What's the story with my grandma?
June 25, 2016 11:37 AM Subscribe
My grandma is in her 90s and she broke her neck. I'm not sure I'm getting the story straight from my father so I just want to know what's going on and what to expect. What I know is inside.
A week or so ago my grandma broke her neck. She's too old to do surgery on so they're just giving her pain medication for it. I'm not 100% clear on the order of these details but at some point about a week ago they found that the food they had given her had been sitting in her mouth all day because she hadn't swallowed it. For six days, starting on the 17th, the care facility was only giving her fluids (and maybe glucose?). She has had four family members who are pretty much there looking after her full time. She was dying, I could hear it in my dad's voice every time I talked to him and he listed off a bunch of "I looked this up and this is definitely what dying looks like" symptoms.
Then yesterday I called my dad up and he sounded so much better. He had apparently insisted they get to speak with the doctor and when the doctor still didn't show up all day, he went in to the secretary at the end of the day and was like "get the doctor here NOW" and the secretary texted the doctor, and the whole family had a meeting an hour later, and the doctor realized that while on the 17th the family has accepted the risk of aspiration for solid foods and the doctor had approved it, the doctor had not communicated this information to the family and the care staff had not been acting on this order. They were basically starving her to death. So now she's able to eat like a tablespoon of food at every meal, and they're feeding her a little thickened water (so she doesn't choke on it), too. This is like 5% of what she's supposed to be eating.
My father feels like now everyone is paying much closer attention to my grandma, he says grandma seems like she's doing a little better, he got her to laugh a little yesterday.
I mean. I know you can't tell me if my grandma is going to live and die, but if this is enough information to work with, can you tell me if it might be more likely that my father's relief is justified or if it's prolonging the inevitable? Do people in their 90s who just broke their neck come back from a week of starvation? A week ago she had a prognosis of a few days to a couple weeks. I would assume that's probably about where she's still at except that my father sounded so hopeful. He was also focusing on little details (like that my grandma's wedding/engagement/sentimental rings got stolen) so I'm wondering if maybe he's just in denial? It is also fully possible, knowing my dad, that he was just relieved that she perked up a little and isn't wanting to talk about the death with me right now.
This is all happening long-distance, and I've basically been told to steer clear because that's what is going to be easiest emotionally for my grandma and her closest family who is taking care of her, and I'm okay with that, it's just that my father is my only point of information here so if anyone with experience in this sort of thing can make a few educated guesses from what I've shared here I would appreciate it.
A week or so ago my grandma broke her neck. She's too old to do surgery on so they're just giving her pain medication for it. I'm not 100% clear on the order of these details but at some point about a week ago they found that the food they had given her had been sitting in her mouth all day because she hadn't swallowed it. For six days, starting on the 17th, the care facility was only giving her fluids (and maybe glucose?). She has had four family members who are pretty much there looking after her full time. She was dying, I could hear it in my dad's voice every time I talked to him and he listed off a bunch of "I looked this up and this is definitely what dying looks like" symptoms.
Then yesterday I called my dad up and he sounded so much better. He had apparently insisted they get to speak with the doctor and when the doctor still didn't show up all day, he went in to the secretary at the end of the day and was like "get the doctor here NOW" and the secretary texted the doctor, and the whole family had a meeting an hour later, and the doctor realized that while on the 17th the family has accepted the risk of aspiration for solid foods and the doctor had approved it, the doctor had not communicated this information to the family and the care staff had not been acting on this order. They were basically starving her to death. So now she's able to eat like a tablespoon of food at every meal, and they're feeding her a little thickened water (so she doesn't choke on it), too. This is like 5% of what she's supposed to be eating.
My father feels like now everyone is paying much closer attention to my grandma, he says grandma seems like she's doing a little better, he got her to laugh a little yesterday.
I mean. I know you can't tell me if my grandma is going to live and die, but if this is enough information to work with, can you tell me if it might be more likely that my father's relief is justified or if it's prolonging the inevitable? Do people in their 90s who just broke their neck come back from a week of starvation? A week ago she had a prognosis of a few days to a couple weeks. I would assume that's probably about where she's still at except that my father sounded so hopeful. He was also focusing on little details (like that my grandma's wedding/engagement/sentimental rings got stolen) so I'm wondering if maybe he's just in denial? It is also fully possible, knowing my dad, that he was just relieved that she perked up a little and isn't wanting to talk about the death with me right now.
This is all happening long-distance, and I've basically been told to steer clear because that's what is going to be easiest emotionally for my grandma and her closest family who is taking care of her, and I'm okay with that, it's just that my father is my only point of information here so if anyone with experience in this sort of thing can make a few educated guesses from what I've shared here I would appreciate it.
This seems like the kind of thing that a good hospice specializes in (family communication, coordination of care, pain management, social and spiritual, massage and aroma therapy, etc.) Realize that hospice is not necessarily a place (like going into a hospice) it is a program
of care for wherever (facility, home or a stand alone hospice building).
I am sure others can speak better to whether your particular case might be appropriate, but the problems you are experiencing, the advanced age and the serious prognosis made me want to throw it out there.
posted by forthright at 12:08 PM on June 25, 2016 [8 favorites]
of care for wherever (facility, home or a stand alone hospice building).
I am sure others can speak better to whether your particular case might be appropriate, but the problems you are experiencing, the advanced age and the serious prognosis made me want to throw it out there.
posted by forthright at 12:08 PM on June 25, 2016 [8 favorites]
It depends on a great many factors.
When my dad was in his late eighties, he spent a week or so in the hospital. I was told to plan on attending his funeral soon. My mother checked him out and took him home. Doctors gave him six months at most. He lived another three years.
But my mom is extremely big on feeding people and talented at such things. I think, with what you describe, it will largely hinge on whether or not someone can improve her nutritional status.
posted by Michele in California at 12:32 PM on June 25, 2016 [1 favorite]
When my dad was in his late eighties, he spent a week or so in the hospital. I was told to plan on attending his funeral soon. My mother checked him out and took him home. Doctors gave him six months at most. He lived another three years.
But my mom is extremely big on feeding people and talented at such things. I think, with what you describe, it will largely hinge on whether or not someone can improve her nutritional status.
posted by Michele in California at 12:32 PM on June 25, 2016 [1 favorite]
I mean. I know you can't tell me if my grandma is going to live and die, but if this is enough information to work with, can you tell me if it might be more likely that my father's relief is justified or if it's prolonging the inevitable?
Do you mean whether he's prolonging his grief at her death? Whether he has hope that isn't justified? That could be true, but if it is, it really doesn't matter. He is dealing with her impending death in his own way. If he can think she is going to get better and gain some relief that way, then he might feel better than circumstances really warrant. If so, I would just be happy that he's found something to help him get through this. People facing the death of a loved one are not required to be realistic.
There are always people who defy the odds and keep going much longer than their doctors who are treating and examining them expect, so we are not going to be able to give a reasonable sense of how long she has or what the quality of her life can be. I have been in the position of getting information from someone who wasn't very reliable, so I know it's really hard, and I'm sorry that you're dealing with it. When I was with a dying relative, everything seemed to be so much moment by moment. There'd be a terrible hour when he was constantly asking for water the doctors said he couldn't have. Then he would fall asleep and it would seem more OK. In the meantime, we were waiting for test results. It's just a roller coaster of change and emotion and not knowing what will happen or knowing that death is coming, but not knowing when. It's just a hard, hard thing.
posted by FencingGal at 12:52 PM on June 25, 2016 [1 favorite]
Do you mean whether he's prolonging his grief at her death? Whether he has hope that isn't justified? That could be true, but if it is, it really doesn't matter. He is dealing with her impending death in his own way. If he can think she is going to get better and gain some relief that way, then he might feel better than circumstances really warrant. If so, I would just be happy that he's found something to help him get through this. People facing the death of a loved one are not required to be realistic.
There are always people who defy the odds and keep going much longer than their doctors who are treating and examining them expect, so we are not going to be able to give a reasonable sense of how long she has or what the quality of her life can be. I have been in the position of getting information from someone who wasn't very reliable, so I know it's really hard, and I'm sorry that you're dealing with it. When I was with a dying relative, everything seemed to be so much moment by moment. There'd be a terrible hour when he was constantly asking for water the doctors said he couldn't have. Then he would fall asleep and it would seem more OK. In the meantime, we were waiting for test results. It's just a roller coaster of change and emotion and not knowing what will happen or knowing that death is coming, but not knowing when. It's just a hard, hard thing.
posted by FencingGal at 12:52 PM on June 25, 2016 [1 favorite]
anyone with experience in this sort of thing
I have experience with the death of my mother many months after her oncologist projected it, the same week that her hospice nurse told me not to rush home because she'd definitely survive the week (an assurance I did not ask for and did not believe. The doctor frankly admitted error; the nurse did not.) Also with the death of my 95-year-old aunt who was forced to endure treatments she vocally refused, for months, because "the family" controlled and she was old so staff did not care to take directions from the patient's own mouth even though she was never legally declared incompetent. As soon as they could be induced to stop, she died.
There is a horrible hospice pamphlet they give you which says that right before a person dies, they will appear to get much better and more lucid and cheerful and full of vigor. The only real purpose this serves is to make you terrified not just of every time your loved one appears to take a turn for the worse or become unresponsive, BUT ALSO terrified of every time they smile or have a little more energy or appetite or hold a conversation. You can go on for months and months this way thinking that every sign of improvement is just as horrible an omen as every sign of suffering. Everything is a sign and the signs tell you nothing in the end. If your father is able to feel relief and hope it is not somehow denial in any bad sense - lessening his mother's suffering and indignity is not pointless merely because she is dying, if these are her last days then it will be a great comfort to him to know that in her last days she was not ignored and mistreated through a staff misunderstanding. There is no unjustified relief in these situations. there is just hardly ever any relief at all.
If there seems to be a real risk of him putting her through worse suffering than she needs to be in or would have wanted to be in, because he can't face letting her go, maybe an intervention is warranted, but feeding her a tiny bit versus feeding her nothing makes no difference except possibly to her awareness of being cared for, and his sense of being a good son. those are important things.
The other extraordinarily upsetting thing that hospice nurses and similar people will tell you is that a dying person will "hold on" if they think it will upset others for them to let go and die, just through magic willpower. This is obviously bullshit to some degree because if staying alive was just a matter of wanting to, what are hospitals for - it's the same mentality that characterizes dying as giving up and survival as fighting. But what is true in that whole mess is that the dying person should be given whatever they want if you can determine what that is. It is a scary thing to start deciding that someone would or wouldn't have wanted to live 'this way' unless they actually said so in writing, but you can usually be safe in guessing that they would want their loved ones not to fall apart over their death. So there again, if your father can make himself believe that things are ok or under control, that's probably good for your grandmother no matter how long she lives.
posted by queenofbithynia at 1:42 PM on June 25, 2016 [10 favorites]
I have experience with the death of my mother many months after her oncologist projected it, the same week that her hospice nurse told me not to rush home because she'd definitely survive the week (an assurance I did not ask for and did not believe. The doctor frankly admitted error; the nurse did not.) Also with the death of my 95-year-old aunt who was forced to endure treatments she vocally refused, for months, because "the family" controlled and she was old so staff did not care to take directions from the patient's own mouth even though she was never legally declared incompetent. As soon as they could be induced to stop, she died.
There is a horrible hospice pamphlet they give you which says that right before a person dies, they will appear to get much better and more lucid and cheerful and full of vigor. The only real purpose this serves is to make you terrified not just of every time your loved one appears to take a turn for the worse or become unresponsive, BUT ALSO terrified of every time they smile or have a little more energy or appetite or hold a conversation. You can go on for months and months this way thinking that every sign of improvement is just as horrible an omen as every sign of suffering. Everything is a sign and the signs tell you nothing in the end. If your father is able to feel relief and hope it is not somehow denial in any bad sense - lessening his mother's suffering and indignity is not pointless merely because she is dying, if these are her last days then it will be a great comfort to him to know that in her last days she was not ignored and mistreated through a staff misunderstanding. There is no unjustified relief in these situations. there is just hardly ever any relief at all.
If there seems to be a real risk of him putting her through worse suffering than she needs to be in or would have wanted to be in, because he can't face letting her go, maybe an intervention is warranted, but feeding her a tiny bit versus feeding her nothing makes no difference except possibly to her awareness of being cared for, and his sense of being a good son. those are important things.
The other extraordinarily upsetting thing that hospice nurses and similar people will tell you is that a dying person will "hold on" if they think it will upset others for them to let go and die, just through magic willpower. This is obviously bullshit to some degree because if staying alive was just a matter of wanting to, what are hospitals for - it's the same mentality that characterizes dying as giving up and survival as fighting. But what is true in that whole mess is that the dying person should be given whatever they want if you can determine what that is. It is a scary thing to start deciding that someone would or wouldn't have wanted to live 'this way' unless they actually said so in writing, but you can usually be safe in guessing that they would want their loved ones not to fall apart over their death. So there again, if your father can make himself believe that things are ok or under control, that's probably good for your grandmother no matter how long she lives.
posted by queenofbithynia at 1:42 PM on June 25, 2016 [10 favorites]
" broke her neck" is such a vague description; it could cover everything from she severed her spinal cord and can't move to her cervical vetebrae have collapsed from advanced osteoporosis to so any other things. It might be comforting to you to ask your dad for an exact diagnosis.
Your grandma is 90. Statistically she is likely to die sooner rather than later. But you never know.
Some people find it meaningful to ask for and share stories of her life.
posted by SyraCarol at 1:52 PM on June 25, 2016 [3 favorites]
Your grandma is 90. Statistically she is likely to die sooner rather than later. But you never know.
Some people find it meaningful to ask for and share stories of her life.
posted by SyraCarol at 1:52 PM on June 25, 2016 [3 favorites]
I watched my father die of esophageal cancer. My opinion of hospice was shaped by my experiences with my father's hospice care in his last month. Based on that experience, and on speaking and writing with other people, I have extreme reservations about ever suggesting anyone be in hospice care. Please memail me for details if interested.
Even if she had access to great hospice care, has it actually been established that she's dying? "She's old" is NOT a reason to put someone is hospice, or to give up on them. Right now it sounds like she's getting extremely subpar medical care just because of her age. I find that morally unacceptable.
Bottom line, it sounds like they are starving your grandmother to death. This is unfortunately common in our society. People are often viewed as disposable because of their advanced age. There are lots of rationalizations around it, to make people feel better, and allow them not to own what they're really doing to another human being.
If it were me, and I cared about my grandmother, I would visit unless I heard directly from her that she didn't want me to. I would ask the doctors why they aren't feeding her through a feeding tube. I would try to get a sense of her genuine desire to continue living (or not) aside from all the many subtle pressures on her to "stop being a burden".
posted by mysterious_stranger at 2:11 PM on June 25, 2016 [5 favorites]
Even if she had access to great hospice care, has it actually been established that she's dying? "She's old" is NOT a reason to put someone is hospice, or to give up on them. Right now it sounds like she's getting extremely subpar medical care just because of her age. I find that morally unacceptable.
Bottom line, it sounds like they are starving your grandmother to death. This is unfortunately common in our society. People are often viewed as disposable because of their advanced age. There are lots of rationalizations around it, to make people feel better, and allow them not to own what they're really doing to another human being.
If it were me, and I cared about my grandmother, I would visit unless I heard directly from her that she didn't want me to. I would ask the doctors why they aren't feeding her through a feeding tube. I would try to get a sense of her genuine desire to continue living (or not) aside from all the many subtle pressures on her to "stop being a burden".
posted by mysterious_stranger at 2:11 PM on June 25, 2016 [5 favorites]
Oh and, medical prognoses are not law. I had a friend with end-stage liver disease and then liver cancer who was initially given a single digit percentage chance that he would live a year.
He lived another decade.
Whether your grandma can come back from a broken neck and being starved for a week largely depends on the quality of medical care she receives, and whether they continue to starve her! The belief that she's dying can become a self-fulfilling prophesy if it causes care to be withheld.
posted by mysterious_stranger at 2:15 PM on June 25, 2016
He lived another decade.
Whether your grandma can come back from a broken neck and being starved for a week largely depends on the quality of medical care she receives, and whether they continue to starve her! The belief that she's dying can become a self-fulfilling prophesy if it causes care to be withheld.
posted by mysterious_stranger at 2:15 PM on June 25, 2016
Although it seems likely she's receiving substandard care (having food left in her mouth all day), lack of a feeding tube in itself is not an indication of that. I went through the whole feeding tube discussion with my 93-year-old uncle, so I've researched it a lot, and I think it would have been a bad idea in his case, though he could not eat and was going to die without one (once it was explained to him what was actually involved, he was adamant that he did not want one, so it was his decision anyway - he died within a few days - though to be honest, I don't think the doctor adequately explained that he was going to die). First of all, a feeding tube is only effective for a temporary problem and is best used in a healthy person who is expected to fully recover. They cannot be kept in long because of the risk of infection. While I agree that it's wrong to withhold treatment because a person is old and the willingness of hospital personnel to let any random relative of an elderly person make decisions is appalling, if a person is not going to live long or begin eating on her own, a feeding tube means abdominal surgery, with all the pain and potential complications, for what is probably a slight increase in length of life. Whether your grandmother would consider that worth it, I don't know. End-of-life decisions are complicated as hell.
posted by FencingGal at 2:41 PM on June 25, 2016 [4 favorites]
posted by FencingGal at 2:41 PM on June 25, 2016 [4 favorites]
My father had a feeding port for many months. He was not expected to recover. But someone being diagnosed as terminal does not mean it is acceptable to starve them to death and speed up the process.
There's also parenteral nutrition, which doesn't require surgery.
Rationalizing starving or dehydrating someone to death is exactly the kind of thing I was talking about, and is one reason I would not want grandma in hospice.
posted by mysterious_stranger at 2:54 PM on June 25, 2016 [3 favorites]
There's also parenteral nutrition, which doesn't require surgery.
Rationalizing starving or dehydrating someone to death is exactly the kind of thing I was talking about, and is one reason I would not want grandma in hospice.
posted by mysterious_stranger at 2:54 PM on June 25, 2016 [3 favorites]
IANYD but I am an emergency medicine doctor who treats many old people who break their necks and similar types of problems, so I have some comments.
- Re: "breaking her neck", as noted, this can mean a lot of things, anything from a relatively minor transverse process fracture to a very unstable fracture that poses a serious threat to the spinal cord. Here's a link to a list of types of cervical spine fracture with stability listed.
- A week of not eating: not a very big deal, to a relatively healthy person. People go a week or more without eating all the time while they cannot eat for other reasons. Initially you just need fluids and glucose in the IV, eventually if it becomes prolonged you can need a product called TPN that provides other types of nutritional supplementation. The bigger thing is whether she's actually up and about or not. Lying in a bed all day is very problematic for a person because they become deconditioned (muscle atrophy) and can also develop other problems related to being immobile, like blood clots in the legs, pressure ulcers/wounds of the skin, and urinary tract infections if they require catheters for toileting. It's also bad for people cognitively not to be stimulated and to be in unfamiliar settings. So for an elderly person in their 90s who is usually relatively frail to start with, this is usually a really tough thing to come back from, and whether they can make it back has a lot to do with their initial physical condition when the injury happened, and how good the rehabilitation care that they're receiving is. People can definitely look like they are dying and come back from it, but in most cases, they had some kind of reserve capacity because they were in relatively good shape for their age (or were young).
- "the family has accepted the risk of aspiration for solid foods and the doctor had approved it" - "now she's able to eat like a tablespoon of food at every meal, and they're feeding her a little thickened water". Basically, it sounds like it's not technically "safe" for your grandma to eat, because she's at risk of aspiration. However, many people feel that they'd rather have the opportunity to eat and drink and risk aspiration (which can kill a person, by the way, but in my opinion it's a perfectly reasonable thing to feel that it's worth risking that to be able to drink and eat in an end of life situation).
Let's remember that we don't have the whole story here. I very much doubt that she's not getting a necessary surgery JUST because she's old. Surgeons routinely perform surgery, including highly invasive surgery like heart surgery, on very old people in their 90s, but the key to whether or not that should be done is what their level of function and comorbidities are. If you have a bed-bound person with metastatic cancer, end stage COPD, and severe heart disease, for example, it would be criminal to do a hugely invasive surgery on them that they'd have essentially no chance of surviving and would cause a lot of pain and suffering for them at the end of their life. Same thing goes for a patient with severe dementia who also cannot understand why you're doing things that hurt them.
Also, it pains me to see so many negative things being said about hospice here, as I am a huge proponent of palliative care (and hospice, when appropriate). The entire point of hospice services and palliative care is to relieve suffering at the end of life. Also, patients receiving palliative care can actually live longer than patients who choose to receive only aggressive medical care. Not only that, but doctors - the people who best know and understand the odds of success and what is involved in the various treatments, by huge majorities, would never choose a death with aggressive medical care. There's a good reason for that. I don't want to get into arguments with other posters, here, because really your question is not on its surface about end of life care specifically or how to make end of life decisions - but I do want to address this a little bit because it may be important to you as the situation with your grandmother develops. Atul Gawande's most recent focus has been on end of life care. His book Being Mortal, would probably be the absolute best thing to read if you're interested, but he also has a few excellent articles that illustrate why people do not always choose the most aggressive medical care, and what happens when they do or they don't.
Suffice it to say that anyone who thinks a feeding tube or nutrition via TPN is a simple decision that should be made for everyone who cannot eat does not fully understand the implications of that assumption (although TPN does not require surgery, it has significant risks). It's certainly something I would be unlikely to choose for my 90 year old self or loved one.
posted by treehorn+bunny at 10:43 PM on June 25, 2016 [12 favorites]
- Re: "breaking her neck", as noted, this can mean a lot of things, anything from a relatively minor transverse process fracture to a very unstable fracture that poses a serious threat to the spinal cord. Here's a link to a list of types of cervical spine fracture with stability listed.
- A week of not eating: not a very big deal, to a relatively healthy person. People go a week or more without eating all the time while they cannot eat for other reasons. Initially you just need fluids and glucose in the IV, eventually if it becomes prolonged you can need a product called TPN that provides other types of nutritional supplementation. The bigger thing is whether she's actually up and about or not. Lying in a bed all day is very problematic for a person because they become deconditioned (muscle atrophy) and can also develop other problems related to being immobile, like blood clots in the legs, pressure ulcers/wounds of the skin, and urinary tract infections if they require catheters for toileting. It's also bad for people cognitively not to be stimulated and to be in unfamiliar settings. So for an elderly person in their 90s who is usually relatively frail to start with, this is usually a really tough thing to come back from, and whether they can make it back has a lot to do with their initial physical condition when the injury happened, and how good the rehabilitation care that they're receiving is. People can definitely look like they are dying and come back from it, but in most cases, they had some kind of reserve capacity because they were in relatively good shape for their age (or were young).
- "the family has accepted the risk of aspiration for solid foods and the doctor had approved it" - "now she's able to eat like a tablespoon of food at every meal, and they're feeding her a little thickened water". Basically, it sounds like it's not technically "safe" for your grandma to eat, because she's at risk of aspiration. However, many people feel that they'd rather have the opportunity to eat and drink and risk aspiration (which can kill a person, by the way, but in my opinion it's a perfectly reasonable thing to feel that it's worth risking that to be able to drink and eat in an end of life situation).
Let's remember that we don't have the whole story here. I very much doubt that she's not getting a necessary surgery JUST because she's old. Surgeons routinely perform surgery, including highly invasive surgery like heart surgery, on very old people in their 90s, but the key to whether or not that should be done is what their level of function and comorbidities are. If you have a bed-bound person with metastatic cancer, end stage COPD, and severe heart disease, for example, it would be criminal to do a hugely invasive surgery on them that they'd have essentially no chance of surviving and would cause a lot of pain and suffering for them at the end of their life. Same thing goes for a patient with severe dementia who also cannot understand why you're doing things that hurt them.
Also, it pains me to see so many negative things being said about hospice here, as I am a huge proponent of palliative care (and hospice, when appropriate). The entire point of hospice services and palliative care is to relieve suffering at the end of life. Also, patients receiving palliative care can actually live longer than patients who choose to receive only aggressive medical care. Not only that, but doctors - the people who best know and understand the odds of success and what is involved in the various treatments, by huge majorities, would never choose a death with aggressive medical care. There's a good reason for that. I don't want to get into arguments with other posters, here, because really your question is not on its surface about end of life care specifically or how to make end of life decisions - but I do want to address this a little bit because it may be important to you as the situation with your grandmother develops. Atul Gawande's most recent focus has been on end of life care. His book Being Mortal, would probably be the absolute best thing to read if you're interested, but he also has a few excellent articles that illustrate why people do not always choose the most aggressive medical care, and what happens when they do or they don't.
Suffice it to say that anyone who thinks a feeding tube or nutrition via TPN is a simple decision that should be made for everyone who cannot eat does not fully understand the implications of that assumption (although TPN does not require surgery, it has significant risks). It's certainly something I would be unlikely to choose for my 90 year old self or loved one.
posted by treehorn+bunny at 10:43 PM on June 25, 2016 [12 favorites]
Also, it pains me to see so many negative things being said about hospice here, as I am a huge proponent of palliative care (and hospice, when appropriate). The entire point of hospice services and palliative care is to relieve suffering at the end of life.
The ideal is one thing and the reality and execution another. it pained me to find out that my mother's hospice nurse had been writing down in official notes that her pain was a consistent 1-2 on the pain scale the whole time she'd been observing her, when my mother was screaming in the mornings and asking me in deep confusion what she was doing wrong, that they weren't helping her - should she complain less? It pained me when I called the after-hours line in near hysterics and they sent out a competent on-call nurse -- thus proving to me that they did have some -- but then would not consider changing the person in charge of her case to somebody, anybody, else. Their consistent concern was not to alleviate my mother's pain; it was to make me stop calling.
People are educated to believe that everything will be ok in terms of pain management and kind treatment just as soon as hospice takes over; I believed that and I was able to convince my mother to transition over because she believed it. People talk about Hospice nurses like they are angels on earth. I guess the idea is that it is such a harrowing job that only good people would consent to do it, which is a nice idea with no basis. Hospice personnel are no better than other health care professionals and in some cases they are much worse. They often have effectively absolute power over a person with none. The basic problem is that they can do, or not do, anything they want because the nature of their patients means nobody who is mistreated will survive to file a lawsuit or lodge a complaint. I thought that I would have some influence as a close relative and as a witness, but I was wrong.
It's not that people should be warned away from them, or that there is a better alternative if you are not extremely wealthy, but that the unrealistic expectation of wonderful help makes it seem worse and more shocking when you don't get it. Sometimes, I am sure, they are wonderful, but you can't count on it. You do have to continue vigilance and advocacy for your relative even when they are in hospice care; you can't just relax and trust even then.
posted by queenofbithynia at 1:18 AM on June 26, 2016 [2 favorites]
The ideal is one thing and the reality and execution another. it pained me to find out that my mother's hospice nurse had been writing down in official notes that her pain was a consistent 1-2 on the pain scale the whole time she'd been observing her, when my mother was screaming in the mornings and asking me in deep confusion what she was doing wrong, that they weren't helping her - should she complain less? It pained me when I called the after-hours line in near hysterics and they sent out a competent on-call nurse -- thus proving to me that they did have some -- but then would not consider changing the person in charge of her case to somebody, anybody, else. Their consistent concern was not to alleviate my mother's pain; it was to make me stop calling.
People are educated to believe that everything will be ok in terms of pain management and kind treatment just as soon as hospice takes over; I believed that and I was able to convince my mother to transition over because she believed it. People talk about Hospice nurses like they are angels on earth. I guess the idea is that it is such a harrowing job that only good people would consent to do it, which is a nice idea with no basis. Hospice personnel are no better than other health care professionals and in some cases they are much worse. They often have effectively absolute power over a person with none. The basic problem is that they can do, or not do, anything they want because the nature of their patients means nobody who is mistreated will survive to file a lawsuit or lodge a complaint. I thought that I would have some influence as a close relative and as a witness, but I was wrong.
It's not that people should be warned away from them, or that there is a better alternative if you are not extremely wealthy, but that the unrealistic expectation of wonderful help makes it seem worse and more shocking when you don't get it. Sometimes, I am sure, they are wonderful, but you can't count on it. You do have to continue vigilance and advocacy for your relative even when they are in hospice care; you can't just relax and trust even then.
posted by queenofbithynia at 1:18 AM on June 26, 2016 [2 favorites]
I'm a speech therapist, not a doctor, but I do work with older adults with trouble swallowing and that includes spinal fractures on occasion (though I'm not an expert).
People do bounce back from a week without nutrition all the time, though they might not be quite the same afterwards (though that's often more to do with whatever caused the week without nutrition).
It's difficult to understand the medical decision-making here without knowing more about the injury and what that means for prognosis. Unfortunately this is often not made explicit so families are left with incomplete understandings of the situation. It's hard to know whether your grandmother may recover but is currently being given best supportive care, or whether they are expecting this to end her life.
There are a whole load of reasons why she may not have a feeding tube. It may be very difficult to get a temporary tube down her nose and into her stomach due to the fracture and her head position. She may not be well enough for a surgically placed tube. Feeding tubes carry significant risks by themselves, especially if she is having to lie flat.
In terms of feeding now, the medical team have decided that she should be fed orally despite the risk of aspiration. This means that when she swallows, food and drink is likely to enter her lungs as well as her stomach. In a bedbound elderly person this carries a high risk of pneumonia, but it may still be the best option if tube feeding isn't possible or appropriate. It's also often psychologically beneficial both for the patient and the family.
Is the amount limited by the degree of risk? If not, is there any reason why she only gets food at mealtimes? I typically recommend that if someone can only take tiny amounts and we are seriously aiming at nutrition, that they should be fed every 30 minutes (unless they are too fatigued). If the main goal is comfort then it should be guided by what your grandmother wants. There are many ways of modifying risk when eating and drinking - I assume your grandmother has been seen by a speech therapist/pathologist and they have given advice about how to minimise risk. This advice is important and should be followed.
Best wishes, this is a very difficult situation.
posted by kadia_a at 1:25 AM on June 26, 2016
People do bounce back from a week without nutrition all the time, though they might not be quite the same afterwards (though that's often more to do with whatever caused the week without nutrition).
It's difficult to understand the medical decision-making here without knowing more about the injury and what that means for prognosis. Unfortunately this is often not made explicit so families are left with incomplete understandings of the situation. It's hard to know whether your grandmother may recover but is currently being given best supportive care, or whether they are expecting this to end her life.
There are a whole load of reasons why she may not have a feeding tube. It may be very difficult to get a temporary tube down her nose and into her stomach due to the fracture and her head position. She may not be well enough for a surgically placed tube. Feeding tubes carry significant risks by themselves, especially if she is having to lie flat.
In terms of feeding now, the medical team have decided that she should be fed orally despite the risk of aspiration. This means that when she swallows, food and drink is likely to enter her lungs as well as her stomach. In a bedbound elderly person this carries a high risk of pneumonia, but it may still be the best option if tube feeding isn't possible or appropriate. It's also often psychologically beneficial both for the patient and the family.
Is the amount limited by the degree of risk? If not, is there any reason why she only gets food at mealtimes? I typically recommend that if someone can only take tiny amounts and we are seriously aiming at nutrition, that they should be fed every 30 minutes (unless they are too fatigued). If the main goal is comfort then it should be guided by what your grandmother wants. There are many ways of modifying risk when eating and drinking - I assume your grandmother has been seen by a speech therapist/pathologist and they have given advice about how to minimise risk. This advice is important and should be followed.
Best wishes, this is a very difficult situation.
posted by kadia_a at 1:25 AM on June 26, 2016
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In my opinion it also drastically affected his personality and general cognitive level, though I live far away and only see him sporadically. So this could have been something that was a long time coming. But my impression was that he was a spry older dude, sharp as a tack, etc. before but now is much diminished. Possibly due to pain medications, now that you mention it.
But, yes, I was afraid he would die, and he didn't die. So I would say just keep living in the present and watch the situation develop. Don't look too far ahead to "what if my grandmother is dying". It doesn't actually accomplish anything other than making you anxious.
posted by Sara C. at 11:58 AM on June 25, 2016 [1 favorite]