Hospice Nursing question

[RNDialysis80]

I have a question for all you Hospice nurses out there. When you present Hospice to a new patient and their family, do you actually tell them that it is "End of Life Care?" Or care to make someone comfortable in their last days? I have a family member that is in hospice, and it was presented to them in the way that they would be better cared for at home since they would have daily nursing visits.

I am not real happy with the way that Hospice was presented in this case. I would have liked that the person explaining it would have actually said that it was an end of life care, and that all t hey were going to do was make them comfortable and free of pain.

Any input would be appreciated.

[tewdles, RN]

I have a question for all you Hospice nurses out there. When you present Hospice to a new patient and their family, do you actually tell them that it is "End of Life Care?" Or care to make someone comfortable in their last days? I have a family member that is in hospice, and it was presented to them in the way that they would be better cared for at home since they would have daily nursing visits.

I am not real happy with the way that Hospice was presented in this case. I would have liked that the person explaining it would have actually said that it was an end of life care, and that all t hey were going to do was make them comfortable and free of pain.

Any input would be appreciated.

No, I don't always use that language. I do talk to them about their diagnosis, I ask them what the doctor told them about their condition and prognosis. I often tell them (in some fashion) the requirements of hospice, that is that they must be considered to reasonably have a life expectancy of 6 months or so. I also tell them that hope is not gone because they are choosing to actively treat their symptoms with hospice. I tell them that we work very hard so that they can do the things that they want and need to do in the coming months. I tell them that while they may have a terminal diagnosis, they are not done living just yet and that we will help them get the most out of what time they have.

I do ask the patient how they feel about going back to the hospital. It is generally important for the family to hear the patient say that he/she does not want to go there, does not want to be readmitted. This helps them to remember to call hospice if there are symptom management problems.

I generally try to find a moment in the admission process to make sure that the patient is aware that hospice will provide support for their family members for 13 months after their death.

Bottom line is that each patient is different and each family is different. It is very difficult to make all of the participants happy with the hospice info at time of admission. There is a great deal of info that could be shared at time of admission, but frankly, we cannot provide it all as the process is too lengthy and we wear out our welcome quickly. The case nurse is the person who verifies, supports, adds to, and clarifies info that is given at admission.

What is most important to me is to insure that the patient and family understand how hospice is different from traditional medicine, how it is paid differently, how that affects their ability to seek care for other concerns, what hospice does and does not include in terms of treatment. I must obtain informed consent at time of admission...so I want them to be informed.

My hospice has professionals who often meet the patients in the hospital prior to discharge where they explain more of the nuances of hospice and answer many of their questions. I can generally cut about an hour of visit time from the admission process if the patient has had one of those visits prior to my arrival in the home.

I am not sure how I feel about the "all they were going to do is make them comfortable and free of pain" part. Mostly because we do much more than that.

[RNDialysis80]

Thank you for your quick response, I really appreciate it. I did not mean to sound soo blunt when it comes to "..........being comfortable and controlling pain," I am just a little upset at the fact that the Hospice Admission NUrse(or coordinator) did not really explain what hospice was, the treatment you receive, and the ability to seek care from others. I myself am a Peritoneal DIalysis/Hemodialysis NUrse, and have worked with many hospice nurses who are wonderful at what they do. They provide compassionate care to those in need. I just dont't feel that way about the care given to my grandfather. He was never explained the truth since the beginning and wants to constantly call the Hospice nurse because he thinks they will do something to make him better. Again, I thank you for your help.

[Hospice Nurse LPN, BSN, RN]

I have to question the "daily nurse visits". The only time I see a pt daily is if they are actively transitioning and the team feels they need it. So sorry about your grandpa.

[tewdles, RN]

I do allow the family to have a voice in how often a nurse visits...and sometimes we have to negotiate.

There have been occasions where daily visits have been requested and are scheduled...but if in my nursing judgement nursing visits are not required that frequently, we will work to make sure that someone from hospice is there daily to provide support at the beginning of the hospice episode. My experience is that the vast majority of families will be okay with discussion about that frequency with an ultimate decrease in frequency shortly after that. Hospice is a collaboration between the patient and the professionals.

[cookderosa]

I have a question for all you Hospice nurses out there. When you present Hospice to a new patient and their family, do you actually tell them that it is "End of Life Care?" Or care to make someone comfortable in their last days? I have a family member that is in hospice, and it was presented to them in the way that they would be better cared for at home since they would have daily nursing visits.

I am not real happy with the way that Hospice was presented in this case. I would have liked that the person explaining it would have actually said that it was an end of life care, and that all t hey were going to do was make them comfortable and free of pain.

Any input would be appreciated.

I'm only a nursing student, so I'm answering as a consumer, daughter, grand-daughter. I have been through hospice with my 2 grandparents, and finally my mother 11 months ago. (we are a small family, so I was with my grandparents in their home; but with my mother, I moved her into my home and was her primary care giver) I hope my comments don't seem crass, however, I think it is important to be gentle and direct with the family.

(grandfather) Honestly, I was about 4 months into his hospice before I realized it was different from home health. I remember one nurse explaining to me that I wasn't allowed to call 9-1-1. I was shocked! (uninformed) So, they explained (not well) that there wasn't anything left to do, and that's why we were on hospice, not that it was a philosophical approach to end of life care. I didn't get it, because no one really explained it to me. I thought to myself, ok, so there is nothing to do for his lung cancer, but what if he has a heart attack? Surely that requires medical care! How will he get to the hospital?

Fast forward to my mother's situation. She was diagnosed with end-stage colon cancer and metastases in her brain, bone, lungs, and liver. She only lived 4 weeks. Interestingly, she was an RN for 45 years- and *I am sure she knew, though seeking treatment was never something she would have done. My mom's last 5 years of working were in long term care, so she believed in a natural life span.

For almost the entire 4 weeks, no doctor told us she was so close to dying, no one said "your mom qualifies for/should consider hospice" NONE. They all "suggested" it, saying that the "cancer is very bad" or that it "has spread" and continued to run tests. (Tests, aren't they to see what's wrong so we can treat?) They were always vague, and each doctor was very narrow in his discussion. "Your mom's colon surgery was successful, and best of all, we were able to avoid an ostomy, she should be able to resume eating normally." Then her oncologist scheduled radiation sessions. Her internist did his thing. We spent her life savings- $89,000 out of pocket to be exact. What was gained? Why couldn't all of the doctors/nurses/staff just be more direct? I don't mean give up hope- but they gave us false hope. No one wanted to be the "bad guy" and say look- you need to go home and love up on your grandkids. (at that time, my mom was still DRIVING)

So, for 4 weeks we started 8 medication and I took her to over 20 medical apts. We shaved her head and ordered wigs. My mom charted her meds :) I bought a commode and installed safety bars in my showers. Visiting nurses came (because of her surgery) and had no idea that she was dying- and her occupational therapist gave me a list of other things to order from a catalog that would make her RECOVERY better.

We ordered her hospice the night before she passed. And we didn't evern "really" order it. My mom told me "I'm ready for morphine- call it in" LOL, forever the nurse. So, when I called her doctor, he told me that the only way she could have morphine was by being on hospice, is that what I was asking him to do? She wasn't even bed ridden, I didn't know! She was never too sick to get to a doctor's apt, and was even walking up the stairs (with assistance) until 24 hours before she died. When the hospice nurse came, bringing morphine that my mom asked for, he calmly and directly took me into the hall. He said "you mother is very close to death, perhaps tonight or tomorrow." I was able to call my brother. THANK GOODNESS for him! I anticipated weeks-months-years of caring for a bed ridden incontinent drugged-out mother. I was ready for it. I was wrong.

So, I guess my point was just to share from the other side. Even having gone through this 3 times it wasn't until I cared for my 3rd family member that I understood hospice, and even then, I didn't get to take advantage of it's purpose! I do think people should be told exactly what hospice care is, why their family member is on it, and how it is allows their loved one to pass.

[tewdles, RN]

I'm only a nursing student, so I'm answering as a consumer, daughter, grand-daughter. I have been through hospice with my 2 grandparents, and finally my mother 11 months ago. (we are a small family, so I was with my grandparents in their home; but with my mother, I moved her into my home and was her primary care giver) I hope my comments don't seem crass, however, I think it is important to be gentle and direct with the family.

(grandfather) Honestly, I was about 4 months into his hospice before I realized it was different from home health. I remember one nurse explaining to me that I wasn't allowed to call 9-1-1. I was shocked! (uninformed) So, they explained (not well) that there wasn't anything left to do, and that's why we were on hospice, not that it was a philosophical approach to end of life care. I didn't get it, because no one really explained it to me. I thought to myself, ok, so there is nothing to do for his lung cancer, but what if he has a heart attack? Surely that requires medical care! How will he get to the hospital?

Fast forward to my mother's situation. She was diagnosed with end-stage colon cancer and metastases in her brain, bone, lungs, and liver. She only lived 4 weeks. Interestingly, she was an RN for 45 years- and *I am sure she knew, though seeking treatment was never something she would have done. My mom's last 5 years of working were in long term care, so she believed in a natural life span.

For almost the entire 4 weeks, no doctor told us she was so close to dying, no one said "your mom qualifies for/should consider hospice" NONE. They all "suggested" it, saying that the "cancer is very bad" or that it "has spread" and continued to run tests. (Tests, aren't they to see what's wrong so we can treat?) They were always vague, and each doctor was very narrow in his discussion. "Your mom's colon surgery was successful, and best of all, we were able to avoid an ostomy, she should be able to resume eating normally." Then her oncologist scheduled radiation sessions. Her internist did his thing. We spent her life savings- $89,000 out of pocket to be exact. What was gained? Why couldn't all of the doctors/nurses/staff just be more direct? I don't mean give up hope- but they gave us false hope. No one wanted to be the "bad guy" and say look- you need to go home and love up on your grandkids. (at that time, my mom was still DRIVING)

So, for 4 weeks we started 8 medication and I took her to over 20 medical apts. We shaved her head and ordered wigs. My mom charted her meds :) I bought a commode and installed safety bars in my showers. Visiting nurses came (because of her surgery) and had no idea that she was dying- and her occupational therapist gave me a list of other things to order from a catalog that would make her RECOVERY better.

We ordered her hospice the night before she passed. And we didn't evern "really" order it. My mom told me "I'm ready for morphine- call it in" LOL, forever the nurse. So, when I called her doctor, he told me that the only way she could have morphine was by being on hospice, is that what I was asking him to do? She wasn't even bed ridden, I didn't know! She was never too sick to get to a doctor's apt, and was even walking up the stairs (with assistance) until 24 hours before she died. When the hospice nurse came, bringing morphine that my mom asked for, he calmly and directly took me into the hall. He said "you mother is very close to death, perhaps tonight or tomorrow." I was able to call my brother. THANK GOODNESS for him! I anticipated weeks-months-years of caring for a bed ridden incontinent drugged-out mother. I was ready for it. I was wrong.

So, I guess my point was just to share from the other side. Even having gone through this 3 times it wasn't until I cared for my 3rd family member that I understood hospice, and even then, I didn't get to take advantage of it's purpose! I do think people should be told exactly what hospice care is, why their family member is on it, and how it is allows their loved one to pass.

I am so sorry about your experience.

I agree, there seems to be a disconnect in our health care continuum which makes it difficult for many medical providers and their teams to be straightforward and proactive with patients and families when cure seems unlikely. Additionally, it is surprising to me how many medical professionals can see a patient regularly over a period of time and not recognize the signs and symptoms of terminal decline. Are they in denial or are they not really looking closely at the patient?

I wonder, was the same hospice involved in all of your family members' care? If so, they may be interested in your feedback. Most hospices that I am aware of ask families to complete some sort of post hospice questionnare to determine what went well and what went not so well during the hospice care. Perhaps you could contact them and tell them that you would like to give them some feedback. Perhaps you could accomplish this as part of your bereavement care as pcg for your mother.

I am truly sorry that your mother's care was so unsatisfactory... and for your loss...

[leslie :-D]

medical residents clearly need much more in-depth education re eol issues, futility of treatment, and offering the terminal pt the most humane and reasonable options.

so many dr's rally for quantity vs quality of life, which ultimately serves to rob the pt and drain their pockets.

i've been saying for yrs, time to add/change the med'l school curriculum.

it's the only way to truly excel, in serving their pt population.

leslie

[heron, ASN, RN]

I've only ever worked in an inpatient hospice unit ... never the field nor have I ever done hospice admissions, so I certainly can't say anything sensible about how they might do things.

What I do know about is admitting newly-signed-onto-hospice patients to my inpatient unit. There are a myriad of ways in which communication can get foggy at a time like this.

Maybe the doc didn't want to freak anyone out by talking about the likelihood of death sooner rather than later. She might avoid mentioning hospice early on, lest she be accused of "pushing" someone into hospice too early.

Family members have many of the same scruples ... they don't want to "give up on" their loved one and so don't ask questions about the probability of death.

Then there is the stress of the transition itself ... as the stress/anxiety level rises, the ability to absorb information goes down. It also lends itself to a dynamic of one party hearing something different from what the other party is saying.

I'd hate to tell you how many times I've been told that "they said that ..." we would do child care, continue iv antibiotics, do labs ... whatever it is they want.

Sometimes it's a question of people hearing what they want to hear or who are out consciously to game the system.

Sometimes it's short-sighted and unethical marketing in which someone really does promise them whatever they want ... just sign them on any way you can. (A fairly stupid approach, since it won't be long before "some nurse" spills the beans and refuses to lie. The company got the sign-on with all its costs then lost the client before it could recoup those costs, let alone make a profit.) It happens ...

I'd also hate to count the times I've been instructed never to mention hospice or dying in front of the patient. And there's the central glitch ... the difficulty for both providers and clients in talking about dying. I don't know how to fix it except to keep talking.

[leslie :-D]

oh my gosh, so true, heron...

the way 'we' skirt around pertinent issues, does nothing to promote the well-being of the pt, family OR the nurse.:)

your post reminded me of a hospice nurse i shadowed, when i was in nsg school.

every.single.pt. she would visit, she would manage to incorporate the word "dying" into the conversation.

pt: i feel pretty good today.

nurse: but you're dying.

pt: my dtr came by and brought me some chicken soup.

nurse: how wonderful, but you DO know you're dying...

pt: i honestly don't feel like i'm dying.

nurse: trust me, you are.

you get the gist...

whether conversation was relevant or not, she made sure to let the pt know, well...they were dying.

ever since that visit, over 15 yrs ago, i still cringe at the word "dying".

i have and will use it (when/if appropriate), but dang...talk about pushing an agenda.

leslie

[heron, ASN, RN]

Pushing on denial is alway tricky. Sometimes it's exactly the right thing to do. Sometimes it blows up in your face. It's a fine line to walk, for sure.