My mom is 89. Very frail and weak with some dementia going on. She has been diagnosed with end stage congestive heart failure. She also has afib. She has four leaking heart valves and angina. She was on warfarin for years and her cardiologist recently switched her to Eliquis in the last few months. (blood thinner to prevent clot and a stroke). My mother just enrolled in hospice so it is an adjustment from shifting focus from keeping her alive to just keeping her comfortable for however long she has left. The goal I'm told of hospice is not to hasten death but to just give her better quality of life and manage her symptoms for as long as she has left. I'm confused though. The hospice nurse on her first visit today suggests that we discontinue her Eliquis. By discontinuing this blood thinner doesn't that increase her risk of stroke and thus an earlier death? Wouldn't that "hasten" her death? Wouldn't a stroke make her MORE uncomfortable??? I'm just really confused. Thoughts???
Also I have one more question for anyone who has had experience with congestive heart failure patients. How will I know when the end is near? My mom is ambulatory but BARELY. She falls several times a day. Because of the dementia she is up roaming around a lot through the night and thats when she falls. She will use her walker but after a few steps puts it aside and continues on her own weaving and wobbling with each step. She is very slow and very unsteady and very weak. I'd say within a couple months she'll be bed bound. Sometimes she is very lucid. Other times out of it. She is currently in afib. She eats very little. Communication is hard because not only does she not understand a lot or retain what you tell her but she is almost completely deaf now. At her last pcp visit a couple weeks ago he said she was definitely eligible for hospice (which we are on now) and that she is end stage and terminal.
General hospice means "no treatment" for anything save conditions that need comfort care. You can speak with them and they will likely allow you to keep elequis on board. Often blood thinners have a need for monitoring by blood test. They won't want to move Mom to lab or hospital for that, so it all depends if it can be monitored in home/in facility, likely.
You now have Mom in Hospice. They will be VERY OPEN to your discussing all of this with you. Do speak with them. I am wishing you luck, and you are so correct that it is a trip to move from watching for and treating everything to accepting that end of life approaches and treating only those things that give a better quality of life.
Hospice was a blessing to her and to me. They made her death peaceful and pain free.
They also recommended discontinuation of medication when she first enrolled. But the nurse explained that if mom chose to stay on those meds, it wouldn't disqualify her from hospice services; hospice just wouldn't provide those meds. Mom could still get them through her prescription plan. They also cleared the discontinuance with her cardiologist, who was mom's hospice doctor. It was mom's decision to discontinue what they recommended, and I have to say it didn't make much of a difference in how she felt, nor did it hasten her passing.
But you have legitimate questions about the meds; you should reach out to your hospice nurse and talk to him/her. Tell them honestly about your fears and doubts. Your concerns are not unreasonable. My mom's hospice was very patient with me and all of my questions. Hospice is there for the family nearly as much as for the patient.
Feel free to PM me with any specific questions, and I'll try to answer as best as I can.
(((hugs)))
I cared for a couple of patients who had unwitnessed falls that were not reported right away. One patient had injured her abdomen in some way - and had a painful death from internal bleeding that might have been managed much better if her hospice team had been told about the fall when it happened.
Even for non hospice patients, the risks of blood thinners start to outweigh the benefits at advanced ages.
Unfortunately, your mom's history of falling while being on blood thinners makes her a prime candidate for a brain bleed if she hits her head. That happened to my FIL, and he went from a generally healthy guy with only a bad knee and a 10-year-old stent (therefore the blood thinners) to dead in 24 hours when he tripped, fell, and hit his head.
My mother had Covid when she first went on hospice in January of last year. She developed venous ulcers -- huge blood blisters that would burst and leave big open wounds on her legs -- so the hospice folks decided she needed to be off blood thinners to keep the complications to a minimum. They took her off them around mid-February, and she lived until the end of July and never had a stroke or blood clots.
Around two weeks before she died, it became clear that her CHF medications were no longer working. Her heart rate woqld go up and down for no apparent reason, and the same with her blood pressure. I said to the hospice nurse that it seemed like her meds didn't do anything any longer, and she said, "That's something we need to talk about."
We did talk about it, and it was at that point we decided it was time to focus solely on medications that kept her comfortable. We stopped her heart and BP meds, plus her Lasix, and amazingly, everything settled down, PLUS her edema went away. She truly was comfortable at last. The nurse continued to dress the leg wounds daily, and eventually she told me I might want to get my brother to come visit. I never saw anything significantly different in her condition, except she started looking like a completely different person. She was always overweight and had a round face, but her face became very angular and more slack, and in those last weeks she lost most of her hair. She suddenly looked just like her father.
My brother and I stayed with her all day for the next three days, and she died peacefully the morning of the fourth day before I got there. (She was in a memory care facility.)
I think it comes down to quality and what is the least harmful.
You are dealing with a maybe versus a daily occurrence.
I would speak to her cardiologist.
I wanted to give you very clear guidelines so that you or anyone else with a similar situation understood more about hospice.
First, hospice is paid for primarily by Medicare. Medicare has guidelines that every hospice must operate under and that individual hospice interprets the Medicare guidelines for their agency. So what that means is one hospice may read the Medicare guideline of a patient with a dementia diagnosis and determine the patient is not eligible for services and another hospice may read the same guideline, evaluate the same patient and determine that the patient is eligible. Simply put, there are variations between hospices.
This leads me now to medications- Medicare requires that the hospice agency provide for the all needs related to the care and treatment of that patient, which includes medications, supplies and equipment. Hospice providers do not also have pharmacies, medical supply companies and DMEs, so they must contract with those vendors. Those contracts state what the vendors will and won’t provide to the hospice agency- and sometimes, for whatever reason, things like specific medications aren’t on that list- so the hospice agency can’t supply it to the patient. The hospice agency can also decide, based on how they interpret the guideline, as to whether they will keep the patient on their medications or discontinue their medications, change them to a cheaper medication to save on their pharmacy bill, stop a medication completely because they deem it to no longer be necessary- and all of these decisions can be within that hospice agency’s realm to make. This is why you will have some people say the hospice made them stop all their medications or the hospice required them to use a generic brand for their medication.
This brings me my last and final point- a good and reputable hospice is in hospice because they see the beauty in caring for people at the end of their lives. A good and reputable hospice has nurses who want to make their patients as comfortable as possible and will advocate on behalf of those patients. A good and reputable hospice will be able to explain to you and would want to explain to you why they are suggesting stopping a medication, or for some of the other posters, why your loved one passed away so quickly on hospice. (Often times it is because the rest of the healthcare system didn’t prepare you or the patient for what was really occurring). A good and reputable hospice can tell you their interpretation of the Medicare guidelines and if you don’t like how it is being applied, then there are other hospices who may have a different response.
I hope this helps. Also, for what it is worth, I do not think Eliquis is a good medication for an elderly person who falls frequently. I also wouldn’t recommend starting Warfarin instead.
Thank you for allowing me to be a part of this conversation.
The quality of your mother's life now sounds terrible, frankly, and not something I would want to prolong if I were in your position. Dx'ing the Eliquis is not likely to 'hasten' her demise, as it didn't for my mother. Your mother will pass when it's her time to go. The goal of hospice is to minimize her regular medications in order to allow nature to take its course, using whatever medications (like Ativan and morphine) are required to keep her comfortable and not agitated. Those meds won't kill her or hasten her demise, either, just keep her comfy during her end of life process. But, it's up to YOU what meds you'd like discontinued; hospice will always consult you before doing anything, including administering comfort meds. If you feel it's better to keep her on the Eliquis, then do so. Also, make sure it's hospice's plan TO consult you about the meds, so you'll have a say in her care.
Hospice will let you know when they feel the end is near in terms of end of life signs your mother will exhibit. When my mother with advanced dementia was nearing the end of her life and on hospice, she took to her bed one day. Her heart was giving out and her body was exhausted. She went to bed on a Tuesday and became semi-comatose; she passed away the following Tuesday evening. Hospice was wonderful in keeping her comfortable and out of pain and agitation using a minimum of medications. By the time she had taken to her bed, my mother had fallen 95x! While she didn't hurt herself badly, it was a miracle due to the blood thinners she'd been on!!! That's a big factor for your mother too! Taking her off of the Eliquis, in my opinion, will be a blessing for the falling factor alone.
Before she took to her bed, her large appetite diminished quite a bit and she was picking at her food. She was short of breath all the time, but refused to wear oxygen full time. She was falling more often, too. And her confusion and agitation levels were rising continuously; she had to take higher doses of Ativan to stay on an even keel toward the end. She forgot how to use the phone and no longer was able to call me. She lost her core strength and was slumped over in her wheelchair, and leaning far over to the right (leading me to think she'd had a stroke, but no diagnostics are done with hospice, so we'll never know for sure). Those were the end of life signs she was exhibiting for at least 6 months prior to her death.
Your mother is end stage and terminal, as her PCP has told you, and as evidenced by hospice accepting her into their services. There's nothing more to do for her, medically speaking, but to keep her comfortable. That was my desire for my mother, b/c with dementia and CHF, afib and pulmonary hypertension going on, the last thing on earth I wanted to do was to extend her life at all. She was ready to transition, too, and wound up passing quickly and painlessly under hospice care. For that I am eternally grateful. She was 95 and lived a good, long life. Dementia and all those heart conditions were only making her final days miserable.
Wishing you the best of luck with all you have on your plate.
QAULITY of life vs. QUANTITY of life.
Once she has left the care of the GP, the hospice doc takes over. I know my dad went from taking 4-5 meds daily to only having meds for comfort. My mom still mashed up his cholesterol drugs and put them in pudding. I caught her doing this and for some reason she felt that this particular drug was still VERY important. We had to literally take away all the old meds and let the comfort meds be the only thing he took. I remember saying to her "why would you want to put him through a single DAY of the misery he's in?" She had no answer--just hadn't accepted the reality of the situation.
Ask her cardiologist about discontinuing Eliquis. My mom was on warfarin (Eliquis wasn't around) because of her artificial valves. I don't recall if he discontinued warfarin as she neared the end. Eliquis & warfarin work on different phases/areas of the clotting mechanism in the blood. The irregular heartbeat could create an environment for a clot, but that doesn't guarantee she'll get one. Falling probably makes her a better candidate for bleeding. There are now medications to reverse the bleeding effect from Eliquis; however, her age, condition & hospice protocol could preclude that intervention.
There will come a time when your mother will not have the strength to get out of bed. In one way, that could be a blessing, as you will no longer have to worry about her falling. But the congestive heart failure will make breathing difficult. That was the most difficult for me to deal with. By that time, it's unlikely she will be very responsive.
My mom was in hospice in a hospital, under an oxygen tent with an oxygen mask. Her breathing was labored and congested. The nurse suggested morphine, but I didn't want to do that because I mistakenly thought it would hasten her death - foolish me, she was dying with or without morphine. After a short while, I agreed to a small dose. The change was dramatic: no more congested breathing. She continued to get doses as needed and died the next day.
My mom was 1 month shy of her 88th birthday. No one expected her to live that long - she was close to death when she was 65, but life saving surgery at the Texas Heart Institute gave her an extra 22 years. She lived with me for many years. We didn't always get along, but I wouldn't exchange those years with her for anything. I'm so sorry that you have the added complication of dementia, and I wish you well as you travel this difficult journey.
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