I'm trying to decide if palliative care will benefit my mom?

1. Have you discussed with the nursing staff or DON whether or not the appetite loss is indicative of segueing into end of life stage?

2. Given that her mobility is limited, and that she has PD, I assume she's not getting any therapy, so there's really no activity to help her improve, such as bed exercises?

3. If she's at a stage where decline is inevitable, then I would consider PC.

4. I don't know if it could make her more comfortable physically; I think that's a medical issue. But I think it might make you more comfortable emotionally b/c the focus shifts to declining health rather than improvement. I.e., the concern about someone getting better is replaced by addressing what can be done at this point, given the circumstances.

When it became apparent that my father was declining and would never be able to regain strength, given his impediments, I asked about PC b/c I wanted him to be as relaxed and comfortable as possible.

4. PC's main focus isn't to prescribe pain killers. But if she's in pain, or discomfort, they can be prescribed if the attending facility doctor is in concurrence.

5. A very important factor though is that PC is private pay. I paid $342/daily. Meds were not covered by Medicare, so they were out of pocket as well.

I was able to keep my father in the rehab facility because the one I chose had a range of care options, from rehab to IL to AL to memory care. He stayed in the same room, had the same nurses and aides.

6. W/o seeming callous, I think the first issue to address is your mother's stage. But equally important is whether or not you could afford a several thousand dollar out of pocket cost on a monthly basis for the remainder of her life.

Last, I've found there's some misinformation on the part of medical people about what really constitutes PC and what really is covered by Medicare. After researching and calling, I found source to be the best: National Hospice and Palliative Care, 800.658.8898. Although PC may in the future be a more comprehensive benefit, it isn't now.

Similar question was asked by the OP here:

https://www.agingcare.com/questions/can-palliative-care-be-requested-if-a-patient-is-living-in-a-skilled-nursing-home-439287.htm

My husband was on palliative care before he went on hospice care. As far as I could see there was no benefit to palliative care but hospice was very worthwhile.

One of the benefits of PC is that care comes to you and you don't have to take the person to medical appointments. But that also means the person is housebound and cannot leave the house except for religious practices. I took my husband on a fall leaf expedition. If anyone objected I was prepared to say we were druids and worshiped trees! Another family member on PC missed a family party, even though she was up to it with help. Since your mom is in a nursing home anyway, these issues probably don't apply and this would not be a new benefit.

Another benefit is they handle the administrative part of benefits. We tried for three weeks on PC to get a hospital bed for my husband. One little thing after another got in the way. (Dr signed on wrong line, insurance papers were lost on someone's desk, etc) I signed him into hospice at 3:00 pm and a hospital bed was delivered by 7:30 pm. the same day. Hospice is absolutely brilliant at eliminating red tape. I didn't think that was particularly true of palliative care. Would this make any difference for your mom?

In your place I would ask for a complete explanation of how being on Palliative Care would change things for your mother. Ask for specific examples. They are going to make her more comfortable. How? Get a couple of examples. When my mother was on hospice in the NH, the program had volunteer visitors. One young woman gave mom a manicure. Another went to activities with her. I think this kind of attention is one of the reasons Mom did so well that she was dismissed from the hospice program after 3 months. Does the palliative care program do anything like that? Get them to tell you EXACTLY what they do.

Druids worshipping trees.... love it!

The biggest piece is remembering that hospice and palliative care will not provide additional 24-7 eyes and assistance for Mom at no cost to you and paid by Medicare or Medicaid. It’s not feasible in addition to nursing home environment to provide a 1:1 aide all the time. But some additional help a couple times per week? Maybe some additional therapy for ease and comfort? At least check it out. Then you will know.

I've found that the nursing staff at the nursing facility my dad lived at provided awesome Palliative Care. They also kept him comfortable when he needed it.

So in my opinion..you don't need additional Palliative Care as you'll just pay more for it. Her PCP (regular MD) will be in charge of your mom's medications and the only way they can change it is with an order from him.

The bottom line is that they may ask you to look into Hospice eventually.

Please..please..PLEASE..before you do..look into the Hospice that the nursing home your mom is staying in, as one Hospice isn't the same as another, as I found with my dad. The Hospice caring for him was atrocious and was never around until he passed away..and that's when they wanted to completely take over.

Blessings.

Thank all of you for your replies. I went to the nursing home today, but the Head Nurse was not available, so I will speak with her next time I go to see my Mom. But the little bit I have learned about PC, it seems it will not really benefit my Mother. In the future, when the time comes, I am planning to bring in hospice.

My mom had Parkinson's disease and lived for a while in Assisted Living (after she fractured her hip). Because of her diagnosis of Parkinson's we were able to get a very wonderful hospice to assist with her care. They gave her physical therapy, looked at her medications (and tweaked them), and sent a nurse to check on her progress. The PT was so helpful to her. She improved. She was "released" from hospice care. We were able to go through this process several times. In the end, we also had hospice care. It was a huge blessing to my family, especially to me as I was not only spending time making sure Mom was cared for, but also my elderly dad (who had prostate cancer), my home-schooling son, my other young people (in college), and my own husband.

It is true that hospice groups differ, but in my part of the country (upper S.C.) there are many wonderful groups with great care and love for their patients. While hospice is typically considered to be "end of life," I have found that if there are specific diagnoses and a patient is in decline, they are likely to take on that patient. They do come to Assisted Living facilities, homes, nursing care facilities, and provide their own facilities, too. Getting them earlier than later is very important for the patient, the support of the family, and even the caregivers in a nursing home. My dad was on hospice for several years and he was living in a nursing home. The friendship he made with the hospice staff was huge! The male caregivers that came several times a week to help him bathe were men that my dad looked forward to seeing on a regular basis. They laughed with him, listened to his repeated stories, and asked about his family. They were genuinely interested in my dad—and they grieved with us when God took Dad home to glory. If I had to do it all over again, I would ask for these precious folks to be a part of our lives. I still communicate with my parents' hospice nurse—she was there for both of my parents at the end, and she was very supportive of our entire family.

It is not what you think. They are a wealth of info on all the medical care available and have answers to about everything. They know what resources to go to and give excellent advice. The doctor orders it and when they get the order they will first call you and find out what are your needs. You can accept or reject whatever they say. I called them and we determined that at this time, I wouldn't need them but I can call them at a future date when my husband gets worse. Wish I could be more specific since I didn't need their services but information is free.

My 88 year old mom is living in a memory care facility with my dad and is in stage 5 of Parkinsons. She is wheel chair bound. In January when I took her to her doctors appointment I requested from her doctor that he put in an order for hospice. He did agree that she was ready for it. I asked at the facility where she lives to recommend the 3 best hospice companies that they work with. I then interviewed all 3 and came to my decision. She has been on hospice since late February and it has been a blessing. No more dragging her to appointments. This became very difficult to manage getting her in and out of the car. The hospice staff have all been wonderful and she looks forward to the visits from the nurses, shower aid twice a week, social worker and the volunteer. My role of managing her care is so much easier now as I have turned it over to hospice as they know my moms requests and they are available 24/7 when she is in pain or has anything going on. By hiring hospice that the facility works with they have a relationship with them so they call them up to come as needed (they came one morning at 3am when mom was in pain). I had my mother in law on palliative car and was not impressed at all with that.
On a side note I recently signed my mom up for Ada ride to get a wheelchair accessible van to drive her places as needed. This is a wonderful service for $3.50 per ride. Wish I had known about this sooner. I wish you the best as I know this is a tough journey to go on.

Marysd, you said by hiring hospice, did you pay to have hospice.

I think it depends on the patient and his or her ailments. I wouldn't refuse to give anyone antibiotics for an infection because infections are very painful and, from my experience with my MIL, pain killers don't stop the pain from infections. It's a horrific way to die.

Usually patients aren't given any medications when they're on comfort care/hospice. You have to request it.

I have found that many healthcare workers have become desensitized to hearing people cry out in pain.

Subjuedjoy - I am saddened to hear your reply "I have found that many healthcare workers have become desensitized to hearing people cry out in pain". In some cases, yes I have seen this. However, often times it is due to lack of knowing what to do. Education is the key. Such as many options to pain/discomfort control. Pain killers is only one of those options. Many hospice organizations have become experts in this area - comfort is the goal. And as I have shared in other posts, pain has many contributing factors.

Pain, especially pain at the end of life, needs to be addressed on many levels.

I just wanted to add my experience with Palliative care. That's what my cousin has. (She is late stage dementia and not mobile.) The difference, to me, was they tried to focus more on her comfort and peace and of mind, than anything else and remove all but meds that help with her comfort level. For example, she was taken off her cholesterol medication. Some other meds were removed too and now they are just focusing on keeping her content and pain free. She still takes meds swelling and diabetes.

She's not groggy or over medicated at all. She was also given antibiotics for a UTI. (Although, the benefits of continuing to treat infections with antibiotics in terminally ill patients is controversial. I've read extensively about it and what I found was surprising. I'd read about it and discuss it with your doctor.)

And the most important thing is that there are no regular or intrusive testing, scans, attempts to fix things that can't be fixed.

Her doctor didn't think she was quite ready for Hospice, but, I expect that she may be pretty soon now. Until then, I think the Palliative care is working well. I still haven't figured a way that we can avoid taking her to the ER for suspected UTI. It really scares her.

Thanks Sunnygirl for your experience with Palliative Care. I pretty much have
decided to leave things as they are. She is still mentally alert and overall doing
well. Her appetite seems to be fluctuating some.

I'd hate to disrupt what seems to be working okay at this point, so I will wait until
she declines. My understanding is that Palliative Care focuses more on pain management. She is not in pain, luckily.

I will consider Hospice when the time comes. Thanks to everyone for your replies.

So much misinformation out there. Hospice is for the terminally ill. Palliative care is for those who may continue to live for several years but find it too difficult to get out to Dr's appointments etc.
Palliative care has a team similar to hospice and may in fact be the same team that offers care for hospice so when the time comes the transition is seamless, and because the patient has been monitored by healthcare professionals, the patient can benefit from earlier hospice treatment.
Patients can go and see Drs if they choose and go to the ER and be admitted to hospital if needed.
 when they are still in Palliative care.
Hospice will advise eliminating drugs that will not improve a patient's health. A good example is cholesterol lowering meds and osteoporosis drugs which will not provide immediate results. Drugs that protect a patients health in the short term are continued such as drugs for high blood pressure and blood thiners plus diabetic meds. These can be continued for as long as the patient can tolerate them.
Once hospice enters the picture it is important to note that hospice will only pay for drugs directly associated with the admitting diagnosis. The family can continue to give medications they consider important but hospice will not pay for these. They may advise about medications that can be stopped at certain stages.
Palliative care is really like a knowledgeable friend to learn on who keeps an eye on what is happening to the patient and advises on any tests etc that need to be done.A RN, NP or PA will usually be part of the team and make home visits to examine the patient and help get needed equipment etc. Hospice on the other hand will simply provide what is needed or may be shortly needed.
Palliative care does not exclusively focus on pain management, although that may be part of their care. Their roll is the comfort and wellbeing of the patient so naturally managing pain and anxiety is a big part of what they do.
Palliative care is like Aging Care in that they have great experience and can help with any situation. Hospice is like an angel that offers comfort and reassurance and is there 24/7/365 days.
Always remember that the patient or caregiver has the final say. No one can make you do anything.
As to Hospice and palliative care worker becoming imune to pain and suffering. That may be true in a few cases but in this field of work you have to build a wall around your emotions. Does not mean they don't feel the pain, they just can't curl up in the corner and cry when a favorite patient dies. They can only do that on the drive home.
In any cases the nurses know the patients need more medication but can only give what is ordered. If the Dr say "No" and these days there are so many disincentives and even fines for doing things outside guidelines the Drs just can't go against guidelines they wish to continue to practise medicine. Florence Nightingale did not have the rescouses modern nurses have but on the other hand she had more freedom to do what she felt was right and humane.

Caregiverhelp11,
Since you "have decided to leave things as they are", that gives you the opportunity to do some investigation on the internet about hospice and palliative care. I have included just a few websites that you can look at regarding the differences between hospice and palliative care. If you have any questions later, you can always contact the organization or come back to aging.com and ask your questions.

As you have noticed, people have had various experiences with hospice and with palliative care. The world is not perfect and we don't always do what everyone wants us to do. The main thing to remember is that your loved one receives the best care possible. Sometimes that isn't easy to find and sometimes the best care is a person or facility right next door. You just need to investigate and find what works for your situation. God Bless.

everydayseniorliving.com/learning-about-hospice-care-in-7-steps/?og1=44410fae-5564-48fb-a5fc-887292931b8b&cid=cid6814&gclid=

everydayseniorliving.com/learning-about-hospice-care-in-7-steps/5/

getpalliativecare.org/whatis/faq/

getpalliativecare.org/wp-content/uploads/2017/04/WhatYouShouldKnowHandout_2017_r2_Final.pdf

samaritannj.org/palliative-care/palliative-vs-hospice/ (Samaritan Healthcare & Hospice • 5 Eves Drive, Suite 300 Marlton, NJ 08053)

www.mayoclinic.org/tests-procedures/palliative-care/about/pac-20384637

www.mayoclinic.org/healthy-lifestyle/end-of-life/in-depth/hospice-care/art-20048050

Yes DarleneRN93. Not only have I seen it, I've also experienced it first hand when I got an infection that got really bad, really fast because I was on powerful immune suppressants for an ulcerative colitis flareup. I was in so much pain that I had tears rolling down my cheeks and was hitting my head against the wall. My husband repeatedly asked for help. The nurse came in and yelled at me. She said that everyone is in pain and that I have to wait my turn. At the time, I wasn't hearing anyone else crying out in pain.

Subdued joy so sorry you had such a bad experience. No one is perfect and even nurses have their off day but that remark to you was inexcusable.
As noted education and above all leadership are the keys to a good hospice experience plus adequate staffing.
There were many thinks that nurse could have done. If you had an order for medication she could have given it immediately if sufficient time had passed since your last dose.
She could have offered some non drug comfort such as hot or cold packs and most of all she could have called the Dr and obtained new orders. What she did was equivalent to saying. " Sorry it's my break and I"ll be back in half an hour to stop you bleeding to death"
If this should happen again your hubby has to be more aggressive run it up the ladder or even threaten to call the police that will get some attention. You have to be really agressive when you meet behaviour like this. Even a call to your own Dr might have got him to intervene. Know your rights Drs offices have notices all over the place telling you that you have the right not to be in pain. Hope you are feeling better now. When I burst my appendix and had to be transported an hour to another hospital the nurse in the ER told me not to worry she woud make sure I was not in pain.

Subduejoy - Again, I am sorry to hear you had this experience. Unfortunately, these responses still are happening out there despite the education and policy changes that have been made. At this point the pendulum has swung again, and many are afraid of addressing pain due to the issues with individuals with addictions. I agree with Veronica91, the response you received was inappropriate. I hope you are doing well and that you do not experience this again.

Blessings.

Dee Anna,

Thank you for all the links you provided for me. I truly appreciate it.