Another hospice question - content warning pain/distress/

[mlktwins]

I'm so, so sorry for your experience with hospice 😪!

We just went through this with DH's parents this spring having no prior experience with hospice.  They both deteriorated very quickly, but were still in their own home together.  We had personal caregiving start on a Monday and they were admitted to home hospice on Wednesday.  Our wonderful caregivers still did a lot of the work, but hospice nursing came out regularly and extra when needed.  An aide came out several times a week to assist the caregivers with bathing, etc.  They provided pain and anxiety meds to keep them calm and comfortable - things they wouldn't have had without hospice.  My FIL only lasted about a week and didn't have a peaceful end, but I can't imagine what that last week would have been like with no pain management.  My MIL lasted 17 days longer.  Her passing was different than FIL's in that we expected her to be around for quite a few more months.  She was never on the morphine.  She was sitting up in bed with a caregiver and my SIL there.  Her pulse ox started to drop rapidly, my DH was called, and he headed right out the door to go to her.  She blew her nose, smiled at the caregiver and SIL, and that was it.  DH had just pulled into their driveway when she passed 😞.

They had the means to get whatever care was needed to keep them comfortable for quite awhile.  However, 24/7 caregiving is super expensive.  Hospice was 80% covered by their supplemental health insurance (up to $15K, which they didn't even get close to) as they did not have Medicare Part A (Hospital).  Medicare didn't cover any of hospice care at all.  That was an eye opener.  DH had been saying my dad was overpaying Medicare by having Part A and Part B.  He has good supplemental insurance, but I'm glad that Part A is in place if needed.  

[Pawz4me]

6 hours ago, MercyA said:

My grandfather was not wealthy by any means and the hospice center he stayed in was wonderful. Small, quiet, attentive. At one point he wanted a beer, and they got him one, God bless them. (And when he fell asleep and spilled it, his nurse was so kind while she changed his sheets. His comment? "What a waste." 🙂 )

 

We have a family member who previously worked at our largest local hospice home. She worked in administration/fundraising, not direct patient care. But she says she's been asked to go on beer runs many times. They get whatever brand the patient wants.

[Clemsondana]

I'm sorry you had such a bad experience.  My mom has been involved with hospice for several relatives, and another relative died at home wtih hospice care.  Some entered hospice straight from the hospital while others had care at home and then moved to hospice.  My mom had one friend who chose the time to go to a hospice facility so that she didn't die at home.  All of the experiences have been positive, with the exception of one family who had a bad experience with the person who came to help as a person at home was entering their final week.  Mom said that they were awful and said insensitive things.  The brother of the wife of the dying person called and demanded that person leave and they send somebody else.  They did, and somebody higher up later apologized to the familiiy.  Mom was impressed enough with the program that she spent several years volunteering at a local inpatient hospice facility, cooking and taking a meal for the families and patients once/month.  

A friend whose dad died of cancer when she was still living at home said that doctors told them that a lot of terminal cancer patients actually die of ODs when they are trying to get their pain under control, so there really may not have been much that they could have done.  I'm so sorry.  

[City Mouse]

I wonder if it has more to do with the medical diagnosis than the hospice care? My grandfather died of cancer and was on hospice at home. I was not there, but from what I was told, he last few days were not good. My MIL did not have “hospice” specific care but was in a nursing home died peacefully in her sleep or at least near sleep. My DH was sitting with her at that time. She had dementia along with lung and circulation issues, but nothing specific.

[Soror]

My fil had hospice care in the VA hospital, they had a specialized section just for hospice. He could have done it at home but he didn't want to. They were nothing but fabulous. FIL had some pain (hard to say how much as his pain tolerance was high and he was not one to complain). At the very end, it was worse and the pain meds had to be increased to the point he wasn't really with it and it certainly hastened his death. It was obviously the right choice. 

[KrissiK]

I am so sorry for your experience. As a previous poster mentioned as well, hospice here is not necessarily a place. It is a system of care. My dad passed away last weekend.  He was 85, had dementia and had started to seriously decline in May, but was still living at home. My mom took him to the hospital the weekend before he passed, he was in the hospital for 3 days and then put in a skilled nursing facility of our choice under the authority of an outside hospice program. It was a wonderful experience. He had always been in terrible back pain, so they gave him meds for that, but other than that, the goal was to keep him comfortable. I visited him a couple times, and then last Saturday we got a call that he was deteriorating, so we went in around 3:00. His hospice nurse was an absolute jewel. She was just gentle and loving and just became an emotional rock for us in those last few hours.. She told us what was happening as he passed. Every step of the way and the signs to look for. He passed more quickly than anyone really anticipated, but I wasn’t scared or confused, and I was with him when he passed. It was a precious experience.

[Corbster98]

5 minutes ago, KrissiK said:

I am so sorry for your experience. As a previous poster mentioned as well, hospice here is not necessarily a place. It is a system of care. My dad passed away last weekend.  He was 85, had dementia and had started to seriously decline in May, but was still living at home. My mom took him to the hospital the weekend before he passed, he was in the hospital for 3 days and then put in a skilled nursing facility of our choice under the authority of an outside hospice program. It was a wonderful experience. He had always been in terrible back pain, so they gave him meds for that, but other than that, the goal was to keep him comfortable. I visited him a couple times, and then last Saturday we got a call that he was deteriorating, so we went in around 3:00. His hospice nurse was an absolute jewel. She was just gentle and loving and just became an emotional rock for us in those last few hours.. She told us what was happening as he passed. Every step of the way and the signs to look for. He passed more quickly than anyone really anticipated, but I wasn’t scared or confused, and I was with him when he passed. It was a precious experience.

I am sorry for your recent loss. Your hospice nurse sounds amazing. What a beautiful experience for your family.

Hospice was also amazing for our family....with both my dad and more recently my Mom. Both of their passings were peaceful and I am forever thankful for the care and compassion we received from the hospice team. 

[MooCow]

12 hours ago, Mrs Tiggywinkle said:

Unfortunately in many places hospice is really designed to only be done at home.  Insurance does not like to cover extended hospital stays when the patient is on hospice and many areas do not have hospice homes.  There is one locally to me within a two hour drive and they have four beds.  It is actually a huge problem, because more and more families don’t have people that can provide round the clock care even temporarily, don’t have areas in their homes that are able to be turned into a hospice room with a first floor hospital bed and commode and still have privacy, etc.  However the majority of hospitals do not offer hospice care or a hospice wing.  People wind up in nursing homes for end of life care, which often is not a really good setup.  But in a place where there are no hospice homes(which are often lovely, homelike places), and there isn’t family that’s able to put their own lives on hold for however long the dying process takes, there is often no choice.

I love hospice.  Our local hospice is a non profit agency that is made up of some great nurses and social workers.  But they don’t provide round the clock care or have facilities where hospice patients can stay.  It’s often an abrupt shock to the family to learn that the patient usually cannot stay in the hospital once they are moved to hospice services and that there is no round the clock care available.  
 

There is a fantastic hospice nurse on TikTok that answers a lot of hospice and end of life questions. I really appreciate her channel and it’s helped me answer questions for my own patients that I meet as a paramedic and their families. 

It’s HospiceNurseJulie if you want to look it up)

 

Thank you for taking the time to post so much good info. I appreciate it. 

Just to give more info to make it a bit clearer: My mom went to the hospital on a Thursday afternoon and passed early on Saturday morning. It was pretty obvious that she was not long for this world. I really think that woman was not a good person. I was literally sobbing with my head between my knees on the phone with my husband while she was arguing with me in my mom's hospital room with nurses who then got a supervisor, who then got her supervisor, etc. In the end I threw her out of the room. It was very ugly. No one should have to be treated that way. Ever. It was incredibly traumatic.

Eta: my dh reminded me I threw her out with a whole bunch of people in mom's room. He actually was on his way there because he was appalled.

Edited August 8, 2021 by MooCow

[Kassia]

@MooCowI am so sorry about your experience.  That is heartbreaking.

[Mrs Tiggywinkle]

1 hour ago, MooCow said:

Thank you for taking the time to post so much good info. I appreciate it. 

Just to give more info to make it a bit clearer: My mom went to the hospital on a Thursday afternoon and passed early on Saturday morning. It was pretty obvious that she was not long for this world. I really think that woman was not a good person. I was literally sobbing with my head between my knees on the phone with my husband while she was arguing with me in my mom's hospital room with nurses who then got a supervisor, who then got her supervisor, etc. In the end I threw her out of the room. It was very ugly. No one should have to be treated that way. Ever. It was incredibly traumatic.

Eta: my dh reminded me I threw her out with a whole bunch of people in mom's room. He actually was on his way there because he was appalled.

I am so sorry, it sounds like she just was not a good person at all and that isn’t the way to handle it.   Even if you live someplace like I do where hospice can really only be offered in the home or a nursing home, there were better ways of handling that.

[TravelingChris]

6 hours ago, Clemsondana said:

I'm sorry you had such a bad experience.  My mom has been involved with hospice for several relatives, and another relative died at home wtih hospice care.  Some entered hospice straight from the hospital while others had care at home and then moved to hospice.  My mom had one friend who chose the time to go to a hospice facility so that she didn't die at home.  All of the experiences have been positive, with the exception of one family who had a bad experience with the person who came to help as a person at home was entering their final week.  Mom said that they were awful and said insensitive things.  The brother of the wife of the dying person called and demanded that person leave and they send somebody else.  They did, and somebody higher up later apologized to the familiiy.  Mom was impressed enough with the program that she spent several years volunteering at a local inpatient hospice facility, cooking and taking a meal for the families and patients once/month.  

A friend whose dad died of cancer when she was still living at home said that doctors told them that a lot of terminal cancer patients actually die of ODs when they are trying to get their pain under control, so there really may not have been much that they could have done.  I'm so sorry.  

But dying of od is not painful;.  I think it is inhumanem unless the person requests no pain, no anxiety meds, etc to make somebody live with excruciating pain.   I have a very long history of living with pain since I got arthritis at a young age.   But that pain, which used to have me crying=  I finally got my various types of aarthritis under control with much better control of my overwhelming immune system with modren medications and a whole lot less stress but if some of my other pains were not releived and then add my neuropathy pain and then add the horrivble very, very painful spasms I used to get when I had IBS when I was yonger and know that itis only going to get worse????  I mean, when we put our pets down, we give them a pain  or anxiety med to get them sleeping or comfortable at least so that they don't feel the next killing meds.

I am not a Catholic anymore but even when I was, I never understood the whole we should do extra things to suffer.  Haven't most of us had suffering in our lives- from one reason or another?  Who cares if a rational person wanting pain relief and knowing that in order to get it there lives will be cut short gets it????  I do not consider this the same as euthanasia at all since you aren't trying to kill anyone, you are trying to relieve suffering and a consequence = which you don't know in advance, maybe death.  

[Clemsondana]

2 hours ago, TravelingChris said:

But dying of od is not painful;.  I think it is inhumanem unless the person requests no pain, no anxiety meds, etc to make somebody live with excruciating pain.   I have a very long history of living with pain since I got arthritis at a young age.   But that pain, which used to have me crying=  I finally got my various types of aarthritis under control with much better control of my overwhelming immune system with modren medications and a whole lot less stress but if some of my other pains were not releived and then add my neuropathy pain and then add the horrivble very, very painful spasms I used to get when I had IBS when I was yonger and know that itis only going to get worse????  I mean, when we put our pets down, we give them a pain  or anxiety med to get them sleeping or comfortable at least so that they don't feel the next killing meds.

I am not a Catholic anymore but even when I was, I never understood the whole we should do extra things to suffer.  Haven't most of us had suffering in our lives- from one reason or another?  Who cares if a rational person wanting pain relief and knowing that in order to get it there lives will be cut short gets it????  I do not consider this the same as euthanasia at all since you aren't trying to kill anyone, you are trying to relieve suffering and a consequence = which you don't know in advance, maybe death.  

I wasn't arguing that giving pain medication, even to the point of ODing, was bad - just saying that short of intentionally causing an OD there might not have been anything that could be done.  I've heard horror stories of doctors refusing to give terminal patients sufficient pain medicine lest they become addicted, which is crazy.  I don't think that 'they need to suffer' is a legitimate medical plan.  I was just saying that It's possible that there wasn't anything that they could do to manage her pain using standard pain meds.  It wouldn't seem like it would take days to figure that out, but I could see 'general sedation such that they can't communicate any more' as a last resort.  

[Melissa Louise]

1 hour ago, Clemsondana said:

I wasn't arguing that giving pain medication, even to the point of ODing, was bad - just saying that short of intentionally causing an OD there might not have been anything that could be done.  I've heard horror stories of doctors refusing to give terminal patients sufficient pain medicine lest they become addicted, which is crazy.  I don't think that 'they need to suffer' is a legitimate medical plan.  I was just saying that It's possible that there wasn't anything that they could do to manage her pain using standard pain meds.  It wouldn't seem like it would take days to figure that out, but I could see 'general sedation such that they can't communicate any more' as a last resort.  

Someone close to death shouldn't have to try to kill themselves before sedation is even mentioned/agreed upon though. 

There were no fond last words in that last week so the time to communicate was meaningless. It was torturous. 

 

[Melissa Louise]

Thanks for everyone's input. 

It sounds like our experience was a combination of a hard-to-treat- for-pain cancer, a crisis admission, and maybe not a very good hospital. Some bad luck. 

It's just upsetting. I never had a fear of the dying process. I'd been at the bedside twice ( both times not in hospice but just on the hospital ward) and it was peaceful and meaningful. An ability to communicate with the person until very close to the end. The person 'slipping away'. 

But now I'm really scared. I cannot let what happened to my aunt happen to my dad, and I would rather jump of a bridge at first diagnosis than risk going through that myself. 

 

 

 

[Jean in Newcastle]

1 hour ago, Clemsondana said:

I wasn't arguing that giving pain medication, even to the point of ODing, was bad - just saying that short of intentionally causing an OD there might not have been anything that could be done.  I've heard horror stories of doctors refusing to give terminal patients sufficient pain medicine lest they become addicted, which is crazy.  I don't think that 'they need to suffer' is a legitimate medical plan.  I was just saying that It's possible that there wasn't anything that they could do to manage her pain using standard pain meds.  It wouldn't seem like it would take days to figure that out, but I could see 'general sedation such that they can't communicate any more' as a last resort.  

But that’s why (in the few states that I am familiar with in the US) it can he important to actually join a hospice program. A regular non hospice doctor can lose his/her license for prescribing controlled substances (which most if not all pain meds fall under) above certain dosages. A hospice doctor has express legal permission to do so. But that’s probably different depending on location and laws. 

[Katy]

I worked for a travel nursing agency when I was in nursing school.  Mostly being a CNA for dozens of different places.  For profit, Lutheran nursing homes, and Catholic nursing homes, and a few smaller hospitals.  All of them had hospice programs.  I also worked for three different Catholic hospitals as a nurse, as well as a Lutheran one. 

I would say that "Catholic" does not in any way mean there is one universal ethical way of looking at things. Every order has their own rules and ethics committees. I've never heard of a Catholic hospital in the USA refuse to treat an ectopic pregnancy, for example. They do advise the nurses and techs on staff that someone is presenting with a probable ectopic pregnancy and if we don't want to be assigned to that patient for ethical reasons we can ask to be removed.  But the ethics stance in the USA is that saving the mothers life is more important than letting them both die.  I understand from the news that in Ireland women have died because treating the ectopic pregnancy is considered abortion.

Similarly, all the hospitals I have worked at had a patient's bill of rights, and the patients have a right to have their pain controlled to a level under 8. In some conditions are so painful it's really not possible to have pain controlled to that level and still be awake.  It definitely hastens death.  So nurses try to be careful to watch vital signs for pain- changes in blood pressure and pulse, for example, are obvious even if they aren't conscious. Some people have a high pain tolerance and want to be awake and saying goodbye.  Others want to sleep.  Some deaths take days.  Others take months.

I don't know anything about Catholic institutions in other countries. American hospice, whether at home, in a nursing home, or in a hospice wing of a hospital generally involve private rooms in a quiet area because death can be quite upsetting for other patients if they are in a shared room.  Most hospitals are moving to private rooms most of the time (exceptions can be made for emergencies and pandemics).  This is one reason American hospitals are so expensive.

[dirty ethel rackham]

On 8/7/2021 at 11:48 PM, MercyA said:

 

I have pro-life Catholic friends and some Catholics do tend to view suffering as a "good" in a way that most other Christians do not.

Because I am so ardently pro-life, I used to believe strongly that no death should be hastened by medication or other means, ever. I think a little differently about it now. I don't think torture should be allowed anywhere, most especially not in a hospital or hospice center. And if someone's pain has reached the level of torturous, it's time to relieve that pain in any way possible, even if death comes sooner. I don't believe it's right to let people suffer at the end of life if there are effective means to help them pass more peacefully.

Some Catholics have taken church teachings beyond their original intent.  It is my understanding that, when talking about end of life care, the Catholic Church does not glorify suffering as good as a reason to withhold care that can alleviate it.  But it is more of an acknowledgement that not all suffering can be relieved.  Suffering does not necessarily equal pain.  Part of the pastoral care of the dying is to help the patient take what suffering that can't be alleviated and enter into Christ's suffering. (I'm sure I'm not wording this well.  There are people who can phrase this better than me.)   The Church is opposed to euthanasia and assisted suicide.  But it is not opposed to medication/treatment or withholding treatment to address pain that may hasten death if the INTENT is to alleviate pain.  

Melissa, I am so sorry for your loss and for your experience.  Thank you for sharing that.  It has made me aware of things that I need to discuss with dh about our hypothetical end-of-life care, since he is not the type to ask questions or be an advocate.  

[MercyA]

5 hours ago, dirty ethel rackham said:

Some Catholics have taken church teachings beyond their original intent.  It is my understanding that, when talking about end of life care, the Catholic Church does not glorify suffering as good as a reason to withhold care that can alleviate it.  But it is more of an acknowledgement that not all suffering can be relieved.  Suffering does not necessarily equal pain.  Part of the pastoral care of the dying is to help the patient take what suffering that can't be alleviated and enter into Christ's suffering. (I'm sure I'm not wording this well.  There are people who can phrase this better than me.)   The Church is opposed to euthanasia and assisted suicide.  But it is not opposed to medication/treatment or withholding treatment to address pain that may hasten death if the INTENT is to alleviate pain.  

Thank you so much for this clarification! I greatly admire the Catholic church's stance on this and other pro-life issues. In any church there are always people who take things beyond their original intent.