Palliative Care & Hospice Care

Does anyone here have an experience with these? My family is nearing a need for these and are facing a decision on what to do.

I would be interested in any opinions, experiences or thoughts you may have on them.

Good hospice care is a blessing and even average hospice care is a relief. Especially 24 hour care for those that need it.

You might have to go through a couple of hospice agencies until you’re happy, and keep in mind that there are two kinds of hospice care givers, certified nurses or “helpers”, and that “helpers” are often very nice (and 95% women) but are not trained medical workers, which you may or may not require, but are also generally minimum wage workers or otherwise very low paid. This means, essentially, you’re getting whatever the LCD employee is in your area, which may be good, or may be horrifyingly bad; in our case, a couple of workers exhibited a jaded and curt demeanor toward their charge, which was disconcerting for the family during a stressful time, but understandable considering their position and job.

Also remember that hospice care can reach up to some significant expenses if the process is slow, or the quality of care you desire is high. I do think some of the cost is covered by Medicare, but i didn’t take care of that part of my Grandfather’s estate and haven’t subsequently seen what that percentage should be. Either way it’s worth investigating.

I’m a medical oncologist, I deal with palliative care and hospice all the time.

There is a distinction between the two, hospice care vs. palliative care, although this isn’t always important and sometimes trivial.

Hospice care generally requires a physician to place an order or make a referral on a patient’s behalf to a local hospice organization. In most towns there is often more than one, in large cities, there could be dozens. Generally, a patient cannot refer themselves to a hospice. Part of this referral includes some documentation from the physician that the expected life expectancy of the patient is less than six months.

Once enrolled in a hospice usually both outpatient and inpatient care is available depending on the patient’s needs. Outpatient care typically means a visiting nurse, sometimes visiting daily, to assist with care, bringing medications, etc. and updating the hospice doctor on the patient’s condition. If the patient’s needs surpass what can be provided for at home, then often an inpatient hospice resource is available – either admission to a hospital or some hospices have “hospice houses” which are akin to skilled nursing facilities often with much homier surroundings.

In either setting, the focus of hospice care is on symptom management. That is, a patient that is aggressively pursuing treatment is (with rare exceptions) not a hospice candidate. Typically, this means patients with aggressive diseases that aren’t responding to current treatments. The nurses that tend to work at a hospice fall into two types – brand new nurses that think working at hospice will be easier than working at a hospital, and dedicated worker bee nurses that are living saints. The latter dominate, fortunately.

Once a patient is enrolled in hospice, most patients usually have access to greater resources since hospices are reimbursed a little differently through Medicare. So, getting a hospital bed for example at no charge is usually a no-brainer. Same for additional nursing care at home, or someone to pick up needed medical supplies or someone to watch the patient for a few hours while the spouse/family runs a few errands. Those are just a few examples, but in general, once a patient enrolls in hospice a greater amount of resources become available to help the patient and his/her family with symptom management.

A particularly new and ugly development, in my opinion, is the arrival of “for-profit” hospices in the medical community. I will paint with a broad brush and say that these organizations should be shunned. I’ve had a few experiences with them and they have been uniformly bad.

If you aren’t sure if the hospice you are talking to is non-profit or not, ask someone who is working for them.

That’s just a broad overview. My experience is mainly with hospices in the midwest during my practice, so I suppose there could be some local variability if you are on one of the coasts. I’ll keep an eye on this thread.

My mother in law, who died of cancer, spent her last few weeks at Calvary Hospital in the Bronx, which specializes in hospice care; they were fabulous, very caring, extremely solicitous of the family, and well experienced in all aspects of end of life care. Because my mother in law was on SS and SSI, it wasn’t a financial burden either. But I’ve heard quite a variety of stories from people with varying experiences, so YMMV unfortunately.

Hospice care is just …wonderful.

For both sets of my grandparents, they made special allowances in their wills for the hospice care workers that were with them to the end, and asked that donations be made to the agencies in lieu of flowers and gifts at their funerals.

Likewise, when my grandmother passed away from cancer (stayed at my Aunt’s house for her remaining time) the non-profit hospice was wonderful. True angels.

Okay, this didn’t post from my phone (it probably will at, like, 2:00 AM or something), but I’ve seen several folks go through the hospice program out here. This includes both clients and personal acquaintances.

They are wonderful. Of course, these were all folks with terminal illnesses, but they got to live out their final days in comfort, attended to by a cheerful, caring staff who made sure they had whatever they needed. They had nice, homey, private rooms, with plenty of space for family and friends to visit. It was far nicer than languishing in a hospital bed.

One of our clients actually improved so well in hospice and gained so much strength that she left alive and got two more relatively good years at home.

Mostly, though, I’m struck by the kindness and compassion of the administrators and staffers. They’re wonderful people.

Hospice nurse when my mother died was as much care for us as her. She prepared us for everything that was going to happen, talked us through, and was generally an angel for us. All that while keeping mom as comfortable as possible. She taught us how to care for her ourselves too, so we weren’t just passive observers.

We are arranging to put my father into a local Hospice care facility today. We looked at putting him into the the VA Hospital, as they have a new hospice facility here that the head nurse at his current hospital was very happy with, but it was full.

Amazing fact of the day (per the doctor)…50% of senior citizens who break a hip are dead within 6 months. That stat goes up if dementia is involved. My dad didn’t have much dementia before he broke the hip but it was there after wards. We don’t know why, maybe we didn’t see it, maybe he had a small stroke or maybe he couldn’t handle the drugs they pumped into him.

I thank everyone for their comments. Geez, a whole thread with no snarkiness.

I was thinking of volunteering at a hospice…well just because. And then I came across this scathing news report. The agency I was planning on volunteering at is not affiliated with the one mentioned in the article but it is for-profit.

There are apparently only 3 non-profits and 30+ for-profit hospices in town. So I think I’ll just try out this volunteer with the for-profit to see if it is my kind of scene.

I had heard of “for profit” hospice care, and was warned against them. I don’t think we have one here but we might. The one we are putting my father into is non-profit. It does receive medicare money but it also does a good deal of fund raising. My nephew sadly enough used their Angel Babies help a couple years ago.

The hospice facility we are using reviews the medical records of it’s clients to determine that hospice care is the best option. I can’t imagine being “healthy” and spending my last years in a hospice surrounded by the soon to be dead. Having spent considerable time visiting my aunt (and then my father) in a convalescent home I can only say that is probably what these “for profit” places must be like.

This is strangely relevant.

My grandmother just died this morning at a hospice house in Phoenix, AZ.

We were there a few weeks ago when she was first admitted, and the staff and the care were both excellent. They looked after her (and us) when needed, left her (and us) alone when it wasn’t needed, and the place was clean, quiet, and respectful without being gloomy. It made the experience of saying goodbye to my grandma a lot easier, and it helped her be comfortable and free from pain in her final days. I’m going to make a donation on our family’s behalf and send them a card thanking them for everything.

Rest in peace, grandma. We miss you already.

Well, my dad died last night quietly in his sleep. He was 88. The hospice was much better than any of the alternatives.

I’m sorry for your loss. All the best from our family to yours.

Glad to hear the hospice was a good choice.

Condolences, Scuzz. Glad it was peaceful.

I’m very sorry for your loss.