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Thread: The Hospice FAQ (Frequently Asked Questions)

  1. #1

    Default The Hospice FAQ (Frequently Asked Questions)

    This isn't a true FAQ, as it contains only real questions from real people...but I will publish pertinent questions and answers (with the writer's permission) to this page from time to time. Thank you for your input, questions, and for the times that you enlighten me!


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    IV Fluids at End-of-Life
    For someone with advanced Alzheimer's disease who stops eating and then drinking, is it "extraordinary" to provide intravenous hydration (not nutrients nor food)? Is there a universal answer and position by hospice caregivers, or is this one of those gray areas? Withholding hydration seems to be cruel, but maybe we don't have a proper understanding of the dying process of Alzheimer's disease. Can you help us?
    it depends...there are studies that show that a small amount of fluids (around 1000-1200 cc/day) prevents SEVERE dehydration and significantly decreases severe agitation at the end of life. This is also felt to not significantly prolong life, but it certainly may do so. Most studies do show that mild dehydration probably IMPROVES symptoms at the end of life, as the patient has less secretions to clear, and there is sometimes a clearing of the mental processes (though I wouldn't expect this in a terminal alzheimer patient) and even a mild euphoria.

    In the old, old days, this is how we left the earth a lot of times...we'd stop eating and drinking and would drift off into the next world without hydration because we didn't have IVs, etc. However, since we live in a world where we CAN give IV hydration, it raises the ethical question that you are struggling with. Do we, or do we not administer a therapy that we CAN provide, due to the availability of the technology? Is food and water a basic human right that should never be abrogated?

    In ethics, there are no absolute answers, I wish I could give you one. However, what I can do is point you to some articles that might help you to make your own decision. It certainly helps to know what the patient in question would have wanted....this is why we recommend Living Wills, as the question of hydration is generally discussed very plainly and you can specify "I want IV fluids" or "I authorize the withholding of IV fluids"...etc.

    here are some abstracts from some articles...if you want the full text, just print this out and take it to a medical library. The librarian can help you find them.

    Good luck, and I hope this helps

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    J Intraven Nurs 1997 Jul-Aug;20(4):193-200 Related Articles, Books

    Controversies in hydrating the terminally ill patient.

    Smith SA

    VA Medical Center, Wilkes-Barre, Pennsylvania, USA.

    It is a common practice in healthcare to provide comfort and relief from distressing symptoms with the use of intravenous fluids when the patient is no longer able to ingest an adequate amount of fluid. If hydration is not provided to a patient, the medical professional is thought to be negligent of the patient's needs, to consign the patient to a horrible death, and even to shorten the patient's life. On the contrary, dehydration in terminal illness has not been found to produce distressing symptoms or to shorten life span; it may even be beneficial.

    Publication Types: Review Review, tutorial

    Comments: Comment in: J Intraven Nurs 1998 May-Jun;21(3):138-9

    PMID: 9281960, UI: 97426837

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    Support Care Cancer 1997 May;5(3):205-11 Related Articles, Books, LinkOut

    When to treat dehydration in a terminally ill patient?

    Fainsinger RL, Bruera E

    Department of Oncology, University of Alberta, Edmonton, Canada.

    The need to treat dehydration in terminally ill patients has become a very controversial topic. Numerous reports in the literature illustrate opposing view-points from both clinical and ethical perspectives. Arguments for the maintenance of hydration in terminally ill patients have tended to come from "the traditional medical model". Many health care professionals looking after terminally ill patients have reacted to the generalized use of intravenous fluids in dying patients and the perceived negative effects of this management. Our palliative care group has argued that the viewpoint that dehydration in dying patients is not a cause of symptom distress overlooks commonly reported problems, such as agitated delirium, that can be prevented or reversed by the management of dehydration. This review presents a summary of the traditional arguments, a different perspective on the controversy, biochemical parameters reported in terminally ill cancer patients, recent dehydration research, and the use of hypodermoclysis and rectal hydration. We conclude that the data reported to date are insufficient to allow a final conclusion on the benefit or harm of dehydration in terminally ill patients. Nevertheless, it is worth considering that while some dying patients may not suffer any ill effects from dehydration, there may be others who do manifest symptoms, such as confusion or opioid toxicity, that might be alleviated or prevented by parenteral hydration.


    PMID: 9176966, UI: 97320082

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    J Adv Nurs 1995 Feb;21(2):295-8

    Principle-based ethics and nurses' attitudes towards artificial feeding.

    Day L, Drought T, Davis AJ

    Neurological Intensive Care Unit, University of California, USA.

    Nurses often institute artificial feeding for patients who would otherwise starve. Recently, the courts in the United States have favoured withholding or withdrawing feedings from patients who currently refuse or previously gave some indication they would refuse artificial nutrition and hydration. This paper investigates under what circumstances nurses feel justified in withholding artificial nutrition and hydration. Structured interviews were conducted with 40 cancer care nurses from two sites, and 40 dementia care nurses from two sites. The interviews were based on two vignettes, one involving an alert patient with terminal cancer, the other a patient suffering end-stage Alzheimer's dementia, and were analysed for themes coinciding with principles of deontological ethics. Investigators found that autonomy, beneficence and non-maleficence most often guided nurses' decisions to withhold or implement artificial feeding.

    PMID: 7714286, UI: 95230031

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    Nurs Case Manag 1999 May-Jun;4(3):152-7 Related Articles, Books

    Ethical dilemmas in artificial nutrition and hydration: decision-making.

    White KS, Hall JC

    Trinity Lutheran Seminary, Bexley, Ohio, USA.

    PMID: 10476185, UI: 99405080

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    Nurs Forum 1997 Jul-Sep;32(3):5-13

    Dehydration and hydration in the terminally ill: care considerations.

    Jackonen S

    Eastern Michigan University, Ypsilanti, USA.

    Debate continues about whether to withhold or withdraw intravenous, subcutaneous, or nasogastric hydration in the terminally ill. Nurses may be confronted with situations where the terminally ill patient or family must make a decision regarding hydration. Therefore, nurses must be knowledgeable about terminal dehydration literature and research. This article is a review of the literature on terminal dehydration. The focus is on the definition of terminal dehydration, physiological benefits and disadvantages of terminal dehydration, rationale for hydrating, review of research in terminal dehydration, physiological basis for comfort in the terminally dehydrated, and suggestions for research and practice.

    PMID: 9362876, UI: 98029163



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  3. #2

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    Hospice and the Nursing Home Patient
    First, I cannot seem to find any information on Hospice of Integrated Health Services. The Question: My Mom is already in a nursing home with the last stages of Parkinson's (dementia) in Arlington Texas. The nursing home has told us we should consider Hospice. We finally talked to the hospice Team manager who in turn explained to us and convinced us this is the way to go. After I got home and thought about it, here's the conclusion: A nurses aide goes in and cleans my Mom up about 3 times a week. The RN goes to check on her about every 14 days. Now, she's already in a nursing facility getting all the same treatment already. The only thing that's different is they bring in a different bed ( owned by hospice of course ). What is wrong with this picture? Do you find it quite strange that the nursing home is Heritage oaks, IHS, and the Hospice is Hospice of IHS. Does this mean the state is forking over money to 2 different agencies doing the same job at the same time?????

    First, I am very sorry to hear about your Mom! This situation is never easy, so please write if there is anything we can do to help.

    Regarding your question, it does seem that agencies could "double dip" that way, but in fact, the hospice becomes the "insurance company" and pays out all medical expenses that are hospice related, including paying for the nursing home room, etc.

    Now, what can hospice do that the NH can't do? 1) Bereavement care part of the difficulty in losing a loved one is the fact that no one is really trained to help the family through the process. Hospice workers are. You should receive counselling before AND after Mom passes away, for up to a year if you need it. 2) specialized symptom management hospice workers are specially trained to deal with symptoms at end-of-life, whereas NH and regular MDs are used to transferring people to the hospital when they become truly terminal, and doing all kinds of invasive things. If that's what you want, that's ok! But if not, then hospice is the way to go.

    Once a patient is in hospice, it is much less likely that a zealous Nursing Home employee will transfer the patient to the ICU at the hospital at the last minute because they didn't want the patient to die in the nursing home. This is generally perceived by family and caregivers alike to be a plus.

    Parkinson's is a "non-cancer" diagnosis, and as you guessed, hospice is a little less known for its help in this condition. There is little that "palliative care" can offer for the syndrome itself, so in the beginning it may seem like they're not doing a lot. And if that keeps up for a long time, your Mom could even be discharged from hospice for awhile, until such time that she began to decline again. Being discharged from hospice is not something many people can claim! At the very end, though, hospice SHOULD be able to offer comfort measures that regular health care providers don't know about. That's the theory, anyway. The practice is not always the same, unfortunately, but that's true of everything in life. Most people who have a loved one in hospice care are very happy with the care they receive. If you are not sure about doing hospice, THERE IS NO HURRY, in your case. There are ways to try to estimate prognosis in different conditions. People become eligible for hospice when their prognosis is six months or less. You can imagine that estimating this can be difficult/impossible, and is often akin to crystal ball reading!

    Take your time...if you feel pushed into it, you'll very possibly have a bad experience, as your mindset will not be positive toward the hospice system. Talk to other people who have had contact with hospice and see what you think! Feel free to write me anytime! your friend, steve


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    Patients Who Withdraw from the World
    I have a friend (48 yrs. old) in the hospital now for 3 weeks with stomach cancer. He is in pain, can't eat without throwing up and has been fitted with an intestinal feeding tube which he is not tolorating well yet. From the first day in the hospital, he has not wanted any visitors, has to be proded to get out of bed to walk, doesn't watch T.V., doesn't read or listen to music. He doesn't want his 3 year old daughter in the room because she makes too much noise. He is very grumpy as I imagine I would be too. My question is; Is this a normal reaction to a serious illness? Is it normal for people in his position not to want to see anyone? How can I help him? Do his many friends of 35 years just stay away and honor his request, or do we go and visit anyway? When we do visit, he is polite, but we have to get past the big note on the door "No Visitors", written by him.



    First off, I'm sorry to hear about your friend! And yes, this can be a "normal" response, but hopefully it will wear off soon. There are five stages of accepting a chronic (or terminal illness)...one of these is "denial" and one is "anger"...your friend could be in either of these and produce this "dysfunctional" response. I would THINK (though I could be wrong) that your friend really does want to see you, but is experiencing one of the following: 1) embarassment 2) self loathing (tubes, etc...feeling "weak" because he has a serious illness) 3) self consciousness (a form of #1) 4) self pity or he may genuinely feel so bad that having people around him makes him very uncomfortable. Is there a palliative care team at the hospital???? they should be consulted.

    This could simply be a manifestation of 1) physical symptoms or 2) DEPRESSION (which would be my guess). He doesn't need to deprive his 3 year old of his presence, but if he just feels so bad that he can't handle it, then his symptoms are not being adequately treated! Does this make sense, given what you know about the case?

    It is of course impossible for me to diagnose long distance, so I may be totally off base. I hope this helps. A palliative care consult team would be great...you have MDs, RNs, social workers, chaplains all involved, and they can generally get the patient (if appropriate) into the "acceptance" stage, where most of these problems generally go away. Thanks! Write back if I can help steve

    Thanks Steve for your response. You may post my question. And you are right about depression, denial and anger. I always forget about these emotions in our society of emotional denial and the "Take it like a man " attitude. I can see my friend doesn't want to be embarrassed or to look weak. He's always been independent, strong and in control. And I was expecting him to still be so. He seems to be feeling a little better now that the doctor has him on Prozac for depression (of course he's depressed!) He actually made a few phone calls yesterday and ate a popsicle! All the physical and spriitual help is available to him at the hospital. He won't accept any spiritual help, but maybe in time he will accept some. Thank you for your help and reminding me physical illness is not just about the bodily funcitons, but about the emotional function as well.


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    What Does It Mean to be Referred to Hospice?
    I just found out a few minutes ago that they are sending my mother home from the hospital in the care of hospic does that mean she is soon to die?

    Cathy

    Dear Cathy,

    I'm very sorry to hear about your mother! Hospice is generally called when a person has six months or less to live, according to the best estimate of the physician. However, I have had lots of people in hospice for much longer than that! In fact, one person we had was in hospice for 2 years before we released her from hospice care (because she was doing so well) and another was in for 4 years before he died.

    Often, consulting hospice just means that no further "curative" therapy is being considered, and comfort care becomes the most important goal.

    If you tell me more about the situation, I might be able to be more specific. You can call the social worker at the hospital and find out more about the local hospice, or talk to the hospice people directly. Didn't the medical team discuss this with you? I hope they did!

    hope this helps, feel free to write back anytime.

    your friend,

    steve


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  4. #3

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    Nebulize Morphine
    Hi Dr. Baumrucker,

    It's me again. We have just started a pt on the nebulized MS. Being as this is our first experience, I have a couple of questions if you have the time to listen.

    When patients use the nebulized MS, how do we know when to increase the dosage or if to increase the dosage? And much to increase in a normal titration, if that's not an oxymoron!

    If it "works", use the same dose...if there is no response, increase by 5mg increments until you hit 20-30mg. If there is no response by 20-30 mg, it probably isn't going to work, and I'd quit. Now, are there good studies to back this up? Not in the slightest! But this is the way it is done, until we do get studies to tell us something.

    Does the neb MS tx loosen the sections in the lungs and the bronchial areas?

    sure enough, just like *any* nebulizer treatment would, saline or otherwise. The Noseda trial showed that people received a subjective benefit no matter what was used, opioids or just normal saline.

    After a patient has had a treatment, are they likely to cough up larger quantities of the secretions?

    maybe...albuterol it ain't, but it probably does relax smooth muscle (if they don't have an asthmatic response). The only studies we have on this (that I am aware of) were done on bovine models (i.e., cows), so the data isn't there.

    One last question (for the moment), is it OK for the patient to still use the inhalers? If so, should they be used before or after the neb MS tx and is there any time frame that should be observed between the MS and the inhalers if OK to continue to use them?

    Use the inhalers as normal, as if you weren't giving anything else. Same with updraft treatments.

    Thank you again. This is a new area for us and I am very interested in learning anything new that will ease the discomfort of any of my patients and their families. I truly appreciate the time you've taken to help.

    Ok! Just be aware that you are performing an experimental therapy, that has yet to be properly validated by scientific study. But a lot of palliative care is like this, so you're not alone.

    transported

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