Aging Capriciously

This is the final article in my series on health care.  This article has been preceded by nine other articles.  There is no need to read them in order but if you have not read the other nine, you will be missing a good deal of information that just might help you live longer, healthier and happier.  As I finish this series on health care, I am gratified that over the ten weeks I have been writing about the subject, I have found only more evidence that confirms the advice and opinions I have given in this series.  In this final article, I want to talk about how important it is to have someone as an advocate when you enter the health care system in this country.  Let me tell you a personal story that illustrates this point very well.

Several years ago, my sister lay dying in hospice care.  Hospice care is a gentle humane way of helping ease out a person who is at deaths door.  By gradually increasing their doses of morphine, the patients’ bodily functions will eventually slow down and finally cease.  If a patient is accepted into hospice care, it is assumed that they are terminally ill.  What might be a slow lingering painful death without hospice, becomes a respectful and hopefully painless termination of vital processes and death.

My mother went into hospice care in 1994 and died in three days.  She had a terminal infection which was beyond treatment.  We (sisters and brother) sat with her until she expired.  My sister Sheri was also accepted into hospice care in 1999.  She was only fifty-one years old.  She was considered terminal due to her advanced cancer.  As a family, we began another vigil waiting for my sister to succumb to the cancer and morphine.  However, things did not go the same path with my sister.

We noticed that she would seem to come in and out of consciousness.  Often, when she came out she would seem quite rationale and even energetic.  The nurses did not seem to pay much attention to these episodes.  One day, the morphine drip somehow came unplugged.  My sister became quite lucid and wanted to know if it was time for her to do taxes.  She did not seem like a patient near death.  We demanded that they take her off the morphine.  This met with much resistance as I assume they thought my sister would be in great pain and that we would be the instigators of a now painful as well as inevitable death.  Such was not the case.  My sister revived and seemed very healthy.  In a day or so she was out of the hospital.  She moved in with my sister and lived another three years before she passed away in 2002.  The next three years were not always good ones for my sister but we never regretted the decision to take her out of hospice.

The point of this story is that if we had not been siting vigil at my sister’s deathbed, we would not have been able to prevent a premature death.  This is merely one example of the value of an “advocate” when you must go to a hospital.  I am sure everyone reading this blog has at least one example that highlights how important it is to have someone as an advocate when you are in the hospital.

A health advocate is a family member, friend, trusted coworker, or a hired professional who can ask questions, write down information, and speak up for you so you can better understand your illness and get the care and resources you need – giving you a peace of mind so you can focus on your recovery.

Nurses, doctors and staff all want to do a good job and provide wonderful healthcare.  However, our health care system is under tremendous pressure to cut costs and reduce expenses.  This translates to less time available to care for each patient.  Less time that a nurse or doctor can spend with each patient.

An alarm might go off in an intensive care room but not be noticed for quite some time.  I have personally observed many times when a patient needed to call someone for assistance but no one came.  Unable to get out of bed, a patient may have to wait a long time before someone is finally able to help them.  In many cases, an advocate in the room can help a patient with minor personal needs.  If more severe needs exist, the advocate can be of assistance if finding someone to help and making sure that the patient needs are not overlooked or even forgotten.

Advocates assist people with making sure their rights are respected. They help consumers to resolve complaints about health or disability services. They operate independently of government agencies, the Health and Disability Commissioner, and the funders of health and disability services.

Another function an advocate can provide is to stand up for the patient when needed.  Most of the time when we are feeling sick or hurting, we are in no position to stand up for what we need or want.  In such instances, a patient only wants the pain to go away.  Hospitals and health care providers often have needs that transcend the needs of the patient.  The patient that must play second fiddle to a variety of administrative and financial procedures.  Another example might clarify this.

Three years ago, I went to the Mayo Clinic for prostate surgery.  The surgery went fine and I was sent to a room for recovery.  The night passed as most do in a hospital.  Interminable interruptions for pills, blood tests and getting up to walk the surgery unit for exercise.  The night nurse was polite and helpful.  She left sometime after 7 AM and a new nurse came on shift.  She immediately informed me that I had to be out of the room by 12 PM and I should try to do more walking.

I had thought that I was doing a great job of getting mobile but I had not met my new nurse’s standard.  I started to try to walk more and meantime I became fixated on the clock in my room.  I still felt like shit as I watched the hands on the clock move inexorably towards 12 PM.  I am sure that Cinderella did not feel as bad as I felt since she would only be outed as a pauper while I be would be viewed as weak, wimpy and unable to meet standards that every other male prostate victim in America had met.

Fortunately, when the witching hour arrived, I had my advocate intercede on my behalf.  My wife Karen who had kept vigil with me this whole time told them in no uncertain terms that I was not going anywhere until I felt better.  It was now 12 PM but with her assurance, I fell into a deep sleep.  I awoke two hours later and immediately saw that the clock hands were on 2 PM.  Somehow, this extra sleep time was all I needed.  I practically jumped out of bed and started grabbing my clothes.  Karen who had been napping in a chair beside my bed woke up.  I said, “Lets go, we are getting out of here.” She replied, “but we are not packed.”  I replied, “I don’t care, I want to get out of here now.”  Karen grabbled whatever we could and we made the 2-hour drive back to Arizona City from Scottsdale.  I was not sure how I was going to handle two hours in the car post-surgery but I did not care.  I wanted out of the Mayo Clinic and back in my own bed.  To this day, I wonder how much stock my second nurse had in the Mayo Clinic.

My rule now is this.  I will never let a friend or relative go to a hospital for treatment (regardless of how minor) by themselves.  If I have a friend who has no one to go with them, I will be their advocate.  If Karen needs to go to a doctor, clinic or hospital for any reason, even a hangnail, I will go with her.  Hospitals can be places of healing but they can also unexpectedly be places of death.  No one should assume or take for granted what might or might not happen at a hospital.  I could provide many more examples of unintended consequences that happened to friends and people we knew when they went into a hospital.  Better to be safe than sorry.

Patient advocates can work to help patients and their families by providing a variety of services, depending on the patient’s needs and the advocate’s area of expertise. They may help them to secure health care, manage insurance, or make treatment plan decisions.

Your advocate is your best health care plan.  Your advocate can have your back when you are under the weather or unable to defend yourself.  Your advocate can help make sure that the hospital and its providers live up to their own expectations.  Your advocate can help watch over you when everyone else is busy with other patients or administrative tasks.

Pity the poor person who goes into a hospital without a personal advocate.

This now concludes my series on health care.  I hope my blogs on health care have been useful and that you have found some ideas that will help you to lead a healthier, happier and more robust life.

Time for Questions:

Can you think of a time when you wished you had an advocate?  Were you ever an advocate for someone else?  What role do you think an advocate should play in healthcare?  Do you agree that everyone needs an advocate?  Why or why not?

Life is just beginning.

“For he who has health has hope; and he who has hope, has everything.”  — Owen Arthur