A blog post about the imperative to offer patient choice

[Donna Thomson]

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Happy Monday evening, everyone! Sending love to all my friends here at CN! xo Donna

[Earth Mother 2 Angels]

((((((Donna))))))

Sad stories in your examples of patient choice over common sense.

Your friend, whose foster daughter wasn't suctioned via her trache, should have had a lawsuit against the nursing facility. This is a mandate for her daughter's care, I would suspect, to be suctioned, because it is a life preserving medical procedure. The foster daughter, a teenager, was still a child/minor and not really eligible for having patient choice. Parents make choices for their children, who are minors, because parents know what is best.

Patient Choice or Indifferent Care Givers?

Having said that, how do we know that the daughter shooed away the nurses, when they came to suction her? Are there witnesses? Is it possible that the girl didn't get suctioned, because the nurses chose not to do it, or were too lazy to do it, too incompetent, uncaring, or busy to do it?

Your friend, whose Mom with Alzheimer's didn't get bathed, because she didn't want it. Right. This is just an excuse, blaming the patient, who may be obstinate or difficult to handle, so the nurses don't want to deal with the patient. And they don't. Then they make up some cockamamie story that the patient refused. I'm not buying it.

It is their job to recognize the difference between not wanting Jello, and not wanting a bath or a suction. I doubt that anyone with a trache "wants" to be suctioned. But it's life or death, which is why they have a trache. A teen isn't likely to make that connection, particularly if she has a neurological impairment. And an Alzheimer's patient doesn't have a clue about anything, so making choices is moot. What if she said, "I want to jump out this window and fly?" Patient choice? Let her? That's how absurd that is to me, when it comes to vital health concerns, like hygiene and trache suctioning.

Personal Choice vs. Patient Choice

Like you with Nick, we make choices for Jon (and Michael) based upon what we believe is best and right for them. And Jon and Michael trust us to make those choices for them, which is clear from a lack of continuous or overt objections on their parts. They aren't capable of making life saving decisions.

On the rare occasions when Jon fusses with us over something we have to do (generally related to his blood draw, cath change, or our suctioning) we explain to him that we have to do this for him to keep him out of the hospital. He reneges. When Jon battles me about giving him his bed bath, I just remind him that he has to be clean to be healthy, that it feels good to be clean, and that I'm going to bathe him regardless. Once I start effusing about how handsome he is, and good he smells, and I give cuddles and kisses, he relents. He has no choice in these things.

But, what movie he wants to watch, what shirt he wants to wear, what lights he wants on and off, what music he wants to listen to, all of those things are his choice. Sometimes he wants us to sit next to him, hold his hand, and watch his movie. Sometimes, he tells us to sit on the loveseat. So we do.

To me, patient choice goes as far as the decisions necessary to keep them healthy and safe. At that point, those choices, especially for elderly and neurologically impaired individuals, are best left to family members and care givers.

Patient Choice and My Elderly Neighbors

I will offer the example of my 89 year old widower neighbor, whose oldest son (a couple of years my senior) lived 5 minutes from us. He never visited his dad, assuming that the ladies who had befriended the man were caring for him. These ladies "dated" the elderly man for some years after his wife passed, but no one lived with him or looked after him, and he was frail and failing.

I used to meet up with the old man at his back gate, with his dogs, and we walked and chatted. We'd been neighbors and friends for over 30 years. I made floral arrangements for his wife's memorial service. He attended Michael's service. We were close.

I could see what was happening to him, but he insisted he had plenty of help and was fine. Jon was in and out of the hospital and home with so many problems during these years that I wasn't of much use in helping our friend.

When he fell on his driveway and paramedics were called by neighbors, who saw him fall, I ran out to talk to the paramedics. His son was unavailable. When his son brought his dad home from the ER, I told the son that I felt it was important to get his dad into an assisted living facility or hire a full time caregiver. I knew the man had money, as his sister-in-law had left him quite a huge sum when she died. He had told me this a year before, on one of our walks.

The son said to me, in a "it's none of your business" manner, "He doesn't want that."

Translation: "I don't want to be bothered."

In 2011, another neighbor came to the hospital, while Jon was in ICU to tell me that our elderly neighbor was also in the hospital. She had been very good to our elder friend through the years, bringing him food, shopping, cleaning for him, but she got caught up with her job and 2 kids, and she didn't have the time to look after him. She told me that he had moldy food, flies and maggots in his house, which was filthy and messy.

Yeah, that was his choice. I was able to visit our elder friend twice, before he died. I heard the code to his room on the overhead in ICU, and I knew he was gone.

That was not his choice. He was ill, he wasn't eating properly, he had a vision problem, he was confused often. He needed care. He didn't get it, and he suffered horribly from neglect.

And his son, after his dad died told me at the hospital that there would be no service for his dad. There was, but I wasn't included. Then, this son, who never visited his dad, was at his dad's house constantly getting it ready to sell for a year! He was here practically every damned day! I refused to speak to him, because he wouldn't like what I have to say.

His dad and mom were like substitute parents to me for over 30 years, and we were very close and spent a lot of time together.

Oh, and talk about patient choice. His mom woke up one morning and felt odd. She went to the ER with her husband, son arrived, and they wanted her to be admitted. Mom said, "No. Take me home. I don't want to be here." So they brought her home, still trying to convince her to go to the hospital again to be admitted, and she continued to refuse vehemently.

Sometime during the night, she got up, went to the bathroom and keeled over dead.

And she was fit as a fiddle all of her life, played golf, tennis, and swam right up to the time of her death. I think she knew it was her time, she was 82, and she didn't want any life saving measures, because she didn't want to live a life differently than she had and be a burden on her husband. She made that choice.

There are so many ways to look at patient choice. And I've blathered on again!!! Well, you started it, Donna, with another interesting and provocative topic!

Thanks as always for sharing your thoughts and getting the conversation started.

Love & Light,

Rose

[Donna Thomson]

Well, Rose, so many stories, some sad ones and some heartwarming ones! I am going to blog next on substitute decision making legislation for older folks with dementia and adults with dev disabilities. I think that's the way we need to go. Wow, I am a bit pooped tonight, we had a good neuro appt today, they upped Nick's keppra. Nick has mostly good nights now, but a few with 15 or so seizures, that's not so good. I'll let you know how it goes! I'm just falling asleep now! xoxo Donna

[Donna Thomson]

Hi again, Rose! I wanted to mention that I am going to write my next post about something we have in Canada (and maybe in the US too?) called substitute decision-making. It's a very good thing and deals with many of the problems that you describe. The one in British Columbia is the most comprehensive one in Canada and applies to older people with dementia as well as people with a reduction in capacity due to disabilities. It's really great. Btw, just got home from dinner, Jim and I went out for our 36th (!) anniversary :)

xo Donna

[Earth Mother 2 Angels]

((((((Donna))))))

Happy Anniversary! Thirty six remarkable years together, both of you working toward the greater good. Congratulations! Cheers!

But, I'm sad to hear about Nick's seizures. Praying the increased Keppra puts a stop to them for good. Give him an extra hug from me, please.

If we have substitute decision-making, I am not familiar with it. I'll be quite interested to read your next blog post.

Speaking of patient choice, yesterday, I had a long chat with Jon's Regional Center Case Manager, who is leaving and moving to another state. We are so sad to see her go, but happy for her that her future is much brighter.

We got into the discussion about last year's ordeal, in which Jon's program was in jeopardy by a number-crunching Area Manager. I ended up calling the RC Exec. Director, who is a friend and was my boys' case manager in the late '80's and early '90's. He got it all sorted out for us.

When this was happening last Fall, our case manager kept some of the details close to the vest. She was instructed to keep me in the dark. Eventually, as Jon's and our family advocate, she spilled the beans, when the issue was resolved. But she didn't tell me all of the details until yesterday.

Apparently, the Area Manager suggested, then insisted that Jon be removed from his home and placed into an Intermediate Care Facility (ICF). He wrongly declared that the state would save money with this scenario, as opposed to reimbursing us for Jon's care.

First, Jon has too many medical issues for an ICF, including a trache, and I suspect he would need to be in an Acute Care Facility, which is even more expensive than an ICF. We're talking 3 times the reimbursement we receive for Jon's care.

Next, the Olmstead Act is designed to prevent institutionalization. Jon has a civil right to live in his home and to choose his care givers. This is a Federal law.

Next, everyone, from his doctors to the hospital staff to his home health nurses to our friends/family/neighbors, even strangers would testify in court that Jon belongs in his home with his capable, loving, and fully trained parents as his care givers. All would agree that if Jon were placed in any facility, he would probably die from neglect or lack of appropriate care.

Finally, if anyone ever tried to take my son from me, I would handcuff myself to Jon, chain myself to his bed, call the media, and the world would hear about it!

I'm appalled at how far this went last year. Thanks to Jon's Case Manager and the Ex. Dir., it ended successfully. But, what if this happened to someone else, who didn't have an aggressive CM or a personal relationship with the ED? I shudder to think about it. Fortunately, our CM told me that the ED met with all of the big wigs, including this numbskull Area Manager after this incident and reminded them of their purpose ~ to support quality of life for persons with DD. Things have improved since then, so I'm grateful that we served to prevent this from happening to any other family. I will attest that it was excruciatingly stressful for us for 2 months. That's just wrong on all levels.

In the end, Jon's Case Manager said, "If you had said, 'NO! He's not going anywhere!' they would have had to drop it legally, because you could have sued the state for a very large sum." Well, isn't that great? That very large sum should be used to help all parents care AT HOME for their children! And I'm too damned old and tired to endure the stress of a lawsuit!

This is what we're up against, my friend. All of us are Sisyphus pushing a boulder up a steep hill. No wonder we're so tired ...

Love & Light,

Rose