Palliative Care vs Hospice Care

Hope5757

Although I’ve research via the Internet and searched this site extensively, I’m still not clear on the difference between palliative and hospice.

If “who pays” and “chemo/radiation/targeted therapy/surgery” is removed from the equation - what are the primary differences between palliative and hospice?

In hospice, would at- home delivery by the hospice RN/PA of IV fluids, supplemental oxygen, anticoagulants, and antibiotics be permissible?

We know MIL’s cancer and dementia are terminal, but we absolutely believe in addressing infections and dehydration. We’d like to have IV fluids at home rather than another hospitalization for dehydration.

if she breaks a bone, we would want to assess the issue separately. We do NOT want to predetermine treatments unrelated to those aimed at curing cancer or slowing dementia progression.

We know neither program pays for 24/7 at home medical care and recognize we would be likely be responsible for actual dosing of medication. My spouse and I are both willing and able to change IV bags, inject SQ and monitor vitals.

M1

From what you are describing i think you are asking for more intervention than hospice typically provides. Probably more than palliative care provides too, frankly.

Rocky2

I am not a medical professional. There are others here that are and may have better or more detailed feedback. I do, however, have some experience with palliative care and hospice care. DW has EOAD and cancer. She has been in a memory care facility for about 9 months. DW has been in palliative care since her cancer diagnosis. It was explained to me at that time that palliative care was the "umbrella" for providing a spectrum of care for people living with a serious illness, such as cancer or heart failure. Patients in palliative care may receive medical care for their symptoms, or palliative care, along with treatment intended to cure their serious illness. Hospice care is a subgroup of care under the palliative care umbrella. Some important differences are that under hospice the patient cannot receive any treatment aimed at curing a medical condition (such as my DW's cancer). Curative medical procedures are allowed under the more general palliative care category. Another thing is that hospice pays for many medical needs such as pain medications, hospice RN visits, chaplain services, social worker visits, inconvenience supplies and medical devices/appliances like walkers, hospital beds, etc.

As I said, I am not a medical professional. But I hope this helps.

Tom

Jeanne C.

My husband is currently under hospice care. It's comfort care. That includes antibiotics for infections like UTIs (to keep him comfortable) and meds for pain and agitation. It was explained to me that when he stops taking food and eventually drink, that's a shift into active dying. To me, it seems kinder to let that happen than prolong things. And, frankly, he indicated no measures like artificially administered nutrition or hydration were to be done in his advance directive. It's a hard thing to do and you need to make the decision you're comfortable with and that your mother-in-law would want.

That being said, palliative care can happen while still going through curative treatment. I found this simple chart that explains the basics. All the best to you and your family.

harshedbuzz

It doesn't sound as though you are ready to embrace for the realities of end-of-life care which is comfort-focused rather than treatment oriented. Some of the things you'd want— supplemental O2 and antibiotics (because treating infection relieves pain/distress) are considered comfort treatments under many circumstances. At this point, medications to treat or prevent conditions are withdrawn— FWIW, we dropped all of dad's cardiac meds (BP and statin) in the palliative stage. Dad died hours before his hospice evaluation which means family got no services from which mom would have benefited.

A fracture complicates things, but it is possible to come of hospice for treatment and then re-establish the service later.

Hydration is likely the dealbreaker. If a PWD is late stage and refusing fluids by mouth, there is a possibility that their body has shut down to a point where it can no longer effectively process them. As my MIL was dying, my husband's younger brother wanted mom to have an IV but the older who was an ER doc and POA explained that fluids given would likely collect in her chest cavity and essentially drown her.

Wishing you peace with whatever road you take. This is difficult stuff.

HB

Hope5757

Thank you to everyone for patiently responding to my often similar questions. It must feel like Groundhog Day.

The combination of dementia and cancer significantly complicates end of life planning. She’s far enough along in dementia in that her executive function is almost completely gone. She’s unable to fully understand that drinking water is the best non-medical way to help her kidney functions. And she doesn’t retain the instruction to drink.

What I finally realized during these last hospitalizations is that her recent worsening conditions are due to hypoxia and dehydration. When given supplemental oxygen and IV fluids, she’s largely back to baseline which is early stage 5.

Supplemental oxygen keeps her SpO2 above 95%. 2 days of IV fluids brought her GFR to above 60 and all her other labs and vitals are normal. She’s eating well, continent and aware.

So, now the struggle is to keep her hydrated. If neither hospice nor palliative care can help with at-home IV fluids, then I have to figure out how to keep her hydrated. Constant urging? At some point, we’ll all be exhausted, agitated and resentful. Not to mention it’s ineffective. I’ve ordered Jelly Drops as an experiment.

https://www.jellydrops.us

We are meeting with the supportive care specialist soon so will be able to discuss these issues in person.

Thanks to everyone for helping me navigate this ridiculously complex situation. My research taught me that these for-profit hospice agencies are the most profitable Medicare provider now. They receive $200.00/day. We caregivers are so grateful for any help, we think 2 or 3 visits a week, with 24/7 on-call medical help is enough.

It’s not.

$200/day is $6,000 a month. This is almost MC money for a situation where family is still handling 80% (or more) of all physical work.

harshedbuzz

I hesitate to mention this, but in my town there are at least 4 IV hydration providers operating as wellness consultants. A basic hydration infusion is about $85. It might be a backup for those times when you are unable to maintain hydration levels at home if you wish to avoid the ER.

Hope5757

Thank you VERY much @harshedbuzz. This is incredibly helpful as I didn’t know this option existed.

I’m astounded…. a quick google search shows hydration therapy is part of the home infusion service offered by the hospital system to which MIL’s doctors belong. And where MIL has been hospitalized three times in 5 weeks.

harshedbuzz

Would her PCP prescribe if for her?

jfkoc

Only an opinion…I think you will get better "medical care" using the pallative model.

Hope5757

Thank you @jfkoc- We have an appointment with a doctor specializing in palliative/hospice. Unfortunately, the earliest available was mid June.

In the meantime, I’ve come to realize that making myself responsible for ensuring she isn’t dehydrated is an impossible task. For the last 3 days, I’ve worked myself into a frenzy trying to get 60-70 ounces of fluids in her. It wasn’t happening and we were beginning to hate each other.

I will make sure she has cold water always available and I will regularly remind her to drink. But, I can’t make her drink. Maybe this is the first step to acceptance.

@harshedbuzz - her PCP might prescribe but from our last conversations, she clearly believes we are beyond her ability to help and should be with palliative/hospice.

I think I’ve given up. I’m so tired I can’t see straight. She’s now incontinent overnight.

fmb

It would not hurt to get a hospice evaluation at this point in time as opposed to waiting for the palliative care/hospice specialist appt. in mid June. You can contact the hospice agency directly without a referral, and they are normally very quick to respond. When they visit for the evaluation, you can learn exactly what comfort care measures they will provide. You do not have to contract with them if you do not think they will meet her needs. If you do contract with them and are dissatisfied, you can remove her from hospice care.

I will say that hospice has been a godsend for my DH and me the past 5-1/2 mos. He currently has a suspected UTI and is on an antibiotic. We have already discussed the use of supplemental oxygen when his congestive heart failure progress to where his oxygen level is too low. Just today the nurse and I discussed introducing a diuretic to relieve the extreme swelling in his lower body. All of these are considered comfort measures.

Praying that you get some badly needed rest.

towhee

Please do get some rest, and no, you cannot make her drink. I also know that it is hard to give up trying.

A suggestion- We get a lot of our liquid in food. So if you increase water heavy vegetables and steam or boil them instead of roasting or baking that will help. Someone not long ago had some good recipes for smoothies. Fruit is good, just not too much because you do not want diarrhea. The jelly drops are a good idea, and popsicles are often suggested here. Is she on a special diet for her kidney disease? If not, while water is best, she might be more likely to drink water with fruit juice added, or caffeine free tea. I used to use various juice water mixes with some seltzer added and just ask "Could you taste this, if you like it, it is on sale, I'll buy some more". And just repeat thoughout the day. Sometimes she would drink more than a sip, sometimes not, but without the pressure it was better for both of us.

harshedbuzz

@Hope5757 said:

"In the meantime, I’ve come to realize that making myself responsible for ensuring she isn’t dehydrated is an impossible task. For the last 3 days, I’ve worked myself into a frenzy trying to get 60-70 ounces of fluids in her. It wasn’t happening and we were beginning to hate each other.

I will make sure she has cold water always available and I will regularly remind her to drink. But I can’t make her drink. Maybe this is the first step to acceptance."

That is a lofty goal. And it may be unattainable for a number of reasons. If she still somewhat with it at times, she may be restricting fluids to avoid trips to the bathroom related to discomfort moving or even apathetic inertia. If she's further along, and her brain is not recognizing thirst this could easily become a battle of wills that eats at quality of life for you both.

Cobbling onto what towhee suggested, we're coming into the time of year when fruits are more plentiful— strawberries, melons and stone fruits are pretty good sources of water. Flavoring water might make it more appealing to her.

Dad fought hydration strategies. For him I believe it was a combination of not wanting to walk to the bathroom (their living room and kitchen are quite a hike to a toilet) as well as being one of the few areas in which he had an opportunity to show mom she wasn't the boss of him.

One thing that did work was turning hydration into a pleasant break by sharing it with him. Bringing him a decaf tea and a cookie and having the same with him often overcame his need to fight mom on this. Perhaps you could do "elevenses", "tea time" and have your DH do a "mocktail" with her before dinner.

HB

Hope5757

Thank you @towhee and @harshedbuzz -

She does enjoy fruit - berries in particular. Unfortunately, she doesn’t like melons. And she does indeed despise going to the bathroom. It’s not far but every step is an effort. And due to urine retention issues, voiding is usually a lengthy and somewhat stressful event.

She asked me today if everyone “got this way?”When I told her”no”, she surprised me with “Getting old sucks!” It does indeed.

I think the Jelly Drops are a great idea. Because they’re sugar free, there’s a distinct after taste. Maybe the company will market an alternate version with sugar. I’d welcome the calories TBH.

ButterflyWings

@Hope5757 someone may have said this, but watermelon is mostly water and she may like that.

Also, why cold water? My DH actually reacts negatively to the temperature of the container (mug or water bottle) - and sometimes rejects it. He says “That’s hot!”, when it feels icy, and I have to really work to get him to try it. Room temp is best here.

Can you purchase the 1/2 size water bottles and leave one in her reach at all times? (Loosen the cap). Also, maybe try adding a drop of food coloring to make it look flavorful and see if that interests her.

I don’t think my DH or I get the level of hydration you are targeting. IJS- you may have to relax your expectations, as hard as that is for us when we are trying to do our best for our loved ones.

Hope5757

Thank you @ButterflyWings

Unfortunately she doesn’t like melon fruits. I’ll try room temperature water but being from the South, she’s always preferred cold beverages. I just assumed she’d continue preferring cold water but you’re right, dementia changes things.

I’ve given up measuring intake. I just make sure she has fluids - Gatorade, water, juice - available at all times. And I have jelly drops available.

I think she was a bit afraid of cups and water bottles due to having dropped them frequently. Once I started using adult sipee cups, she seemed much more comfortable picking up the cup.