Hospice workers and disclosure

June 21, 2013 7:12 PM

My mom has been in hospice care for pancreatic cancer for a few months now. It's obviously at a pretty late stage at this point. Whenever either she or I talk to the hospice care nurse, the nurse really doesn't want to talk about anything in the future, though, except in the vaguest of terms.

She's wonderful in all other ways; she's very caring and attentive. My mom really likes her, and has gotten comfortable with her visits, so I don't want to disrupt anything.

I know that predicting the course of a disease like this one is pretty impossible, but I'd really appreciate knowing a bit more about how to prepare. A list of possible upcoming symptoms, perhaps; some stories about what kind of progression she's seen in the past, or even what kind of timelines she's seen. Instead, she usually replies with "there's no telling" and "enjoy the time you have" and "things can change at any time."

We're a really pragmatic family; we don't need to be shielded from the possible developments. And now, instead of getting a handle on how things are going from a professional, we're turning to medical articles on the internet, and we all know how well that usually goes. Knowing if we're looking at days, or weeks at this point would be really helpful; knowing what to prepare for would be even more so. I have my mother's power of attorney, so it's not an issue of problems with disclosure.

How can I politely ask my mom's hospice nurse to level with us, and let us know what might be coming up? Is it normal for a hospice nurse to be so reticent to talk about the future? If you have experiences with hospice, what did the staff tell you about what to expect?

posted by MrVisible to Health & Fitness (19 answers total)

I'm a little surprised, since you normally expect nurses who care for people with a terminal illness to be more forthright about these things. This sounds like the type of evasion you sometimes see with hospital nurses.

But in general, nurses often tend to shy away from responding frankly to these kinds of questions, thinking that it is the doctor who should be providing the explanations and the predictions. I would talk to the doctor.
posted by megatherium at 7:21 PM on June 21, 2013 [3 favorites]

It can, however, be as unpredictable as she hints. Hospice nurses are really good at predicting but, in my experience, more so as the end nears. Dying Well, by Ira Byock might help you out some.
posted by janey47 at 7:29 PM on June 21, 2013 [1 favorite]

I don't know. When our loved one started her deep decline, the hospice staff was exactly the same. The doctors and nurses wouldn't give us anything specific and when she passed away, they said it was because they thought she was near death the whole time and ot was policy to be vague.
I suppose they dion't want to say this is the list of terrible things that could happen, but prob won't because she prob will die in the next few hours.

I'm sorry.
posted by Blisterlips at 7:33 PM on June 21, 2013 [2 favorites]

You've been very eloquent here about what you're looking for -- can I suggest:

"Nurse A, I know that predicting the course of a disease like this one is pretty impossible, but I'd really appreciate knowing a bit more about how to prepare. A list of possible upcoming symptoms, perhaps; some stories about what kind of progression you've seen in the past, or even what kind of timelines you've seen.
posted by vitabellosi at 8:22 PM on June 21, 2013 [4 favorites]

You can ask specific questions that will help you understand more. You may need to talk to her doctor for some answers.
- What stage is Mom's cancer?
- How is Mom's liver, kidney, lung, heart function?

My brother had cancer that was presumed to have started in his pancreas. By the time it was diagnosed, it had already spread to other organs. He had a stroke that affected his ability to communicate, and caused some paralysis, but he recovered some of his capability. One of the hospital staff told me that the biological effects of the cancer made stroke more likely. The spread of cancer and the pain meds affected his kidney function, and he retained fluid. His liver was affected, and he was somewhat jaundiced. He wasn't very conscious for the last couple days. His lungs weren't keeping up, and his breathing was more labored. He was well medicated for pain. He died very quietly in the early morning, and it would be accurate to say that multiple systems failed because the cancer was widespread. He was at home with his wife and lots of family, including me.

I'm not a health care professional, but your Mom could have a heart attack, could get some sort of infection, could suffer kidney or liver failure, etc. If her cancer has spread, it will depend on the organs affected.

I'm so sorry your Mom, your family and you have to go through this. While he was ill, my brother enjoyed listening to music, watching old familiar movies, his dog, and having family and friends close. Writing this helps me see how gracefully he left, having taken care of the legal stuff and taking the time to say goodbyes. People really vary a lot, but I'm really grateful that we had some time to talk about what we meant to each other. I say this with every fiber of my being: Fuck cancer.
posted by theora55 at 9:31 PM on June 21, 2013 [9 favorites]

Read 'Final Gifts' as soon as possible. It was written by two hospice nurses. I think it will help you.
posted by lois1950 at 12:34 AM on June 22, 2013

Best answer: > A list of possible upcoming symptoms, perhaps; some stories about what kind of progression she's seen in the past, or even what kind of timelines she's seen. Instead, she usually replies with "there's no telling" and "enjoy the time you have" and "things can change at any time."

Think about the things that she's seen, though. Pancreatic cancer is (gods, I'm so sorry) not got a very optimistic prognosis in general, which of course you know because your mom is in hospice care. Those nurses see patients and families who understand this, and don't understand this. Patients who seem relatively stable who just go overnight in a blink, and patients who seem very close to death who hang on longer than expected, and all imaginable variations of how both patients and families react to the reality and weirdness of terminal disease. And the nurse has to keep on keeping on, providing care while being so intimately involved.

So, from the nurse's perspective, I imagine that she is giving you the answer to your question. As kindly and accurately as she can, truly.

You might be able to get a little more help on days vs weeks vs months if you present a simpler more action-oriented concrete problem rather than just wanting to know. Such as "We've got close relatives who are trying to figure out how to get here to say goodbye. I know you can't predict the future and that people might be too late, or that she might live through what seems an immediate crisis, but can you alert me when we're getting to the point of "sound the siren of 'this might be your last chance in person?'"
posted by desuetude at 1:12 AM on June 22, 2013 [2 favorites]

This is very difficult and I'm so sorry you and your family are going through this. When my mother-in-law was dying I was just like you, I wanted more information, as much as possible to try and prepare ourselves for what was coming and I was frustrated by the vagueness of the responses I got. I'm also pragmatic and I feel better about facing challenges armed with as much information as possible.

My MIL was adamant that she wanted to be at home rather than in a hospice. This was particularly worrying for me as I'm also a take-charge kind of person and I felt a big responsibility to co-ordinate her care. With the benefit of hindsight, a lot of the answers I wanted were probably impossible but in there were more specific questions I could have asked that might have helped and issues that it might have helped to be warned about. Obviously this is only based on one experience but hopefully this will be helpful:

1) Knowing number of days/weeks is probably impossible. We were told by doctors and experienced hospice nurses that MIL would probably die in the next 24 hours three times, the first of which was 2 weeks before she died and the last was a week before she died.

2) Pain relief. This for me was the most important area. You describe the nurse as visiting at the moment - if your mum will have access to full-time care (either in a hospice or full time nursing at home) it may be less of an issue. My MIL seemed to get worse in quite sudden steps which meant we were often playing catch-up with stepping up the pain relief and she suffered a lot because of this. Nurses can't prescribe (this is in the UK but even if things are different in your area it's unlikely nurses can prescribe morphine) and this delayed getting things in place. I would really recommend discussing the available options and if at all possible making sure they are prescribed and accessible before they're actually needed. This also includes anti-nausea medications. The afternoon when the anti-nausea cover slipped was very unpleasant for my MIL.

3) Personal care - if she will continue to be at home as her consciousness diminishes the practicalities of this can be difficult and you may be able to ameliorate some of them with planning.
posted by *becca* at 3:57 AM on June 22, 2013 [1 favorite]

This is one of the frustrating parts of dealing with health care workers. You ask "What are some of the things that can happen?" and they hear and respond to "What is going to happen to her?" They are so used to this heavy filter that it becomes second nature.

For many patients and families, hearing a doctor say something like, "Each person is different, but most patients in this stage have about three months to a year" would be understood and accepted. But most of the physicians and nurses end up making vague comments like "there's no way to know."
posted by yclipse at 5:14 AM on June 22, 2013

Best answer: becca's answer rings true to me, especially the part about pain management. Your mom might hesitate to tell you or the medical staff how much pain she is in out of fear of being seen as a nuisance.

When I dealt with hospice care I was told when the patient had a only a few days or weeks left. Actually the patient was told. Before that the answer was always vague.

Get in touch with the hospice counselor or liaison for family, or whoever advocates for families in your area. It might be through the county if you are in the US. They are the ones who can help you prepare and figure out how to get answers, and what questions are answerable.

Sending good wishes your way.
posted by vincele at 7:24 AM on June 22, 2013

I'm sorry you and your family are going through this.

Hospice gave my family a pamphlet which I now remember only as "the blue book," about end of life and the signs that death was close. Mottling on the lower limbs working its way up and changes in breathing are the only two that I remember. The blue book seemed pretty general to me and probably not applicable to everyone, but it was helpful to have some basic information. Maybe the hospice nurse has something similar to offer to you.

Neither the hospice nurse nor my mother's long-time doctor has been comfortable giving a prediction about the timeline--this after a doctor in the hospital gave her 2 days to 2 weeks to live. She's weak but still going 8 weeks later.
posted by sevenstars at 8:16 AM on June 22, 2013

The "blue book" is called Gone From My Sight and can be ordered here, though your hospice agency may also have a copy.

Echoing what everyone else has said, people can surprise us at any time, even when we know they are reaching the end of their life. I have known people on hospice who were awake and alert one minute and gone the next, and I've known people on hospice who lived for days or weeks without eating or drinking anything. That said, there is definitely a list of common symptoms and your nurse, while she is very unlikely to give you a timeline, should help you with that. If she is still hesitant, ask to speak with the social worker or chaplain (nowadays sometimes called a "spritual care coordinator" or similar); both of them are used to helping families and patients through the grief process--and that should include coaching all of you on what to expect.
posted by assenav at 8:46 AM on June 22, 2013

By telling you that there's no telling what symptoms your mom might have next, she is leveling with you. The role of the hospice nurse is basically to make your mom as comfortable as possible in whatever time she has. The vaguest of terms is really all the nurse might have about when and what and how is happening with your mom.

She might not have seen progression like your mom's current state in the past. She might not be able to tell you if you're looking at days or weeks-- it varies from person to person, and is notoriously hard to predict.

But all that aside, the hospice should've provided you and your family with some information about what some general symptoms might be, and what actively dying might look like. The doctor should be able to answer some of these questions more than the nurse can.
posted by RainyJay at 8:46 AM on June 22, 2013

The blue book seems to be Gone From My Sight. Here's the author's site.
posted by theora55 at 8:47 AM on June 22, 2013

Best answer: That's so incredibly frustrating. I was with my aunt in the hospital while she was dying -- no one would give us any answers and she died within 24 hours. Hours after asking the nurse, I went to ask the doctor how to determine if my aunt was sleeping or unconscious, and THAT was when the doc told me she "Oh, no, she's not going to regain consciousness" -- when 12 hours before they just kept saying "we don't know". By contrast, I worked at home IV therapy companies and would hear the nurses say both "[so-and-so] is shutting down" and also "I don't have a crystal ball".

I knew before my aunt's death that I wanted to go into hospice nursing, and I was even more sure afterwards. I feel like there's a lot that can be done (and maybe is being done when the right nurse ends up with the right family) to have better deaths for everyone involved.

When it was me in your shoes, I wish I'd had the guts to be blunt earlier -- to really look them in the eye and say "Please, I need a damn clue here -- surely all your experience has given you *some* hunches?? I promise I'm not looking to sue or hate you afterwards . . ." If they still reply with nothing useful, then I might try saying "Ok, well, I trust you, and I would really appreciate it if you would share with me when you begin to have a sense for how things are progressing. Even if it's just a hunch, even if it's wrong, I'd really like to know . . ."

Best of luck. I'm 'praying' for peace, for all of you.
posted by MeiraV at 9:13 AM on June 22, 2013 [3 favorites]

When my mom was in hospice there were a bunch of pamphlets about "the dying process" basically outlining that her hands would turn blue and they'd decrease the water in her I.V. over time and all of this horrible stuff and I ended up really, really resenting that I learned it through a pamphlet rather than an actual person telling me.

I'm not sure why, but I got very little info about what was actually happening from the medical personnel when my mom was dying.
posted by mermily at 2:43 PM on June 22, 2013

Best answer: Here's how it went while my mom was dying in hospice: some new threshold would arrive, like when she could no longer walk downstairs. "This is often a sign that we are near the end," the hospice nurses would say. Then my mother would keep living and seem stronger, and they would have to say, "well, everyone is different!"

Then she started having more trouble swallowing. "This is often a sign that we are near the end," the hospice nurses would say. Then my mother would keep living and seem stronger, and they would have to say, "well, everyone is different!"

Then...well, repeat this process with different symptoms, over and over, and the result was that my father and I kept bracing ourselves, and the nurses were all "well, I just DON'T EVEN KNOW ANYMORE," and my point is that knowing the signs sometimes not only doesn't help, but actually makes things a bit worse, because everyone is trying to read the tea leaves of how the patient feels and, well, everyone is different.
posted by a fiendish thingy at 4:54 PM on June 22, 2013 [4 favorites]

I've gone through this twice, with my mother with Parkinson's, and with my mother-in-law with bladder cancer. My experience is very similar to a fiendish thingy, in that it is really hard to predict, and in the end stages, a crisis can come at any time. The hospice workers we met really could not predict or give us any exact info., because it really does vary from person to person. The best thing to do is to treat each day she is with it and interacting with you as a gift, make sure everyone who needs to see her sees her regularly now if she is feeling up to it, and make sure she has the care and pain management she needs at all stages. With my mother in law, we had several false alarms where she was close to death and then rallied, despite all predictions.

So yeah, less ability to walk, more pain, less ability to eat, or swallow, these are all symptoms of decline, but not absolute signs the end is close, just that the illness is progressing. At the very end, with both my mother and mother in law, what seems (in retrospect), to have signaled that the end was close was edema, and increased difficulty in breathing, and losing interest in eating. When I last visited my mother-in-law I noticed the increased edema, and told my husband, gently, that it would not be too long, I thought. He got the call a couple of weeks later that this was it, and managed to get there in time (just barely) to hold her hand as she went.

With my mother, there was edema, and then she was slipping into a semiconscious state, and then her breathing changed, and that was a few hours before death. She rallied a bit, and we grabbed some food for a half hour, and that was when she died. My sister particularly was upset she died when we were out of the room. I have since talked to a number of people who had that experience though, and it does seem that that is not uncommon. My boss was keeping watch with her mother, and went to the bathroom, and that is when she died ... almost as though she was trying to spare her the actual moment and just slip away.
posted by gudrun at 11:33 AM on June 23, 2013

Best answer: This is quite normal and it's not meant to be evasive, at least from my perspective, but more because there is no "normal course" for any loved one going through the dying process. When I have someone in the hospice process, I forthright, when they ask, to tell families about things that may happen towards the end - things like slowed or irregular breathing, periods where breathing stops for what seems like forever but then resumes, that their loved ones may have increased respiratory secretions and cause them to have a rattle as they breathe, that they may become pale, those sorts of things. But those are towards the Very End. And while they are okay to know, by that time I am always, always encouraging families to not be so pragmatic and not be constantly on the lookout for the next step towards decline because it is so, so unpredictable. I understand from both perspectives. When my grandmother (who raised me, and then who i cared for, with her advanced Alzheimer's, in my home for many years) was passing away, I was longing to know when the next step would happen because I just wanted some sort of reassurance of the course - I'm a nurse and a very practical pragmatic personality as well - and then she would be horrible one day and rally to alertness the next. It was very difficult for me to reconcile that it wasn't like the movies with the slow descent into passing. It was very tumultuous to me not to have that feeling of preparedness.

So, anyways, it's tough. The real practical things I like to tell families to look for are not actually specific symptoms or events but changes in the way their loved one is dealing with things. For instance, when they stop feeling like eating anything? Don't force them! When they start having a rough time talking and they're exhausted all the time? Sit quietly with them or ask if it's okay to tell them about your day/life/memories. When they aren't keeping their eyes open? Don't be in their face asking them to stay with you and stay awake. When they are having those gurgle sounds breathing or they are laboring to breathe towards the end? Don't be afraid to let the hospice nurse or whoever is administering the medications to give them something to help them be comfortable (like morphine, roxanol, scopolamine, etc) even if some of the drugs may make them more lethargic than they already are. These things all sound like no brainers, but I found it personally very hard to do some of these as I have watched people I love pass away. And many of my families need to know/be reminded of this stuff and know that those are the signs they should be looking out for. Just as every personality is different, every person will have a different course through hospice and the best thing to look out for and to expect is that their needs will change as they cope with the dying process and you need to be on the lookout for whatever makes them most comfortable as those needs come up.

I'm so sorry you're going through such a tough prolonged ordeal. Lots of prayers for peace as you guys and your mom navigate this awful thing. I've seen many many people pass away through the years at my job and I still cry nearly every time. It's part of life, yes, but it's still rough.
posted by takoukla at 6:32 PM on June 28, 2013 [1 favorite]