Help With Hospice.. Please Assist Me

racing-mom4, BSN, RN · Jun 10, 2008

Hugs out to you and your family---you need to discuss this with the hospice center though. The Hospice Dr and her personal physician will do what is best for her and her final wishes.

Your Dad is lucky to have you as her advocate, I know it is tough to wait, you if they are closed, your going to have to wait till morning to talk with them.

Congrats on finishing school, sorry it is under such a dark cloud right now.

leslie :-D · Jun 10, 2008

hello all:
my step mother is in critical care at this time. her systems are starting to shut down.. she was just diagnosed 1.5 week ago with lung and liver cancer. (i am just finishing lpn school, so of course i dont have any experience)
ok.... she wants to go home.. to die at home is what we are assuming. the dr's say she goes home and they take all the tubes out of her and she dies within 1-2 days. they suggest hospice.... here is my question: can't the patient still go home with iv, a pic line and whatever else they need in order to comply with palliative care? my friend suggests calling an attorney to verify what the hospital is saying is accurate... this friend thinks they are saying these things to force my father to keep her there and then the hospital makes more money. at this point, i have no clue what to do and don't know if she is right.
joann

i'm really sorry about your stepmom, joann.

i guess my first question is, what do you mean about complying with palliative care?

it is very common (actually, it is customary) to dc all lines/tubes when receiving hospice care.

w/o knowing your stepmom's medical status (other than being end stage ca), continuing w/iv fluids can actually cause more discomfort.

and again, not knowing how she is presenting, i'm wondering if she has ascites, in which any fluids would merely accumulate in the cavities and soft tissue.

i know this is too much for you to grasp right now, but believe me, the doctor is not interested in keeping your stepmom a pt at the hospital.

he is trying to honor her wishes and let her die comfortably at home.

until she is discharged, i would make sure she is receiving medications to keep her comfortable and out of pain.

blessings to you and yours.

leslie

HouTx, BSN, MSN, EdD · Jun 10, 2008

JoAnnD,

Unfortunately, I have had too much personal experience with this same situation. So, based on my own personal experiences....

The goals of Hospice & Palliative care are different from acute care. I am guessing that the "Dr." you refer to is maybe, an oncologist? In my experience, many of them see death as a personal defeat & they want to do everything they can to keep on fighting. That can sometimes be very admirable but not always.

Immediately: Contact the Hospital Ethics Committee - everyone's got one. They will provide you with the information and support you need to maneuver your way through the hospital situation. They can also make sure that you are hooked up with people who can provid unbiased advice and information. Make contact with the spiritual care folks. They can provide valuable assistance, no matter what your religious preference.

Avoid Lawyers - they will only set up an adversarial situation between you and whoever they think you should sue... it's money in the bank for them. You'll just end up poorer and outcomes will not change.

If you all decide to continue artificial nutrition and hydration - you will most likely want to go with Palliative care. The goal of treatment will be shifted to symptom management rather than cure. In some facilities, the patient's attending physician can continue to 'manage' care in a palliative care program -- i.e. - can continue to bill for services rendered. In some programs, the care will need to be directed by a palliative care physician - just depends on how it's structured.

If it's OK to remove artificial nutrition and hydration, Hospice is the alternative. Hospice goals are focused on 'natural' control of symptoms (no high tech) and ensuring a 'good' death that incorporates the patient & family wishes, inc. When a patient enters hospice, care is turned over to a physician who works with the hospice.

My 2 family hospice experiences were both very good. One was outpatient. One caveat - before you decide on home care. What will it do to the surviving family members to remember their home as a place where their loved one died. After my mother's death, my father could no longer bring himself to even enter the room where she died. He ended up selling the house & coming to live with me. The inpatient facility (my sister) was wonderful. We had a very comfortable family area & were with her constantly. If we were exhausted, we could go home and rest a while. If I ever have to do it again - I will go with inpatient.

I am so sorry you are having to go through this - but we all will sooner or later. (((((((hugs)))))

Sue Damonas, BSN · Jun 10, 2008

I brought my mother home on hospice and she died at home. I know how you're feeling. You want what's best for your step mother and it's so difficult to see her go. A lot of Hospices will consider IV fluids but it sounds like she's at the point where they wouldn't do any good but may cause ascites, peripheral edema, or pulmonary edema. As a Hospice Nurse myself, I have sometimes gone into hospitals to talk with family members about Hospice. The main goal of Hospice is the patient's comfort. See if they can have someone discuss it in depth with you. There should be a Hospice Nurse on call after hours or a Hospice supervisor. I hope this helps and I wish you didn't have to go through this.:icon_hug:

heron, ASN, RN · Jun 11, 2008

Hi, I, too, am very sorry about your step-mom Sounds like she isn't having a whole lot of fun right now ... here's hoping someone, somewhere gets her comfortable asap.

As for the avail. of hospice ... is the Nat'l Hospice number a referral agency? Most hospices are listed in the phone book ... try looking there. The field is so competitive lately that many hospices take referrals atc, although she may not actually get seen until the next day.

You do not need an MD order to ask for hospice, but you do need 2 MDs to certify that she probably has less than 6 months to live ... with my agency that's usually the attending phys. and the hospice med director.

Another thought ... please don't take the MDs estimate as written in rock. In my experience, many intensivists grossly underestimate survival time once intervention stops. S/he may be right, but more likely not.

Try not to stress over the IV's. They're nice to have if you have to get meds on board fast-fast. Just about everything we use in hospice can be given by another route and be just as effective ... and she might find it a relief to be free of "appliances" in her last days.

I think the most important thing is what does your step-mom want? If the MDs taking care of her try to block a hospice referral, then the suggestion re the ethics committee is a good one.

In any case, peace to you, your step-mom and all those who love you.

Heron

TazziRN, RN · Jun 11, 2008

If she needs to receive pain meds via IV then yes, a PICC would be appropriate. That's about the only reason a PICC would be left in place for a hospice pt near the end.

I'm so sorry your family is going through this.

allnurses Guide · Jun 11, 2008

The hospital should have the number of the hospice nurses on call.

I am sorry you are going through this. You've gotten some good advice here.

Take a deep breath, step back and get some more information.

steph

Trauma Columnist · Jun 11, 2008

I am so sorry for your step-mother's distress. Since we don't know the excact situation we don't want to give you bad advice. I would suggest discussing your concerns with the hospital social worker and/or discharge planner who will be most familar with your area's resources.

Take care.