How to bring up hospice discussion?

kimprn · Nov 19, 2010

Empathetic to your situation, Little Mouse. After recently transitioning to hospice nursing from a career in critical care, I'm beginning to see more of both sides of the spectrum.

What I have heard and seen from patients, lcsw's, spiritual counselors, nurses, families and physicians is a lack of eol education usually due to one or all of a few situations: fear of the unknown, legal system, failure or unfinished business.

Education is the key. Finding out who is the ultimate decision maker is the first step;make attempts to find out if the decision maker (if it is not the patient, which is true for your case) really has the patient's best interest at heart. Once you have educated the decision maker, an approach to the M.D. may be more successful. Some physicians are adamantly against hospice...even oncologists...that goes back to my 4 fears, but being the advocate that you are, the decision maker will find the M.D. to recommend hospice when appropriate.

BluegrassRN · Nov 19, 2010

Sometimes it's a simple as saying "Has anyone discussed your alternatives to this treatment with you? Was hospice a part of those discussions?" Other times, if that doesn't seem appropriate (or if you're like me and often don't see the family, due to working nights) you can leave a note for the doc asking if hospice/alternative treatments were discussed. Finally, in my facility, nurses may initiate a social work consult. I will sometimes do this, and put in the special instructions "Treatment seems extremely aggressive for patient's condition and outlook. No indication in physician's notes that palliative or hospice care was discussed. Please make sure physician and family has had this conversation." In my notes for the shift, I will note the consult and the reason for it. In my hospital, social work is the department that deals with palliative care consults. In this manner, at least there is some documentation on the chart that someone is attempting to address it, if nothing else than to prompt the physician to address it.

nerdtonurse?, BSN, RN · Nov 19, 2010

When we have people admitted to the ICU, we bring up code status during the admission. What I usually say is, "if your heart were to stop, would you want us to put tubes in your throat, hook you up to machines, shock your heart, and do chest compressions, even if it was impossible that you would survive." Phrasing it that way usually opens a dialog -- most people's idea of a code is the person gets three compressions, a couple of IV pushes, and a shock, and after the commercial break, they're having coffee with their family. They don't realize the low survivability to discharge of patients who code.

And you also have to be ready for the person who says, "I don't care, do everything." And I am very grateful that we have some docs who will drag the "do everything on my 103 year old brain dead parent because I can't stand to be lonely" family member into the middle of the code and make them watch. I love my parents. I'd take a bullet for either one of them. But I also love them enough not to torture them when it's the end of their life. It's tough, and so often we're the ones who start that dialog.

JustBeachyNurse, LPN · Nov 19, 2010

I'm not a nurse yet, but I can give you a bit of an idea from a family perspective. Do you know the entire patient history or whether there is a living will?

With my father, one (talking about this specific nurse only) "haughty" LPN actually said to my mother "I don't know why you are here all the time, he has no idea you are here. You are just wasting your time." Evil wench (fortunately my mother reported the interaction to the nurse manager before I did.) and SHE WASN'T EVEN MY FATHER'S PRIMARY NURSE!!! She was covering for a break. She had no idea about my father's total history. Yet the attending physician & primary nurses could tell a significant difference in my father when family was at bedside vs. when we were not.

That said, a simple query as suggested may be appropriate "has anyone discussed all your treatment options with you?" or a query to the case manager or physician. With my father the neurosurgeon & my mother (and myself) had many discussions about treatment options and scenarios. The interesting part was I told my mother she would know when hospice was the right choice (not knowing that the surgeon had told her the same, but gently reminding her that it was an option at any time).

In Jan 2008 after a major incident (not relevant here), my mother called me and said she was going to ask the doc for a hospice referral. The doc called her 5 minutes later and said "I think you may want to consider hospice & palliative care at this point."

The nurses who tried to bully & berate my mother during my father's stays were inappropriate. But the RN's who gently reminded her that hospice/palliative care was was always there as an option, were sincere & caring but not trying to force their beliefs on us. (Fortunately there were more caring nurses than evil wenches with big mouths) Sometimes people are not aware that hospice & palliative care does NOT mean "DO NOT TREAT" but IMHO means "TREAT WITH DIGNITY & RESPECT to ensure comfort for both patient & family. Sometimes taking care in your wording can make all the difference.

leslie :-D · Nov 19, 2010

I just recently had a situation where a pt was to go in for a PEG placement per family request and thought to myself that they need to reconsider. Imagine this: very elderly pt, refusing to eat or drink, being hydrated by iv fluids, unable to perform any ADLs whatsoever, very confused, sleeping majority of the day (and night), minimal verbal response...
How could the physician even consider a PEG placement? It may just as well be the family being indenial, but what I would like to know is...have you been in a similar situation and how did you handle it? Do you recommend hospice to the physician first? How did the MD handle that suggestion?

before you even consider hospice for a pt, make sure the pt's prognosis is very poor.

our licsw screened a hospital pt for hospice, and the pt ended up recovering.

it was the acuity of his ailment, that had him present w/symptomology that seemed hopeless, at the time.

lesson learned.

that said, if pt is confused, then you would need to approach poa...

not necessarily about hospice, but to get a feel of where his/her feelings are re disease process.

as you mentoned, there's an excellent chance they are in denial.

and, there are (too) many dr's who haven't a clue about eol issues.

rather, they choose to implement every invasive, futile, costly procedure....just to prolong life.

you can also speak with the lic sw at the hospital, as they might know more than you.

but the bottom line is, i'd get the ok from the poa/family/pt, before i approached a doctor.

dr's tend to listen to families before they'll listen to us, about such things. :rolleyes:

wishing your pt and family, peace, wisdom, and healing.

leslie

OttawaRPN · Nov 19, 2010

Does your hospital not have a palliative care coordinator? Physician's referral not needed to approach them; they are usually more than happy to initiate dialogue in these types of situations.

Remember you work as a team; this isn't all on you.

littlemammanurse, BSN, RN · Nov 19, 2010

I used to work on a Palliative floor and I used to see a lot of families who were in denial in regards to the patients condition All I can say is family will do anything to keep their loved one around longer.It was very hard working there, and I ended up quitting because of it.

janets1 · Nov 20, 2010

Was just thinking about a personal scenario very similar to the one you described. 88 yr. old male, very confused, sleeping majority of the day (and night), minimal verbal response... That is how he presented in the hospital. However the day before admit, he lived independently, drove, worked out at the gym 6 days/wk alternating aerobics & strength training, managed all ADLS independently. (Managed families ADLs as well :-)

Hospital staff saw an elderly man with what appeared eol issues. When the nurse recommended hospice/palliative care to me I was appalled. This man (my beloved grandfather) was the lion of our family. Mercifully his physician knew my grandfather personally and treated his MRSA for 6 long weeks. When he was discharged it took almost a year of rehab to become a shadow of his former self. It wasn't my idea to "intervene." It was my grandfather's. He still had work to do.

Granted your scenario is likely NOT the same as mine. However, just because we see the same thing everyday at work, doesn't mean it is all the same. Death and dying are taboo subjects in the "real world." I still know many nurses who refuse to prepare the body for the family because it "creeps them out." Your patient's family may not be aware of what EOL symptoms look like. The "denial" the family is in may be more related to ignorance (lack of exposure) than an inability to accept the inevitable.

In reference to my grandfather he lived 4 more vital years. During those years his contributions to community, family, and my life were always meaningful. Last Tuesday when he died, we expected it, largely because as a man of medicine he was a tremendous educator. He taught us what to expect. All things being equal I prefer the theory work of grieving to the "clinical" experience.

leslie :-D · Nov 20, 2010

janet, thank you for sharing your story...

and please accept my condolences on the passing of your grandfather.

your post raised a critical point, that i only touched upon in my previous post.

that, we truly need to be extremely diligent in who we refer to hospice.

often, the pt is 'only' extremely sick and not terminal.

i once sat on a hospice committee, listening to various others strategizing about getting more hospice pts for our facility.

i listened to these folks talk for 30 mins, before i started feeling sickened.

they were looking through charts, assessing a pt's candidacy for hospice...

based upon wt loss, pmh...there was even a mentally-challenged, elderly pt w/a g tube, who they talked about (no other cobmorbids).

i walked out, never to return.

my point being, regardless of the best and worst of intentions, hospice is a subject that should be approached with hypervigilance and sensitivity.

it's imperative that all homework has been done...and should never be suggested on impulse

again, please accept my sympathies for your grandpa.

i know that when my grandpa died, the world lost someone legendary.

thanks again for your input.

leslie

janets1 · Nov 20, 2010

Leslie, you are precisely right. I am so sorry you did not return to the committee, you appear to be the only member with the understanding of hospice role. Unfortunately I have often thought committees murder the souls of more members than they ever help. So I certainly don't fault you for running for the door. Kudos for trying to work through committee at all. You have far more patience and endurance than I.

Thanks for your condolences. I find grieving to be such a very solitary experience. Each of us have a unique relationship with the loved one, each love, each role, is unlike any other. Each of us believe our grief is more intense and poignant than anyone elses. We walk the road of grief alone. I hate this part of the journey. Having the joyful memories is all that makes it bearable. I will be ok eventually. Just not today. :-)

Up2nogood RN, RN · Nov 20, 2010

Thankfully our surgeons are not against palliative care and hospice. A lot of the time it will be them to order the referral. But it is not up to me to decide one's quality of life. If we have a sensitive diagnosis and odd family dynamics we will order a care manager to step in and monitor the situation and help identify what may be most appropriate for the pt.