Hospice with no IV?


#1

I'm trying to figure out what I should be doing in a difficult family situation.

My grandmother, who raised me until I was 14 years old, was hospitalized when I was 14 and then eventually moved to a nursing home. She regained most of her memory and some of her physical and mental abilities briefly, then both started a long gradual slide downhill. It is 13 years later, and she has just suffered another stroke and been put on hospice. She can move her legs and jaw a little, but not her arms, most of her face, or even her eyes (to look around), as far as I can tell.

The problem is that her hospice care does not seem to include giving an IV for a patient who cannot eat or drink.

As I understand the Catholic position, an IV is required unless it would do more harm than good. I don't know when an IV would cause more harm than good, and I don't know how to get an unbiased medical opinion about my grandmother's condition. I also don't know exactly what a Catholic definition of harm would be. If an IV prolongs her life but causes her pain, is that harm?

We know that at least one nurse, the head nurse, thinks that the efforts of one particular aunt of mine to keep my grandmother healthy are selfish (this is not gossip; she said as much to my aunt's face). These efforts primarily involved taking an hour three times a week to help my grandmother drink 12 oz. of a warm beverage, so she would be well-hydrated (each hour involved 4 hours of commuting, as the relative lives 2 hours from my grandmother). So there is clearly at least one person in a position of power on the staff with a euthanasia mindset.

My grandmother has 6 surviving children, and many grandchildren. I would be surprised if some of her children don't strongly argue **against **her receiving an IV. One of her children will probably back me up if I make a fuss **for **an IV, but probably won't do so without me. My sister who was also raised by her is likely to back me.

I am really scared to advocate for my grandmother's care, especially since I don't know exactly what her condition is and don't have any contact with the state-appointed guardian to figure out what my options are. Has anyone been through this? I don't even know what to ask. What to do, I guess? She has gone two days without food or water already.


#2

I am no expert but I think hospice is about comfort to the end. I am sure that being dehydrated is not comfortable. A simple Iv of fluids is not life prolonging. No one can survive on water, sugar, salt for more than a few days, but the comfort level would be improved.

Who is the court appt guardian? Speak to this person as this is the one that can effect change quickly and easily.

My prayers with you and family.


#3

What does your grandmother’s living will indicate with regard to life-extending measures? An IV at the very end of life is often harmful, prolongs the dying process, and is uncomfortable. We took my grandmother home on hospice without an IV. Stopping eating and drinking is a normal, physiological part of dying. Animals do it too. Is your grandmother appropriately medicated? Is she suffering? Has your grandmother’s priest been called? Best wishes during a difficult time.


#4

[quote="Camille_Alden, post:2, topic:241631"]
I am no expert but I think hospice is about comfort to the end. I am sure that being dehydrated is not comfortable. A simple Iv of fluids is not life prolonging. No one can survive on water, sugar, salt for more than a few days, but the comfort level would be improved.

Who is the court appt guardian? Speak to this person as this is the one that can effect change quickly and easily.

My prayers with you and family.

[/quote]

This is incorrect. The dying person typically does not want food or drink. As a patient nears death, pulmonary edema sets in as well as kidney shutdown. Extra fluids can and will accellerate the "drowning" of many near-death patients. It tends not to be appropriate to admin. IV fluids when a patient is very close to death.


#5

My grandmother is under a state-appointed guardian precisely because there was a question about her will. Also, since this all started long before Terri Schiavo, she might not have thought to make a living will even there. All I know is that she was Catholic, and I trust that more than I trust my other relatives to think of her wants rather than their own.

I don’t know if she is appropriately medicated or suffering. I will ask around about the priest.


#6

Thanks, this is what I will try to do. I’ve had trouble figuring out how to contact her in the past.


#7

[quote="MaryAnne77, post:4, topic:241631"]
This is incorrect. The dying person typically does not want food or drink. As a patient nears death, pulmonary edema sets in as well as kidney shutdown. Extra fluids can and will accellerate the "drowning" of many near-death patients. It tends not to be appropriate to admin. IV fluids when a patient is very close to death.

[/quote]

How can I know if this is what is happening in her case? I am trying to be very careful to get facts so that my own desire to avoid conflict doesn't bias me against helping my grandmother if she does need help. I am not confident that she would be near death if she had an IV. She has not been on an IV before this point.


#8

The three experiences we have had with hospice care did not include IV's.....even for hydration. I agree with the poster who said this would make the dying person uncomfortable as the kidneys shut down.

Please take the time to speak (discuss thoroughly) with at least three people to come to some understanding: 1. the guardian. 2. the manager of the hospice. 3. your Pastor, or your grandmother's Pastor.

Please make sure she has received the Sacrament of the Sick.

I have never heard of a nurse who would tell someone they were "selfish" without a really good explanation of what was happening to the patient. That is so UN-hospice.


#9

One of my close friends passed away this week in hospice care. He was not given hydration via IV either because he was dying and it would prolong his suffering. He was medicated with morphine and other medication to ease his suffering and nurses wet his lips with a sponge so they would not be dry.

You might find the following resource helpful.

usccb.org/bishops/directives.shtml#partfive

Sincerely,

Maria1212


#10

First of all, I am sorry for what you are going through.

priestsforlife.org/euthanasia/concerning-artificial-nutrition-and-hydration.htm

This addresses the topic a bit, here are some excerpts.
The Declaration on Euthanasia, published by the Congregation for the Doctrine of the Faith on May 5, 1980 , explained the distinction between proportionate and disproportionate means, and between therapeutic treatments and the normal care due to the sick person: "When inevitable death is imminent in spite of the means used, it is permitted in conscience to take the decision to refuse forms of treatment that would only secure a precarious and burdensome prolongation of life, so long as the normal care due to the sick person in similar cases is not interrupted" (Part IV). Still less can one interrupt the ordinary means of care for patients who are not facing an imminent death, as is generally the case of those in a "vegetative state"; for these people, it would be precisely the interruption of the ordinary means of care which would be the cause of their death.
On June 27, 1981 , the Pontifical Council Cor Unum published a document entitled Some Ethical Questions Relating to the Gravely Ill and the Dying, in which, among other things, it is stated that "There remains the strict obligation to administer at all costs those means which are called ‘minimal’: that is, those that normally and in usual conditions are aimed at maintaining life (nourishment, blood transfusions, injections, etc.). The discontinuation of these minimal measures would mean in effect willing the end of the patient’s life" (no. 2.4.4.).
In an Address to participants in an international course on forms of human preleukemia on November 15, 1985 , Pope John Paul II, recalling the Declaration on Euthanasia, stated clearly that, in virtue of the principle of proportionate care, one may not relinquish "the commitment to valid treatment for sustaining life nor assistance with the normal means of preserving life", which certainly includes the administration of food and liquids. The Pope also noted that those omissions are not licit which are aimed "at shortening life in order to spare the patient or his family from suffering".
In 1995 the Pontifical Council for Pastoral Assistance to Health Care Workers published the Charter for Health Care Workers, paragraph 120 of which explicitly affirms: "The administration of food and liquids, even artificially, is part of the normal treatment always due to the patient when this is not burdensome for him or her; their undue interruption can have the meaning of real and true euthanasia".
The Address of John Paul II to a group of Bishops from the United States of America on a visit ad limina, on October 2, 1998 , is quite explicit: nutrition and hydration are to be considered as normal care and ordinary means for the preservation of life. It is not acceptable to interrupt them or to withhold them, if from that decision the death of the patient will follow. This would be euthanasia by omission (cf. no. 4).


#11

Try the court-appointed guardian, but be aware that he/she might not want to or be allowed to give you specific medical information, unless you are listed in your grandmother’s “right to know” relatives. Is there any one of her children who would know what her true medical condition is? It’s always tricky because a lot of medical care providers are quite death-oriented and may not give you the truth, if it extends an older person’s life. This is just reality.

I will add you to my prayers. This must be distressing for you.:frowning:


#12

My DH was in hospice before he died. He was not given an IV with fluids because he was in kidney failure. The added fluid would have rapidly hastened his death. As it was, they were removing 2-3 liters of fluid from his belly about every other day because his system could not process it and excrete it. The nurses wet his lips with a sponge and gave him pain medication to keep him comfortable.


#13

First of all, my heartfelt sympathies for you in this very difficult situation. I went through this exactly one year ago with my Mom and I know how you feel

Maryann gave you good advice, it is true that when a person is ACTIVELY dying, I stressed tha t word because it means in the very last stages before actual death occurs, our bodies begin to naturally shut down. To force IV fluids would be more of discomfort than an act of kindness IF your grand mother has reached this point. Also if her heart of lungs are affected, and this is quite possible, the extra fluid makes more of a strain on an already compromised heart, same goes for the lungs. All that extra fluid could make breathing very difficult and cause much extra edema (swelling). My sister is a hospice nurse and I have many years of caring for the dying also, so I can speak with knowledge on this subject. Rest assured in the situation just described you are within Catholic teaching not to have any fluids. I dont know your grandmas medical situation and certainly dont wish to speculate and the only way you can get a clear picture is to talk with the hospice nurse who should be more than willing to answer your questions and explain your grandmothers disease process and where she is at in it at this time to you. Certain things are best answered by talking to the physician, but that again would depend on the legalities in your specific case of who the physician can legally give info to. Also there is probably more than one hospice available in your area They are to work WITH the family and if you don`t feel your grandmother is being taken care of according to family expectations I would contact another hospice. Hope this helps some and you and your grandmother will be in my prayers.


#14

I don't pretend to be an expert about any of this.

What I do think you might want to find out is what it means to be "put on hospice" in your state. It may or may not mean that the person is actively dying. But I believe that if a level of care above a certain point is to be given then the patient may have to be taken off of hospice. I think that may be the case with IVs. Hospice patients are ineligible for certain types of care.

This becomes an issue when a patient is unable to care for herself. If your grandmother was not actively dying it may not have been appropriate for your grandmother to have been put on hospice. If death was imminent and her body was beginning to shut down then, as others have noted, food and hydration would not be appropriate.

It's not clear from your post whether or not your grandmother is actively dying or whether she has just entered a state where she is physically stable but totally unable to care for herself.


#15

[quote="SMHW, post:14, topic:241631"]

It's not clear from your post whether or not your grandmother is actively dying or whether she has just entered a state where she is physically stable but totally unable to care for herself.

[/quote]

After talking with the deacon, talking with a good Catholic friend with a Ph. D. in Theology, and getting some additional advice from the priest, it is clear that this is the crux of the matter. I really can't tell. I would have thought that if she were actively dying, they would be doing more for her. I will go down there tomorrow, call the guardian ad litem, and see if I can determine who provides hospice care and talk to them. Meanwhile, maybe I can help her find some comfort by being there. And perhaps I can talk to some of my family directly.

I really hope there is no ethical violation here. I know that most people will not be happy if I say something, and this likely includes some people I dearly love and respect. The deacon told me to wait until tomorrow to do anything, though, so that is what I will do. "Do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own." And it's 11 PM here, so time for bed . . . soon.


#16

Sorry I haven't updated. My grandmother is 2.5 hours away, and I've been spending most of my time visiting with her.

It looks like my grandmother could live significantly longer with an IV, but that is moot (legally), and I can't know for sure. Apparently, 13 years ago the guardian ad litem spoke with my grandmother and my grandmother made it clear that she did not want extraordinary measures, and that included no IV for food and water in this kind of situation. At the time, the church had not clarified that IVs were not extraordinary measures, so this would have been in line with the current church teaching. Since she had been a nurse working at a rest home, she would have understood what she was talking about. Because of this, I can't even steer the conversation to the details of her medical situation. I don't think there is anything more I can do.

She has gone 6 days without food or water now and is still in the process of dying (which strongly suggests that it will be the lack of an IV that kills her :( ). She seems like she might easily live several more days. Watching her die is difficult. The nurses have not been doing a very good job of staying on top of her medication. One of my aunts has been taking on the lion's share of being with her, and is clearly getting tired but doesn't feel comfortable leaving when her mother hasn't been receiving good care.

Please pray for my grandmother, my aunt, the nurses, and all those going to spend time with my grandmother before she dies and is with God.


#17

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