.

Now in my
sixties, I have seen a change in my attitudes toward living and I have created
what I call my ”anti-bucket list,” things I never want to do again in my
life.  With the realization that my time
is finite came the impetus to not waste it on optional things and people I do
not enjoy.  I also worry less about what
others think and this is very liberating. 

Here are
some of my anti-bucket items –things I want to avoid for the rest of my life:

  1. Wearing
    uncomfortable shoes (also clip-on earrings)
  2. Staying
    for the second half of a play when I disliked the first half ( I found they
    rarely get better)
  3. Socializing
    with people who are petty and negative
  4. Standing
    on long lines
  5. Jumping
    in aerobics class  (also using weights
    more than 5 lbs
    )
  6. Finishing
    to eat something I did not like that much just because it’s there 
  7. Rushing
    to get somewhere on time when it is not critical (very  few things are)

Everyone who
I tell about the anti-bucket list laughs but appreciates the concept.  What would be on your anti-bucket list?

How does
this relate to health care and the elderly? 
Actually a lot.  As we age our
goals regarding quality of life and longevity usually undergo change.  Invasive tests and treatments that might have
seemed worthwhile 25 years ago may not look so beneficial now.  Our older bodies are less tolerant of
aggressive tests and treatments.    We
need to be clear what we want and not make choices solely to please
others.  Sometimes in health care it is
not the bucket list but the anti-bucket list that will make us the happiest.

Who’s Truth is It?

As a  geriatrician I
want to respond to the New York Times Op Ed (2/23/14) piece,  “When Doctors need to Lie,” by Sandeep Jauhar.  He talks about the conflict between the
paternalistic desire to do good even if it means overriding the patient’s
autonomy.


First do no harm. “Primum No Noncere.” Medical students are
taught this early in their education. I think I even remember hearing it before
I was a medical student. I may have heard it from my physician father. I think
it was he who also taught me that before the words “do no harm,” were the
words, “if you cannot do good.”   Telling
the truth was  reinforced as doing
good.  Honesty was always the best
policy.  Then I became a doctor.


“Doctor Brody,  there’s a new patient in the waiting room. He
came with his daughter who would like to speak to you before you see him.” My
medical assistant stands at the door to my office waiting for an answer. How I
will respond to this request will depend on many factors including the patient’s
cognitive function.


As a geriatrician I see many patients at various stages of
memory loss. Usually when the patient comes with a family member the memory loss
is not in the early stages.  This is one
reason the family member is accompanying the patient.  But this is not always the case. I have
performed initial assessments on patients who are in the moderate or middle
level of dementia whose families were either in denial or oblivious to the
cognitive decline, writing it off as normal aging.


Perhaps memory is not even the issue.  Often another physician has told the family
that their elderly loved one has another serious medical problem, such as
cancer, Parkinson’s Disease or a cardiac condition. They are not sure how to
handle their elder’s declining health and seek out a geriatrician who they have
read is better at this than other medical specialists.


I prefer to speak to the patient, this woman’s father,  first if just to satisfy myself that I will
not be overriding his need for privacy. 
At the same time, I do not want to get off on the wrong foot with his
daughter.   This is somewhat of a
juggling act.  She will be helping both
her father and me through some difficult times and I need her to trust and have
confidence in me. What would you want me to do if you were the patient? The
daughter?  


Here’s what I usually do. 
“Please bring the patient into the exam room and wait there with him and
ask his daughter to come in to see me in the consultation room.” I stand as the
man’s daughter enters my office. “My assistant said you wanted to speak to me
before I saw your dad. If you would not mind, I’d just like to say to hello to
him first and then I’ll let you fill me in.”


 


While I am asking her this, 
I realize she may not really feel she has a choice. She may not want to
agree but believing that  I am “the
doctor,” she may not want to come on too strong so she acquiesces.  If she is so overwrought that she has to
unburden herself, I will give her a feel minutes to describe her situation and
then go to see her father.


I am usually able quickly assess a patient’s capacity to
understand why he or she is in the office and  in this case it is true.  I then get back to his daughter while my
assistant begins to help her father prepare to be examined.


Regardless of the nature of the problem–dementia, cancer,
heart disease–the truth will eventually emerge. I find that patients with cancer
almost always already know.


Frequently it is the loved one who is having trouble coping
with a serious diagnosis. Over a few visits and phone calls, I am usually able
to convince loved ones that talking about this together with the patient, with
me there to help explain the facts, will be a relief for everyone.


With a patient who has dementia a different approach is
needed.  Dementia,  referred to
as the caregiver’s disease, frequently requires that small doses of truth be given over time to help
the loved ones finally see the “whole,” as best they can.   


Geriatrics almost always involves caring for more than one
person and realizing that to provide the best care for the patient, the needs
of the family must also be addressed. 
One area is in the sharing of difficult information.   I never think of myself as lying. I am
trying to do good without doing harm to anyone. 
By doling out the truth based on the needs of the patient and family, I
can meet both the demands of respecting the patient’s autonomy and doing no
harm.

Let us introduce ourselves

Why a blog? 

We decided to write this blog as a continuation of the work we started in our book, “The Voice of Experience: Stories About Health Care and the Elderly.”    We want to reach even more people and use this forum to discuss current issues in eldercare.  Our goal has always been to spark dialogue about how to provide the best health care for people as they age and we hope this blog contributes to this.

We write to impart some of the knowledge we have gained from family experiences, the patients and their families whom we treat, the residents and students that we teach, and family and friends who seek our council.  This blog is another way to share with a wider audience what we have learned through our decades of professional life. We use terms like the older adult or the elderly interchangeably.  These terms along with others such as “the aged” and senior citizens do not specifically or accurately define an age category.  The AARP (formerly known as the American Association of Retired Persons) accepts members after the age of fifty.  Social Security has a variety of ages for retirement beginning at 62 years.  We hear that 60 is the new 50 and 70 is the new 60.  This reflects advances in the health of the general population and a change in societal attitudes.  Jane remembers the grandmother of her youth with white hair, no makeup, plain dark dresses, rolled down stockings and sensible shoes.  She was shocked when much later in life she realized that the picture in her mind reflected the period when her grandmother was only in her early sixties—the age we are now.   The older adult, we will say, is 60 to the early 80’s.  The old old is 85 plus in years.   By percentages, the old old is the age group that is the fastest growing segment of the population.

We do not claim to know all the answers or have a crystal ball to predict the future. Any advice given in this blog is based on our experiences with other people.  It is practical and not clinical and not meant to replace care by your health care providers. Our own beliefs and values about life and death inform our thinking.  They may not be the same as many who read this blog.  What we want to share is our voice of experience that we hope will assist you and your family as you navigate the difficult task of providing health care for yourself as you age and for your elderly loved one.

Hope to hear from you soon,   Jane & Sam