Two weeks ago, at a local hospital, I taught a two-hour continuing education course about advance directives for an audience of hospital administrators, nurses, and social workers.  “Advance directives” are documents such as the Living Will, the Do Not Resuscitate Order (DNR), and the Health Care Power of Attorney.  A primary goal for people who sign these forms is to avoid unwanted resuscitation and other “heroic measures” when there is no hope of recovery and returning to an enjoyable life.

Often, older adults have told me stories of doctors and/or hospital staff who ignored the refusal of life-prolonging care wishes of a now-deceased loved one.  They tell me that they had insisted that their loved one did not want life-prolonging treatment, but nonetheless a doctor ordered feeding tubes, ventilators, and other life-prolonging measures.  I have wondered—is this fear of wrongful resuscitation real or imagined?  The short answer appears to be that the fear is real.

Recent studies show a real “lack of regard” for patient’s preferences in life-sustaining treatment decisions by doctors and hospital staff (National Quality Forum: Safe Practices for Better Healthcare 2009 Update). 

Another 2008 published study (Pieracci) reviewed life-sustaining treatment decisions that occurred between hospital medical staff and their patients and/or their health care agents under advance directives.  The conclusion of the study is frightening.  “Despite patients’ wishes, the indiscriminate use of technology and the lack of communication between patients and health care providers have been shown to result in unnecessary pain and suffering for patients.”  In addition, the study notes that the medical costs of prolonging a dying patient’s life via artificial ventilation and intensive care often range between $11,000 and $36,000.  Another study entitled Support demonstrated that 46% of dying patients received mechanical ventilation in the last three days of their lives.  Many of those individuals never wanted to be on a ventilator—yet they were forced by their physician’s decisions to live on in a state of hopeless suffering.

What can you do to prevent “wrongful resuscitation” from happening to you or someone that you love? 

• Create a written advance directive such as a Health Care Power of Attorney, Living Will, and/or a Do Not Resuscitate Order (DNR) in appropriate circumstances;
• Insist that your advance directives are placed in all of your medical records and that your physician is well aware of the existence of such documents;
• Have “the talk” with your family and doctor to make sure that everyone is very aware of your feelings regarding life-sustaining treatment in the event there is no hope of recovery. This will allow you to get all of your family members “on the same page”; and
• Choose an “advocate” as your Health Care Power of Attorney and/or surrogate decision maker.  That advocate is someone who can look a medical professional in the eye and insist that your wishes be carried out.  I recommend that you look through your family and friends and choose someone who can insist that your desire regarding life-prolonging treatment be respected by the medical profession. 

It’s important to know that there is substantial legal authority for health care directives to be followed.  In fact, it is now considered to be a “sentinel incident” when a hospital performs a wrongful resuscitation.  The Center for Medicare and Medicaid Services (CMS) has emphasized that patients have the right to make decisions regarding their long-term health care, and that those decisions should be respected by physicians and hospitals.

In Illinois you can find the statutory Health Care Power of Attorney at http://www.idph.state.il.us/public/books/PwrOf.PDF .  If you are not in Illinois, just go to Google and type in your state’s name and the words, “health care power of attorney.”

Ethan Law, Dr. Van Tharpe, and Rick Law

When I was 17, my mentor, Don L. Dise, gave me the book Psycho-Cybernetics by Dr. Maxwell Maltz.  I learned one of the most valuable of life lessons.  We can choose how to think about our own thinking.  In addition, we can choose how we respond to life’s circumstances.  How we think about things will then determine our actions and our reactions.  Our actions and reactions will change our circumstances for the better or for the worse.  The bottom line is that we have the power to change our lives by choosing to improve our thinking and responding.  We have personal responsibility for choosing our thoughts and our actions.

My son, Ethan, will  graduate from high school this month.  Recently I asked him to come with me to  the “Peak Performance 101Workshop” at the Van Tharp Institute in North Carolina.

The focus of the class was on personal responsibility and improving one’s responses to circumstances.  “Respond-ability” is Dr. Tharp’s phrase for better living through better thinking and response.  The respond-ability session was kicked off with a teaching entitled “Rules for Being Human.”

• You will receive a body.  You may like it or hate it, but it will be yours for the entire period.
• You will learn lessons.  You are enrolled in full-time informational school called life.  Each day in this school you will have the opportunity to learn lessons.  You may like the lessons or think them irrelevant and stupid.
• There are no mistakes, only lessons.  Growth is a process of trial and error, of experimentation.  The “failed” experiments are as much a part of the life process as the experiment that ultimately “works.”
• A lesson is repeated until learned.  A lesson will be presented to you in various forms until you have learned it.  When you have learned it, you can then go on to the next lesson.
• Learning lessons does not end.  There is no part of life that does not contain its lessons.  If you are alive, there are lessons to be learned.
• “There” is no better than “here.”  When your “there” has become “here,” you will simply obtain another “there” that will again, look better than “here.” 
• Other people are merely mirrors of you.  You cannot love or hate something about another person unless it reflects to you something you love or hate about yourself.
• What you make of your life is up to you.  You have all the tools and resources you need.  What you do with them is up to you.  The choice is yours.

It was exciting for me to share these truths with my son as he prepares to walk out the door of his family home to begin his own life of responsibility and respond-ability. 

I highly recommend that if you wish to improve your respond-ability, that you consider reading the book Psycho-Cybernetics by Dr. Maxwell Maltz, recently updated by marketing coach Dan S. Kennedy.

Last weekend I was blessed to attend the Chicago preview showing of the HBO special documentary entitled “The Alzheimer’s Project.”  This is an exciting joint project of the Alzheimer’s Association and HBO which is designed to give us all new insight and hope that we can push back against Alzheimer’s Disease (AD).  For those of us in Chicago the documentary was even more personal, in that it included a live interview with Dr. David Bennett of Chicago’s own Rush Alzheimer’s Disease Center.  The medical staff and researchers at Rush Hospital are one of the premier teams investigating Alzheimer’s Disease.  Dr. Bennett is the director of a large group study entitled “The Religious Order Project.”

 “The Alzheimer’s Project” focused on some individuals with early-onset Alzheimer’s, which affects people who are younger than 65. We learned several new and startling things.  Most people are aware that Alzheimer’s Disease is a brain disease wherein brain function is progressively destroyed by the emergence of plaques and tangles. Surprisingly, there are individuals whose  autopsy reveals the presence of the AD plaques and tangles, but the individual did not exhibit memory loss during their lives—some people continue to function in a normal manner.  This phenomenon is not yet understood but is currently being referred to as “cognitive reserve.”  The presence of this cognitive reserve gives researchers a hopeful avenue of new investigation. 

In addition, part of the question-and-answer portion of the program focused on current drug therapies.  Today there is not a drug which cures or delays the disease.  Our current drug therapies are limited to enhancing the remaining brain function during the continuing degenerative progression of the Alzheimer’s Disease.  Dr. Bennett told the audience in Chicago that there are numerous medical research and drug trials going on right now which demonstrate new possibilities to not only delay but possibly create a vaccine against Alzheimer’s Disease. There is a high probability that medical science will have these enhanced weapons available to the public within the next five to ten years.  This is great news of a brighter view of aging for  millions of people who would otherwise face the prospect of AD. 

If you missed this wonderful program, you can watch each of the documentary films individually online, by streaming them to your computer through HBO’s website. I highly recommend that you click here to see all of the resources that you can download and stream from the HBO program entitled “The Alzheimer’s Project.”

I recently heard a moving story from a widow who had served as her husband’s primary caregiver for sixteen years.  She spoke with both passion and pain, describing her caregiving sojourn as “the loneliest time of my life.”  For this reason, she wanted to speak out and be an encouragement to others who might be on the same road.

Her husband had been diagnosed with Huntington’s Disease, a long-term illness that strikes at an average age of 39.  To paraphrase her words, “My husband had the diagnosis, but the disease took him away from me.  I no longer had a lover, a soul mate, someone who could really share with me.  Our days as a couple were at an end.”  During the time of her husband’s increasing illness, he was not able to hold her, kiss her, or care for her for at least eleven of the sixteen years of his disease.

She shared that during his illness, she had to sacrifice her own feelings for the benefit of her spouse.  An area of greatest hurt was the abandonment of her husband by his own extended family.  Her burden could have been lighter if family and friends had stayed more involved.  She related that when she called her husband’s brothers and reminded them of how important it was to her husband to be able to see them from time to time, they responded with, “I just can’t stand to see him that way.” 

“I was a widow with a living husband,” she stated with sadness.

It seems to me that we could all do a much better job in helping others carry the load of long term illness.  We need to be more aware of what family members are going through during what may well be the loneliest and most difficult time of their lives.  We need to come alongside them and provide sympathy and support.

On a more positive note, I learned of another man who has been diagnosed with Huntington’s Disease and whose male buddies have rallied around him.  They have intentionally gone out of their way to work together to take this man out of the house and to sporting events with them.  They have specifically set up time to talk with his wife to make sure they understand his care needs.  They work together to make it possible for him to go on their annual fishing trip.  These men are an extraordinary example of what it means to truly be a friend. 

I hope that each one of us would choose to follow this model of true friendship if someone we know and love develops a long term illness.

**The following links provide more information about Huntington’s disease support groups, or support groups and services for caregivers:

Huntington’s Disease Society of America Illinoise Support Groups

Today’s Caregiver

The Family Caregiver Alliance

Last week I wrote about my experience attending the Illinois State Conference for Huntington’s Disease, the Huntington’s Disease memory quilt, and the Team Hope Walk for a Cure on May 17th, in which I and many of my firm members will be taking part. This week I want to share more about the specifics of this degenerative disease and some of the amazing people who live with it every day.

Huntington’s Disease (HD) causes brain cell atrophy, which eventually destroys attention, memory, liver functions, and executive functions (such as organizing, prioritizing, controlling impulses, and monitoring self-awareness). The current model of HD treatment and intervention is a battle to try to delay the progress of the disease. There is no known cure.

Most of the speakers at the conference were outstanding medical and neuropsychological experts, and I felt a little awkward speaking to the audience about the “elder care and disability journey” when the average age for the onset of HD is only 39. After symptoms appear, the disease trajectory is a long 18-year decline.
 
HD may strike only 1 out of 10,000 persons, but it often affects 50% of the family members who are genetically vulnerable. Some of the speakers spoke about how they initially tried to deny their symptoms—trying to hide their involuntarily moving legs.  They spoke of the loss of their jobs, their friends, and often other family members.  Families of those with HD symptoms live with the terror of seeing their loved ones suffer, and their own fear that they too will get the disease.  For others, the disease has given them unique strength and perspective; one person boldly announced, “I am not dying of HD.  I am living with HD!” 

Everyone agreed that persons with HD must exercise both the body and the brain to keep active and maintain a better quality of life.  In fact, one presenter praised the Nintendo Wii video game for keeping their adult son mentally and physically fit.  These same parents have found it fun and helpful to join their son by challenging him to various Wii Fit competitions.  They credit this video game activity with maintaining their son’s mental, motor, and physical health.  From one doctor visit to another the doctor has stated that their son’s decline has actually stopped!  The mom enthusiastically exclaimed, “What better way to spend time with your HD-affected loved one than laughing, playing, and challenging each other with Wii Fit.  You just can’t be too old to play the Wii Fit game. We wish that we had bought stock in Nintendo!”

The good news is that there is hope for a cure in this generation.  Dr. Richard Morimoto, Ph.D., of the Northwestern University, a National HDSA Coalition for the Cure scientist, reported in his keynote address entitled “From Bench to Bedside:  New Discoveries and Therapeutic Candidates for Huntington’s Disease” that due to the identification of the gene responsible for the mutation and the ongoing investment of pharmaceutical companies into research and development, there is hope for a cure in this generation. 

Let us pray with every member of a Huntington’s Disease family that this hope will be realized.