Innovative Ways to Help Both Family & Patient

[nursejudy15209]

as a "newbie" in the hospice/home care setting, i was wondering what kind of things to bring up with the family. this question comes to mind because i provide "continuous care" through an agency that fills in the gaps for the vitas hospice. now, understandably, most families welcome the hospice concept -- however there are exceptions. which brings about the question of how expierenced hospice nurses handle families and/or patients that seem reluctant to accept the hospice nurse into their homes much less their hearts.

i'm in a tricky position -- we provide continuous care -- because that's a service that vitas offers. sometimes people accept the hospice concept but maybe the continuous care aspect can be upsetting for the family. i want to provide the best type of emotional support that i can - but when the family hedges in the opposite direction, well that's when i call on the experts to see how they handle these types of situations.

ideas anybody? i'm open for suggestions and will probably invest in some of the reading material mentioned on a different thread. thanks in advance for hints, suggestions, and support.

nurse judy

[tewdles, RN]

In my neck of the woods families who do not want continuous care do not get continuous care...

[Hospice Nurse LPN, BSN, RN]

In my neck of the woods families who do not want continuous care do not get continuous care...

Same here. We offer continuous care for a pain crisis or if a pt is having a difficult time transitioning, but that's about it. I think it's been almost a year since I did any cc. Welcome to hospice.

[annacnatorn]

Difficult at best. If you are in this situation, then it is possible, well, understood that the Family is not accepting of the Patients prognosis. I had this experience once. What I did was call the Chaplain and MSW who came out and answered many questions that the Family had while I cared for the Patient. Kept me away from their questions..but most importantly, the Patient got the care they needed and the Family got the counseling they needed. It was a win win situation.

Other times, the family is just not accepting and wants to do what ever can be done for their Loved one..do you blame them? I don't. Acceptance is Key.

On a different note, IF Hospice/Palliative care is properly explained at the time of admission, things tend..I said tend to go better in sticky situations.

Welcome to Hospice Work, where the rewards out weigh anything you will ever do in your career....Man, I miss it.

[ErinS, BSN, RN]

One of the nurses I worked with had a sister who died. The hospice caring for her sister really pushed for continuous care. To my friend, who is a hospice nurse, this was very upsetting. Her thought was 'why do I want someone to sit there watching me watching my sister die?' I agree that this is a service that should be used cautiously and only with complete support of the family.

[nursejudy15209]

Thanks for the kind replies and I appreciate the warm welcome. So far I like Hospice nursing, and as a matter of fact things can and often times do change quickly in the world of hospice nursing.

As for the family that wanted little intervention (ie: disliked the idea of continuous care) well low and behold, I'm back at the same address and this time the entire picture has changed. The primary caretaker is exhausted and so are the other family members. I think they needed time for closure and now that they are facing the end of life issues I think they are more accepting and tolerant of the continuous care aspect of hospice intervention. I think it's healthy for them that I'm here to watch over their loved one so they can get the rest they need.

Anyway, thanks for the encouragement and kind words. That's why I love this site - my postings have always generated helpful responses. Thanks again!:hug:[

[req_read]

Hi Judy,

My curiosity was piqued by your statement…”I provide "Continuous Care" through an agency…”

The implication being that your agency anticipates pt/fam need or desire for Continuous, In-Home care. And, having set up a mechanism, or “team” if you will, for addressing that need, the agency is then in a position where it would be in their financial interest to seek out, or dare I say, “create” such a need. It is rather like the construction company that invests in a machine, say for example, a large backhoe. Once they have it they are motivated to find jobs where they can use it… as in, make money with it.

Continuous In-Home care is the highest paid category of hospice per diem reimbursement… considerably higher than Routine In-Home care. Therefore, finding “need” for its use becomes a real temptation.

So Judy, might it be that perhaps some of your clients are not all that interested in Continuous In-Home care in the first place? Might some of them have been, shall we say, nudged in that direction? Which would then render them less-than-thrilled at the idea of having “strangers” living with them, elbow to elbow?

Of course as time goes on and the pt gets closer to death, with the usual concomitant exhaustion of the family, the “need” becomes more truly theirs (as opposed to the agency’s need to keep their Continuous In-Home care machine in operation.)

Just one more side comment…

Some people (such as myself for instance) are more jealous of their privacy than others. I can only tolerate outsiders in my home for brief periods, regardless of how cheerful or helpful they may be. I require “alone time,” and when deprived of its rejuvenating qualities I confess to morphing into a curmudgeon rather quickly.

Pardon my verbosity. This somewhat lengthy post is just the full-length version of Tewdles’s comment, “In my neck of the woods families who do not want continuous care do not get continuous care...

Welcome to the politics of Hospice.

I predict, Judy, that if your agency has gotten itself into the position of pushing Continuous In-Home care, it will be fairly common for your pt/fams to display some resentment towards your presence, especially in the initial stages of that care; i.e. before the pt/fam’s “need” ripens to maturity… or perhaps I should say, ripens into desperation.

The question for you then becomes: How can I be in-home before I am truly needed without wearing out my welcome… so that when I am truly needed there is not an over-abundant accumulation of resentment to contend with… on top of everything else?

And the question for your agency is: How to walk this thin and somewhat dubious line without bringing down the wrath of governmental, 3rd party payors?

Best Regards,

Michael

[nursejudy15209]

you know what? i agree with you, michael. the particular agency i'm still affiliated with is actually contracted out by a hospice company that seems to specialize in continuous care. on at least 2 occasions, i was able to obtain medication orders from the hospice itself for patient comfort, so in that sense i'm glad i was there. however, i decided that this business of "baby-sitting" (while it paid well for an lpn) still left me unfulfilled. so, i did the only sensible thing a person could do -- i just signed up with another agency and took a position as a real honest to goodness "hospice nurse" . yep. i'm getting my wobbly nursing feet into a promising situation. only this time i get to provide a welcome service -- patient is at home and my visits are supposed to be thorough, but not long enough to wear out my welcome.

and i'm in a good situation -- actually precepting with a very accompolished, warm, compassionate nurse who loves going to work, rises to most any unpredictible occasion, and still wants to see me succeed in this temporary position. so, had i not gotten over my trepidataion in being a hospice nurse by providing a service that even i think may be inappropriate -this opportunity might not have been something for me to consider. as it is, i like it!!!

there is room in this job to teach the family about the whole dying process, (i'm starting to understand this myself) and to teach proper administration of the medication necessary to provide comfort to the patient. in addition to that, there are opportunities for me to regain my confidence in skills that have been pushed aside for an extended period of time. most importantly, both the family and the patient are receptive to my presence in their home.

today was day 1 of this whole orientation thing and i believe that the way this particular hospice works, is far more beneficial to both the family and to the patient. i met 4 families and was impressed by the care taker role in each home. each home was different -- each patient in various stages of the end of life issues -- so i got variety while at the same time was able to grasp the crux of the responsibilities for me as a hospice nurse. i know that every situation is quite different from each other and every patient deserves the very best in nursing / hospice care.

looking forward to day 2 of this new and awesome job. many thanks for input and support!

[req_read]

Great!

Best Wishes.

Michael

[PoetOfMyHeart]

hello all!

as a newbie to hospice nursing myself (i have only 3 months in) i'm by no one's standards an expert. but i have to say, i cannot imagine walking into a home to a bunch of people who don't want me there! to be responsible for complete patient care, dealing with all the family dynamics, all the caregiver teaching plus animosity of my very presence...eh...i think i would find a new job, personally.

nurse judy, i am so glad you found a company to work for that meets your needs as a nurse, and i hope it continues to fulfill you and allow you to grow. i love my job. when i am in people's homes and various facilities they are so grateful to have someone there..they are exhausted, confused, scared. to have some of their load taken off and someone to look up to for information and to provide reassurance is so beneficial to them and rewarding for me. and you are right in saying every case is different. i have gotten the random family member who isn't "on the hospice page," but i attribute that to the denial phase of grief. acceptance really is the key, like annacnatorn stated. they just love the pt and feel like they have to do something.

good luck in all you do, nurse judy. hospice work is such a privilege, and i can tell your heart is truly in the right place.

~sara~

[annacnatorn]

One of the nurses I worked with had a sister who died. The hospice caring for her sister really pushed for continuous care. To my friend, who is a hospice nurse, this was very upsetting. Her thought was 'why do I want someone to sit there watching me watching my sister die?' I agree that this is a service that should be used cautiously and only with complete support of the family.

I agree 100%..some families just want to be alone and when there is a "Nurse" present, they feel intimidated, they don't do what they want to do.

What I have done is to have a "Family Meeting" explain that I will be here for as long as they need, to do the stuff they don't want to do. If they want me to take a short walk, then all they have to say is please go. Many families have taken advantage of this, they like having me there, but yet, they need to have that time with their Loved one. I am there, in the background, more like overseeing what is going on, supporting the family.:redbeathe

[leslie :-D]

What I have done is to have a "Family Meeting" explain that I will be here for as long as they need, to do the stuff they don't want to do. If they want me to take a short walk, then all they have to say is please go. Many families have taken advantage of this, they like having me there, but yet, they need to have that time with their Loved one. I am there, in the background, more like overseeing what is going on, supporting the family.:redbeathe

anna, are you a nurse?

if not, in what capacity are you at the pt's homes?

just curious...:)

leslie