Feb 3, 2010

Doctor - Patient - Caregiver American College of Physicians Position

I learned years after the fact that my mother had gone into her doctor's office and started going nuts when they told her she had already gone to her doctor's appointment earlier in the day. In fact, she had gone to the appointment, but forget.....
By Bob DeMarco

The American College of Physicians has issued a position paper to help guide physicians when confronted with the doctor - patient - caregiver relationship. Don't complain, better late than never. Maybe.

You are probably thinking about time. Not exactly. This paper is really about how doctors can deal with ethical challenges when the caregiver is included in the equation.

This quote should give you an idea about the current state of affairs and doctor attitudes.
"Although we don't want anything to interfere with the physician-patient relationship, which is still key to all health care, we have to work out ways that caregivers are a part of this process too -- as long as the patient agrees," Dr. Hood said.
In other words, hey, we better get on the ball when it comes to caregivers, but don't forget to cover your butt.

While I was reading the paper it reminded me of a situation I found myself in when I first started caring for my mother.

Here is a bolded sentence in the American College of Physicians position paper that caught my attention:
The physician should routinely assess the patient’s wishes regarding the nature and degree of caregiver participation in the clinical encounter and strive to provide the patient’s desired level of privacy.
This refers specifically to the Health Insurance Portability and Accountability of 1996 Act (HIPAA). The law allows health professionals to share relevant health care information with the family caregiver if the patient agrees to, or does not object to, the disclosure.

And now, I'll describe a situation that occurred more than two years before my mother was "officially" diagnosed with Alzheimer's disease.

I learned years after the fact that my mother had gone into her doctor's office and started going nuts when they told her she had already gone to her doctor's appointment earlier in the day. In fact, she had gone to the appointment, but forget. She became so upset that they had to put her in a room, on a bed, and sedate her. When she calmed down they let her go home.

Did the doctor or anyone in his office inform me of this situation? NO. I was listed in her records as the emergency contact and they had my phone number.

How did I learn this happened? Well, almost three years after the fact, and after I had fired that doctor, I ran into the nurse that assisted him in his office. She proceeded to tell me about the incident. To say the least I was shocked. The nurse was also shocked. So shocked that she remembered the incident as if it had just happened.

This is how the Health Insurance Portability and Accountability (HIPAA) works. In this case, my mother had the right to her medical privacy. I asked the nurse -- did they ask my mother if she wanted them to call someone? As far as she knew, the answer was NO. When my mother was sufficiently calm, they sent her on her way. This included driving her car to get home.

Now this brings me to a more important issue. Do you have the correct medical power of attorney in place? A legal document that allows you to make all medical decisions on behalf of your loved one. The document that empowers you to talk on behalf of your loved one to the doctor, doctors in the hospital, and to your healthcare insurance company? To legally get information when you need it, and right now?
I bet the majority of you will answer NO.

The correct document might be more difficult to obtain than you think. When I asked Humana healthcare for the document, I learned that in order to get the correct document executed in Florida I needed to go to court. What is the law in your state? Have you contacted your healthcare provider and asked them for a copy of the document you will need? Have you executed the document and gotten it signed and notarized?

In our case, I took the Humana document, reworked it, and had an attorney friend of mine rework it to the point that it was legally binding. I then executed the document and sent copies to Humana and our personal care physician. Of course, it took three tries before Humana finally told me they had the document in my mother's file and everything was copacetic. In case you are not familiar with the word copacetic, it means "something is in excellent order or satisfactory". I believe this is the correct word in this situation and this is why I chose it.

I would recommend that you look into this as soon as possible. I intend to check with Humana and our personal care physician to insure that the document is still in the right place and still in effect.

Perhaps some of the readers of this blog that are in the healthcare industry could respond to this, share experiences, or provide us with additional advice. If so, please use the comments box below this article.

If you would like to write an article around this issue please contact me.

The American College of Physicians has issued a position paper designed to help physicians navigate the doctor - patient - caregiver relationship. The paper is a good step in the right direction. However, I found it devoid of any real feeling or emotion. Colder than ice. Not really what I expected to read.

The position papers does explain the law, the rights of the sick person, and describes the role of the caregiver. Does it really do what is necessary to insure a good doctor -- caregiver relationship? Will it encourage doctors to take a more active role with the caregiver? Will it encourage doctors to get educated so that they can both communicate and assist caregivers?

I'll let you decide. Here is the abstract as it appears at the beginning of the position paper.


Family caregivers play a major role in maximizing the health and quality of life of more than 30 million individuals with acute and chronic illness. Patients depend on family caregivers for assistance with daily activities, managing complex care, navigating the health care system, and communicating with health careprofessionals. Physical, emotional and financial stress may increase caregiver vulnerability to injury and illness. Geographically distant family caregivers and health professionals in the role of family caregivers may suffer additional burdens. Physician recognition of the value of the caregiver role may contribute to a positive caregiving experience and decrease rates of patient hospitalization and institutionalization. However, physicians may face ethical challenges in partnering with patients and family caregivers while preserving the primacy of the patient-physician relationship. The American College of Physicians in conjunction with ten other professional societies offers ethical guidance to physicians in developing mutually supportive patient-physician-caregiver relationships.

The above is exactly as it appears in the original document. One great big, long run on.

If you have the time, please go and read the document and let me know your reaction.

Family Caregivers, Patients and Physicians: Ethical Guidance to Optimize Relationships
Position Paper of the American College of Physicians

Does anyone on this list know of existing courses that teach or educate doctors on methods and strategies to communicate with caregivers? That teach doctors about the "psyche" of the Alzheimer's caregivers and how to assist them when the diagnosis is made?

Does the Alzheimer's Association have a program of any kind to work with doctors and increase their understanding of Alzheimer's and the Alzheimer's caregiver?

Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,200 articles with more than 9,000 links on the Internet. Bob resides in Delray Beach, FL.

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