What is the difference between palliative care and hospice?

Iris L.

I am asking a general question.

My 91 year old frail neighbor without dementia but with congestive heart failure was refused palliative care from the Palliative Care Clinic of her HMO. Instead she was told she could apply for hospice. This was after a telephone consultation, not an in-person evaluation.

I am wondering why a person would be refused palliative care? I was the one who suggested palliative care to her.

Iris

harshedbuzz

@Iris L.

That's a good question. I have limited experience with either. My friend's husband died over the summer with what was listed as respiratory failure on his death certificate (he also had a chest infection and CHF in the mix). In the last 48 hours of his life, they elected palliative care in the hospital. I suspect they were offered that because the hospital does have a substantial palliative care staff making the transition seamless.

I wonder if this is an insurance decision. All Medicaid programs including MAPs are required to pay for hospice services but not all private insurance will cover palliative care.

Palliative Care vs. Hospice: How Do They Differ? (healthline.com)

HB

M1

Iris, did she handle the telephone call by herself? It seems obvious that someone needs to come to her and do an in person evaluation. I take it she doesn't have a primary care or cardiology provider who knows her well? They could also facilitate this if they would.

Quilting brings calm

My step-dads hospital notes listed palliative care the last time he was in. I haven’t seen anything different in his treatment than before he was in the hospital. No pros, no cons. None of his family doctors even mention it.

As near as I can tell, all it means isthat he is 83 years old, has enough conditions that major surgery would be dangerous, and therefore isn’t recommended. He refused the possibility of a pacemaker. He complains about the number of doctors he has. Yet at the last doctor appointment, he wanted a full code ‘if whatever the issue is can be fixed’.

Jo C.

Dear Iris: This is really a rather concerning circumstance, BUT I think there may well be reasons this happened. After having read prior Posts re your neighbor; she is unable to be a good advocate for herself and is not a good communicator nor does she seem to understand the in's/out's for her HMO. There should be NO rejection of her wanting to have Palliative Care. Advantage Plans and HMOs MUST, by federal law provide ALL services that regular Medicare provides as a benefit. Medicare does cover both Palliative Care and Hospice as benefits.

Your friend really seems to need an advocate to speak up and support her with application through this as she does not appear to be capable of doing so in a manner which brings results she needs. An outpatient "Clinic" for Palliative Care is different from regular Palliative Care at home. Can you share what HMO coverage she has? Would it be Kaiser? If it is Kaiser, there are reasons why she may have been given a denial and did not understand.

For some reason, I do think this is Kaiser and so I took it from there to see what I could find. I think I found the reason she was denied service:

I decided to reach out to Kaiser (IF that is the insurance she has) . . . so I called them.

Kaiser has two types of Palliative Care: One is through an Outpatient Palliative Care Clinic as an outpatient; the other is Palliative Care provided in the home setting and this goes through Kaiser's Home Health Department. They are two different entities.

NOTE: To gain service in either one of these, your neighbor would need her PHYSICIAN TO ORDER this service for her. Supposedly, the order goes to Palliative Care, whichever type is chosen, from the physician's office. The patient does not call and ask for the services to be started herself; the doctor does this. She can ask for her MD to do this for her.

How do I know this? I called the Palliative Care Home Health line and spoke to a lovely office person who was very knowledgeable. (Phone number: (562) 622-4350. (Took some time to find the number. I used Kaiser Permanente; Downey, Calif., Pallative Care on Google and up it popped.) Differing Kaiser areas can function a bit differently.

The person I spoke with suggested that if your neighbor is not well and it is a taxing effort to get to outpatient services, or has difficulty getting transport or gets easily confused or does not communicate well, it would probably be best to receive Palliative Care at home where she would not have to go elsewhere considering her condition. That would work well and the RNs would also help her to coordinate care and all of her medical needs and may also be able to get her a little help at home whether meal on wheels, transportation, bathe aide needs, etc. They would of course monitor her well as her condition varies. They are in the same area as their Geriatric Services.

So there is the starting point; a physician's order. She should be able to get Palliative Services without difficulty once she has that physician's order made. I think I agree; she would be best served with having the services at home. Where she could probably need help until first seen would be to ensure the order was received by Palliative Care and what date the Kaiser nurse would first come to the home to assess and begin service.

Hope this helps IF she has Kaiser, but even if another HMO; it will also require a doctor's order just as it would in the open community

May this have a good outcome, let us know. You are a kind and caring neighbor; she is blessed to have your care and interest.

J.

Iris L.

Thank youn everyone who responded.

HB, the link was informative.

M1, she has both a PCP and a cardiologist.

Jo C, I followed your guidelines from the last time I posted. My neighbor has a close friend who had been taking her to her appointments. Here is what happened.

I suggested to the friend to try to get her an appointment at the Geriatric Clinic in Downey. She was told she had to be referred by her PCP.

She had a telephone appointment with the PCP. He wanted to see her in his office, she said she could not come. He said he couldn't do anything for her unless she came in for a visit. I spoke with the PCP on the telephone directly and said I was concerned about her persistent dyspnea and pitting edema. She had been prescribed furosemide but refused to take it because it made her void too much (10 mg dosage). The PCP insisted that she continue the diuretic, and I relayed this to my neighbor. She is hard of hearing and English is not her first language, so she has trouble getting all the information on the first go-round. I asked if a Visiting Nurse could be sent to her home, he said not until she was seen in his office. I told him it was hard for her to leave her home for medical visits. He said there was nothing he could do. I then asked about palliative care. He said he would send the phone number of the Palliative Care clinic to her friend. At no time did he say he would put in an order for Palliative Care or Home Health!

After the friend got the elephone number by text, she made an appointment to visit the Palliative Care Clinic in Harbor City. I agreed to come along to help, because my neighbor is a fall risk and really needs to travel by wheelchair, but she does not have one. She has a walker. At the last minute, she canceled. But they had a telephone visit, and that is when hospice care was suggested. I was not present for this telephone call.

The friend is not a relative. She is helping my neighbor out of the goodness of her heart. She is trying hard, but she seems to be unable to overcome the run-around that these people are putting her through. I am less than impressed with the PCP.

I am at a loss. I would have insisted on some attention from her health plan. She is frail, dyspneic from congestive heart failure, in pain from arthritis, with low vision from macular degeneration and poor hearing, and she has had several falls requiring EMT visit to stand her up, and she eats poorly. After the last fall and EMT rescue, I told her she has to make some decisions for the event that she hits her head or has a fracture. Thus the telephone calls. But there have been no decisions made.

To summarize, my neighbor has an advocate, but the advocate is getting the runaround about Palliative Care at the HMO that you correctly surmise, Jo C. I will give her the telephone number you have referenced above. I will also tell her she has to get the PCP to make a referral. I will help if she asks me, because I won't take no for an answer.

P.S. I am not impressed at all with this HMO.

Thank you again for going out of your way for the phone number and the phone call!

Iris

Jo C.

Iris; I am on it . . . that HMO is like a HUGE land of what do I do now? So big and communication between departments and a one stop shop to help patients not readily available. If one knows how to work the system, not too hard; but if one does NOT know how to work the complex system it can be a doozy. I do not have that insurance, but some friends do and they are able to learn to use the system.

She could probably use a Case Manager; and I am going to breach the citadel to get ahold of the MSW Social Services Dept. which is NOT easy - but I will do it to get direction. May take me a little while unto later this afternoon.

Basically, she will probably need to see her PCP to get a referral AND it MUST be for at home Palliative Care - she is NOT a good candidate for the OP Clinic for Palliative Care.

She should get her services through the Downey Kaiser Permanente, not South Bay as that is too far for her with more difficulty in transportation, etc.

She DOES go to the Downey Hospital as well as the Downey affiiliated clinics and not South Bay or Baldwin Park?

She will need someone to be with her to help her over the hurdles AND if someone could be with her just during her next PCP visit/exam, then one can advocate and speak up for her to get the local services she needs AT HER OWN HOME. ALSO: she would be best served by having a HIPPA Waiver as well as any other documents permitting someone to speak for her. Wonder if she would be willing to do that.

Once all is in place and she is in Geriatric Svcs and Palliative Care, she will in all probability have a Case Manager and it will all be so much easier IF she will accept it and let it be so.

J.

Iris L.

Jo C, unfortunately, one of the aspects of caregiving is to be prepared for a crisis to occur, when the patient is resistant. My neighbor is not seeking home care, no, in fact, I am the one who is seeking home care for her! I am seeking an alternative way for her to receive medical care, because I am concerned about her dyspnea. She actually is not too concerned about her dyspnea.

I appreciate the telephone number and the guidance. I will be able to relay this to her friend when she come over next weekend. That is all I can do. I understand that she needs to be seen by her doctor or by some doctor, but she is resistant to leaving her home for an appointment. I have already explained to her that the next time she falls and has a concussion or a fracture, her decision-making will be taken from her. It would be better to get supportive services in place now. I can provide information, but I cannot make her use it.

Thank you again for the telephone number. This afternoon I took Simon over to visit her, she was happy to see him.

Iris

Jo C.

Trying to get a better phone contact number and it was a wash today. Got to Member Svcs which used to help Members with issues now is only for costs and insurance issues.

Got to a person on that number who put me on hold to use a directory to find the right department for me and finally gave me a number . . . Only problem is it was NOT in Kaiser whatsoever. It was an outside company with nothing to do with Kaiser.

I can try tomorrow to get a better number . . . . but if the neighbor will not cooperate, then nothing can be done until . . . . something happens.

By the way, what is the primary language of your neighbor?

J.

Iris L.

They are from Romania. She was a French literature professor and he was an opera singer. They got fed up with communism and emigrated to America!

Iris

Jo C.

Iris - I finally got the number you really need to help your neighbor!

Before starting, you will need your neighbor's Kaiser Member Number.

NOTE: Here is the phone number you need: It is for Downey Hospital Area Social Services Dept.

Call: (562) 657-8590.

You may have to leave a message as I did, but they called me back within about three minutes. If they are not the correct Social Services Dept., they can give you the number for the correct one as long as you can provide your friend's Kaiser Member Number. It will depend on your friend's Kaiser Member number as well as which clinic she attends which her Member number will show so she can be assigned properly to the correct Social Services team of LCSWs.

Note: The ENTIRE ability to help appropriately is based upon knowing what your neighbor's Kaiser Member Number is; hopefully she will provide it.

Please get that number which she should have on a card, and the ball will begin to roll in the right direction. They will then know what area, departments and clinic she is affiliated with as Social Services has different multiple offices depending. They will also then know her doctor's name.

Social Services can assess and can even effectively get her in the situation she needs to be in and can assist in getting her assigned to the Geriatric Department if she is not already with them, AND also assist with AT HOME Palliative Care. She will then be assigned a primary Case Worker.

Sometimes Social Workers can even make a home visit, but it depends.

I told them I did not know this person but was trying to assist with getting their patient through the Kaiser complexities, I told them:

The patient is elderly; is alert and oriented, that she has severe CHF as well as severe Arthritis; that she is wheel chair dependent when out of the house and barely competent with a walker inside the house. She does NOT want to be in facility care; she needs to be assigned to the Geriatric Department as well as wanting AT HOME Palliative Care. I also told the person I spoke to that the patient spoke English but had a strong Romanian accent and did not appear to have family or others to help on a regular basis. I related communications were not always easy or clear for her and she was not able to work through the complexities of the Kaiser system; she has no one to assist in the home, but had a friend who tries to do what she can with occasional modest assistance.

(Frankly; I did not say this, but I think that if it has not already been done, the patient may benefit from screening for changes in cognition either secondary to early stage dementia OR due to medication effect or perhaps even secondary to a mental health issue.)

I explained about the primary care MD not being willing to refer her to appropriate Palliative Care, (which would be in the home and NOT an outpatient clinic), unless the patient would come in for an in-person MD appointment. I did not relate she was not willing to do that; I simply related it was a severe taxing effort for her to do that due to her condition.

There are a lot of services your neighbor can be plugged into when she gets her own assigned Social Worker, so please do wheedle your neighbor's Kaiser Member Number from her and use it when calling the Social Service Department at the above number.

I also wonder if the neighbor would be willing to have a physician appt. IF someone would drive her and attend it with her. That may be a difference for her.

So hope this will be helpful and that all comes together to make the quality of life better. As said, you are a very dear and caring person, thank you for helping this unfortunate lady.

J

Iris L.

Jo C, thank you for the Downey Social Services telephone number. I gave it to her friend, who is her advocate. She said she had spent a long time talking with the social worker in the Harbor City location. The friend has all of her paperwork, including her member number. She and I spoke a long time tonight, and we are thinking the same. We are concerned about getting her more medical attention and more help, but she is resistant. Actually, she is in a depressive state because she says she doesn't care what happens to her. She has been saying this since her husband died three years ago. Her PCP prescribed an antidepressant, which she is still taking. She is getting forgetful, but she is oriented and responds appropriately. She agrees to what we say, then changes her mind.

She is in that in-between state between not full dementia but not normal either. She made an appointment with her PCP scheduled but cancelled at the last minute. Her friend will not keep asking for time off from work only to be cancelled at the last minute. At the same time, I have my own health concerns. I spent a lot of time worrying about my cousin with her post-op knee surgery problems. She is doing well at home now. As you know, Simon has been ill. I need time to take care of myself. I'm not doing so well myself.

Iris

Iris L.

Today I got my neighbor to agree to a doctor visit. She is always complaining of not being able to breathe. She is concerned that she has to get dressed. I told her she can go in her bathrobe and a coat. I told her friend, and hopefully she will be able to schedule an appointment soon and we can overcome my neighbor's objections and keep her from canceling.

Iris