And presumably she would have been kept in if her symptoms had succeeded in progressing. The nuances of the English language are guaranteed to cause some people to confuse their intransitive verbs, not to mention their negatives and positives!
I actually thought that sort of thing would happen to my father-in-law. He had Lewy Body Dementia and spent four years deteriorating. He had muscle degeneration, and issues with multiple organs, except for his heart, which was surprising.
At least once a month, the nursing home staff would ring us and tell us he was on the brink of death. We would rush over to the nursing home, then the hospital, where he would make a miraculous recovery by the next day, and be shipped from ICU back to the nursing home. It happened so often that when he did go under hospice care for real (it was talked about each time), I expected them to boot him out a few days later and send him back to the nursing home. I was surprised when he passed away just two days after he entered hospice care.
We had been on the brink of death so many times. I was sad, but I was also relieved that he went so he wouldn't have to suffer anymore. He had no quality of life. He didn't know who we were. He was stuck in bed with a feeding tube and a tranche and unable to communicate.
My mother-in-law was in denial for most of his decline. Every single time he escaped "the brink of death" it gave her false hope. My husband and I were often confused by his father's improvement. He didn't look or act like he was doing better, but I guess that's how dementia works.
My husband and I rarely got the details about each hospitalization or why the nursing home staff thought he was dying. We only got second hand information from my mother-in-law. Most of the hospital visits during his last year of life were for dehydration and sepsis.
Packer, I am assuming that you are being sarcastic about the death panels....puleeeeeze. Not to get political but it sounds like .....you know the roving death squads putting people into hospice care.
We should ALL receive medical care that is as good and as caring as hospice care can be. As opposed to the nauseating for profit medicine that we actually get, cha ching, cha ching.
Hitchhiking on Shellye's post, PLEASE have advance directives so that your loved ones know exactly what you do and do not want at the end of life.
I have never understood feeding tubes and trachs for those with end stage diseases. It is not about the patients at that point, but more about those who are not able to let them go. Death is painful for those left behind, but then again, so is suffering horribly for the person who is ill.
Anonymous, I totally agree about the advance directives. My husband and I both have one. My mother-in-law needs to put an advance directive together for herself.
I think the g-button and the trache were more for my mother-in-law than my father-in-law. She was in denial for four years. She was in denial when he started showing signs. She was in denial when he stopped recognizing me. She forced him to go through OT and PT even though he had muscle degeneration. She didn't want him to be put on medication for dementia. She didn't want to hear the word dementia.
When my father-in-law was first given the cognitive questions test, my mother-in-law stood behind the neurologist and was giving him the answers. When the neurologist realized what my mother-in-law was doing, he stood in front of her. She did not want him diagnosed with dementia. But he was.
Throughout the last four years, doctors tried to convince my mother-in-law to let my father-in-law go. She refused. My husband and I tried to get involved, but where his father was moved back and forth between the nursing home and the hospital, he never saw the same doctor. One doctor offered to answer any questions we had, and when I started asking questions, he flipped out and started yelling at me. He said all he cared about was treating the sepsis, not about the dementia diagnosis. I'm fairly sure he could have explained this in a more polite manner, but he didn't. This particular doctor and I ended up in a shouting match in the hallway outside of the room, and I demanded another doctor to oversee my father-in-law's care. These are just some of the things we endured in this nightmare of a journey.
In the end, nothing was done for my father-in-law besides sending him back and forth between the hospital and the nursing home, and treating him for sepsis, MRSA, and dehydration. He had a bed sore so bad that it required surgery. He went through painful procedures. And my husband and I tried everything. Nobody would help us. We were just the son and daughter-in-law and our input on his father didn't matter until the very end. I was honestly surprised that my mother-in-law agreed to allowing him to receive hospice care at the hospital. She had the option of keeping him on life support, but she agreed with me and my husband.
The moral of the story: Advance Directives are extremely beneficial, because some of the hospital staff I have encountered do not give a damn about the patient's quality of life, whether or not they can communicate, or their needs. Just treat the GOMER and street him and move on to the next one.
Anon @ 7:43---I was poking at the widespread myths attached to the Obamacare Debate, but just the day before I posted that a huge report dealing with change of end of life care was issued. Over 500 pages, calling for sweeping changes to get people atuned to the idea that they may have a duty to die.
Anonymous, yes we DO have death panels. I inadvertently sat in on one when one of my long-term patients died- and it was called some-obscure-name-committee. They were upset that pt hadn't been DNRd long time prior. She was costing us money afterall. They actually have a policy in which the intensivist rounds on families and pressures them to make the pt a DNR. As soon as they do, he turns to the nurse and says "get him out of here," and leaves the family sitting there dumbfounded while staff wheels their loved one off to die on a medical floor.
I have worked in nursing homes and am currently a social worker in a continuing care retirement community for extremely affluent people. Whether I have worked with poor, middle class or extraordinarly affluent, I have YET to see anyone pushed into dying, anywhere I've worked. No one HAS to choose hospice, yet death with it is far more comfortable than without it for many people.
Since I have an untreatable form of MS (primary progressive- Google it) and will keep getting worse, yet am trying to maintain employment despite being disabled, I can understand from experience a belief in asssisted suicide, trust me. Even though it goes against my own religious beliefs. As with many diseases, my own disease causes untold suffering, along with worsening disability. We are STILL in the first century, when it comes to virtually all neurological disease. No, we are NOT heading into 2015 in MY world, only on the calendar.
That is NOT what hospice is. Hospice is for people who are already beginning the process of dying. I have DNR for myself as I have a horrible disease (and have always taken really good care of my health). We will all die at some point.
Making people comfortable and giving them the very best quality of life they can have is the point.
Forcing people to become a DNR if they do not want to be is NOT the point. That's the reason to have advance directives. If you want heroics then request them. It is your life and your decision.
I would love to know the actual name of the hospital committee.
Sometimes, we seem to feel in the U.S., as if none of us is ever going to die, but even children become sick and can expire, not only elderly adults. Know of far too many kids and teens who have died and it was not always from cancer.
Let your loved ones know your wishes, and if you want everything done, THAT is YOUR CHOICE. It is not up to a hospital committee to decide that for you, or even your next of kin. Let them know how you feel and what you want.
Death Panels, Advanced Directives, politics, and poor decision-making aside, that was one of the more creative rationales of why someone was discharged from hospice I've seen. I can think of several folks I've known who fit that description....to a "T". More than once.
Moose nailed it. If dying were easy, it'd be easier to predict....
This happened to my mom though we like to say she fired hospice. She lived another 6 years.
ReplyDeleteWe call these people Hospice Dropouts at my job. I've seen it happen twice.
ReplyDeleteMuch to the annoyance of the death panel.
ReplyDeleteAnd presumably she would have been kept in if her symptoms had succeeded in progressing.
ReplyDeleteThe nuances of the English language are guaranteed to cause some people to confuse their intransitive verbs, not to mention their negatives and positives!
Good for her; she graduated from Hospice.
ReplyDeleteYay!
ReplyDeleteI actually thought that sort of thing would happen to my father-in-law. He had Lewy Body Dementia and spent four years deteriorating. He had muscle degeneration, and issues with multiple organs, except for his heart, which was surprising.
ReplyDeleteAt least once a month, the nursing home staff would ring us and tell us he was on the brink of death. We would rush over to the nursing home, then the hospital, where he would make a miraculous recovery by the next day, and be shipped from ICU back to the nursing home. It happened so often that when he did go under hospice care for real (it was talked about each time), I expected them to boot him out a few days later and send him back to the nursing home. I was surprised when he passed away just two days after he entered hospice care.
We had been on the brink of death so many times. I was sad, but I was also relieved that he went so he wouldn't have to suffer anymore. He had no quality of life. He didn't know who we were. He was stuck in bed with a feeding tube and a tranche and unable to communicate.
My mother-in-law was in denial for most of his decline. Every single time he escaped "the brink of death" it gave her false hope. My husband and I were often confused by his father's improvement. He didn't look or act like he was doing better, but I guess that's how dementia works.
My husband and I rarely got the details about each hospitalization or why the nursing home staff thought he was dying. We only got second hand information from my mother-in-law. Most of the hospital visits during his last year of life were for dehydration and sepsis.
"Patient was transferred to a remedial hospice in hopes of bringing her up to speed so she could return to the regular hospice."
ReplyDeletePacker, I am assuming that you are being sarcastic about the death panels....puleeeeeze. Not to get political but it sounds like .....you know the roving death squads putting people into hospice care.
ReplyDeleteWe should ALL receive medical care that is as good and as caring as hospice care can be. As opposed to the nauseating for profit medicine that we actually get, cha ching, cha ching.
Hitchhiking on Shellye's post, PLEASE have advance directives so that your loved ones know exactly what you do and do not want at the end of life.
I have never understood feeding tubes and trachs for those with end stage diseases. It is not about the patients at that point, but more about those who are not able to let them go. Death is painful for those left behind, but then again, so is suffering horribly for the person who is ill.
Bad patient, failing to die like that!
ReplyDeleteAnonymous, I totally agree about the advance directives. My husband and I both have one. My mother-in-law needs to put an advance directive together for herself.
ReplyDeleteI think the g-button and the trache were more for my mother-in-law than my father-in-law. She was in denial for four years. She was in denial when he started showing signs. She was in denial when he stopped recognizing me. She forced him to go through OT and PT even though he had muscle degeneration. She didn't want him to be put on medication for dementia. She didn't want to hear the word dementia.
When my father-in-law was first given the cognitive questions test, my mother-in-law stood behind the neurologist and was giving him the answers. When the neurologist realized what my mother-in-law was doing, he stood in front of her. She did not want him diagnosed with dementia. But he was.
Throughout the last four years, doctors tried to convince my mother-in-law to let my father-in-law go. She refused. My husband and I tried to get involved, but where his father was moved back and forth between the nursing home and the hospital, he never saw the same doctor. One doctor offered to answer any questions we had, and when I started asking questions, he flipped out and started yelling at me. He said all he cared about was treating the sepsis, not about the dementia diagnosis. I'm fairly sure he could have explained this in a more polite manner, but he didn't. This particular doctor and I ended up in a shouting match in the hallway outside of the room, and I demanded another doctor to oversee my father-in-law's care. These are just some of the things we endured in this nightmare of a journey.
In the end, nothing was done for my father-in-law besides sending him back and forth between the hospital and the nursing home, and treating him for sepsis, MRSA, and dehydration. He had a bed sore so bad that it required surgery. He went through painful procedures. And my husband and I tried everything. Nobody would help us. We were just the son and daughter-in-law and our input on his father didn't matter until the very end. I was honestly surprised that my mother-in-law agreed to allowing him to receive hospice care at the hospital. She had the option of keeping him on life support, but she agreed with me and my husband.
The moral of the story: Advance Directives are extremely beneficial, because some of the hospital staff I have encountered do not give a damn about the patient's quality of life, whether or not they can communicate, or their needs. Just treat the GOMER and street him and move on to the next one.
And the winner of the not my job award goes to...
You get the point.
Hey, dying is hard. If it was easy, everyone would be doing it.
ReplyDeleteUm. Wait a second...
Some pretty sad comments, but still this makes me laugh!
ReplyDeleteAnon @ 7:43---I was poking at the widespread myths attached to the Obamacare Debate, but just the day before I posted that a huge report dealing with change of end of life care was issued. Over 500 pages, calling for sweeping changes to get people atuned to the idea that they may have a duty to die.
ReplyDeletehttp://www.nytimes.com/2014/09/18/science/end-of-life-care-needs-sweeping-overhaul-panel-says.html?_r=0
When the government is the source of all health care, this will become very political.
Anonymous, yes we DO have death panels. I inadvertently sat in on one when one of my long-term patients died- and it was called some-obscure-name-committee. They were upset that pt hadn't been DNRd long time prior. She was costing us money afterall. They actually have a policy in which the intensivist rounds on families and pressures them to make the pt a DNR. As soon as they do, he turns to the nurse and says "get him out of here," and leaves the family sitting there dumbfounded while staff wheels their loved one off to die on a medical floor.
ReplyDeleteI have worked in nursing homes and am currently a social worker in a continuing care retirement community for extremely affluent people. Whether I have worked with poor, middle class or extraordinarly affluent, I have YET to see anyone pushed into dying, anywhere I've worked. No one HAS to choose hospice, yet death with it is far more comfortable than without it for many people.
ReplyDeleteSince I have an untreatable form of MS (primary progressive- Google it) and will keep getting worse, yet am trying to maintain employment despite being disabled, I can understand from experience a belief in asssisted suicide, trust me. Even though it goes against my own religious beliefs. As with many diseases, my own disease causes untold suffering, along with worsening disability. We are STILL in the first century, when it comes to virtually all neurological disease. No, we are NOT heading into 2015 in MY world, only on the calendar.
That is NOT what hospice is. Hospice is for people who are already beginning the process of dying. I have DNR for myself as I have a horrible disease (and have always taken really good care of my health). We will all die at some point.
Making people comfortable and giving them the very best quality of life they can have is the point.
Forcing people to become a DNR if they do not want to be is NOT the point. That's the reason to have advance directives. If you want heroics then request them. It is your life and your decision.
I would love to know the actual name of the hospital committee.
Sometimes, we seem to feel in the U.S., as if none of us is ever going to die, but even children become sick and can expire, not only elderly adults. Know of far too many kids and teens who have died and it was not always from cancer.
Let your loved ones know your wishes, and if you want everything done, THAT is YOUR CHOICE. It is not up to a hospital committee to decide that for you, or even your next of kin. Let them know how you feel and what you want.
Packer: you are my HERO!! Let them hide & watch...
ReplyDeleteDeath Panels, Advanced Directives, politics, and poor decision-making aside, that was one of the more creative rationales of why someone was discharged from hospice I've seen. I can think of several folks I've known who fit that description....to a "T". More than once.
ReplyDeleteMoose nailed it. If dying were easy, it'd be easier to predict....
@Moose: LOL! You are the killer!
ReplyDeleteWait a sec, that didn't quite come out right...