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"An Important Message Regarding Your Rights"

This message and the story that goes with it is a cautionary tale about Health Care "rights" in general and the needs of our elderly kin in particular. It actually reads ""An Important Message Regarding Your Medicare Rights." The discovery of this message came when my father was admitted to the hospital with pneumonia over a year ago, (or rather, a few weeks later.) One would hope that importance would be attributed to the knowing an individual themselves upon a hospital admission, rather than having a systemic eye assessing them as another stereotypical elder.

However, if the person has the term "dementia" in their chart, you can't necessarily count on staff noticing or making differentiations regarding how confused the person actually is, or how oriented they are normally. They may just assume that disorientation in the hospital may be the way the person is, when it actually can be a sign of something more serious. This prejudice may especially be true if the person is coming from a nursing home, and has the aforementioned label in their paperwork.

If you are like me, you may be trying to be a caregiver from afar - helping your elderly relative from another state. And if you are also like me, in order to preserve your own life and job, there may come a time after repeated hospitalizations, that you may have to choose depending upon circumstances whether to come immediately each time your relative goes to the hospital.

The ideal situation would be that there would be someone there who could be a support, and yes be a watchdog, every step of the way, particularly if your relative has memory problems. (My father has short term memory problems but can become very confused with a hospitalization.)

This can be very difficult to do over the phone, but what I have learned is that one can't assume that documents will travel from the Nursing Home to the Emergency room - or with an admit from the emergency department to the hospital floor. One needs to call and ask each time, and one also needs to call and be persistent in talking to doctors. While you may have filed your "Health Care Representative," document, or Durable Power of Attorney with the Hospital, you can't assume that they will have it. It can take quite a bit of advocacy just to have doctors return your call.

It can be very important for your loved one to have contact with relatives every day, even if it just be by phone, as I tried to do 2x a day, and also to put my father on a conference call with my mother.

In this case my father had a pneumonia and became grossly confused during his stay. I was concerned because he was telling me things such as the aide was his wife, which I had never heard before, even when he had been very confused. Communications from nursing would frequently tell me that he was fine, although they didn't know him, and there wasn't even any consistency from day to day with floor staff to come to know him. I wasn't convinced that anyone was really trying to find out what his baseline was.

Luckily he was able to stabilize and return back to his nursing facility within under a week, but beyond that it took a few more days for him to become oriented to where he was.

Several weeks after his stay I received this document in the mail. I was surprised because of it's "importance" that it was unsigned. Staff had written on it "patient unable to sign" without saying why, and while I had called many times during his stay, assured they had had the paperwork describing me as "Health Care Representative," no one had taken the time to call me about this document or to explain the rights described in it. The document purports to be significant, and the signature line requests that a patient or representative sign to acknowledge that they have been given their rights - such rights as being able to decline certain treatments, or to challenge a discharge.

The staff had written that my father was unable to sign on it without explanation, and didn't see that it was important enough to record their own name. While my father is usually oriented to both person and place, his short term memory problems can make it difficult for him to both understand and make judgements regarding medical decisions. He also has hearing problems which become accentuated with confusion. I actually overheard a nurse ask while I was on the phone with him, if he would accept a blood transfusion if needed. ( A routine question, some people object on religious grounds.) I heard my father say "oh yes!" When I asked him what she had said, he said: "She asked me if I would accept a blessing."

When I spoke with the nurse on the phone she assured me that he had understood her correctly.

I was concerned with what appeared to be the casual manner that this notice was handled, particularly with my father's confusion, so I called the patient's relations department of the hospital. I was irritated when I was told by the representative..."

Standard procedure...we send them out this way every day....we send them to the 'next of kin.'"

I was only accustomed to that particular term in the context of bad television usually when someone had died. Of what use would it be to send a notice of rights to a relative, "the kin," several weeks after a hospital stay where the person was too confused to exercise them, and in particular if the person had died?

Upon further research into this issue I discovered that the message is apparently not taken so seriously. An Attorney from

The Center for Medicare Advocacy was able to explain the issue to me. It is unfortunately one of a number of laws concerning patient rights that are on the books but have no enforcement provisions. Hospitals can treat them fairly casually because there is nothing that will happen if they don't.

An elderly person in the hospital definitely needs a relative, a health care representative, or a guardian angel and this may be the least of the reasons to be concerned. Elderly people may become confused simply as a side effect to over the counter medications. Or disorientation can be a more serious sign of something like a delirium related to an infection.

Someone needs to be asking questions and it can't be assumed that staff will pick up on these issues. Another reason that hospitals can be hazardous to the elderly is due to the high rate a falls that take place there. These events are considered preventable, but hospitals don't necessarily take the effort to prevent them.

My mother who broke her arm over the holidays, became very confused after spending 4 hours in the emergency room. (Again I was traveling in another state, and attempting to stay involved over the phone.) Although she had come there for a fall,it seemed to be a very high risk that she might fall again in the hospital itself. When I spoke to the ER nurse she told me that although they were finished with her, it could be anywhere between fifteen minutes, to four hours - for transport to come to return her to her nursing home, which was directly across the street!

An important message regarding your rights? Message received...And the message is that if you have an elderly relative in the hospital they are going to need someone to look out for their rights and their well being.

Of Related Interest:

"Another Hospital Hazard for the Elderly" NY Times Blog "The New Aging" The article considers risk factors for delirium and how this may go unnoticed in the hospital.

"Hospital Errors Persist, State Probes Rare" 1.29.12 Connecticut Health I-Team

"Time in ER Sends Infection Back to Nursing Home"" Medpage Today Geriatrics January 24, 2012

"Avoiding Surgery in the Elderly" NY Times, 01.25.12 NY Times Blog "The New Aging" describes how studies indicate that surgery for Nursing Home residents may not be the best option.