Hospice Care Versus Palliative Care - page 2

by VickyRN Senior Moderator | 8,631 Views | 14 Comments

Hospice care is defined as support and care for terminally ill persons to help them achieve maximum comfort and the greatest satisfaction possible with remaining life. Its services are designed to optimize the care experience at... Read More


  1. 4
    My mother entered hospice care in 2004 in a long term care facility that offered several levels of care. As a hospice patient, she was in the lowest care level unit. That meant that her care was always the lowest priority in an understaffed LTC facility. My father was pretty obsessive about helping my mother, but the more he helped the less he'd to, to the point he provided most of her care when she was there — the aids saw him as a volunteer 1:1 aid. The problem was that he himself had terminal cancer and was getting progressively weaker. There were numerous incidents of neglect. The only way to make it work was to hire someone to be with her around the clock, or at least, during her waking hours.

    Another great disappointment was the lack of attention to my mother's psychological needs. If I remember correctly, she had a visit by a social worker once or twice a week. The rest of the time she spent in virtual isolation when neither my father or I were there. In fact, having a roommate just made things worse. (The room was virtually indistinguishable from a semi-private hospital room.)

    The staff was not able to keep clothing from getting lost. Each week you never knew what you were going to get. It sounds like a small think, but it's one of the few things that gives a patient a sense of identity, other than her wrist bracelet.

    That was at a facility that is an adjunct to a hospital with a good reputation. (In this area, "good" means mediocre at best, unless you're very wealthy.) Talking to the ADoN and DoN would merely garner excuses, until they finally admitted what the problem was: an insufficient budget and insufficient staffing. I'm sure there were a lot of Medicaid patients in the facility, and I don't know what the answer is, but it's clear that there is a terrible lack of concern for the elderly and terminally ill in this country. It's a moral scandal.

    In some poor countries, it is expected that family members will provide for all the non-medical needs of the patients, from food to clean sheets. Given our country's social structure, that would be very hard to do here, and given our wealth, it shouldn't be necessary, Ron Paul zealots notwithstanding.

    It would have been far better if she could have remained at home. She did not need sophisticated care; she need assistance with feeding and walking, and simple psychological counseling. There was no coverage for that, though. It was also difficult, given my father's declining condition. In retrospect, regardless of coverage, I'd have found a way to make home care work.

    I live in an area of the country that is particularly deficient in health care quality and availability, and my mother's facility does not represent all facilities in this area (though I know that there are worse, which is hard to imagine). Still, my own experience with hospice care can be summed up in one word: Neglect.

    As a society, we just don't give a d**n.
    tewdles, cherryames1949, Susie2310, and 1 other like this.
  2. 3
    Quote from Tragically Hip
    My mother entered hospice care in 2004 in a long term care facility that offered several levels of care. As a hospice patient, she was in the lowest care level unit. That meant that her care was always the lowest priority in an understaffed LTC facility. My father was pretty obsessive about helping my mother, but the more he helped the less he'd to, to the point he provided most of her care when she was there — the aids saw him as a volunteer 1:1 aid. The problem was that he himself had terminal cancer and was getting progressively weaker. There were numerous incidents of neglect. The only way to make it work was to hire someone to be with her around the clock, or at least, during her waking hours.

    Another great disappointment was the lack of attention to my mother's psychological needs. If I remember correctly, she had a visit by a social worker once or twice a week. The rest of the time she spent in virtual isolation when neither my father or I were there. In fact, having a roommate just made things worse. (The room was virtually indistinguishable from a semi-private hospital room.)

    The staff was not able to keep clothing from getting lost. Each week you never knew what you were going to get. It sounds like a small think, but it's one of the few things that gives a patient a sense of identity, other than her wrist bracelet.

    That was at a facility that is an adjunct to a hospital with a good reputation. (In this area, "good" means mediocre at best, unless you're very wealthy.) Talking to the ADoN and DoN would merely garner excuses, until they finally admitted what the problem was: an insufficient budget and insufficient staffing. I'm sure there were a lot of Medicaid patients in the facility, and I don't know what the answer is, but it's clear that there is a terrible lack of concern for the elderly and terminally ill in this country. It's a moral scandal.

    In some poor countries, it is expected that family members will provide for all the non-medical needs of the patients, from food to clean sheets. Given our country's social structure, that would be very hard to do here, and given our wealth, it shouldn't be necessary, Ron Paul zealots notwithstanding.

    It would have been far better if she could have remained at home. She did not need sophisticated care; she need assistance with feeding and walking, and simple psychological counseling. There was no coverage for that, though. It was also difficult, given my father's declining condition. In retrospect, regardless of coverage, I'd have found a way to make home care work.

    I live in an area of the country that is particularly deficient in health care quality and availability, and my mother's facility does not represent all facilities in this area (though I know that there are worse, which is hard to imagine). Still, my own experience with hospice care can be summed up in one word: Neglect.

    As a society, we just don't give a d**n.
    This is terrible, Tragically Hip, but I suspect not uncommon in the scandalously understaffed LTC facilities across our nation. Thank you for sharing your poignant, heartfelt account. I agree - the way we value and treat the elderly in this nation is disgraceful. I am so sorry that your mother experienced such lack of care and attention. No human being should ever have to endure such neglectful treatment, let alone the elderly and vulnerable. It is difficult enough having a loved one who is terminally ill and on hospice (I know -both my mother and sister were on hospice before they died and experienced peaceful deaths in the familiar surroundings of their respective homes), but to have to continually fight for proper care on top of the stress of watching your loved one slowly fade into an inevitable death would be horrible indeed. We all need to be advocating for better staffing in LTC facilities. Changes need to be made in the state legislatures; most laws concerning staffing in nursing homes have not changed since the 1990s, whereas acuity levels have risen sharply and reimbursements (Medicaid and Medicare) have dropped. Again, so sorry you and your family went through this.
    Last edit by VickyRN on Jul 21, '12
  3. 4
    Thank you for your reply, Vicky. It's been difficult for me because I've replayed the scenario a thousand times in my head, and now I know there are things that I could have done better, things that might have really improved my mother's situation. Five months after that my father was hospitalized for three months — he died in the hospital. My father's own doctors (in a cardiology practice) had no idea what was going on on the hospital floor, though many of his patients were at the facility. During the last week of his life, after the DNR was signed, the staff doctor kept pushing to have my father moved to hospice care, which I resisted.

    There was absolutely no coordination of care. That is a big problem in palliative and hospice care, but it's a disaster in standard hospital care. I was the default coordinator. My father's PCPs were way above all that. And he had so many doctor, few of whom said a word to each other. The biggest disaster: my father had a stent in a ureter to keep it open against the pressure exerted by an abdominal tumor. (The other kidney had already failed.) It had to be replaced periodically, every few months. I'd lost track of it, and so did everyone else, including the urological surgeon who at the time was the primary doctor. It led to kidney failure, which led to a cascade of very bad sequelae. My father's urologist pretty much yelled at me for neglecting to have the stent changed. At that point I was so beaten down that all I could do was stare. The doctor may have been right, but with tens of thousands of dollars per week going to his care, I found it hard to believe that no one among the doctors and hospital staff was keeping track of such critical things. What about people who had no one to advocate for them?

    As far as the subject of this thread is concerned, my father spent the last few weeks of his life on a med/surg floor, and there were problems in that environment as well.

    Some time after that, I enrolled in a year-long patient advocacy program, and I learned quite a bit about the business of health care, the incredibly complex public system, medical ethics, and the importance of having a care coordinator. I now have a certificate, but have found that the people who really need help are those with few financial resources. Also, the career is difficult to pursue without an RN license or MSW. I have helped some people, some of whom are lost in a system foreign to them. (Some had never been hospitalized in this country.) I learned quite a lot helping an elderly man who, while needing help with some tasks, had a great understanding how to get things done. He had Medicare part A but not B, yet managed to get everything he needed with respect to in-home nursing and rehabilitation (at a very advanced age, he received a hip transplant). I learned a lot from him. Unfortunately, those without his moxie and knowledge are left to twist slowly in the breeze, especially if they have no family or close friends who are willing to be involved in his care.
    tewdles, cherryames1949, VickyRN, and 1 other like this.
  4. 3
    Part of me wants to balk at the accusations levelled against LTC facilities, like "Nuh uh, we don't do that." But yeah, you guys are right. LTC facilities are horrible places for hospice care. I try, as an LTC floor nurse, to do my best with my hospice patients, but in that environment, the squeaky wheel is always the one that gets the most grease. Hospice patients that come through my facility are often obtunded, bed bound, and unable to make their needs known. They are most often placed on the rehab unit (as they are considered short-stay), where fully A&O patients are able to verbalize their needs and have them met. It's so easy for me to get incredibly busy with my 21 other (vocal) patients before I realize that my hospice patient's morphine is overdue and they're probably very uncomfortable.
    I also frequently see that hospice care is started a day late and a dollar short. The shortest time a patient stayed on my floor was a man who showed up around 3pm, got his PCA started by the the hospice nurse, and was gone by 8pm. The amount of pain that man was in was ridiculous, and if only his family would have accepted the prognosis, he would have been saved the suffering. I see it so often. I've had family members refuse to sign a POLST because they think it means we're just going to let their (mother/father/sibling/spouse) die. No amount of explaining that you can choose full treatment, and always change your mind will get them to sign. Their denial is so great, they don't even want to think about the possibility that their loved one could be in a situation that they may not survive. This denial and fear surrounding death is a social ill. People are so afraid of it, they refuse to think about it or discuss it until the very VERY last minute, and by then it's too late.
    And don't get me started on the horrible things people say to dying family members! Gah!
  5. 2
    There are many misconceptions and misunderstandings of what "hospice care" means. Palliative care is the portion of hospice care that can be shared with patients no matter their life expectancy.

    No matter where the patient lives, the hospice care will only be as good as the people running it expect and plan for it to be.
    VickyRN and cherryames1949 like this.


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