Hydrating a Hospice Patient with Esophageal Cancer
October 9, 2013 11:07 PM Subscribe
My father is a terminally ill hospice patient, who has esophageal cancer. I and his wife (my mother) want him hydrated and I want to know, from those who are medically knowledgeable, what a good level of hydration would be for him.
My father is a terminally ill hospice patient, who has esophageal cancer. I and his wife (my mother) want him hydrated and I want to know, from those who are medically knowledgeable, what a good level of hydration would be for him that would result in him not being dehydrated to death, yet also not being over-hydrated such that it causes edema or fluid in the "third space", heart failure, etc.
If interested in responding, PLEASE have the respect not to go for the "don't hydrate at all" angle often argued by hospice. I need to use my very limited internet time to read answers to the actual question posed, and I need not to be stressed out by more people insisting that my father be dehydrated to death, to which I could not be more morally opposed.
I'll try to give the necessary information, but if there is something important I've forgotten please ask.
He is 80 years old, probably about 5'8", maybe 150 pounds? Has been bedridden at home in hospice for a little over a week, and was in a nursing home for a little over a week before that while I moved cross-country to be with my parents (because my mom could not handle him at home at that point without me). He has not eaten for probably 2 weeks anything substantial, due to mechanical blockage. His nausea is under pretty good control with applications of anti-nausea cream, so he's not losing fluids that way. During his time in the nursing home, he was taking some fluids by mouth, uncertain how much but certainly not enough. When he was home at first he did not take fluids by mouth, but in the last few days has eaten a few popsicles and drank small amounts of water/juice/milk. He also didn't have the IV fluids for the first few days, as we had to push heavily for them. He is producing urine but it is very dark.
My father himself is in and out of mental clarity, but has always said he wants to be hydrated.
When he was finally prescribed fluids by the medical director of hospice, it was only 30 mL/hour, which translates to 3 cups of water per day. This sounds excruciatingly low to me.
The medical director visited today to assess him and refused to increased the hydration amount--not because there were any signs of edema, heart failure, etc but because of what theoretically "could" happen if he is over-hydrated. He and the hospice nurses have repeatedly mentioned that over-hydrating can cause problems in "many" patients, but there has never been any indication that they have any reason to believe that my father in particular needs such an incredibly low level of hydration to avoid these problems.
In fact, some of the reasons often given for not hydrating don't apply to him (for example, he already had a Groschon, so didn't need a hospital trip or any extra discomfort to put the line in; also there is no indication that his organs are "shutting down", he has good urine output based on the fluids given, etc).
My first question, actually, is can a man of his size and age even maintain life on 3 cups of water a day? What is the minimal amount of fluid he needs not to dehydrate to death? I have posed this question to a hospice nurse who very disrespectfully danced around my question entirely.
I have been Googling trying to determine how much fluid he should really get and am not able to come up with specific figures, other than to say that one study that hydrated at 1000 mL/day improved mental status much more than placebo.
I am morally opposed to starving someone to death as well (to the point that I lost friends over their opinions about the Terry Schiavo case), but I am probably going to lose that battle, as Medicare rules for hospice do not allow TPN and my mother (his wife, and his POA) wants him to stay in hospice and is opposed to TPN (mainly, it seems, for practical reasons such as she does not want him to produce additional feces). If it were up to me, I would probably move him to Home Health Care.
If there's any doubt: YES, I understand that he is dying, but if he dies not naturally but of hospice-forced dehydration, it will compound my grief with a tremendous amount of guilt.
My father is a terminally ill hospice patient, who has esophageal cancer. I and his wife (my mother) want him hydrated and I want to know, from those who are medically knowledgeable, what a good level of hydration would be for him that would result in him not being dehydrated to death, yet also not being over-hydrated such that it causes edema or fluid in the "third space", heart failure, etc.
If interested in responding, PLEASE have the respect not to go for the "don't hydrate at all" angle often argued by hospice. I need to use my very limited internet time to read answers to the actual question posed, and I need not to be stressed out by more people insisting that my father be dehydrated to death, to which I could not be more morally opposed.
I'll try to give the necessary information, but if there is something important I've forgotten please ask.
He is 80 years old, probably about 5'8", maybe 150 pounds? Has been bedridden at home in hospice for a little over a week, and was in a nursing home for a little over a week before that while I moved cross-country to be with my parents (because my mom could not handle him at home at that point without me). He has not eaten for probably 2 weeks anything substantial, due to mechanical blockage. His nausea is under pretty good control with applications of anti-nausea cream, so he's not losing fluids that way. During his time in the nursing home, he was taking some fluids by mouth, uncertain how much but certainly not enough. When he was home at first he did not take fluids by mouth, but in the last few days has eaten a few popsicles and drank small amounts of water/juice/milk. He also didn't have the IV fluids for the first few days, as we had to push heavily for them. He is producing urine but it is very dark.
My father himself is in and out of mental clarity, but has always said he wants to be hydrated.
When he was finally prescribed fluids by the medical director of hospice, it was only 30 mL/hour, which translates to 3 cups of water per day. This sounds excruciatingly low to me.
The medical director visited today to assess him and refused to increased the hydration amount--not because there were any signs of edema, heart failure, etc but because of what theoretically "could" happen if he is over-hydrated. He and the hospice nurses have repeatedly mentioned that over-hydrating can cause problems in "many" patients, but there has never been any indication that they have any reason to believe that my father in particular needs such an incredibly low level of hydration to avoid these problems.
In fact, some of the reasons often given for not hydrating don't apply to him (for example, he already had a Groschon, so didn't need a hospital trip or any extra discomfort to put the line in; also there is no indication that his organs are "shutting down", he has good urine output based on the fluids given, etc).
My first question, actually, is can a man of his size and age even maintain life on 3 cups of water a day? What is the minimal amount of fluid he needs not to dehydrate to death? I have posed this question to a hospice nurse who very disrespectfully danced around my question entirely.
I have been Googling trying to determine how much fluid he should really get and am not able to come up with specific figures, other than to say that one study that hydrated at 1000 mL/day improved mental status much more than placebo.
I am morally opposed to starving someone to death as well (to the point that I lost friends over their opinions about the Terry Schiavo case), but I am probably going to lose that battle, as Medicare rules for hospice do not allow TPN and my mother (his wife, and his POA) wants him to stay in hospice and is opposed to TPN (mainly, it seems, for practical reasons such as she does not want him to produce additional feces). If it were up to me, I would probably move him to Home Health Care.
If there's any doubt: YES, I understand that he is dying, but if he dies not naturally but of hospice-forced dehydration, it will compound my grief with a tremendous amount of guilt.
Best answer: I'm very sorry to hear about your father. It's a difficult, awful time and you have my sympathies. I'm going to give you some details and take a little while to get to my answer not because I'm trying to dissuade you or dance around the answer, but to explain why my answer is a little fuzzy. My dad died of a neck cancer, too. IAA nurse, but IANY nurse and I haven't laid hands on a patient in years.
20-30mL/h is TKO ("to keep open" - a minimum flow through the line to keep it patent).
A normal adult needs about 35cc of fluid per kg per day, which is about 2L/day for a 150-pound person (around 80-85cc/h). Since your dad isn't being fed non-parenterally, his gut will be moving more slowly and he will be losing less fluid in feces than the average adult. Many cancer patients also have a decreased gut motility because they're on opiates, and sometimes because the cancer itself interferes with gut function (even outside of the terminal phase, even when the cancer isn't directly involved with the intestines, because sometimes tumors secrete cytokines that have distant effects.) So your dad will probably have considerably less fluid demand than a normal adult.
As you noted, fluid overload can results in peripheral oedema, pulmonary oedema, ascites, and heart failure. So that's to be avoided, too.
This handout (pdf) from the Medical College of Wisconsin's End of Life/Palliative Education Resource Center says about 1L-1.5 L/day is a reasonable volume. That's about what I would have guessed. If he blows his PICC or it gets infected, it'll have to be in boluses by rectum or by clysis (my dad didn't seem to notice clysis at all, so I'd plump for that).
All of this goes out the window if your dad's kidneys are failing. At that point, fluid can't get where it needs to be and it builds up, and he'd be fluid overloaded and still dehydrated, which is the worst of both worlds.
posted by gingerest at 12:14 AM on October 10, 2013 [8 favorites]
20-30mL/h is TKO ("to keep open" - a minimum flow through the line to keep it patent).
A normal adult needs about 35cc of fluid per kg per day, which is about 2L/day for a 150-pound person (around 80-85cc/h). Since your dad isn't being fed non-parenterally, his gut will be moving more slowly and he will be losing less fluid in feces than the average adult. Many cancer patients also have a decreased gut motility because they're on opiates, and sometimes because the cancer itself interferes with gut function (even outside of the terminal phase, even when the cancer isn't directly involved with the intestines, because sometimes tumors secrete cytokines that have distant effects.) So your dad will probably have considerably less fluid demand than a normal adult.
As you noted, fluid overload can results in peripheral oedema, pulmonary oedema, ascites, and heart failure. So that's to be avoided, too.
This handout (pdf) from the Medical College of Wisconsin's End of Life/Palliative Education Resource Center says about 1L-1.5 L/day is a reasonable volume. That's about what I would have guessed. If he blows his PICC or it gets infected, it'll have to be in boluses by rectum or by clysis (my dad didn't seem to notice clysis at all, so I'd plump for that).
All of this goes out the window if your dad's kidneys are failing. At that point, fluid can't get where it needs to be and it builds up, and he'd be fluid overloaded and still dehydrated, which is the worst of both worlds.
posted by gingerest at 12:14 AM on October 10, 2013 [8 favorites]
Mod note: A couple of comments deleted; OP is very specific that they only want answers for the main question of: "from those who are medically knowledgeable, what a good level of hydration would be for him," and "can a man of his size and age even maintain life on 3 cups of water a day? What is the minimal amount of fluid he needs not to dehydrate to death?" Thanks.
posted by taz (staff) at 3:14 AM on October 10, 2013
posted by taz (staff) at 3:14 AM on October 10, 2013
My suggestion is to try to alleviate some of the inevitable dryness of the mouth that develops towards end of life.
One side effect of being terribly ill is the feeling of dry mouth or actual dryness. Even if minimal hydration is maintained, the patients mouth gets very dried out. They aren't eating, usually they are mouth breathing, and not taking oral fluids all contribute.
Most patients in his condition are unable to handle any fluids by mouth. But it is possible to lessen the sensation of dryness.
Good oral hygiene is important. Your Hospice staff can help you. There are oral swabs that can be used with a bit of water that have lemon or minty flavoring that you can use to gently clean and coat the mouth. I have kept some of these swabs in ice to chill them, some patients like that.
Water with a tiny bit of Hydrogen Peroxide can be used to cleanse the crusty bits that always form.
Also, some patients develop an inability to swallow or handle any secretions. The use of gentle oral suction can help control this.
Maintaining your loved ones comfort and hydration will be challenging. He won't be moving much and his body fluids will will tend to settle into the dependent areas of his body. His energy expenditure will be minimal.
3 cups of water is 720 cc's. I have cared for patients with oral fluid restrictions of 1200 cc's. But they weren't totally bed fast and terminally ill. IMO being on the "dry" side might be more comfortable. As long as some of the more tactile side effects are controlled.
posted by moonlily at 3:50 AM on October 10, 2013 [4 favorites]
One side effect of being terribly ill is the feeling of dry mouth or actual dryness. Even if minimal hydration is maintained, the patients mouth gets very dried out. They aren't eating, usually they are mouth breathing, and not taking oral fluids all contribute.
Most patients in his condition are unable to handle any fluids by mouth. But it is possible to lessen the sensation of dryness.
Good oral hygiene is important. Your Hospice staff can help you. There are oral swabs that can be used with a bit of water that have lemon or minty flavoring that you can use to gently clean and coat the mouth. I have kept some of these swabs in ice to chill them, some patients like that.
Water with a tiny bit of Hydrogen Peroxide can be used to cleanse the crusty bits that always form.
Also, some patients develop an inability to swallow or handle any secretions. The use of gentle oral suction can help control this.
Maintaining your loved ones comfort and hydration will be challenging. He won't be moving much and his body fluids will will tend to settle into the dependent areas of his body. His energy expenditure will be minimal.
3 cups of water is 720 cc's. I have cared for patients with oral fluid restrictions of 1200 cc's. But they weren't totally bed fast and terminally ill. IMO being on the "dry" side might be more comfortable. As long as some of the more tactile side effects are controlled.
posted by moonlily at 3:50 AM on October 10, 2013 [4 favorites]
OP, I am sorry you and your mom and family are going through this. My father passed away at home (home care hospice) just four days ago. I know this is VERY, VERY hard. I can only give you a datapoint of my experience, as my dad had kidney/heart complications, not cancer. If you like, please memail me and we can talk.
The short answer in our case is that when dad was in the hospital (before hospice), he was experiencing edema and had reduced kidney function and was given as little as 500-750 ccs a day for probably close to a week. He was given several different drugs to improve kidney function and then could have as many as 1500, which was more than enough for him for several weeks. Eventually he never asked for more than 700 or so, and had to push him sometimes to drink enough to meet what the doctors recommended.
After he elected hospice, the hospice workers asked us to honor his wishes to give him as little or as much as he wanted -- fluid, whatever foods he wanted, whichever meds he wished to continue. So the questions we asked became, Are you comfortable? Is there anything you would like? We had to be careful not to push him to take something he didn't crave, and to listen to him tell us what his body wanted (versus what we wanted him to have).
But the nurses often told us, if he wants water, give it to him. This was in a glass, then a glass with a straw, then small squirts from a dropper/syringe, then finally on a sponge. When he could no longer swallow water, they encouraged us to help keep his mouth comfortable by helping him clean it with a sponge stick with a small amount of olive oil and alcohol-free mounthwash on it. He didn't take water the final few days, but he enjoyed keeping his mouth clean and would often push the stick himself. But we always gave him exactly the amount he asked for.
tl;dr: Our hospice experience defined the correct amount of water for the patient to be whatever amount the patient asked for.
posted by mochapickle at 5:45 AM on October 10, 2013 [10 favorites]
The short answer in our case is that when dad was in the hospital (before hospice), he was experiencing edema and had reduced kidney function and was given as little as 500-750 ccs a day for probably close to a week. He was given several different drugs to improve kidney function and then could have as many as 1500, which was more than enough for him for several weeks. Eventually he never asked for more than 700 or so, and had to push him sometimes to drink enough to meet what the doctors recommended.
After he elected hospice, the hospice workers asked us to honor his wishes to give him as little or as much as he wanted -- fluid, whatever foods he wanted, whichever meds he wished to continue. So the questions we asked became, Are you comfortable? Is there anything you would like? We had to be careful not to push him to take something he didn't crave, and to listen to him tell us what his body wanted (versus what we wanted him to have).
But the nurses often told us, if he wants water, give it to him. This was in a glass, then a glass with a straw, then small squirts from a dropper/syringe, then finally on a sponge. When he could no longer swallow water, they encouraged us to help keep his mouth comfortable by helping him clean it with a sponge stick with a small amount of olive oil and alcohol-free mounthwash on it. He didn't take water the final few days, but he enjoyed keeping his mouth clean and would often push the stick himself. But we always gave him exactly the amount he asked for.
tl;dr: Our hospice experience defined the correct amount of water for the patient to be whatever amount the patient asked for.
posted by mochapickle at 5:45 AM on October 10, 2013 [10 favorites]
30cc an hour is probably adequate under the circumstances. A person at the end of life has lower fluid requirements given their relative inactivity. A good level of hydration is one that causes more benefit than burden. Benefits and burdens are to some degree subjective, but generally benefits include . . .
- less delirium, more mental acuity
- prolonging life
- decreased sense of thirst / dry mouth
Possible burdens of hydration at the end of life:
- fluid overload. The heart may not be able to keep up with even a minimal amount of gentle hydration, leading to rapid accumulation of fluid in the lungs, causing shortness of breath and associated anxiety. This is a very real risk and one that the hospice people are trying to avoid.
- less delirium, more mental acuity. I think that most of us at the end wouldn't mind being less aware of the process of dying. But that decision is each individual's right to make.
Although this article is geared toward pediatrics, its conclusions apply broadly and its treatment of the topic of artificial hydration at the end of life is comprehensive.
My warmest wishes to you and your family. May this difficult time also be one of peace and healing.
posted by 6thsense at 5:54 AM on October 10, 2013 [2 favorites]
- less delirium, more mental acuity
- prolonging life
- decreased sense of thirst / dry mouth
Possible burdens of hydration at the end of life:
- fluid overload. The heart may not be able to keep up with even a minimal amount of gentle hydration, leading to rapid accumulation of fluid in the lungs, causing shortness of breath and associated anxiety. This is a very real risk and one that the hospice people are trying to avoid.
- less delirium, more mental acuity. I think that most of us at the end wouldn't mind being less aware of the process of dying. But that decision is each individual's right to make.
Although this article is geared toward pediatrics, its conclusions apply broadly and its treatment of the topic of artificial hydration at the end of life is comprehensive.
My warmest wishes to you and your family. May this difficult time also be one of peace and healing.
posted by 6thsense at 5:54 AM on October 10, 2013 [2 favorites]
For what it's worth, in my experience as a hospice volunteer, I have seen 720ccs on a chart on people who were peaceful and not uncomfortable. But unless it's been painkillers, I don't think I've ever seen a patient on an IV in hospice. Morphine button, sure, but not fluids.
If the hospice he is in has a social worker, please make an appointment with that person right away. I like the way you asked your question and separated our your concerns, and bringing something to that effect with you to the meeting will definitely help you navigate the intersection of your wishes, his wishes, and what is medically possible for your father.
posted by juniperesque at 5:54 AM on October 10, 2013 [4 favorites]
If the hospice he is in has a social worker, please make an appointment with that person right away. I like the way you asked your question and separated our your concerns, and bringing something to that effect with you to the meeting will definitely help you navigate the intersection of your wishes, his wishes, and what is medically possible for your father.
posted by juniperesque at 5:54 AM on October 10, 2013 [4 favorites]
mochapickle: Our hospice experience defined the correct amount of water for the patient to be whatever amount the patient asked for.
That was the same with my dad last year, colon cancer, he was in a hospice for a couple of weeks. He has siblings who are MDs so he'd asked them about what was going to happen. He'd pretty much given up on eating, although he would put on a show when we were there. He also stopped drinking but we had a brief conversation about how he might feel crappy with little water intake at all, and how that might affect what time he had left with us when we came to visit, and after that he took some sips to alleviate general discomfort. He was more concerned about the shunt/pump/painkillers.
But I agree with mochapickle, that there was no attempt to define/force water intake by the hospice. They just placed his interests, however defined, at the center of his care.
Take care.
posted by carter at 7:08 AM on October 10, 2013 [2 favorites]
That was the same with my dad last year, colon cancer, he was in a hospice for a couple of weeks. He has siblings who are MDs so he'd asked them about what was going to happen. He'd pretty much given up on eating, although he would put on a show when we were there. He also stopped drinking but we had a brief conversation about how he might feel crappy with little water intake at all, and how that might affect what time he had left with us when we came to visit, and after that he took some sips to alleviate general discomfort. He was more concerned about the shunt/pump/painkillers.
But I agree with mochapickle, that there was no attempt to define/force water intake by the hospice. They just placed his interests, however defined, at the center of his care.
Take care.
posted by carter at 7:08 AM on October 10, 2013 [2 favorites]
Best answer: Based on my calculations maintenance IV fluids would be 110 ml/hr, but there is plenty of room for variability. Typically when looking at hydration you look at the skin, urine (both amount and color; 35 ml/hr would be minimum in a healthy patient), mucous membranes (should not be dry and sticky), and tear production (eyes should not be dry). Given your father's condition these numbers can vary considerably and a good bit less might be perfectly fine. As mentioned above his comfort is the paramount consideration. If he is asking for more fluids then he should be given more. I find it strange that hospice is concerned about the ill effects of overhydration. Would they be as concerned about side effects of narcotics if he were in pain?
Having said that I am not a hospice professional nor familiar with the particulars of this case. To some extent you have to trust those who are. This sounds like a difficult situation for you on many levels and I hope things go as smoothly as possible in the next few days/weeks/whatever.
posted by TedW at 10:53 AM on October 10, 2013 [2 favorites]
Having said that I am not a hospice professional nor familiar with the particulars of this case. To some extent you have to trust those who are. This sounds like a difficult situation for you on many levels and I hope things go as smoothly as possible in the next few days/weeks/whatever.
posted by TedW at 10:53 AM on October 10, 2013 [2 favorites]
You want him to be hydrated for his comfort, so the mouth care regimen will be a big help. Talk to his health care providers 1st and try flat ginger ale, mild peppermint tea with sugar, and other pleasant flavors that are neither very acid or base. Clean his teeth with a wet piece of washcloth & your finger. My brother died of cancer, at home. We did the oral care, and he seemed to appreciate even after he was not really conscious. As the organs fail, there's a lot of blood and other stuff in the urine. Dark urine isn't just a sign of needing fluids.
I wish you and your family peace.
posted by theora55 at 11:19 AM on October 10, 2013
I wish you and your family peace.
posted by theora55 at 11:19 AM on October 10, 2013
It really is impossible to say over the internet, and I'm not a doctor, but from the information you've shared here, it sounds like medically, he could tolerate more fluids just fine. My medical experience is not with hospice patients, or with long-term IV therapy, only with in-patient hospitalized patients. And again, you need to be able to actually lay eyes on a person to say what is the right care for them.
You didn't say if you want any advice about how to address this with the hospice staff. Do you?
If so, I'd suggest an angle like this. Talk again to the medical director, or short of that, the nurse manager/supervisor. Stay calm and clear. Stick to your one main point:
"I hear and understand your concerns about fluid overload. From my lay-person's understanding, you could increase his fluids significantly without risking fluid overload. I feel very strongly that I want him to get adequate fluids. I understand that he is dying and I am not trying to delay that process." Something like that.
Also, if you do have a hospice nurse you've connected with at all, ask that person directly if they will advocate for you with the doctor. Or if they can advise you on strategy here.
Keep in mind, your hospice nurse has zero say over how much fluid your father gets. S/he is in the challenging position of having to implement orders s/he may or may not agree with, and also field questions from distraught family members s/he may not really know the answer to.
I'm really sorry you're going through this. It sounds like it feels powerless and really distressing.
Best,
posted by latkes at 5:27 PM on October 10, 2013 [2 favorites]
You didn't say if you want any advice about how to address this with the hospice staff. Do you?
If so, I'd suggest an angle like this. Talk again to the medical director, or short of that, the nurse manager/supervisor. Stay calm and clear. Stick to your one main point:
"I hear and understand your concerns about fluid overload. From my lay-person's understanding, you could increase his fluids significantly without risking fluid overload. I feel very strongly that I want him to get adequate fluids. I understand that he is dying and I am not trying to delay that process." Something like that.
Also, if you do have a hospice nurse you've connected with at all, ask that person directly if they will advocate for you with the doctor. Or if they can advise you on strategy here.
Keep in mind, your hospice nurse has zero say over how much fluid your father gets. S/he is in the challenging position of having to implement orders s/he may or may not agree with, and also field questions from distraught family members s/he may not really know the answer to.
I'm really sorry you're going through this. It sounds like it feels powerless and really distressing.
Best,
posted by latkes at 5:27 PM on October 10, 2013 [2 favorites]
This thread is closed to new comments.
posted by taz (staff) at 11:59 PM on October 9, 2013