6 Common Hospice Care Myths


How well do you know hospice?

Caregivers often have many misconceptions when it comes to this particular form of end-of-life care.

Lisa Erbstoesser, R.N., a former hospice nurse, and founder and president of See Me Communications, discusses and dispels six popular hospice care myths.

Hospice Care Explained

  1. The day that I call hospice is the day that I give up on my loved one. Probably the most difficult myth to overcome is the common feeling among family caregivers that calling hospice is akin to giving up, to letting your loved one die. But, Erbstoessser believes that nothing could be further from the truth. "In a lot of cases, calling hospice is the best kind of care you can give them at that time," she says, pointing out that the comfort measures administered by hospice care workers can manage pain and other symptoms very well. Hospice care concentrates on helping a person live well everyday.
  2. Hospice is a place. Hospice is actually just a form of end-of-life care. While formal care facilities, called hospice in-patient units, do exist, hospice care can come to wherever your loved one is living. Erbstoesser says that most people who go on hospice die in the place they consider to be home.
  3. My loved one has to have a specific diagnosis (usually cancer) to go on hospice. Erbstoesser says that this is one of the more commonly-cited misconceptions about hospice care. The reality, statistics show, is that the majority of people who go on hospice suffer from some type of chronic illness other than cancer. There are two primary requirements that your loved one must meet to qualify for hospice: they have to have a life-limiting illness in which they are not expected to live longer than six months (this can include cancer as well as things like congestive heart failure, Alzheimer's, and so on), and they have to be done seeking active treatment for that illness.
  4. Once they go on hospice, my loved one will be forced to stop eating and drinking. Your loved one can continue to eat and drink what they want while they receive hospice care. Erbostoesser points out that the one exception to this occurs when a senior is very near the end of their life. When death is close, your loved one may have their food and fluid intake limited, because eating of drinking has become too burdensome on their body and may actually make the dying process more difficult.
  5. Once they go on hospice, my loved one can't see their primary care doctor anymore. Your loved one's doctor will likely remain very involved in their care, even after they go on hospice, according to Erbstoesser. Hospice care teams are generally comprised of many different types of care providers, including: the hospice physician, the hospice nurse care manager, a chaplain, social workers, volunteers, etc. Each member plays a different role in caring for an ailing senior, but the hospice physician will collaborate with your loved one's primary physician to coordinate their care.
  6. My loved one died because I called hospice. Because of the intense emotions that surround hospice and end-of-life care, caregivers and close family members may find themselves feeling that their elderly loved one died because hospice was called in. While she admits that it is an understandable reaction, Erbstosser points out that this line of logic is a bit backwards. "People sometimes have anger towards hospice, but hospice wouldn't have been called in if your loved one wasn't already dying," she says. Hospice care won't kill an elder. In fact, research indicates that people who go on hospice tend to live slightly longer than those who don't. This is, in part, because the hospice care team takes steps to alleviate the symptoms that are putting so much strain on a senior's failing body.
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Hospice is good for some people, I'm sure. But when my father went into hospice they stopped giving him the meds that had kept him alive for so long. They started giving him an oral liquid (can't remember the name) that made his lungs relax so he could not breathe in the oxygen, and he immediately went down - was dead within 48 hours. This was, of course, after the hospital had kicked him out which we did not want. I think my dad could have lived another 2 months if we could have kept him on physicians' care with full nursing at home. But it would have been so painful for him and expensive. I feel the hospice liaison was either not totally informed or purposefully did not tell us that removing my father from his meds would result in his lungs giving up. The institutions both of the hospital and hospice seem a little too eager to get the old people out of the way. It is the new way. Be careful.
Myths about hospice are not necessarily myths. Many people have had bad experiences on hospice and it is not because they are grieving and misinterpret what has happened to their loved one.

I saw the good, the bad, and the ugly of hospice. My experience was fairly benign to what some have gone through, but it was because I had experience in the medical field (and plenty of experience with death and dying) and I kept up on everything that may be things were not worse. It exhausted me in addition to the normal exhaust a family member experiences during this phase.

(In addition to the things they did or did not do for my mom which could fill a book, I also had to experience rudeness and inconsideration from some of the staff personally who seemed to forget that my mother was dying! One example of "a moment" was when a nurse aide, who was substituting for our regular one who was very good, and who I had never met before asked me a question as soon as she walked in the door that it was none of her business - she wanted to know why my husband and I did not want children - it proved to me that these people were coming into MY HOME and then gossiping about us behind our backs. I would also like to tell her now that we lost 8 babies trying to have a baby and how in the world did she think I had the energy to go through a pregnancy while taking care of my terminally ill, elderly mother 24/7 who needed to be turned every 2 to 3 hours and all of the other care? This was a total invasion of my and my husband's privacy and the sanctity of our home!!!! But yet because I was a young woman in my early 30's (and probably looked like I was in my early 20's) who had been taking care of my mother who was in her mid 70's since I was in college they thought they had a right to judge me it seemed. They never had to face this kind of responsibility so how dare they think they could judge me and my decisions which were none of their business! I did not have to explain anything to them!!! I am also mad at one of the nurses who made a comment about me not feeling well one day - "well your house is clean." - as if to say how could I be not feeling well if I had the energy to clean my house. What was that about? I had cleaned the house over the weekend - it was possible to not feel well the next day!!! Not only that but I did not know at the time I had Multiple Sclerosis so it is very possible to feel good one minute and then feel horrible the very next minute with MS!!! What kind of mind games were they trying to play with me? I guess it did not matter that my mom was dying I should be perfectly happy, rested and Miss Sunshine all the time!)

I did an exit interview with the new administrator of the hospice a year after my mom died which was 18 months after I had had enough and took her off of hospice. I had learned that not long after I took my mom off that there had been a total sweep of the hospice management. They had gotten rid of the administrator, the nurse supervisor and the social work supervisor. One person alluded to the possibility that some of the reason this happened was because of the complaints I had lodged against these people for treating my mom and me the way we had been treated. I may have helped contribute, but I am sure I was not the only person not pleased with the service. I have no idea if the people who replaced these people did or are doing any better of a job. It has been almost exactly 11 years since my mom was on hospice. This hospice was suppose to be not-for-profit so I can only imagine those that are for profit are even worse.

Anyway... There are good folks who work in hospice and there are those who are not so good who work in hospice. When you get the not so good ones working in the management levels of hospice that it is not so good and they try to make the good ones give up the true mission of hospice. My experience is a very long experience with hospice, but I can tell you I have had enough of hospice to do me a lifetime. I would respectfully suggest to the nurse who wrote this article, that while we know what ideally hospice is suppose to be about unfortunately the world of reality is not always like this. Many times once a patient and his/her family figures out something is not right with hospice it is too late.
I have many friends who say hospice is the best gift they gave their loved one and their entire family. I have never witnessed or heard anything as negative as above posts. Perhaps it happens but I have seen nothing but love and compassion from the hospice groups I have been involved with over the years.