Why do so many people fear hospice? Sorry so long...

[RN2B73]

:redbeatheHello everyone,

I am a pre-nursing student but my question applies to some personal experiences of mine.

My father passed away a little over a year ago from lung cancer. He came to live with me three months prior to his passing after being recommended to hospice care. Although most of the his care fell on my shoulders, the hospice staff, including nurses, counselors, secretaries, etc. were some of the most selfless and caring individuals I have ever come across.

So many times when mentioning that my father was in hospice care, people would turn their noses up, as if to say "oh I would never". I don't get it. I mean I have to admit even convincing my father that hospice was a good thing was a challenge. Luckily, he finally agreed and they not only provided support to him but to my entire family as well.

Now my grandmother (my father's mom) is now in end stage COPD and the hospital has made it clear there is nothing that is going to help her get any better. They keep bringing up hospice/comfort care to my Aunt, who has the final decision and AGAIN, all I hear is I WOULD NEVER! Never what? Provide your loved one with the compassion and dignity that they deserve

at the end of their life? Guarantee that their passing will be as peaceful and painless as possible?

Well, I think I finally have her talked into what would be best for my grandmother and that is to provide her with comfort care and to stop forcing medical intervention when it has absolutely no impact. No more vents, no more poking and proding. Now the chaplin and my Aunt bring it up to my grandmother and she REFUSES to have anything to do with hospice. She says send me to a nursing home but leave hospice out of it.

I am so sorry for such a long post but I just get so frustrated. My father and I had such a good experience with all the angels of hospice and I hate that so many others who truly need them refuse to accept their care.

I realize that it is a very difficult time when hospice is recommended for anyone but the outcome will inevitably be the same. Why not try to ensure that everything that can be done, is done at that most difficult time.

My thanks goes out to all hospice employees who choose to make a difference when it truly matters most.

THANK YOU:redbeathe

[sharlynn]

I think Hospice represents death and most patients and/or relatives don't want to admit to themselves that nothing more can be done and death is all that is left.

It's sad, because the end of life should be as painless as possible for everyone involved.

[aimeee, BSN, RN]

There are many many misconceptions about hospice. There is often a confusion between cause and effect. When very late referrals are made then people associate hospice with the last few days of life, and then because they associate it with the last few days of life, they defer enrolling until death is imminent. Its a vicious cycle.

Before starting a conversation about hospice, its good to find out what people know about it, or THINK they know about it. Sometimes, with education, the myths can be dispelled, but sometimes it doesn't matter what is said. The fears and misconceptions are too deeply engrained already.

[AtlantaRN, RN]

It's like my pancreatic cancer patient who denies she is in pain, BP through the roof and 3+ edema to feet---if I don't take the pain meds or my lasix I don't have pain or swelling. We have a death defying society....

some folks think hospice is like we "make people die" or somehow "quicken" the process--when in reality, folks are going to die anyway. Few people are afraid of death, most are afraid of pain....

[tewdles, RN]

What is interesting to me is that people will refuse a hospice informational visit, even though they have no idea what hospice means, what the goals are, and how the philosophy might benefit them or their loved one. They make decisions based upon ignorance. Heck, many health professionals are ignorant of hospice practices so I can't hold it against a lay person in distress.

When we conduct information visits we generally inquire about the knowledge base of the client/family relative to hospice. I ask them what they know, what they've heard, what they would be anxious about. This allows me to directly address their misinformation in a way that is non-judgemental and informative.

[tothepointeLVN, LVN]

Sometimes the train of thought is for every day we refuse hospice is one more day we can pretend death is not coming.

[westieluv]

I used to do hospice informational visits in a local hospital, and one day a patient's physician said, right in front of the patient (who was suffering from Stage IV lung cancer) and her family, "But if she agrees to go on hospice, then we will have to D/C all of her blood pressure meds and everything!" I mean, if a doctor doesn't even understand the whys and hows of hospice, then can you imagine what the average lay person must think? I quickly reassured the doctor, patient, and family that the patient would definitely NOT have to be taken off of all of her daily meds if she accepted hospice care, but the damage had been done. Hospice = immediate death. That's what way too many people believe.

When I was a hospice intake nurse, one of the most frustrating things that I had to deal with was trying to find a nurse to do a spur of the moment SOC on a patient who was already actively dying. I would finally find someone willing to do it, and the patient would end up dying within hours of the SOC, in fact, some even died DURING the SOC. But nope, can't admit that Grandma's dying and needs symptom management until she is within 24 hours of death. That wouldn't be compassionate, it would be "giving up", even if she is obviously suffering.

So frustrating!!!

[tadahh99]

Veryy good points westieluv! I have been a hospice nurse for several years and have worked on a hospital floor where we frequently received hospice patients as well. I have encoiuntered so many patients and families over the years who are against hospice. There are SO many misconceptions. Many people do equate hospice with death. I can't begin to tell you the number of times I have heard someone say we put aunt so and so on hospice and she died the next day ... etc. I think that many times these poor patients are held onto so much longer than they should on the hero end of things .... endless treatments with poor outcomes expected and families grasping at them because the doctors told them their might be a small chance. When you are facing the end of life for a loved one you hear only that there is a chance that a treatment will work.... rarely do you hear that the chance is only 2% or even 10%.... people latch onto the chance alone. Hospice feels like giving up to many families from what I have encountered and often the doctors help to court this feeling when hospice is finally presented.