So the family asks me "Is Mom dying?"

Specialties Hospice

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Specializes in Pedi psych 4yrs, Med-surg 6yrs.

Well, we all are, aren't we? Somebody, anybody, chat with me. I am new to hospice. Been here since Thanksgiving, and am going thru the "I don't know what the hell am I doing" stage. I had a good mentor, who worked with me for three weeks. Now on my own, I feel like I am drowning. I have my first patient that is declining. Lung ca with mets to the brain. Last Wed I saw her for the second time, it was her and her husband's anniversary. She was alert, having trouble finding words, complaining of double vision. History of IBS that was under control, she told me she was having BMs daily, that had been loose for 2 weeks, returning to normal over last 2 days. Got in to the office today to find she has been on crisis care all weekend, for agitation and constipation. Family reports no BM in 10 days. Dtr said "Dad told me the anniversary was important to her. Not so much her birthday next week." They have her zorked on ativan and roxinol. Her abdomen is distended. No urine in the last day. Husband has refused digital exam since start of CC, afraid the disimpaction will be too painful. I got orders to disimpact, give an enema and put in a foley. I was able to explain to the husband that as painful as disimpaction may be, the constipation will cause more, longer lasting pain. In turning her to her side, she peed, so foley was delayed. So the questions that the family is asking me: (I hedged pretty well. "Fake it till you know it" was one of the gems my preceptor stressed) If Mom was not sedated would she: still be dying? be in pain? be eating and drinking? I got more, will see what you have to say to this first. HELP!!

I'd tell the familiy, no matter what are giving your mom, she would of gotten to this situation eventually.

I seriously doubt that the patient "is zorked" on medication alone. Her disease has gotten here where she is at this point. Ativan and Roxinal are not enough to fully take the blame. She would be where she is on her own.

Her issues are her disease progression. Family seeking aswers and blame.. it's all her disease. Not her meds.

Yes, there is a Santa Claus Virginia. Your patient would be dying with or without medications at this point.. without them she would be in agony no doubt.

CURIOUS.. Does your office offer clinical support? These scenario would be exceptional to share with them and receive input.

Specializes in Pedi psych 4yrs, Med-surg 6yrs.

Do you mean an interdisciplinary team? Yes, sort of. We are in a lot of flux: borrowing a manager till a new one is hired, no chaplain of our own, two SW(which one do I call for which patient), 2 other RNs that I havent bonded with yet... Just havent found my groove yet. My mentor is on another team. We DO have a meeting tomorrow, and I plan to ask LOTS of questions. But I have questions now. Like How close is she to dying? I told them it could be hours, it could be days. But I havent been at bedside with enough actively dying pts yet to know how close she is. There has been the rattle, can I call it the death rattle at this point? But it comes and goes. Some apnea 5-10 secs.BP 90/40. When I turned her on her side, her saliva was brown, like old blood? What was that?

possibly blood.. she is actively dying from the sounds of it. Does your agnecy have the booklet called Gone from my sight? If so, it's something I have every family member look at when this happens. It also helps to read the copy yourself. thinkbook easy read.

Specializes in Pedi psych 4yrs, Med-surg 6yrs.

I have not seen that book, but I will look for it. Havent seen much in the way of organized training or resources yet, still looking... I am sure it is there, it has to be there, right? Maybe?

I'd love to send this to you. Its a very standard booklet used in every agency I have worked for. Google it.

sounds like you are assessing and doing all the right things for your patient, and also that she is actively dying. Tell the family the disease is taking their loved one, and the goal now is to keep her comfortable as this natural process progresses. Tell them the disease is going to take this lady no matter what action they or the hospice team or anybody does, and do they agree that the goal now is to make her comfortable, and do what we can to ensure she passes peacefully? If so, that is what the medication will do. Assure them that the hospice will give no more medication that is necessary to keep her comfortable. And remind them that the hospice will be there for them when they need it.

Specializes in Hospice.

This is a difficult conversation to have the first few times you have it. To tell someone, yes, your loved one is dying. I agree with above post that said she is likely not sedated just from meds. One good rule of thumb- if it is not something healthy people do, it is not normal, like the rattle. Many times people have brown or dark drainage from the mouth and nose. If you ever see this before someone dies- make sure you do the postmortem care without family in the room and with a chux under their head. There is usually more to come and it is very distressing.

Also, a supportive way to address the question of medication making someone sleepy. Discomfort keeps us a awake, and it triggers our sympathetic (fight or flight) nervous system. When a patient is given proper medication to manage symptoms, the parasympathetic nervous system takes over and patients often DRAMATICALLY change. When people say hospice killed grandma- this is what they are referring to. I have seen pt's wide awake with good color screaming in pain and agitation become comatose, cyanotic, and begin cheyne stoking after 1 dose of morphine. So is she sleeping from the meds or from the lack of discomfort? Does it matter...

Anyways, hope this helps. Look into education your company has on sx of active dying, and if they don't have any be seriously concerned about this oversight, and then use google to search symptoms of end of life. There is some really helpful stuff out there.

Need to take issue with your rule of thumb about sx not being "normal" if they're not seen in healthy people. The dying don't look like healthy people. Noisy secretions are normal at end of life. We reposition the patient, treat them with atropine etc, and assure the family the secretions don't disturb the patient as much as they distress the family. Along with the other s/s of active dying, talking about what to expect and why these sx develop helps.

Specializes in Med Surg, Hospice, Home Health.

"gone from my sight" is a little blue book that comes in the admission packet our familes get when they start hospice....we encourage folks to look through it on admission, and we revisit the book with each visit. It explains the transitioning and dying process.

Specializes in Pedi psych 4yrs, Med-surg 6yrs.

Thank you all for all your help. My patient's struggle is over - she died that night. Mine has just begun. Expect lots more questions from me. I have been grabbing anyone I can find at the office to answer my questions, but I have a LOT more to learn!!

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