End-of-days comfort
March 4, 2020 8:59 AM Subscribe
Warning: disturbing medical conditions below the fold + very long Ask. My dad is dying of COPD and congestive heart failure. His final days are being spent in a nursing home. His hospice nurse visits there twice a week. The nursing facility appears to be understaffed, especially on weekends. What, if anything, might make him more comfortable at this time?
More deets:
1. He had a stroke in December. The night nurse I spoke to today literally cannot understand what he says. It's not just her; I often had the same problem during my visit.
2. He has suffered from anxiety for years but only got on medication for it on an as-needed basis a few years ago. After determined lobbying on my part during my visit a few weeks ago, I was able to get his doctor to prescribe a bedtime anxiety medicine plus anxiety medicine on an as-needed basis.
3. Supposedly he can have morphine (relatively low dose, under his tongue) on an as-needed basis as well, up to 10X daily. But he doesn't or cannot at this point ask the staff for it (although, while I was there, he did ask me to have a nurse give him some a couple of times).
4. His edema is getting worse. It has now spread from his feet and ankles to his thighs and genitals.
5. The staff is keeping a mask on him at all times now because he gets nebulizer treatment for his breathing problems and the mask he used before kept falling off, and so did his oxygen rig (apparently).
I am about to write my dad's doc and request that:
A. My dad get his very low-dose anxiety medication more frequently than once per day at bedtime to see if that improves his comfort (since he cannot ask for it)
B. That he get morphine on a regular basis (same reason)
C. That she prescribe a small personal fan for him because fan therapy is the only other thing I can find that may help end-of-life COPD patients feel a bit more comfortable and thus far none of the 3 nurses I have spoken to have been able to make this happen.
I am super frustrated. Last week I texted the hospice nurse (who is separate from the nursing home staff) to ask how my dad was because my dad told me on the phone that he felt terrible. The hospice nurse's response was, in part, "He always says that he is terrible. The cause changes each time." Like, no fucking kidding. My dad has about a zillion reasons to feel shitty as well as anxious right now.
I feel like I have been sold a bill of goods about hospice and palliative care that is just wrong when it comes to my dad. He is not comfortable. Sure, he is more comfortable than being propped up on a curb somewhere but he is anything but comfortable. Maybe there is no state of grace that dying COPD patients get to experience. Maybe the tools just don't exist for that. Hivemind, what if anything should I be doing in addition to or instead of the list above to help my dad feel less shitty?
(NOTE: I was with my dad for 4.5 weeks recently and have my own health issues. I need suggestions that do not require my personal presence. I do have the medical Power of Attorney for him.) Many thanks and apologies for the length of this Ask!
More deets:
1. He had a stroke in December. The night nurse I spoke to today literally cannot understand what he says. It's not just her; I often had the same problem during my visit.
2. He has suffered from anxiety for years but only got on medication for it on an as-needed basis a few years ago. After determined lobbying on my part during my visit a few weeks ago, I was able to get his doctor to prescribe a bedtime anxiety medicine plus anxiety medicine on an as-needed basis.
3. Supposedly he can have morphine (relatively low dose, under his tongue) on an as-needed basis as well, up to 10X daily. But he doesn't or cannot at this point ask the staff for it (although, while I was there, he did ask me to have a nurse give him some a couple of times).
4. His edema is getting worse. It has now spread from his feet and ankles to his thighs and genitals.
5. The staff is keeping a mask on him at all times now because he gets nebulizer treatment for his breathing problems and the mask he used before kept falling off, and so did his oxygen rig (apparently).
I am about to write my dad's doc and request that:
A. My dad get his very low-dose anxiety medication more frequently than once per day at bedtime to see if that improves his comfort (since he cannot ask for it)
B. That he get morphine on a regular basis (same reason)
C. That she prescribe a small personal fan for him because fan therapy is the only other thing I can find that may help end-of-life COPD patients feel a bit more comfortable and thus far none of the 3 nurses I have spoken to have been able to make this happen.
I am super frustrated. Last week I texted the hospice nurse (who is separate from the nursing home staff) to ask how my dad was because my dad told me on the phone that he felt terrible. The hospice nurse's response was, in part, "He always says that he is terrible. The cause changes each time." Like, no fucking kidding. My dad has about a zillion reasons to feel shitty as well as anxious right now.
I feel like I have been sold a bill of goods about hospice and palliative care that is just wrong when it comes to my dad. He is not comfortable. Sure, he is more comfortable than being propped up on a curb somewhere but he is anything but comfortable. Maybe there is no state of grace that dying COPD patients get to experience. Maybe the tools just don't exist for that. Hivemind, what if anything should I be doing in addition to or instead of the list above to help my dad feel less shitty?
(NOTE: I was with my dad for 4.5 weeks recently and have my own health issues. I need suggestions that do not require my personal presence. I do have the medical Power of Attorney for him.) Many thanks and apologies for the length of this Ask!
Best answer: I'm so sorry your dad is experiencing all of this in his last days, and sorry you have to take such a strong stance as his advocate. You are doing something great for him by doing this, though.
Can any of the orders be written as routine instead of as needed? And/or can they be re-written to include non-verbal signs of need, for example his indicators of pain for the morphine or indicators of anxiety? Are there any funds to hire a private caregiver to sit with him in his room, and call staff to dispense medication when they think he needs it? Basically his responsibility to ask for medication needs to be removed, since it's clear that isn't working.
For his edema: you could talk to the nurse about a diuretic but the resulting increased urine output can lead to other issues like skin breakdown. Are his feet being elevated in the bed? Is he able to get up out of bed at all, even to a chair? Moving around, if he's able, can help with edema also.
In my experience (elder care professional but not a nurse) hospice nurses are meant to work to get people to the lowest level of pain and discomfort, even that means the person loses some alertness. Of course your dad is anxious and feels terrible--what a frustrating response for you to get. I am sorry if this question is hurtful, but is there a prognosis for how much longer your dad will live if his condition continues at the rate it is now? Is it a long enough time that you think it would be worth it to switch to a different hospice agency? He has that right and you could exercise it as a POA.
posted by assenav at 10:02 AM on March 4, 2020 [4 favorites]
Can any of the orders be written as routine instead of as needed? And/or can they be re-written to include non-verbal signs of need, for example his indicators of pain for the morphine or indicators of anxiety? Are there any funds to hire a private caregiver to sit with him in his room, and call staff to dispense medication when they think he needs it? Basically his responsibility to ask for medication needs to be removed, since it's clear that isn't working.
For his edema: you could talk to the nurse about a diuretic but the resulting increased urine output can lead to other issues like skin breakdown. Are his feet being elevated in the bed? Is he able to get up out of bed at all, even to a chair? Moving around, if he's able, can help with edema also.
In my experience (elder care professional but not a nurse) hospice nurses are meant to work to get people to the lowest level of pain and discomfort, even that means the person loses some alertness. Of course your dad is anxious and feels terrible--what a frustrating response for you to get. I am sorry if this question is hurtful, but is there a prognosis for how much longer your dad will live if his condition continues at the rate it is now? Is it a long enough time that you think it would be worth it to switch to a different hospice agency? He has that right and you could exercise it as a POA.
posted by assenav at 10:02 AM on March 4, 2020 [4 favorites]
Best answer: Barbara Karnes has written at great length about hospice and comfort care at end of life; she has this booklet which I haven't read yet, about pain management, and this brief blog with a list of things to consider.
posted by assenav at 10:07 AM on March 4, 2020 [1 favorite]
posted by assenav at 10:07 AM on March 4, 2020 [1 favorite]
Best answer: I can only address part of your questions and this is simply based on my own experience with my dad (and his medical providers) regarding end-stage COPD.
The problem as it was explained to me is that anti-anxiety medications (may/can) depress breathing - for someone with end-stage COPD, this is not optimal. After a recent hospitalization for pneumonia, my dad (understandably) was pretty much having an ongoing anxiety attack, feeling like he couldn't breathe and a heart rate over 200 for hours at a time. The problem is of course, he can't breathe well, and every cell of his being is telling him that and reacting accordingly. His pulmonologist told him he would have to adjust mentally/emotionally to the reduced oxygen, because an increase in antianxiety meds would simply make the problem worse and given his current lung capacity (hovering around 19-20%), the risk of completely suppressing his ability to breathe with medication to control anxiety is too great.
We've worked a lot on controlling his breathing, focusing on breathing in-through-the-nose-out-through-the-mouth to bring down the panic levels. Having some control over the panic spiral has helped him, but not perfectly and I recognize that it won't help forever - the physical reality of COPD is going to eventually win.
I don't know if this is why the hospice staff has not increased the frequency/amount of your dad's antianxiety medication, but it might be. You need to have a really in-depth discussion with your dad's medical providers over what medication he is receiving and why and what the next stages will look like for him and what staff can do medically or otherwise to keep him as comfortable as possible.
The suggestion of flip cards or a whiteboard is a good one if he's unable to make himself understood verbally, to request whatever relief medication he is allowed.
My dad is also helped by the feeling of air on his face and I think you should continue to insist on a fan. I don't know enough to know if in-bed physical therapy would help with the edema, but I would absolutely ask.
My dad sometimes finds the mask makes him feel claustrophobic and switches to a regular nasal canula for a while (he is able though, to do this himself right now); I would ask your dad if he would like to do that once in a while and go from there with staff to make it happen if he thinks it would help.
Never pass up an opportunity to ask questions about what more can be done to help him. The hospice staff should never have a problem answering your or his questions with patience, respect and care and if they do, complain loudly to their coordinator.
You're being a great advocate for you dad and that is exactly what he needs.
posted by faineant at 10:16 AM on March 4, 2020 [14 favorites]
The problem as it was explained to me is that anti-anxiety medications (may/can) depress breathing - for someone with end-stage COPD, this is not optimal. After a recent hospitalization for pneumonia, my dad (understandably) was pretty much having an ongoing anxiety attack, feeling like he couldn't breathe and a heart rate over 200 for hours at a time. The problem is of course, he can't breathe well, and every cell of his being is telling him that and reacting accordingly. His pulmonologist told him he would have to adjust mentally/emotionally to the reduced oxygen, because an increase in antianxiety meds would simply make the problem worse and given his current lung capacity (hovering around 19-20%), the risk of completely suppressing his ability to breathe with medication to control anxiety is too great.
We've worked a lot on controlling his breathing, focusing on breathing in-through-the-nose-out-through-the-mouth to bring down the panic levels. Having some control over the panic spiral has helped him, but not perfectly and I recognize that it won't help forever - the physical reality of COPD is going to eventually win.
I don't know if this is why the hospice staff has not increased the frequency/amount of your dad's antianxiety medication, but it might be. You need to have a really in-depth discussion with your dad's medical providers over what medication he is receiving and why and what the next stages will look like for him and what staff can do medically or otherwise to keep him as comfortable as possible.
The suggestion of flip cards or a whiteboard is a good one if he's unable to make himself understood verbally, to request whatever relief medication he is allowed.
My dad is also helped by the feeling of air on his face and I think you should continue to insist on a fan. I don't know enough to know if in-bed physical therapy would help with the edema, but I would absolutely ask.
My dad sometimes finds the mask makes him feel claustrophobic and switches to a regular nasal canula for a while (he is able though, to do this himself right now); I would ask your dad if he would like to do that once in a while and go from there with staff to make it happen if he thinks it would help.
Never pass up an opportunity to ask questions about what more can be done to help him. The hospice staff should never have a problem answering your or his questions with patience, respect and care and if they do, complain loudly to their coordinator.
You're being a great advocate for you dad and that is exactly what he needs.
posted by faineant at 10:16 AM on March 4, 2020 [14 favorites]
respiratory depression is a risk of morphine too.
i don't personally believe there is any comparison in the pain relief, but hear others suggest thc/cbd might manage pain when opiates aren't an option.
sorry you and your dad are going through this, Bella Donna. he's lucky to have you. don't forget to take care of yourself, too.
posted by 20 year lurk at 10:50 AM on March 4, 2020 [1 favorite]
i don't personally believe there is any comparison in the pain relief, but hear others suggest thc/cbd might manage pain when opiates aren't an option.
sorry you and your dad are going through this, Bella Donna. he's lucky to have you. don't forget to take care of yourself, too.
posted by 20 year lurk at 10:50 AM on March 4, 2020 [1 favorite]
Could he possibly be moved to a Hospice unit, instead of staying at the nursing home?
Can you ask how staff (nursing or Hospice) are assessing his pain level if he is non-verbal?
Can you ask the Hospice team for a different method of getting morphine based on time rather than his request (a syringe driver, I think)?
posted by Riverine at 11:24 AM on March 4, 2020 [5 favorites]
Can you ask how staff (nursing or Hospice) are assessing his pain level if he is non-verbal?
Can you ask the Hospice team for a different method of getting morphine based on time rather than his request (a syringe driver, I think)?
posted by Riverine at 11:24 AM on March 4, 2020 [5 favorites]
I’m sorry for your father and the stress it’s causing you. It’s difficult seeing a loved one in a helpless and seemingly hopeless situation. A few years ago, my dad died in my home in hospice care from COPD and other escalating medical conditions. There are just some things medical care cannot reverse, and end-stage COPD with right-sided heart failure/cor pulmonale is one.
As suggested above, based on your list of his medical issues, it sounds like he probably should be in hospice care. Locally, we have a residential Hospice House for patients to stay in if, as is often the case, there are no local family resources. Is there such a thing in your community? Home hospice was preferred by us (but I was a doctor and my wife a nurse, and we could afford an aide to supplement the regular hospice nurse and aides’ visits). This may not be an option for you, but transitioning from a nursing home (which are often under-staffed) to hospice seems the right move. You don’t get any demerits by moving to hospice early. At the very least, you cut out one level of providers you have to deal with - the nursing home staff - and substitute a presumably better equipped set for his care.
posted by sudogeek at 11:50 AM on March 4, 2020 [4 favorites]
As suggested above, based on your list of his medical issues, it sounds like he probably should be in hospice care. Locally, we have a residential Hospice House for patients to stay in if, as is often the case, there are no local family resources. Is there such a thing in your community? Home hospice was preferred by us (but I was a doctor and my wife a nurse, and we could afford an aide to supplement the regular hospice nurse and aides’ visits). This may not be an option for you, but transitioning from a nursing home (which are often under-staffed) to hospice seems the right move. You don’t get any demerits by moving to hospice early. At the very least, you cut out one level of providers you have to deal with - the nursing home staff - and substitute a presumably better equipped set for his care.
posted by sudogeek at 11:50 AM on March 4, 2020 [4 favorites]
I agree, hospice can mean a huge range of different things, so a better hospice situation is a possibility. For my dad I wished I'd called the hospital social worker back to say, "sure, you can't recommend a specific hospice, but what are some of the ones you hear the best things about?". For example, once he was back in the hospital (and still in hospice) the nurses were way better about giving him morphine more often.
Things I personally did (that I don't know if they helped a lot or not, but they were things I could bring): get him really soft blankets so he had something soft, have music he liked available on a walkman, take him sorbet and other treats when I could.
posted by ldthomps at 12:10 PM on March 4, 2020 [2 favorites]
Things I personally did (that I don't know if they helped a lot or not, but they were things I could bring): get him really soft blankets so he had something soft, have music he liked available on a walkman, take him sorbet and other treats when I could.
posted by ldthomps at 12:10 PM on March 4, 2020 [2 favorites]
Best answer: This is tough and I'm sorry you're going through this. I'm a nurse and also my dad just died on hospice so I think I have pretty relevant experience.
There's a range of quality of hospice providers/nurses and nursing homes are hard because they are institutional settings that rarely personalize/individualize care. You're unlikely to be consistently successful getting the nursing home staff to do anything out of their usual routine.
Morphine is a good thing. Not just for pain - but for the feeling of not being able to breathe. I think advocating around the morphine is a good place to focus. Call hospice tomorrow (instead of email):
- Consider asking for the clinical director (instead of the nurse case manager you've been communicating with).
- Explain your concerns. "My father is not comfortable. My priority is increasing his comfort as much as we can"
- Ask for around the clock (instead of PRN) morphine. He can always refuse if he doesn't want it. This is probably the most important thing that can help him be more comfortable right now.
- Ask what else the clinical director suggests trying for comfort. This is their job to address. They cannot eliminate all suffering - but they can help by trying different interventions and partnering with you to troubleshoot
- Would more company help? Ask the clinical director to have the social worker and chaplain visit with him. These are required hospice services. Many hospices also have additional programs such as music therapy or volunteers who can sit with your dad, read to him, play chess, whatever. Ask what else they can provide. Emphasize your understanding that time is limited and request specific timelines for when these additional team members will visit.
Again, I'm sorry this is happening. Please feel free to message me to talk about this more or just vent.
posted by latkes at 9:03 PM on March 4, 2020 [5 favorites]
There's a range of quality of hospice providers/nurses and nursing homes are hard because they are institutional settings that rarely personalize/individualize care. You're unlikely to be consistently successful getting the nursing home staff to do anything out of their usual routine.
Morphine is a good thing. Not just for pain - but for the feeling of not being able to breathe. I think advocating around the morphine is a good place to focus. Call hospice tomorrow (instead of email):
- Consider asking for the clinical director (instead of the nurse case manager you've been communicating with).
- Explain your concerns. "My father is not comfortable. My priority is increasing his comfort as much as we can"
- Ask for around the clock (instead of PRN) morphine. He can always refuse if he doesn't want it. This is probably the most important thing that can help him be more comfortable right now.
- Ask what else the clinical director suggests trying for comfort. This is their job to address. They cannot eliminate all suffering - but they can help by trying different interventions and partnering with you to troubleshoot
- Would more company help? Ask the clinical director to have the social worker and chaplain visit with him. These are required hospice services. Many hospices also have additional programs such as music therapy or volunteers who can sit with your dad, read to him, play chess, whatever. Ask what else they can provide. Emphasize your understanding that time is limited and request specific timelines for when these additional team members will visit.
Again, I'm sorry this is happening. Please feel free to message me to talk about this more or just vent.
posted by latkes at 9:03 PM on March 4, 2020 [5 favorites]
Best answer: I'm so sorry you and your dad are going through this, it sounds like a living nightmare.
Is there any possibility for getting a different hospice nurse assigned to him or him moved to a dedicated hospice facility? The current nurse's response that "He always says that he is terrible" is to me the absolute antithesis of what I expect from hospice nurses (my dad died in a hospice and my mother-in-law had hospice nurses caring for her before she died so I have experience as a relative of hospice nursing in the UK).
I do feel that hospice care can be a little oversold (they cared and did their absolute best but there were times when the things changed quickly and the meds took time to catch up so the patient did suffer, which no-one warns you about when they say how great hospice care is). But the staff themselves were always totally compassionate and thoughtful about how they could get the patient comfortable and mostly that did work.
posted by *becca* at 4:52 AM on March 5, 2020 [1 favorite]
Is there any possibility for getting a different hospice nurse assigned to him or him moved to a dedicated hospice facility? The current nurse's response that "He always says that he is terrible" is to me the absolute antithesis of what I expect from hospice nurses (my dad died in a hospice and my mother-in-law had hospice nurses caring for her before she died so I have experience as a relative of hospice nursing in the UK).
I do feel that hospice care can be a little oversold (they cared and did their absolute best but there were times when the things changed quickly and the meds took time to catch up so the patient did suffer, which no-one warns you about when they say how great hospice care is). But the staff themselves were always totally compassionate and thoughtful about how they could get the patient comfortable and mostly that did work.
posted by *becca* at 4:52 AM on March 5, 2020 [1 favorite]
IANYD but I work closely with many hospices. In a situation where a patient can’t ask for medication, scheduling comfort meds is an absolute reasonable thing to request. That being said, if morphine is going to be scheduled, I would consider asking if he can be moved to an inpatient hospice unit, run by the hospice (and not a SNF which probably does have much lower staffing ratios). In my experience, inpatient units tend to be better run and better staffed. Please feel free to PM me with any questions.
posted by honeybee413 at 4:58 AM on March 5, 2020 [3 favorites]
posted by honeybee413 at 4:58 AM on March 5, 2020 [3 favorites]
Response by poster: Thank you for each and every answer. As some of you may know, my dad died 4 days after I posted this question. But because of the responses, which confirmed most of my own concerns, he got a different hospice nurse. It so happens that she walked in on my dad while he was in great respiratory distress and stayed with him until he was better. She called a hospice doctor and immediately got his morphine dosage increased and scheduled for every 4 hours. She got his anti-anxiety medication scheduled for every 8 hours.
In the town where he lives, my dad's condition did not qualify for the only hospice-only program, but thanks to y'all I did check. Still, the last days of my dad's life were better because he got the medication he needed when he needed it. The facility was in the process of getting him a fan (I volunteered to send one) when he died.
I cannot thank you enough for your responses and your support. Thanks to them, I called the hospice program and emotionally upchucked all over the triage nurse and just a couple of hours later I heard from a new hospice nurse who took care of most of my concerns in her first visit. You helped make that happen. My dad's death was less painful because of you. On behalf of myself and my family, many thanks again.
posted by Bella Donna at 9:34 AM on March 11, 2020 [3 favorites]
In the town where he lives, my dad's condition did not qualify for the only hospice-only program, but thanks to y'all I did check. Still, the last days of my dad's life were better because he got the medication he needed when he needed it. The facility was in the process of getting him a fan (I volunteered to send one) when he died.
I cannot thank you enough for your responses and your support. Thanks to them, I called the hospice program and emotionally upchucked all over the triage nurse and just a couple of hours later I heard from a new hospice nurse who took care of most of my concerns in her first visit. You helped make that happen. My dad's death was less painful because of you. On behalf of myself and my family, many thanks again.
posted by Bella Donna at 9:34 AM on March 11, 2020 [3 favorites]
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Alternatively, does he have the manual dexterity to write his needs on a whiteboard?
posted by hydra77 at 9:05 AM on March 4, 2020 [3 favorites]