She is 91 years old and has Parkinson's disease. She is in a Nursing Home, is bed bound and wheel chair bound. She is not in pain, but experiences discomfort from not being able to move on her own. She is slowly losing her appetite. So, I'm hoping those of you who have had experience with palliative care can help me. Will palliative care be able to make her more comfortable or is their main focus to prescribe pain killers?
Thank you for all the links you provided for me. I truly appreciate it.
Blessings.
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.
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
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.
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.
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.
Pain, especially pain at the end of life, needs to be addressed on many levels.
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.
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.
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.
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.
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.
https://www.agingcare.com/questions/can-palliative-care-be-requested-if-a-patient-is-living-in-a-skilled-nursing-home-439287.htm
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.