A loved one recently went over the cancer waterfall and I dove in after him, keeping his head above water long enough to say goodbye to everyone. It was an intense four weeks of caregiving – two in the hospital and two at home, in hospice.
I am sharing one segment of our story to get feedback on how I could have handled it better and to amplify the lessons learned.
Here we go:
My loved one, M., had a peaceful death at home, as he wished, but not without some drama behind the scenes.
When things went sideways I began taking notes. It is useful to be able to look back at what I or others did during a stressful time. Otherwise it becomes a blur.
Lesson: Take pictures, jot down notes, text or email a friend your impressions. Capture a “hot wash” of what went right and wrong immediately after an incident.
On the afternoon of the third Saturday of being home, I called the hospice agency hotline to let them know that my loved one had entered a new phase of dying and was in distress. I asked for advice about managing his pain. The dispatcher on the phone was dismissive of my concerns and refused my request to send a nurse. She said none were available.
Lesson: I did not write down the person’s name. I should have.
She talked me through how to pull a minimum dose of morphine into a plastic syringe and I was able to give it to my loved one without a problem. His relief was evident within minutes. He was able to smile, relax, and listen as I read to him (from Proust! M. was an intellectual to the end).
However, I realized that I had only one syringe and he would need a dose every 3 hours, all through the night. I called the hospice nurse on call again and again she was dismissive. She said I personally had to stay up all night and give my loved one the morphine, re-using that one syringe. There was nothing the hospice agency could do until Monday. No extra syringes. No help. She literally said, “You are on your own until Monday morning.”
I’m going to pause to let that sink in.
A hospice nurse dispatcher told me, a family caregiver, at 4pm on a Saturday afternoon that I was on my own until Monday morning. I was shocked. This was the opposite of my impression of hospice care. And, as I found out later from my friend Renée Berry and the experts she consulted, federal regulations require that clinical care is available 24×7. Death does not keep banker’s hours.
Lessons: Ask about weekend coverage before you book a hospice or home health aide agency. It’s my observation that weekends are difficult times for any agency or organization to staff effectively.
See also: Medicare Benefit Policy Manual (PDF); Hospice Conditions of Participation, as outlined in the State Operations Manual – Appendix M – Guidance to Surveyors: Hospice (PDF)
When I told the dispatcher that waiting until Monday doesn’t work for me and as a sole caregiver I need the help of aides I had hired to care for my loved one, she got short with me. The way the rest of the conversation went it was clear that she was judging me for hiring aides. I asked her to please help me solve this problem. Her only advice was to call his primary care doctor to ask for help getting additional syringes.
Lesson: Stand up for yourself. Ask for the help you need. Ignore those not in the arena with you.
Thankfully, the on-call clinician for my loved one’s primary care doctor was extremely sympathetic. She expressed surprise that the hospice agency wasn’t more helpful and immediately called the local drugstore to ask if they would give me some extra syringes. I walked to the store and picked them up from the very kind pharmacist who came right over with 2 syringes.
Lesson: When the hospice “comfort kit” arrives, check to see if it contains at least 3 syringes so people can set them up in advance. If it does not, the family should immediately request additional syringes.
As it turns out, my loved one died the next day. He had the peaceful death at home he wanted.
Before M.’s death, I understood hospice as an unalloyed good in the world. Now I’m peeling back layers and digging deeper, finding out that I’m not alone in feeling overwhelmed by the work of setting up a safe and comfortable home environment. Hospice can be a lucrative business, but much of the work is being done by unpaid caregivers like me or home health aides that the family hires.
To all those who have attended death at home or have expertise to share: What other lessons can be learned? What other resources can you share? Comments are open.
Featured images: Two views of a weeping beech tree in Mount Auburn Cemetery, by me.
Lisa Suennen says
Hi S, I had the exact same “can’t help til Monday” response when I tried to get hospice help for my dad. Decided to keep calling different places til one helped. It was ultimately the hospital that sent someone, but I was appalled by the bankers’ hours mentality, as I had believed, obviously incorrectly, that there were just angels in the wings waiting to be deployed to help. Apparently angels are busy on the weekends. Sending you love as you work through your grief. L
Susannah Fox says
I’m picturing you working the phone on your dad’s behalf like Athena reaching for arrows — zing, zing, zing! Sending love and healing right back at you, sister.
Linda Stotsky says
Susannah, so very sorry for your loss. It is almost unbelievable that we are still fighting this fight. You’ve been here before, though not in the exact circumstance. One day, your experience and your passion will fuel change (hopefully). In the meantime, thank you, for being an advocate for patients and for change. Sending hugs, Linda
Susannah Fox says
Thank you, Linda! Yes, this was not my first experience with hospice, either at home or at a skilled nursing facility, but it was the first time I was “first chair” (in the past I was an apprentice to a master caregiver, my mom). It was in watching my mom care for my grandparents, my cousin, my dad that I learned what to ask for — to fight for, if necessary. I also have the benefit of being part of our wide community of e-patients, clinicians, and other allies who have shared their experiences so that I had pattern recognition (and when things went sideways, pattern disruption recognition). Looking forward to continuing my work for change with new passion.
I’m sorry for the loss of your dear loved one and for the frustration and isolation in those final days. It takes a lot to navigate the waters of end of life care. I’ll share 2 perspectives here: one as a team member of a legacy community not for profit (NFP)hospice in Ohio ( my role is in community program development and not direct care) and the other as a daughter who’s father died in home hospice care in SC, with my elderly mother as the primary caregiver.
1. There is a lot of variation in mission statements and how hospices are staffed and run. Generally, larger, legacy, NFP hospices offer a broader net of services: after hours support nurses and team members, inpatient care centers, holistic care, robust volunteer services, etc. The modern hospice philosophy and CMS benefit (dating from the early 70’s) relies on the family as primary caregiver with support from hospice. This can be a heavy lift. The legacy hospice that I work for carries a caseload in the 600-700 range and much of the time provides exceptional support and service.
2. When my elderly dad was in decline in 2017-18 and had a couple of merry go rounds from home/ED/ hospital stay /skilled nursing (SNF)/home again, I gently persuaded my mother Hazel to consider home hospice care. He was signed up in Sept 2018 and died on Dec 24. He was up, around and alert and received friends and family until early December. The hospice was very small, for profit (FP) in coastal SC. The scant staff who came to their home during the week were pleasant and professional. As my dad declined, my elderly mother and adult disabled brother were the primary caregivers. My mother , as a retired nurse, didn’t let on to us how challenging his care was. I went to their home the last 2 weeks of his life to help out.
He was actively dying the weekend before Christmas and we experienced the same sense of isolation that you did and felt completely on our own as he was dying. There was a lone nurse on call for the entire hospice. She was compassionate but had nothing to offer but phone advice. Even with my experience in hospice and end of life , I was struck by how unsupported and alone we felt as he died.
There is much to be done to improve this aspect of health care.
Susannah Fox says
Barbara, I have read your comment twice and can only say that I’m going to need a few more minutes of meditation before I can even respond. Thank you. You captured how I felt: unsupported and alone.
Rajiv Mehta says
Hi Susannah, thanks for sharing those lessons, though I’m sorry that such lessons need to be shared. More importantly, I couldn’t blame anyone for forgetting such lessons during times of crisis. These situations are often overwhelming (emotionally, physically, logistically), too much for us to be at the top of our detail-oriented, project-management skills.
In Arthur Kleinman’s book “The Soul of Care”, in which he describes his experience in caring for his wife, there’s a sentence that I didn’t like: “… the bad times in caregiving accumulate fast as dementia deepens, ultimately reaching a level at which an untrained family caregiver is overmatched.” The books is fantastic, but I spoke with Arthur about this sentence, pointing out that the adjectives “untrained” and “family” were both unnecessary and misleading. Even the most highly trained professional (like Kleinman) can be overmatched. We need to accept that the situation asks too much of anybody, and not pretend it has anything to do with lack of training or preparation or attention. Arthur said he’d revise the sentence in the next edition.
I hope you’ll remember much more the amazing, loving support you provided M, than the specific items that were far from ideal.
Susannah Fox says
Thank you, Raj! I do recall the beautiful moments more often than the troubling ones. I am nearly 100% sure that M. was unaware of all the drama (and there was more than just this incident). That’s a blessing to me.
John Sharp says
This is exactly what I would not expect from a hospice provider.
Sorry you had to endure this but glad there was an empathetic clinician and pharmacist.
The deaths I have attended were in hospital with compassionate. Particularly remember a respiratory therapist who told us what to expect.
Susannah Fox says
“Look for the helpers” as Mister Rogers said.
When M. was in the hospital there was a physical therapist who was patient and particularly kind. M. spoke slowly and carefully and while some clinicians would barrel on with their questions, this therapist would respectfully wait and make sure she understood his answers. She was a helper.
S, thank you so much for sharing your story. I am preparing for a loved one who is likely to go over the waterfall in the midst of this crazy time. I will make sure to go back and read this as our time comes closer and hope that writing helps you as much as it helps all of us.
Susannah Fox says
If you have time, order:
A Beginner’s Guide to the End by BJ Miller, MD, and Shoshana Berger
And if you’re caring for an elder:
The Caregiver’s Encyclopedia by Muriel Gillick, MD
And if it helps, my goal every day was to:
1) Make sure M. felt safe and was safe.
2) Create an opportunity for delight — as simple as bringing in a sprig of basil from the garden, reading from a favorite book, or listening to a piece of music.
3) Create an opportunity for human connection — a call from a far-away loved one, a scheduled 30-minute-max visit from a neighbor or friend, reading aloud from a letter or email.
It helped me to focus and feel good about what I was doing when I achieved all three.
Chandler Marrs says
I wrote this a few weeks back about our experience with death, hospice and medical economics.
Susannah Fox says
Chandler, thank you for sharing this heartbreaking story about your father.
Here’s some peer-to-peer wisdom:
“…to everyone that is facing even the slightest possibility of a loved one facing death and needing end-of-life or hospice care, begin your research early and seek treatment in a hospital that understands the difference between prolonging life at all costs versus supporting end-of-life measures. There is a huge difference.”
I’m reminded of the conversations I had with two friends who were facing a “choice” between a rehab facility and hospice back in 2013 before I had direct experience with hospice care myself. I deliberately use scare quotes because in retrospect there was no choice. If the clinicians caring for their loved one had used plain language and made sure that my friends fully understood what was going to happen — their loved one was going to die — there would have been no shilly-shallying about getting her into a rehab facility.
In your case, Chandler, you knew what was going to happen. Your father had started on the path out of this world and you wanted to smooth it for him. And you did. You gave him an enormous gift by doing so.
ALEXANDRA ALBIN says
Ah Susannah. You always sum up the big picture and small details so humanly well. Increasingly I find the medical system, including Hospice, under extra-ordinary strain for so many reasons. I cannot say I am shocked…but it’s too bad. Weekends are the Worst for professional caregiving, the least qualified people are available. The external and internal forces are pushing everyone to their end and everyone is maxed out. I bet the person you spoke to is very underpaid. Not to say that she should have been more thoughtful, but it points to a larger issue. So,I am not surprised you faced a difficult situation with someone. When those situations happen, I try and use meta awareness from compassion training to remember those folks are just like me under a different kind of pressure and do not alway handle it well. But that still means you…YOU have to take charge, be kind (which I would suspect you are) and manage your operation as a caregiver and get the support you need…taking notes, names, and one thing in these cases I do, if I do not like the answer, I either hangup and call back (assuming you get someone else), or politely ask for a supervisor, or triage and move down the list of options. It doesn’t always work. But in the end, I find increasingly there are more and more workarounds that we, as individuals in the seat have to be prepared to rise to the occasion. It shouldn’t be like that but the business of healthcare is getting increasingly squeezed…and then there’s the Medicare hurdles…it’s all so messy and sad. I am glad in the end you had a good outcome, and that M was able to pass in a manner he wanted.
Susannah Fox says
It was a rookie mistake to ever leave M. alone on a weekend (as I did when he first became ill). Now I know: Weekends are one long witching hour. Thankfully I was there for the crucial last weekend.
Thank you also for the confidence in my kindness. I was, I think, polite, even when things got clownishly bad (during circumstances not covered in this post). Here’s what helped: I knew I had back-up. My mom (a master caregiver) lives nearby. A wonderful home health aide agency wove the net that caught M. and I. I have a wide network of friends in the medical & palliative care world who could answer my questions. Without those supports, I would have become feral quite quickly.
Barbara Fox says
Underpaid. Yes. It goes without saying that a vital part of improving any kind of home health care is raising wages so aides do not have to work two jobs to make ends meet. Some night shift home health aides work day shifts as well – probably for a different agency – and how can they stay awake all night?
Barbara Fox says
Consider the contrast between funeral homes and hospice organizations. Families often have long-standing relationships with funeral homes and the charges (I believe it was due to activism triggered by “The American Way of Death” ) are posted. Arrangements are often made (and known) in advance) so there is no last minute crisis. To get business, funeral homes MUST be staffed 24/7.
Let me affirm that, like funeral homes, most hospices are run by good-hearted, compassionate professionals who provide a needed service to the ailing and bereaved. But now that hospices are proliferating, no longer run only by religious institutions and nonprofits, they can be, like funeral homes, lucrative profit centers. They get paid whether or not the client is satisfied with the service. How do they get clients? It’s my observation that the array of hospices available in a particular area is not widely known, and hospices do not usually advertise to the general public. Because the hospice decision is usually made under pressure of time and extreme emotion, the patient’s family will likely take the recommendation of the physician or institution — which might even benefit from the referral. Does the hospice industry need a Jessica Mitford?
Susannah Fox says
SUCH a good point.
(Readers, this is my mom — master caregiver, spiritual guide, veteran journalist, supportive parent & grandparent, and all-around awesome person.)
Gary Wolf says
Thank you Susannah for chronicling our experience and drawing the lessons for us. Barbara Fox’s comment about the hospice industry needing a Jessica Mitford seems to be right on target. JoNel Aleccia and Melissa Bailey’s superb story for Kaiser Health news is an excellent start:
[‘No One Is Coming’: Hospice Patients Abandoned At Death’s Door] (https://khn.org/news/no-one-is-coming-hospice-patients-abandoned-at-deaths-door/)
Susannah Fox says
Wow. If I had read that KHN story before M. went over the waterfall I would have been much more on my guard, even intimidated to try to create hospice at home. Example after example of worst case scenario. Luckily our situation never got that bad.
This makes me think about whether it’s better to know or not know what you are getting into. I’m squarely in the “be prepared” camp but I recognize that other people are not. I’d be interested to hear from other people about their thoughts on this.
I am so sorry for your loss. I, too, had an awful experience with hospice when my father was dying. The one lesson I can share is that you should never choose a hospice service that has their own facilities if your goal is to keep your loved one at home. My father wanted to die at home. We chose a hospice that offered in-home care or care in one of their facilities. We made it clear from the start that we would be keeping my father in his home. My father only had hospice for several weeks, but during that time we were repeatedly pushed to place him in one of their facilities- and at times we were threatened with having him placed in one of their facilities (when I refused to give him the drugs the nurse insisted upon even though my father refused them). I am sure they could have made much more money off of my father by placing him in their facility. I never felt that the hospice workers my dad had really cared about him…it was more about the money. They ignored his wishes and the wishes of my family. My experience with hospice was so bad that I cannot imagine me calling hospice in for anyone else in my life ever again.
Susannah Fox says
Thank you, Ann. You raise a good research question: What percentage of people’s experiences are different when the hospice agency has a physical facility in addition to their home service? May your father’s memory be a blessing to you and all who knew him.
Sallly James says
Thank you for sharing what was intimate and emotional so others can benefit. I have had several experiences with hospice for family or friends. In every case, the expected security of advice and comfort was wanting. Your mother asked, do we need a Jessica Mitford for hospice? I think we do. But there is such a weight of “let it go” and “let’s not re-open those wounds” about the bad care. I don’t have an answer, but some prestigious institution of health or journalism needs to spend the money to investigate in a way that exposes or regulates.
Susannah Fox says
Sally, thank you, I write to process stress and grief, only sharing publicly when I think it could be useful to other people. As I’ve said before, peer-to-peer sharing of our health experiences and advice is a gift that can never be repaid — and now I’d add: Unless we share in return. I’m paying back all the people who have shared their death stories by sharing this bit of what we experienced.
This point you raise is important: the “weight of ‘let it go’ and ‘let’s not re-open those wounds'” about bad care. Often we are grateful to have gotten out of the situation and don’t want to look back at the trauma. Or our minds work on the memory, rubbing off the rough edges until it doesn’t seem so bad in retrospect. Or we are not sure we deserve to complain or critique. And so on. I’d love to hear other people’s perspectives on this.
Since this was not the first time that I’d felt physically stretched by the learning I was doing, either personally or professionally, I knew from past experience to take notes. Then I could go back in a calm moment and read the quotes, look at the pictures, and say to myself, “Yes, this really did happen that way.” It’s a powerful feeling.
Christine Simone says
Thank you for sharing this experience so others can understand what you went through. When I read stories like this, I am thankful for the opportunity to help people through situations just like this with getcaribou.com where we help people every day make informed decisions about care options, including hospice. People don’t know much about these types of services until they’re going through it for the first time. When making a decision about a provider it is important to know what type of support you will be receiving when the going gets tough. Again, thank you for sharing, and I am so sorry for your loss.
Dave deBronkart says
Perhaps your calling is to be that author, for hospice. You certainly have the brains, heart and spirit.
I hadn’t heard of “The American Way of Death” but the brief Wikipedia article https://en.wikipedia.org/wiki/The_American_Way_of_Death let me recall the traces of that change as it unfolded around me, at an age when I didn’t have deaths happening.
The problems people describe here are all too familiar in areas like home health aides, dialysis; it seems to be a pattern in any area where it’s possible to get paid by CMS: set up your lemonade stand and do whatever is required to submit a bill.
Does this happen outside the US?
Perhaps we’ll see some ethical funeral homes forming partnerships with ethical hospice, and word will spread. I’d love to hear from first-Barbara above how we can identify the truly committed services she describes.
Thank you for sharing your experiences. I am watching my best friend go through this caring for her husband with pancreatic cancer. How can the support network of friends and extended family help best during this time? What was most helpful to you as the primary caregiver?
Ann, you seem like such a caring friend…your friend is fortunate to have you! I am sure different caregivers might find different things helpful depending on their needs. For me as a caregiver, the most helpful thing was time away. My father needed 24/7 care and for me just getting away to go to my own home to crash or grab some dinner for 1-2 hours was heaven. The friends who relieved me just had to sit and watch TV with my father so the task was not too difficult. I also had a friend bring me dinner once which was also much appreciated as I was so exhausted.
I think the key here would be for you to offer specific things (ie. dinner, time away, etc.) instead of just saying, “Call me if you need something.” It seemed easier for me to accept the help when a friend said, “I am bringing you and your father dinner next weekend. What kind of dinner would you like and what day is best for you?” I had a few friends tell me to call if I needed anything, but I never called them because I wasn’t sure if what I asked them would be “too much” or something they would not want to do. Think about how you are willing to help and offer your friend THAT.
I will keep your friend and her husband in my prayers. God bless you for being a terrific friend!
Susannah Fox says
What a thoughtful question. I agree with what the other Ann wrote — to make specific offers of help. I’m deeply grateful to M’s neighbor who would text me whenever she was heading to the grocery store. I always needed something!
It was also incredibly nourishing to be seen and thanked. I often felt invisible as I moved through the grocery store or hardware store. I’m sure people thought my purchases were odd (who weeps as she loads her cart with every flavor of sorbet and popsicle? A caregiver trying to tempt her loved one to eat.) People who stopped a moment to notice me gave me such a boost. For example, the plumber who came to the house to fix a leaky sink turned to me as he left and said that he, also, had cared for his father and his uncle on home hospice and thanked me for what I was doing for M. This idea of seeing and thanking caregivers, btw, is the basis of the ARCHANGELS Look Love Lift campaign.
Send your friend a text every few days just to say hello, with a cute picture or GIF or whatever might bring a smile. It’s like a ping from another world. Do it at a time when, if she’s free, she can call you and you’re available to listen. Offer her your non-judgmental, best friend ear. That also was unbelievably important to me.
Lorraine Johnson says
Thanks for the terrific and insightful conversation on this “silent” topic–I learned a lot.
Erica Bersin says
My first direct experience with hospice (through VNS) was in October. My grandmother died of natural causes at 104-years old. But what ensued with hospice, based on what I’d read and heard previously, was anything less than comforting.
Day 1 (Friday)
The intake nurse arrived at the start of the day to assess my grandmother (she had not been awake for two days).
The intake nurse said “I didn’t expect her to be this far along and will mark the case as urgent.”
She urgently ordered oxygen to make my grandmother more comfortable. She told me that urgent delivery meant within two hours. Nine hours later I was still arguing with the medical device company to get the oxygen delivered.
She also told me that since my grandmother was in her last days that a nurse would be there 24/7 (in addition to her live in caregiver). I later found out this wouldn’t be the case.
An overnight nurse arrived to stay with my grandmother.
Day 2 (Saturday)
Given what the intake nurse told me about having 24/7 care until my grandmother died, we expected a day nurse to show up at 6:30a to replace the night nurse. Only the night nurse told us that’s not how it worked.
My parents stayed with my grandmother as I tracked down the NYC CEO of VNS.
Two people followed up with me to say, “that’s not how VNS hospice works, but based on what happened with the oxygen yesterday, we will track down a nurse that can be here tonite, but she will have to be assessed each day moving forward.”
They also told me that hospice isn’t about around the clock care or respite and that we also wouldn’t have been able to have her admitted to hospice at a facility because she wasn’t considered “critical.” What is end of life if not critical?
A nurse arrived later that day to stay overnight.
Day 3 (Sunday)
Since we couldn’t get a day nurse, based on what VNS told me the day prior, I had to show up to help the caregiver, and my parents were coming for the overnight shift.
I left at 3:30p when my parents arrived to relieve me.
I went home to figure out how to get my grandmother 24/7 care for however long she had left.
She died at 5:30p that evening.
The medical device company harassed us for two weeks to collect the oxygen tanks. I gave them dates & times when we would be available (while mourning and starting to clean out my grandmother’s apartment), and they ignored it.
I finally had to tell them if they didn’t come to pick up the equipment on X date, they could find it at the curb.
I got the idea to contact VNS to see if they could help, and they did sort it.
I don’t care what someone is dying from, hospice SHOULD be about providing around the clock care (which her insurance covered and we could have paid either way). I only chose VNS because I’d known about them for many years. I wonder if another company would have done better, but I doubt it. And apparently it’s also determined by the state you live in.
Lorraine Johnson says
Such an eye opener! What do you think you would have done in retrospect knowing what you know now?
Susannah Fox says
Erica, thank you for fighting for your grandmother and I’m sorry for your loss. So many themes and vignettes in your story resonate with me, particularly the mismatch between your expectations and what happened. In such a difficult time, in such an obscured corner of health care, we find ourselves wondering, Am I asking too much?
If a friend was heading into a similar situation, what advice would you give them?
kathy kastner says
It was a conference on ‘compassionate endings’ that I learned the reality of inconsistency in both hospice and palliative care: “If you’ve seen one, you’ve seen one….” Whenever hospice or palliative care are sought (as well they should be – in theory) this is how I caution: glad you’re going for the focus on comfort route still, I suggest that you expect few things to go as planned, that everyone contradicts everyone. that you will likely have to scramble. possibly more than once. there are times when you have to go with the flow. (and a couple of other ‘downer’ things). While this is discouraging to hear, I’ve found it at least helps put the frustration into (a wee bit of) perspective. As you pointed out, Most def: ‘get a name’ and ‘get extra supplies.’ I also suggest doing exactly what you said, Susannah: bring a bit of joy, it’ll do both of you good. I have such hope for an improved future for hospice and palliative care, and with it enforced standards like @rfberry said. Until then, I poor pity those reading your Hospice Survey Assessment.
Susannah Fox says
Thank you, Kathy, as always for your wisdom and encouragement! Would that I could get one of your famous hugs right now.
Dave deBronkart says
I want to add some things I’ve learned in the years since you posted this.
First, it should be noted on this post that in 2022 Pro Publica and The New Yorker did an extensive investigative report on the for-profit hospice industry: “How hospice became a for-profit hustle.” In short, after Federal reimbursement became available, some predators moved in and are methodically (and heartlessly) milking the system. https://www.newyorker.com/magazine/2022/12/05/how-hospice-became-a-for-profit-hustle
I blogged about it, pointing particularly to the “organized crime” factor (okay, organized *business*) underlying the report. My headline quoted a savvy friend: “For-profit hospice is a vast crime scene, and private equity is holding the knife” https://www.epatientdave.com/2022/12/31/for-profit-hospice-is-a-vast-crime-scene-and-private-equity-is-holding-the-knife/
I also want to capture here a relative minor but fully heartless anecdote that matches your experience; this one was my mother’s death in October. When her decline accelerated suddenly we called the for-profit hospice agency we’d connected with in advance, and we got a response similar to yours: basically, “No, we’ll tell YOU what you can have.” Specifically, “We’ll get to you in a few days.” (This was on a weekday, not weekend.)
Very fortunately my local sister had other connections and got quick response from a wonderful not-for-profit. Our mother had the peaceful death at home that she’d wanted.
However good the origins of hospice, and however good some providers are, it seems to me that this industry needs regulation. We need a way to stop these ghoulish money traders from succeeding at NOT providing care, yet receiving full reimbursement. And we need to find some way to honor and publicize the ones who still hew to their mission.