Just need thoughts. There really aren't other options. My mom has stage 4 rectal cancer, heart failure, and delirium, among other things. This most recent hospitalization they brought her in with septic shock, care home did not keep her clean and uti got out of control. She is on meds to keep her bp up, and on a feeding tube. She's on morphine, a fentanyl patch and zyprexa and STILL full of fight. I am scared that if I agree to hospice she will be gone within hours after they stop her bp meds and feeding. That they'll just up the pain meds till she's gone. They got me to sign a DNR last week, that was difficult enough. Now they want a hospice decision and I feel like I'm being rushed into it...I don't feel she's ready to go yet....
As you say, you are in charge. Please discuss with MDs and with Hospice itself. But you do understand that yes, a tube feeding would be likely removed. BP meds may be kept. Those things that contribute to prolonging life will not be kept. Those things that contribute to comfort will be kept and you can speak with hospice about what will be kept. She is on fentanyl. That is the last line of what there is to keep her pain at bay.
That you signed the DNR is a good thing. Why in the world bring someone back from the peace of death to be tortured longer? There is no end-game that is good. She will NOT be cured. She will die, either quicker and with less pain or more prolonged, with more torment and torture. I am afraid that is the truth in this matter.
As I said, Cancer in its last stages could not care less whether we or our loved ones are ready for us to go. Please thing as much as you can of the kindest and most comfortable thing you can do for this person you care for, and who you wish to honor the wishes of.
My first question would be - how was she doing before the UTI - was she able to tell you how she was feeling and her wishes - if she was in pain - was she living some quality of life and okay with that before the infection?
I only ask because I see and have experienced the non UTI quality of life where a week before a UTI my mom can express to me her wishes and if she is happy and I see her in a daily routine etc and any signs of a UTI and delirium are Not true to her normal daily life. They are horrible on her and what she presents in a hospital setting with an infection is far from what her normal life looks like. I have been through recently (again just 2 months ago) drs opinions that truth is we’re not based on what my moms daily life looked like - and once she was treated and the delirium cleared a week after being home she is a different person and does have a good quality of life that she is happy with. Now my Mom does not have a terminal illness - she is a stroke survivor. So I think only you - who knows her best before the uti can make the decision based on her quality of life previous to the infection. But from someone who also felt pressured in hospital settings (where they dont know her on a daily basis - it does lay with you to try to really find what you feel your mom would want). It’s hard to find these answers but I do trust myself over the medical world who doesn’t know the persons wishes or who they are outside of the infection they see before them. If you feel they are basing moms care or end of life decisions based on what her infection status is right now then I think you are correct in thinking more about their advice. Sending prayers your way that you find peace in what you feel is best for your mom.
Rectal cancer sounds absolutely horrible. Why would you want her to continue on with this?
What are HER wishes? Can she still voice them and be a part of her own care decisions?
Watching a LO sloooooowly die is awful. Everyday is a new pain filled, depressing day---when my dad chose hospice, we finally had some 'plan'. Peace filled his life. He was kept out of pain, which he had suffered from for years. He was calm. He was lucid, until the end.
Yes, we could have kept him 'alive' for months, probably, with IV's and a feeding tube, but to what end?
It IS a difficult decision, but you really need to put mom's desires first.
They aren't going to stop her BP meds, nor will they stop feeding her. What they will do is treat her issues where she is without taking her to the hospital or doing anything above and beyond comfort care. If you want her to go to the hospital for something, she's taken off hospice for that time, then she can go back on afterward.
I put my mom on hospice in January because she'd been in the hospital for two weeks with sepsis, also had delirium to go with her dementia, and I wasn't going to put her through that again. Since then, she's had Covid (which was treated), pressure sores (treated), and more wound care (treated). She continues to get the medications she took before she went on hospice. She doesn't eat by choice, but she gets Ensure daily and is offered food at every meal. She is in no pain, and if she developed it, the eradication of pain would be the primary goal. Her comfort is the main purpose of her care now, and what no one does is seek to cure what can't be cured, namely, old age and its accompanying decline.
You need to decide if you want your mom's life to be quality or quantity. Modern medical science can keep a body going indefinitely, but to what end? Do you want your mom's remaining days to be full of delirium and doctors poking and prodding her, or do you want her to be as comfortable as possible in familiar surroundings? She may very well last a long time under the lower stress of hospice care.
On the other hand, they tried TWICE to deny Hospice for my mother. She was 97, little or no hearing, had a stroke just before they were contacted and because of the stroke (plus limited mobility before the stroke, much less after) I cancelled her Mac Deg treatments. She was already in a wheelchair (refused to stand/walk unassisted, no real reason other than fear of falling, despite having a rollator.) First nurse came off hours and looked at her chart. It was over 1.5 years old, because mom's appt in 2019 was cancelled due to the virus. Telehealth was offered, but I wasn't allowed to be there and she wouldn't understand it. Not only that, they can't check pulse, BP, weight, listen to heart and lungs - WHAT is Telehealth going to do for her (this was well before stroke)? I refused that for myself as well. No medical issues, no Rx to refill, no point!
Anyway, the nurse made them come back after she did Telehealth with mom and doc. They still denied. Biggest answer to my query? She hasn't lost weight in the last 6 months! Lordy people, she only just had the stroke!!! The nurse finally won that battle. They DID demonstrate weight loss, very quickly, because 1) the stroke affected her dominant side, impacting feeding herself and 2) she also had trouble swallowing, so she'd pick at her food and not eat a lot.
Other than supplies and medical equipment, plus checking on her, Hospice didn't do anything. No narcotics until after the second stroke several months later.
I'd say sign on, but YOU decide what, if anything, they give her. Allow the current treatments to continue and see how she does. It won't really prolong her life, but if she was relatively stable before the UTI and can get past the sepsis, she may have many more months or more of acceptable life. It isn't like we're suggesting open heart surgery to prolong life, just treat an infection and move on!
Your mother's heart will stop when IT is ready to stop, not 'within hours' if she is still full of fight. Hospice is not in the business of 'euthanasia', but keeping people comfortable and out of pain when they're at the end of their journey here on Earth. That can take months to actually happen, in reality.
Remember, this isn't about 'you' but about keeping your mother comfortable and out of pain. Nobody is ever ready to say goodbye to a loved one, but sometimes it's the only thing we CAN do. I called in hospice for my father when his brain tumor was making his life unbearable; I'm very glad I did b/c his final 19 days here on Earth were pain free with no agitation or fear. I thank God for hospice every day.
Wishing you the best of luck during a difficult time.
Too many people wait until the very end to get hospice which is incredibly sad to me.
Why would anyone want to suffer needlessly?
Hospice is comfort care to allow a person to die with dignity and free from pain.
That’s how I would want to go if I were in your mom’s situation. I would never want a slow and agonizing death.
I hope that you will take advantage of hospice as the hospital is recommending so your mom will be as comfortable as she possibly can be.
My mom has end stage Parkinson’s disease and is under hospice care. I wouldn’t want it any other way.
Mom is going to die. I want the time that she has to be comfortable. That is what is most important to me, not to stretch out the number of days, besides hospice does not hasten death.
People die because they have incurable diseases.
I'm sorry for the loss of your mother but when doctors quote you a prognosis like "she has 6 months" this is *always* a rough guess based on prior patients with similar issues. There's no sure way to know as every person is unique and there may be other variables that impact one's survival. My FIL had pancreatic cancer. Most die within a year or less and that was the prognosis given to him by his doctor at the stage they discovered his illness. He lived for 2 years. You never can know for sure.
Hospice will not have the feeding tube removed. (Hospice will not have a feeding tube put in but if it is there when the patient goes on Hospice it can remain)
Think of Hospice as having another medical team helping you and mom.
Is mom aware of what is going on? If so have her part of the discussion when Hospice is explained. Just like any other doctor having a conversation with you and her together,
The goal of Hospice is to help care for someone that is reaching the end of their life, when no other treatments are going to improve the quality of life.,
Part of that goal is to make the patient comfortable NOT in a stupor. If part of that is increasing medication that is what they will recommend. But if you are administering medication YOU get to decide (within reason) how much and when. Yes there is a dosage that is prescribed and there is a time schedule but it can vary. But I am sure you do not want your mom in pain either.
And if you wish mom to be brought to your house Hospice can arrange that, they will have the bed and all the equipment that you will need and they will arrange transportation to your house.
Lastly If you do not feel comfortable with Hospice after even a few days you can drop Hospice and continue with her previous medical team.
I had a very positive experience with Hospice, my Husband was on Hospice for almost 3 years. I would not have been able to care for him the way I was able if it had not been for Hospice.
There are basically 2 types. FOR profit and NOT for profit. The one I happened to select was a NOT for profit. I suggest you interview several Hospice just like you would interview or research any medical provider .
When we finally could get Hospice on board (denied TWICE!), there were NO narcotics used until after the second stroke, which really did a job on my mother. They checked on her, would help or make suggestions, they were a support for family, they provided supplies and medical equipment.
Everything they can/will do for you and your mother is up to the two of you AND highly dependent on how well she can fight off the sepsis. Even if she improves and can go back to where she was living before, she can remain on hospice, just in case - until they (or you) deem her no longer needing their services.
See how her current treatment goes. Bring Hospice in at least for the support they give. YOU and your mother, if she's capable, decide what she should get for treatment. If she wants to continue, go for it. Worst case is nothing works, but at least it was tried. Best case, she bounces back... But I would try to keep her on Hospice because she will eventually need it, with stage 4 cancer. Better to have it and not need it, than need it and not have it!
These are absolutely hard decisions and I’m sorry you are having to make them, a little surprised given her medical conditions and that you obviously have MPOA or equivalent that she wouldn’t have already made her own decision about DNR. I can only imagine how overwhelming it is to have to make that decision for her and the Hospice decision all at the same time. Based on stories I have heard here Hospice care can vary widely from place to place and area/state to state/area but I can tell you our families experience with Hospice was a very good one, my uncle lived on home Hospice for a year or more and then when it was time a resident Hospice facility for a couple months before passing and it was a good and needed transition for him as well as his loved ones. All I can offer on that decision however is while the hospital is pressuring you this is not a decision you have to make on their timeline. Get information from several places about the Hospice options in your area, understand how it will work if she goes back to the facility she came from and if there is an option for full time live in Hospice facility that she qualifies for. While a patient needs to qualify for Hospice, it sounds like your mom is there and it does mean stopping most medications that are simply prolonging life it doesn’t mean stopping all and the focus on comfort, quality of life and there comes a point when you know, even if it’s hard to admit, that’s what’s best for your loved one. It also does not mean they will be gone in a matter of days, though it could depending on how much they are being kept alive and it could depending on how ready they are to go, patients stay on Hospice care for years, though I think I read the avrege is 6 mos (?) and some go off Hospice because they recover enough they no longer qualify or because they decide they want to, it doesn’t have to be an tragic ominous thing. In the best case it’s a comforting, positive thing for terminal patients and their families.
Again, Hospice care seems to be widely varied so do your due diligence, find out what the options are for you, interview them and know what their medication plan will be if you put her in their care, know what they will offer you and your family as well and go with your gut in the end not the hospitals desire, unless of course they are the same. You control this but don’t do it alone, reach out the way you are here and include your family in the process too even if it’s just sharing what you have learned and what you are thinking. If mom is or gets to the point of being capable of course include her as well. I’m sorry so much is falling on your shoulders all at once but try to find strength in taking control, gathering information and considering where your feelings are coming from. Don’t get me wrong your feelings and readiness are also important here, not to be minimized but try to recognize which are yours and which are mom’s.
Good luck, I will be thinking of you as I know many others here will. Sending strength your way.
I'm so sorry you are going through this. {{{hugs}}}. Your mom sounds like a fighter, for sure. Is she able to tell you what she wants, how she really feels about going on hospice? Does she understand, or is the "delirium" making that difficult?
At the very least I would consult with two doctors who may have treated her at the hospital, if you haven't already. My brother recently passed after being hospitalized for three weeks and on hospice for two. I talked with the hospitalist and the oncologist they had called in for evaluation. I felt better getting a consensus on his situation with them and other hospital personnel, as well as with my two other brothers. I asked my ill brother what he wanted, and he said he was ready to see Jesus again. It was then easier to see clearly that hospice was the way to go.
Remember, you are not at fault for your mom having cancer, heart failure, and the other things she is sadly having to deal with. Unfortunately her cancer and other health issues are really what is making this decision. I understand your feelings and fears. It is so hard to sort through. But in the end, what would be best for your mother's remaining time? When you say she is a fighter, is she also realistic in her understanding of this? What about your siblings, if you have them, other caring relatives, etc. Are they being supportive?
People can be on hospice for longer than expected. It is not an automatic death sentence. It is to my knowledge meant to ease the pain and give support. It is meant to provide care and compassion to the person and their family.
Release the fear and be easier on yourself. You will make the best decisions once you feel you have the right information. I wish you the best.
I posted earlier. I would like to add a few more thoughts.
Please ask to speak to your mom’s social worker.
Social workers deal with these situations on a daily basis and are very helpful when we are facing emotional decisions.
Sometimes, those closest to a patient (family members) aren’t always able to be objective and therefore they aren’t able to see things as clearly as a person that is looking in from the outside.
I say this because you said that it was hard to sign a DNR. I know that emotionally it is a hard thing to do but from a medical perspective it is absolutely the right thing to do.
I know someone that was the medical POA for her dad.
They had six children in the family. Her dad did not want any resuscitation but as medical POA she overrode his decision and did it anyway.
Do you know how much longer that her dad lived? And in severe pain? Exactly one hour, that’s it!
She truly regrets that she did not listen to her father and her siblings.
It’s truly an ugly situation when an elderly man or woman has ribs broken as the medical team does CPR.
Be at peace about your decision to sign the DNR.
Be at peace knowing that if you choose hospice that she will receive wonderful care with the hospice staff.
Do look into various organizations because they aren’t all the same. I researched when I selected hospice for my brother and we did the same for my mom.
This is a difficult situation to be in. I am so sorry that you are struggling with all of this.
I lost my dad years ago. I lost my oldest brother and I don’t know how much time my mom has left.
All I know is that mom is ready to leave this world and I don’t blame her.
She has suffered enough and at 95 she certainly deserves to be as comfortable as possible with the help of hospice.
The caregiving staff at mom’s hospice house are angels. They truly are and I am ever so grateful for them.
Wishing you and your family all the best.
This is something that was discussed many years prior to either one getting sick.
When they each were placed on Hospice there were guidelines that were established upfront.
In my mother's case, she had Alzheimer's, being on Hospice was helpful for her, and she rebounded in a couple of weeks. At which time she was taken off Hospice. This happened about 3 times over a 10 year period.
In my wife's case, she had Pancreatic Cancer, and Hospice was end of life for her. She lived approximately 8 weeks from the day of diagnosis. Never came home from the hospital. She was placed on Hospice approximately 36 hours before she passed. To me that was a blessing. She did not have to suffer for a long period of time.
I personally do not understand people that want to see their family members suffer because they don't want to "lose" them. They are thinking about themselves and not the person that's sick.
DNR's and living wills should be discussed within the family at an early stage.
My mother gave me her "end of life" wishes right after I graduated high school. I was 62y/o when she passed.
It is torturous watching mom slowly fade before our eyes.
She’s ready to be with my father in the afterlife.
The quality of life has gone down to zero. She’s completely bed bound now with end stage Parkinson’s disease.
We used a not for profit Hospice Company and they were wonderful and compassionate and helped dad live out his remaining days with as much dignity as possible. They were always available to answer family questions. Yes, they took dad off all his medications, except for those that provided comfort. He never needed the narcotics that were prescribed for him and as far as we knew he was not in physical pain.
I know this is hard - is your mother ready to leave behind her earthly bonds? It sounds as if your aren't. When my MIL had a major bleed in her brain and once we knew that she could not recover I told my husband he may need to let his mother know she could leave it was okay with him - even though she was unconscious.
It does sound as if your mother's time is upon all of you and I understand you and the family may not be ready. Please make a decision for what is in her best interest. Yes, once hospice takes on your mother's care she will be taken off all meds that don't provide comfort (although the RN in charge of dad did go over his meds with me and asked about a couple of them - to continue or stop); she very well may die soon, but hospice will take care of her and try and keep her comfortable and let her die with dignity. It is not hospice's position to speed up her death, but let nature take its course.
I wish you peace and comfort.
Both my parents signed a DNR when they entered AL. If it were needed again and mom wasn't competent to sign again, I'd sign another DNR for my mother - I don't believe it would be easy, but I would do it as it is her wish. She will turn 88 in about a week. She feels she's had a good life overall, but doesn't want to be brought back to life at this point.
Invisible, thank you so much for posting this link. I think everyone should read it. It is very helpful.
If you aren't read to end all of the life saving meds, then don't. She can return to nursing home with bp meds and the feeding tube to see if she gets better. If there is a way to move her to hospice bed with bp meds and feeding tube, then do that. Hospice facilities seem to give patients more of their time and explain things better to the family.
If she must go back to the same facility, are you going to be able to go in and sit with her. Observe her care. More time than previously spent there? If not, you may be sending her back to the same quality of care she had before - lack of cleaning and no real chance of improvement and can't tell you what is not being done for her. I think at this point I would choose the facility that will allow me the most time I can get as a visitor.
My mom went into hospice in the beginning of August; she passed October 8th. At no time during that time did hospice push pain relief medicine onto her; we had the "comfort" pack in the fridge, but I literally didn't crack it open until 5 days before she passed, when I could tell that she had entered the transition phase and was actively dying.
When the intake nurse was talking to us, she went over the list of my mom's meds - and granted, my mother wasn't on that many, relatively speaking - but what we were told was she could continue with ALL of her meds if she wanted, but hospice would only provide her with certain ones of those; meaning that they would contact the pharmacy who would deliver them without charge. But if she wanted to continue with the other meds that didn't fall under hospice's purview, she could do that, we would just be responsible to ask the prescribing doctor for them, and pick them up and pay whatever the usual co-pay was. My mom opted to stop the unnecessary meds gladly - but hospice gave her that choice, giving her the power to decide, which she was so appreciative of!
Don't forget, hospice doesn't just make these decisions willy-nilly. My mom's cardiologist was the doctor of record with hospice, and any decisions about her medication/treatment were made after hospice consulted with him. The organization didn't just make the decisions on their own. It really was a team working together to give my mom peace at the end, and I am grateful for their care. And when mom passed, the nurse came, made the pronouncement, called the funeral home and then cleaned mom up a bit before the funeral home arrived. I was overwhelmed with the respect she showed; as she was cleaning my mom up, she was still talking to her, telling her what she was doing as though my mom was still there. I found it so kind and comforting.
Raysgirl, I am very sorry about your mom, and I can understand your feelings; my mom was a fighter too. My mom started her transition on a Sunday - I went up to check on her, and she was gasping for breath in her chair and said to me "something's wrong - I just don't feel right..." and at that moment I was so thankful she had opted for hospice. I was able to give her the medication to relieve her pain and anxiety, without frantic calls to her doctor or an ambulance ride to the ER. I agree with the others who say you're never ready to say goodbye to a loved one, but I was so glad that when the time came for me to say goodbye, I was able to keep mom pain-free and comfortable in the end.
I wish you peace and comfort during this time!
DNR - do not resuscitate. Basically, if the person stops breathing or heart stops nothing will be done to restart either. No machines to keep heart or breathing going artificially either. She can get oxygen via mask or nasal cannula. Medications, food, fluids, curative care measures are all given - except the ones that restart heart or breathing. CPR is brutal. People are known to have ribs and sternum broken during compressions. If she could not manage recovery from what could be considered a major car accident - make her a DNR.
Hospice - comfort care measures and not curative care. This means keeping pain medications, food, water, and whatever helps the person to be comfortable. If you want her to continue getting food and fluids via tube, that can be done. If you want her to continue getting her medications, that can also be done. Talk with the doctor about each medication and what is does. Decide on keeping medications that help her with pain, to relax, to be at her best... Most likely antibiotics will be discontinued. Her blood pressure medication can probably be given via tube. The goal is to allow her and family/friends time to together to live and relish the relationships. Some people die rather quickly on hospice and others can go for months.
She will pass when her body is worn out and ready to let go. Making somebody a full code will not keep them alive when they reach this point. Putting somebody on hospice will not hasten their death either.
So, again. Take some deep breathes. Ask about each treatment and medication she is getting. If your goal is to restore her to her prior health - then ask for full code and all measures to be done. If your goal is to help her enjoy whatever time she has left in life - then opt for DNR and hospice.
I know when mom and dad did all that legal paperwork that they opted out of "extraordinary" treatments, aka DNR was on the table. When I signed mom into the MC facility, I signed their DNR form. She was already early 90s, with dementia. I would not put her through any major surgery or excessive treatments. UTI, sure, treat that. Pain, treat is as best as possible without surgical intervention.
When she had a stroke around Labor Day, the nurse called EMTs. Mom didn't want to go, so they called me. She said no, doesn't no mean no? I finally told him if YOU can convince her to go and get testing done, fine. If not, leave her be. Definitely NO hospitalization. I did get agreement from YB, the other POA. Seriously, she's 97, little or no hearing, being treated for Mac Deg (until this stroke), already in a wheelchair, dementia, overweight, WHAT exactly is this testing going to do for us? Confirm stroke? It was pretty obvious that's what it was! Treatment? Other than bringing in PT for a bit, to try to help her feed herself and assist in pivoting for transfers, there's no real treatment for this, at least not at her age. She'd been on BP meds since the dinosaur ages, but now couldn't really take meds by mouth (swallowing impacted.) Nope. DNR and no real treatment. Leave her be, which was her wishes too, even with dementia!
My brother recently had a massive cancerous brain tumor removed. The tumor was over the left frontal lobe, which is where personality, memory, impulse control, problem solving reside. He is a very different person; some brain tumors can cause apathy and it's controlling him at this point. He used to be a musician. My niece played a favorite song and half way through he told her he wasn't interested in hearing it anymore. He has no motivation for occupational therapy for learning to dress himself, shower, etc. He's agitated, uncooperative and curses people trying to help him in rehab. Hopefully with time he will improve. At this point we've elected DNR because it's doubtful he would have a good life if he was brought back. Maybe we will change that if we see progress. We know if he saw himself the way he is now, he would not want to live that way.
You need to put yourself in your mom's shoes and do what you think she would want done, not what you want.
It's sad to get old and know you don't have much time left, but I would want some kind of quality of life to want to live.
Hopefully your mom can relay her wishes.
Prayers
"Can you be on hospice with a feeding tube?
Placing a feeding tube: Generally, feeding tubes are not placed in patients once they are enrolled in hospice care. On rare occasions, a decision to proceed with feeding tube placement is made in conjunction with the patient, family and hospice interdisciplinary team."
and
"Hospice services will not be denied to a patient who already has a feeding tube in place. The hospice team will work closely with the patient, family and caregiver to decide whether to continue to use the tube. While a feeding tube technically can be removed, most often the decision is made to just stop using it."
So if you and/or mom wish to continue with the feeding tube, it shouldn't be one of the concerns in deciding to enlist hospice.
While I'm not a doctor, I don't think stopping BP meds or feeding would result in death within hours - if she did pass that quickly, it was likely her condition, not the cessation of medication or food. My mother was already having issues with taking her BP meds, which got worse after a stroke, which affected her dominant side, speaking AND swallowing. I did consult with pharmacy who said we *could* open the capsule and put the medication into something like ice cream or pudding, but any chewed crystals would be ineffective as they are time released. Not likely she would chew ice cream or pudding, but even if she did, there would be some medication swallowed. Some was better than none! Hospice did NOT require stopping any current medication. What Hospice won't do is treat something new. However, if something else cropped up that you wanted treated, you can take her off Hospice.