How the Death Panels Really Work

[Jeff Matthews]

It's been a while since I posted concerning my elderly mom's failing health due to an extremly compromised respiratory system. It has been in and out of hospitals and nursing homes. Well over a year since she has been at home with family. The cycles between hospital and nursing home have become very short nowadays. Like, about a week or so. Basically, she is close to the end.

Because her Medicare days have been used-up and she is not on Medicaid, they don't much like caring for her any longer than they have to at the hospital. They stabilize her and try to rush her out as quickly as possible.

However, this time around, the writing is on the wall. Her condition is so poor that no nursing home could possibly care for her. She will be in great jeopardy once discharged out of the hospital.

Many people, faced with such circumstances, throw in the towel on living and agree to go home and die peacefully. My mom does not want to do this. She is afraid of death. I have been pressured by social workers to give the go-ahead for hospice, but knowing my mom's wishes, I cannot make a decision contrary to them. My mom is of sound mind and able to communicate. I will honor her wishes.

So, as of late, I have stopped returning calls by workers trying to get me to go along with discharge plans. They are on to my delay scheme. Today, I received a message they are making a referral to Adult Protective Services for the family's alleged "neglect" of my mother, and also, they will be filing guardianship proceedings to have someone appointed guardian who will cooperate with them for a discharge.

Here's the irony: We are accused of neglecting my mom by doing the things it takes to get her the medical attention she needs and requests. Of course, they (the hospital) are all great, responsible, diligent, concerned and caring people because, as is obvious, they want to send her out to her death.

I do understand the economics involved, and I realize the "free-ride" syndrome is in play here. Even though nursings homes are inadequate to treat such a frail patient as my mom, they will, of course take her in for the paltry sum of $5,000 + per month. As is probably obvious here, mom does not have money like that lying around, and so it's just not an option for her. It would be possible for family to chip-in, but even then, we have been in the vicious cycle a few times. They discharge her. She goes to a nursing home. They don't get to attend to her closely since they have many patients assigned to a single nurse. The nurse comes in after being gone for an hour or two and finds my mom unconscious and in respiratory failure. An ambulance is called. We all wait, wait, wait. They take her to the hospital, revive her, and more damage has been done. Basically, the nursing home environment is very life-threatening for someone in my mom's condition. So, even if money was no object, discharge is contrary to any plan to keep the patient alive as she wishes.

What a mess. But for those of you who wondered how the death panel process works, this is how it works. The whole thing gets turned upside down over money until it is alleged that it is "neglect" of my mom not to send her out to die against her will.

Oh well.... I will, of course, contest all of this and do my best to point out the hypocrisy in positions.

Me: Your Honor, they are asking to have a guardian appointed because we will not cooperate in letting them discharge her to her death. The doctors admit her health is in severe jeopardy if she is discharged and that she is expect not to live much longer. There is no case here to allege neglect on the part of the family and the need for a guardian. Even if a guardian was appointed, the guardian would be required to advocate the patient's position. The law would require a guardian to do exactly the same thing we are doing. It would be a conflict of interest for the guardian to cooperate with the hospital by putting the ward (my mom) in jeopardy for her life simply because the hospital is unconcerned about her well-being when it comes to the financial aspects involved.

I don't know where exactly this will go. Just got a call from Adult Protective Services to verify I was my mom's son. She said that's all she wanted to know, and hung up.

[oldtimer]

A very difficult time for you. I've been through something similar except my mom rejected the nursing home and chose pulling the plug. It was insurance that ultimately led to the forced decision of course. Insurance companies are the death panels. It is always about money.

[Jeff Matthews]

Hey, Oldie. Actually, in cases like these, it's the hospital, ultimately. The insurance company just says, "You're out of benefits." There are the worst 4 words hospital admins want to hear. This is when they start pressing for discharge.

[oldtimer]

Yep.

[oscarsear]

Are there good reasons she does not qualify for Medicaid? In Idaho you can still own your home and a car and still qualify for Medicaid if your other assets are depleted. If you choose to go on hospice you can access a lot more care because it funds more care in more settings. If she is in fact not mentally compromised they cannot commit her to a state guardian. She may assign a family guardian and this guardian could then make care decisions.

From a medical perspective, if her lungs are that bad you might suggest that she be permanently placed on mechanical ventilation. What is leading to her episodes of respiratory failure is her work of breathing. She is fatiguing. A machine could do that work for her. They do not like to place COPD patients on vents fearing this. But it can work if the goal itself is life supportive. It is not unlike keeping a hi quad alive using similar technology.

IMHO hospice does sound appropriate. Keep in mind that she can jump on and off of hospice at a whim. Go sour and she can rescind hospice status and go for full on curative care. After buffed up she simply goes back onto hospice. With hospice her medicare pays for care in residential settings and lower echelon long term centers as well.

[seti]

F'd up.

[Boxx]

I wish that I had a good answer to this situation.

However, I do wish to say that I am very saddened to hear that you are having to endure such difficulties at this time.

It can become pretty darn tuff and heart wrenching when we become the older generation.

My best to you and your mother.

Boxx

[Fish]

Pretty sad......sounds about right, not enough money and your time is up. The sad part is these people helped build a nation. With the money that's just wasted on thousands of stupid things she and others that are truly needy could be helped some. Good luck.

[Daddy Dee]

Jeff,

Really sorry to hear of all this.

I hear you on wanting to honor your mother's wishes to not go on hospice. In the last season of my mother's life i was working to honor my mother's decisions regarding health care which seemed the only thing to do, since she was of sound mind.

She had also run her course with medicare and inpatient hospitlization, though happily we did not have to deal with the assault on decency you are facing at the hand of those who have the power.

She decided she wanted to go home and we had nurses come in. Expensive, but we just decided we wouldn't worry about that. Finally we worked through the process enough for her to agree to hospice care a few weeks before her death.

Interesting enough, her quality of life improved with hospice care. Markedly. Looking back, if there were anything i might have done differently, it would have been to get her on hospice sooner than we did. All in all, the timing was probably about right, because we made the decision when she was ready to own it. I will still honor her wishes, but i wonder, knowing what i know now, if i might have helped her toward the decision sooner than i did. The hospice care she received was absolutely wonderful and better than what could have been offered in the hospital.

Just a word of support and caring here. This situation is rough as heck. I think making decisions based on what you reason will leave you with the least regrets, has merit.

[Marvel]

Finally we worked through the process enough for her to agree to hospice care a few weeks before her death.

Interesting enough, her quality of life improved with hospice care. Markedly. Looking back, if there were anything i might have done differently, it would have been to get her on hospice sooner than we did.

We had someone tell us that when my wife was nearing the end of her life here. They told us to get her on hospice NOW and not to wait. One of the best things we were ever told.The physical and emotional strain was hard enough with the care, I can only imagine the difficulty without it.

Bruce

[CECAA850]

Finally we worked through the process enough for her to agree to hospice care a few weeks before her death.

Interesting enough, her quality of life improved with hospice care. Markedly. Looking back, if there were anything i might have done differently, it would have been to get her on hospice sooner than we did.

We had someone tell us that when my wife was nearing the end of her life here. They told us to get her on hospice NOW and not to wait. One of the best things we were ever told.The physical and emotional strain was hard enough with the care, I can only imagine the difficulty without it.

Bruce

Both my parents had hospice care towards the end of their lives and my father died there. They were some of the most compassionate people I've ever met. Their only concern is the comfort of the residents.

[sheltie dave]

Let me say nother good word about hospice care. Of all the forms of medical care, hospice is the only one of hospital, nursing home, and private care that specifically is trained for the spiritual and medical care of patients and family. For a family member who is afraid of the next journey, hospice will be the only one that does not actively fight against death, but accepts that death is coming, and seeks to comfort and frame how one passes from life.

If you and your siblings are not capable or willing to help your mom in understanding, it is not fair to expect her doctors, nurses, and hospital or nursing home to be capable of doing such. Please note this is distinctly seperete from the issue of paying for her care, for which I also have strongly held belief.

It is hurtful to run up hard against the death panel at any time, whether you have the money to chase after more care, or have no money at all. I pray and hope that you can use hospice at some time, as it will help all of you and your mom to realize the meaning of her life and gain perspective of the meaning of her passing. God graces all of us, may he give your mom the peace of leaving with love.

[JL Sargent]

I certainly can relate to your situation. Just 7 months ago we faced the reality there was nothing else to do. With my mom's health failing more with each hospital visit I noticed the last time there the nurse couldn't wait to load her up in the car. I said "I can't believe she is getting discharged in this condition!" They knew her time was near. Her bone marrow had stopped working. The Doc. had already mentioned Hospice to us. I realized at that time she was not welcome to die there. I guess for financial reasons? She was a brave lady and decided on hospice care and to spend her last days (two weeks) at home with family. The outcome would be the same whether at the hosp. or at home. My mother's condition was declining and nothing would change that.

Hospice is not hospital at home. That's what I thought it was gonna be. Our family cared for my dying mother 24hrs a day until she passed. Hospice advised us, provided medicine, counseled, bathed, etc. That was all great and very helpful but it was not hospital at home. We had 1/2 doz. visits over that final 2 weeks time I'd estimate.

Jeff, I'm like you. I would have to honor my mother's wishes the best I could. You know how the legal machine works better than most of us. They probably will get her discharged unfortunately. It may be time to have an honest talk with your mother about what your real choices are at this point.

Your welcome to contact me via PM if you would like to know more specifics concerning these matters.

[CECAA850]

Good point Jeff on Hospice care that some may not realize. There is Hospice care "in home" as well as at their facility. They can even make hospital style electric beds available for in home care.

[DizRotus]

Jeff,

The comments from Bruce, Dee and others in support of good hospice care are consistent with what I've seen personally.

Unfortunately, if I understand your situation, those assurances don't solve, or even ease, your dilemma. Your mother, although in frail health, is "of sound mind." She seems to understand that hospice care, irrespective of how well delivered, is the beginning of the end, an end she chooses to not embrace.

Were it my decision, I'd argue for hospice. Ultimately, you can't accommodate her desire to keep death at bay. You can make decisions regarding her care and comfort until the inevitable takes place.

I was never in your situation, as both parents went quickly. My father-n-law went to hospice briefly, but he was not lucid by that time. I empathize with your dilemma.

Best wishes,

[oscarsear]

Good point Jeff on Hospice care that some may not realize. There is Hospice care "in home" as well as at their facility. They can even make hospital style electric beds available for in home care.

This needs to be understood when it comes to medicare reimbursement. If not on hospice medicare limits where it will pay for skilled nursing services (and above) and for how long. When on hospice medicare pays for more and longer care, in more care settings. It will pay for hospice in the home. It will pay for hospice in a residential care facility. It will pay for hospice in a hospice center. It will pay for shared services in a skilled nursing facility.

To go on hospice a doctor needs to presume a patient will live for 6 months or less. But that does not mean they have to die in 6 months or that the benefit will end after 6 months has passed. It simply get reordered.

There are other benefits to hospice care. All of those special diets patients hate to comply with: Out the door. Hospice patients are allowed to eat anything they want and do anything they can, as much as they can. Often when cut free from a strict medical routine people get better.

A good hospice provider works to keep the patient as pain free as possible while keeping them alert as possible. It includes coverage for some very sophisticated pain control methods.

[sheltie dave]

There are some things that are better than costly medical care at the end of life. Knowing you are surrounded by loved ones, being able to lucidly communicate with your kids and grandkids, being comfortable and loved, are all good things.

I have been in and around hospitals all my life. Dad was a GP, two brothers and three cousins are as well, wife and seven cousins are nurses. Spending my last days in an ICU, surrounded by knobs and tubes, in a cold and strange place filled with metal and chemical smells, would not be an environment of my choosing.

It is very, very difficult to walk your final days in pain and terror of a new journey. Would it be a benefit to have a person of the cloth to talk with your mom?

[oldtimer]

The boomers get everything they deserve, hopefully. I wake every day and think "I'm dying." But, It's alright, ma.

[JJkizak]

After two weeks of "by the book" hospital care mom came out with , green doo doo, incontenance, swelled ankles, red skin infection on the legs, and purple blotches all over the arms from IV's and blood tests. She was a slightly combative which they do not tolerate so they put her on atavan which puts you in la la land and takes three days to come out of it so you do not eat so they stick the feeding tube down your throat and after they pull it out days later your voice is screwed up and sounds gargly. Things got worse from then on. The Hospice people are very good at what they do. The Hospice people work with the care facilities which charged $4200.00 per month. The facilities also have Medicaid rooms if you run out of money. Medicare and Humana did a great job in covering costs. ($120,000.00)

JJK

[oldtimer]

I could be wrong but I think Jeff's mother is in Texas. The current government here has made a point of reducing and restricting health care for it's citizens. All to the applause of yee haw of those who haven't faced a serious problem yet. Hospitals are begging for the federal money being turned away.