How do I find a hospice group that will work well for my mom and family?

This is an old thread - previous posts ceased in May.

A year ago tomorrow, my dad was put on hospice recommended through Kaiser. A nurse tried and failed to put in a foley, causing my surgeon sister to have to do it. After that, my dad kicked out the aides he had agreed to one day earlier, and my 87 yo mom did not sleep for three days until my sister prescribed benzodiazepine. We were all staying for relief but the fact is mom wasn’t gonna sleep even with sleeping meds much.

So my other sister found a hospice with an attached hospice home. If my dad had survived the seven days, the plan was to keep him there at 20k a month or whatever until he passed on his own. Thats the one thing I suggest you have on board, an actual hospice home.

I have heard that non-profit hospice organizations tend to provide better care. Does anyone have any experience with profit vs non-profit hospice?

Palliative care is more of a "mode" of care than an organization or entity. Whatever insurance coverage you have will cover palliative care, just as they cover all other care, but you will have a different MD or MD group, and treatment will be different. In Palliative care you generally have more access to better drugs as the goal is no longer to avoid addiction but to relieve pain. It is expected that you will not any longer do a whole lot of heroic measures tho you still can treat illnesses. It is more of a "philosophy of care" than a company providing care. It is a new specialty for doctors.

Hospice on the other hand is now companies that hire medical professionals dedicated to end of life care. Your doctor will usually recommend a hospice organization at your request when end of life is expected within six months. Medications are freely given. No more diagnostic testing and treatment is done. Comfort is the goal.
Hospice used to be a mission. Now it has moved into the military industrial complex where it is the honey of hedgefunds and is very profitable. It is paid for by medicare and WELL paid. For that they have honed it down to two or three bedbaths weekly, one visit from RN weekly and a call from clergy and social worker. To me it is a pittance of what it was once. Sadly.

I am told there are still a few good ones out there.
Your MD will recommend some. I don't know if they do get paid for the one you choose but I do know there are "partnerships" with some nursing homes and ALF/MCs that "recommend" a particular agency. That is to say "kickback". I would interview all in your area and see exactly what they provide.
They DO provide good equipment usually as that, too, is a partnership in getting money in.
I haven't seen them, lately, but this remnant of a great mission is the best we have left. A year ago last December my friend passed with a HORRID hospice in which the social worker didn't know the first thing and the care was absolutely minimal. There was, however that magic morphine bottle and that was crucial for her.

I will tell you to be the squeaky wheel. Tell those SW and clergy you want a VISIT. Make the RN do something other than sit at the bedside for an hour. Demand everything you can get. I hope you find a good one.

You first need to know what Hospice in home is. Family does most of the care. Make sure when they come to evaluate you have someone there. We all tend to miss things being explained a second set of ears is good. Having a list of questions is good too. You should get a folder explaining everything. The nurse will come 1x a week but she is on call 24/7. The aide, usually comes 2x a week to bathe and dress. It maybe an hour but an OP on this forum got 4 hrs. Get as many as u can so u can run errands and just have time to yourself.

Remember Hospice is end of life. Death is imminent. Your LO will be taken off any life sustaining medication. Morphine will be used for pain and to ease breathing. Medication for anxiety. Family will be taught how to use the medications. When actively dying, the person has a problem swallowing, and the body shuts down. Meaning no food or water can be given. It does more harm than good. The medications help with keeping the person comfortable. The nurse should be coming more often.

Medicare pays for Hospice and there is criteria every Hospice has to abide by. But like everything, Hospices differ. Could be how its run, the number of employees they have, etc. If you are not happy with a Hospice, u can fire them and hire another.

I would ask around.
Ask your doctor (the one treating your LO) I am sure they have heard good and bad.
If there is a Support Group near you or one you have attended ask the members of the group.

Interview several. Interview just as you would for any medical service. Look on Social Media for reviews. Keep in mind when people rate Hospice it may come from a very emotional state and ratings may be influenced by that.

Medicare.gov has ratings of Hospice you can compare there.

When you sign up with (xxxx) Hospice if you are not satisfied with what they are doing you can contact another Hospice and ask to be transferred. You do this just as you would if you were changing doctors.

Palliative care is different from hospice care first off. Palliative care just sends out a nurse once a month to just assess the person and to see how they're doing. They don't offer much else.
Whereas hospice will have a nurse come out once a week to start, aides to bathe your loved one at least twice a week, and they will supply all need equipment, supplies and medications, all covered 100% under your loved ones Medicare. You will also have access to their chaplain, social worker, and volunteers.
You must however know that even with hospice on board, they only do about 1% of the care needed for your loved one, so 99% of their care will still fall on you, other family members or hired help.
And you can either ask friends or neighbors which hospice agency they used, or Google to check out the reviews of the hospice agencies in your area. They are not all created equal, and some are better than others.
And also know that if your mom signs on with an agency and she or you for any reason are not satisfied with them, you can "fire" that agency and go with another. People do that all the time.

First of all, your mom has to qualify for hospice.

My mother’s home health nurse once said to me that it is a good idea to start looking into hospice providers sooner rather than later.

I feel this is good advice. It is helpful to know which providers will suit your needs, rather than hastily choosing a provider that you may not be satisfied with.

Please do thorough research before selecting a provider. They don’t all provide the same services.

Ask them what services are offered and then ask questions about any concerns that you have.

We chose a hospice provider that provided an end of life care home. They were excellent!

Wonderful fundraisers are held and the organization treats their staff very well. So, the staff was never shorthanded and they were content with their jobs.

My mother was at peace and kept comfortable until the very end of her life.

Not all organizations have an end of life care home. If you have this in your area, I highly recommend it. My mother had 24/7 care by a professional staff.

They also provide a social worker for the patient and their family. Clergy is available if you are interested.

Another thing to remember is that if you are not satisfied with your provider, you can switch to another one.

Don’t continue using a subpar provider. Your mom won’t be well served and you will have additional stress.

I attended an end of life seminar which I found to be insightful. It helped to calm my anxiety about knowing what to do when my mother was dying.

A while back, I saw a death doula posting on this forum. I found her work very interesting and informative.

You might want to see if there is a death doula in your area and make an appointment with her to gather general information.

Ask friends, neighbors, etc. who they have used and if they were happy. If they tell you that they were not satisfied and why, scratch them off your list. Read reviews.

Sometimes, hospice providers are sold to other organizations and they keep the same name.

I feel that this could be misleading in a way. The new corporation can make changes in their policies that you may not like. So ask questions about ownership.

My friend was caring for her younger sister in her home with a faith based hospice organization.

The church needed funds due to having multiple lawsuits, so they sold the hospice organization to a private corporation.

My friend became close with the hospice social worker and the social worker told her about the sale. Otherwise, she would have never known.

We all know that healthcare is a huge business nowadays.

We did not choose the provider that my friend used even though it was my mother’s faith. They didn’t provide an end of life care home.

I suggested to my friend to switch to the provider that we used so that she didn’t have to do the hands on care in her home anymore.

My friend wanted to continue with hers because of the clergy. I told her that all hospice providers had clergy.

Then she said that she really wanted her sister to die at home, so I dropped the subject. I respected her right to do whatever she felt was best.

Wishing you peace as you continue on your caregiving journey.

I’m sorry your palliative care group wasn’t helpful and I’m curious what promises they made. For my husband, they provided excellent in-home care every 3 to 4 weeks from a nurse practitioner and that was basically it, but it was what we needed and expected. I can understand your hesitancy to use the same agency for hospice.

You can always read reviews online, which is of course represents a minority of customers but it may give you some idea. I would ask around and talk to people you know who might have experience with hospices in your area. Above all, be sure you understand what they provide as it seems that some people expect way too much such as daily caregiving. Share your concerns with any hospice you interview and don’t hesitate to call them as they should have a 24 hour nurse on-call.

What are you wanting hospice to do for your mom, exactly? An RN comes by once a week to check her out, take vitals, review medications, ask if any changes need to be made, etc. A CNA comes by 2x a week to bathe mom, a social worker and chaplain stop by bi- monthly or so to see how you and the family are holding up, and that's about it. What sort of care is mom needing that hospice won't provide? What they do is pretty minimal. Their main goal is to provide comfort care and supplies at end of life. No more than a few hours a week is provided by hospice, and that means the lions share of caregiving falls on the family or the other hired caregivers.