Is 'Going Hospice' a stigma?

  1. My nurse buddy and I just got together for our regular walk and lunch. I was telling her the story of a patient I had recently who was an endstage COPDer. There was the question of possible Hospice and a conflict between our inept social services director and the doctor as to the patient's wishes. The social worker had let me know that there was a conference with the family at 1PM and later said that everything was a go for the patient to go home on Hospice.

    At 4PM the doctor called saying that when he spoke to the patient in the morning, the patient had expressed that he didn't want Hospice but wanted to go home with a hospital bed and some home health help.

    We all know our social services woman is a flub up, so I decided to go directly to the patient and ask him his wishes, explaining the choices in a frank manner. He just didn't like the idea of Hospice, and just wanted to go home with a hospital bed.

    My friend and I agreed that Hospice is rather an undignified stigma for many, and too narrow of a program. A patient prefering a simple comfort care plan should be entitled to Hospice type services without being labeled "Hospice" which means "Sentenced to Death" in many people's minds. The Hospice program here has a lot of requirements. And, the word Hospice is a turn off to many patients and their families.
    Last edit by FireStarterRN on Dec 20, '07
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    About FireStarterRN

    Joined: Jun '07; Posts: 5,292; Likes: 7,635
    Specialty: 15 year(s) of experience in LTC, Med/Surg, Peds, ICU, Tele


  3. by   Kyrshamarks
    I think that you may need some teaching on what hospice really does also. Hospice is much more than a death sentence.
  4. by   FireStarterRN
    I know exactly what Hospice is, I'm talking about the perception of the public and it's reluctance to enter Hospice because of that perception. My friend and I think that there should be a more comprehensive comfort care program aimed at providing comfort care, without the restrictions of Hospice and the negative connotation the word evokes in peoples minds.
  5. by   freesia98
    Been in hospice care for 6 years. It is the comprehensive comfort care program aimed at providing comfort care. Which restrictions are you referring to? Most hospices are able to choose which services they will provide over and above medicare guidelines. No two programs look the same and many areas are served by more than one. Since the "for profit" folks found out there is money to be made in hospice, you might be supprised by what your patient could be eligible for in the right program.
  6. by   nyapa
    The patient should get what he wants. End of story.
  7. by   mom and nurse
    Quote from dar15
    The patient should get what he wants. End of story.
    I agree. Over the summer I worked with many "hospice survivors" and I'm a friend of someone who went into hospice about 3 years ago and now lives in an independent living facility. So it's definitely not a death sentence. Also, it was my understanding that hospice nurses often go to the patient's home.....
  8. by   kangashere
    I am a patient care volunteer for a non-profit hospice. I can say that they are great, and really work to provide the client with that they need. and want Sometimes that is home visits by a RN, sometimes that means staying at the hosice house, or it could mean having a volunteer provide companionship. I agree that not all hopsices' are equal.
  9. by   kyhospicenurse
    I agree with you as far as the perception of the public in general but talk to someone who has had a family member in hospice or someone who has been discharged from Hospice for improving and no longer eligible. Hospice is not a narrow program. The problem in my opinion stems from doctors perceptions of Hospice and discouraging patients who do want Hospice because they are tired, they want be be comfortable and treated with the dignity and respect that they get from their Hospice team. Doctors for the most part arent going to encourage someone to join hospice until they can no longer get by with the testing, appts etc that they are charging the insurance companies. To them its not the care of the patient or what is best for the patient, its the almighty dollar. Educating the public as well as the doctors, nurses, etc in what Hospice is all about and getting rid of that stigma.
  10. by   scallisto
    There is another "comprehensive comfort care program", it's called palliative medicine. There are docs who specialize in this type of medicine, and most usually lead a palliative care team. Most hospitals where I live have them.

  11. by   FireStarterRN
    It sounds like there are a variety of programs out there requiring different criteria. Unfortunately, the public thinks of hospice as a death sentence. The one here requires that patients have a prognosis of <6 months to live and they are not allowed to pursue curative treatments.
  12. by   leslie :-D
    i wholeheartedly agree, that public perception is everything.
    anyone working in hospice, is fully aware of its philosophies and endeavors.
    yet, inevitably, it is still perceived as a death sentence.
    and living in a society where death is staunchly relegated to a dreaded finality, it's no wonder there is such ambivalence about its services.
    dang, just being a hospice nurse, i do not have the privilege of venting on this bb or talking about my day w/my husband.
    afterall, no one wants to hear about the gore, the pain/suffering, that frequently comprise many of these very sick people.
    but this is what i experience, working in an inpt facility.
    the paradox is, that as much as people want to disregard the reality of death and dying, it is these very same people, who are most awestruck and affected, when actually having an experience w/hospice.
    no one wants to think about it, no less talk about it.
    yet, whenever the subject of a death arises, it attracts scores of interested lurkers.

    even though many hospices have not expanded their scope of practice, i do embrace the umbrella concept of palliative care.
    even though one can be in the end stage of their disease process, they can still opt for life-prolonging interventions.
    hospice would not allow that.
    so, in order to agree to hospice services, one truly needs to be certain that they have had enough, and any further tx would only serve to be futile and invasive.

    so yeah, i do agree w/you RN, that it is terribly stigmatized, even though i find it a most precious option.
    a darned good hospice service, can and will be the difference between living miserably or dying well.

    just like nsg, hospice needs to change its image, in hopes of attracting a much more appreciative, respectful and informed audience.

    once we, as a society, can start accepting death just as much as we embrace life, then we will be headed in the right direction.
    in order for us to even begin such a journey, we need to stop obsessing over remaining eternally young, beautiful and immortal.
    we need to truly honor the elderly amongst us, recognizing the journey they've taken, and learning from their wisdom:
    also acknowledging they will soon, be continuing their journeys elsewhere.
    we just can't be afraid of aging, getting old and the inevitable outcome.
    plastic surgery and other quick fixes, only serve to sugarcoat the lies.
    once we can become more honest w/ourselves, this will enable us to seek other meaningful truths.
    and one of the inescapable truths is, that earth is only temporary.
    no getting around it.
    when we 100% acknowledge and accept this, we can help ourselves and ea other, in making our departures, much less dreaded, and more complete.
    afterall, we are deserving of that much.
    wouldn't you say?

  13. by   FireStarterRN
    Awesome post Leslie! :yeahthat: You are a poet...
  14. by   fmrnicumom
    Do most hospices have requirements such as <6 months and no further treatment? Please forgive my ignorance. Whatever the requirements may or may not be, I know that hospice can be a wonderful option. My grandma used hospice in 1997. She had fought leukemia for years, but she had horrible allergic reactions to some treatments, and she said the others made her feel so sick she'd rather enjoy what time she had left as best she could than feel that way. Once she became so sick she was unable to do many things for herself, hospice came in. They were truly angels and they made sure she was comfortable and it was easy to see they loved what they did, as hard as hospice can be.

    I agree, there is a stigma to hospice. I wish there wasn't, because I know how beneficial hospice services can be. I saw what an enormous difference they made for my grandma. I probably should add that she was not afraid of death. Her belief in God was very strong, and she knew where she was going. I think that helps.

    Leslie, *awesome* post! You are definitely right that we, as a society, place too much value on the wrong things.