Sunday, October 12, 2008

Please advocate for the elderly

This is going to be a hard post for me. I am very sad.

The father of a very dear friend of mine died this past Friday. The father was 84 years old. He died in a nursing home. He had no underlying disease.

What I am posting is based upon what my friend (the son) told me. I have no first hand knowledge. I suspect that if I was present, I would not have kept my mouth shut and I would have been more of an advocate for this very good man.

My friend's father suffered for years. I will provide some background:

About ten (10) years ago, the father suffered a bleed in his brain needed neurosurgery. The family lives in Champaign County, Illinois and they rely on Carle Clinic Association.

1. Carle Clinic Association did not have a neurosurgeon who could perform the brain surgery. What? I believe that my friend's parents were members of Health Alliance Medical Plans (HAMP). Fortunately, a "visiting neurosurgeon" came downstate from Chicago and performed the surgery at Carle Clinic in Urbana, Illinois.

But, I would have asked whether my dad could have been taken by ambulance to Chicago instead of having a visiting neurosurgeon perform serious brain surgery on my dad at Carle? I even suggested that to my friend.

Would sending the father to a Chicago hospital have meant less money to Carle Clinic?

2. My friend's father survived the brain surgery. However, he had some obvious difficulty ambulating and speaking.

There was no significant therapy to help the man resume strength and function. Of course not. If Carle Clinic does not have a neurosurgeon then they probably do not have the proper follow-up care for a neurosurgery patient.

3. No one in that man's family advocated for the man to get physical and speech therapy post neurosurgery.

You have to give the wife a pass on the responsibility. But, there was 3 sons and a daughter in law. One son and the daughter-in-law are attorneys! Great advocacy, huh? I am an attorney and advocating for the less fortunate or the vulnerable is like second nature for me.

(post script: Recall that the attorney son and daughter-in-law are both attorneys for Dr. Chris Dangles and Carle Clinic Association. And the attorney son spoke directly with my attorney Bill Moran III related to my professional disciplinary matter. That discussion took outside of my presence. And thereafter, (a) Attorney Bill Moran refused to let me discuss my ankle surgeries as a contributing factor of my depression and (b) the law firm for Dr. Chris Dangles mysteriously obtained my mental health records from Dr. Dangles.)

After the brain surgery, the gentleman also survived prostate cancer. He was treated at Carle Clinic Association.

In the last five years, the man has become more and more weak. The family accepted the weakness and accompanying reduction in quality of life as an inevitable part of aging.

I tried to make gentle suggestions because I was facing a lot of the same issues with my 74 year old dad fighting colon cancer:

1. Talk to the doctors and specifically ask what the extent of the dad's capabilities and limitations.

2. Ask the doctors what you as the adult child can do to improve the prognosis (special foods, encourage brain stimulation with card games, get the dad out of the house for physical therapy).

3. Whenever my dad had a doctor appointment, I was there. I made sure that no one - not a receptionist, not a nurse, not a doctor mistreated, demeaned or otherwise treated my dad with less than 100% respect and care.

For example, my dad has a port for his chemotherapy. There is only one (1) nurse at Duke South Clinic that has the knowledge to be able to access a port. Sometimes my dad's skin was very destroyed by chemotherapy.

The hematology (blood) and oncology clinic at Duke South does not have a nurse who knows how to access ports!? Okay. But if dad is at that clinic and they want a blood sample then I demand that they get a nurse who can access the port. The integrity of dad's skin is too compromised and his arm veins are too tender for a nurse to be poking around with a needle.

No port access simply means no blood sample. It's a simple as that.

4. Whenever my dad is in the hospital, I am there with him nearly 24/7. I certainly make sure that I am present whenever he is to be evaluated by a medical professional.

When in-patient physical therapy was ordered, I made sure that I was present for every session. I made sure that dad was cooperative and safe.

If one doctor recommended a consult, I made sure that there was follow through.

5. At my dad's latest hospitalization (which was ironically at the same time that my friend's dad was hospitalized), there was some suggestion that dad had a "swallow problem." Again, ironically, my friend's dad had the same problem.

My friend accepted the "swallowing problem" as a natural part of aging and a function of dementia.

I told my friend how I handled the issue - I was there for every swallow test. I knew that there was a vicious cycle of dad being on a liquid diet (because of the "swallowing problem") and my dad being too weak to swallow.

I pushed for the more sensitive radiography test for swallowing.

My goal was to get dad eating to get his strength back.

My friend, unfortunately, decided to handle the situation in a more "the medical experts know best" way.

6. At my dad's latest hospitalization, there was some question about who would take care of dad post hospital discharge. There was no medical reason for a nursing home placement. The only purpose of a skilled nursing care home would be physical therapy. I asked the medical staff how often dad would receive PT and how I could be assured that dad would be pushed to get up and move around.

And, dad's urologist expressed concern that if dad was in a nursing home, he would be catheterized for the convenience of the nursing home staff. Catheterizing causes urinary infection. Older men don't need UTIs.

I determined that my dad would come home and I would help mom care for him. It has not been easy. I have cleaned bedside commodes, adult diapers, adult rear-ends, beds.

I have temporarily switched roles with my dad. I have been the strong one. I have encouraged dad, lectured dad, fed dad and even cried with dad.

I have been here 24/7 with dad. And I have seen his courage everyday. Dad has faced a serious illness, the chronic side effects of chemotherapy. And my dad has learned to trust himself and his body again.

So back to my friend and his dad. My friend's family placed the man in a nursing home. There was no underlying illness. The man received medication for dementia and high cholesterol.

After a period of time (a week or so), my friend's family was called and told that Medicare would no longer pay for the nursing home care because the man was not improving. I asked my friend what aspect of his dad's health was supposed to improve. My friend explained that his father was to get PT and speech therapy. And there had been no improvement per the therapies.

I told my friend that the Duke physicians and PTs told me that I would have to be present at the nursing home and make sure that the PT was actually performed. Older patients are often not motivated to get up and exercise. And if the older patient rejects PT, the therapist ill move to the next patient. The PT will not spend time cajoling the patient into engaging in PT.

My friend rejected my advise to spend more time with his dad at the nursing home to assure PT
and speech therapy and to generally be an advocate for his father.

Money was not an issue. But, my friend's family decided to cease all therapies after Medicare stopped paying. And within days thereafter, the family decided to remove the father from the dementia and cholesterol medications. The man had a new infection and the nursing home stopped the antibiotic. The man was not swallowing and as such he was not eating.

The family decided to just let the man die.

After my friend told me of the family decision, I thought about my father. I wondered whether my friend's family would have let my dad die. Or would my friend's family (a) advocate for my dad as I had and (b) spend extensive time and energy caring for my dad as I had?

And, moreover, I wondered how I would have handled my friend's dad's health problem. Is it an issue of integrity and character? Or is it too much to expect family to devote a portion of their lives to caring for a sick family member?

I have given up a lot as I care for my dad. (Not the least of which is the Illinois legal profession considers me "financially irresponsible" because I take car of my dad instead of getting a paying job.) But, I have gained much more than I have lost. I have gained good, quality time for and with my dad.

I beg you all to chose your elderly parents.

** Advocate for your elderly parents' health, medical care and lives!! They are worth the time and effort.

** Ask doctors over and over. Find out what the expectations and limitations are for your elderly parents.

** Push your elderly parents to choose life. Sure they are sad, maybe even depressed and simply worn out. Give your elderly parents a reason to live.

Your parents did the same for you.

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