Please help me navigate hospice/palliative care in NYC
January 27, 2018 4:56 PM   Subscribe

My father is terminally ill. He no longer wishes to live and after I explained and discussed it with him he wishes to receive hospice care. Please give me advice as to how to start bringing this about. Details inside.

My father: in his 70s, stage IV colorectal cancer diagnosed two years ago, received chemo and surgery but is currently on a markedly downward slope. About a month ago he had been receiving biweekly chemo to stall the progression of the cancers, but the past month he was hospitalized and recovering from a serious infection that left him unable to receive chemotherapy. He's emaciated, has little appetite, is almost completely bedridden, and in more or less constant pain, discomfort, and exhaustion. Has a colostomy and bilateral nephrostomy that require a large amount of care and attention. He is mostly lucid, though he has times where he forgets major facts of his life (his nephrostomies, my brother being out of the country, etc.). He is on Medicaid, and does not qualify for Medicare.

He is currently living with my mid 50s mother and I and although he gets personal care services throughout the week, at night we are his only caretakers. I go to school full-time and am about to start a part-time job, and am in a committed relationship. She has work 2-4 days a week. We both have depression, with only me receiving professional help for it while she is low- (but not non-)functioning.

He recently came home from an approximately month-long stay at a nursing facility that followed his most recent hospitalization for a serious infection of his kidneys and nephrostomy sites. The facility was not the best or the worst; service was slow and infrequent, but he did receive continued medical care for his infection, regular meals, physical therapy (which he mostly declined), and the opportunity to socialize (ditto). He did not like the experience of an institutional setting, and would much rather be at home.

Last night I was taking care of his diaper and waste bags when I broached the subject of what he thought about and how he saw his medical situation. He told me that he was in a lot of pain and suffering a lot, and that honestly he didn't want to live any longer. He also expressed the opinion that he didn't think that the chemo was very useful. I explained to him that the chemo was effective, but that it would only be effective in slowing the progression of his disease. I also explained to him (again, we've had this conversation in the past) what palliative care was, and that it gave him the option to pass away with the pain more strongly medicated away and on his own terms. I also raised it as the option preferable to continuing to let his condition worsen until an emergency would necessitate an ER visit where they may or not be able to pull him through (but in the meantime would be stressful and painful as previous visits have been). He accepted this and decided that he wanted to go with palliative care.

Currently he is scheduled for follow-ups with his PCP, urologist, and oncologist to get them updated on his post-nursing home condition, and also to get an update from them on his general health, urological health, and the progression of his cancer.

Who do I reach out to, and how do I access hospice care services that my dad's Medicaid will cover? Do we have options with regards to services? The natural thing seems to be to get referrals from his doctors, but I could also reach out to social workers at the nursing home he was at as well as the senior center he used to go have lunch at. Are those viable options? What about at the hospital he was at? And about how long will everything take? Because of general lightweight denial I don't think either of my parents have actually gotten a prognosis from his doctors in a concrete number of months/weeks/days thing so I'm concerned about getting the hospice care in time.

I'm feeling very much like a fish out of water with these end-of-life things so any experiences you can add would be very useful. Also if I seem to be working from some incorrect assumptions/information please let me know.

We are Chinese from Hong Kong, so if you have any specifically culturally relevant resources or experiences to share that would be appreciated. He only speaks Cantonese Chinese. Information specific to NYC is particularly valuable, like which care services/hospice facilities to avoid or that are good.
posted by coolname to Health & Fitness (13 answers total) 3 users marked this as a favorite
IME hospice groups react very quickly and don't hold fast to the six months life expectancy requirement. You should definitely reach out to all those associated with his care team - social workers, docs, nursing home, etc. - for recommendations of hospice groups. And by all means check their online references and the like, but it's rare to come across a truly awful hospice. I don't know about Medicaid versus Medicare reimbursement, but the care team folks should be able to send you in the right direction. The clearer you can state your wants and needs, the better they will be able to help you.
posted by DrGail at 5:17 PM on January 27, 2018 [1 favorite]

I am so sorry you are dealing with this, it's super challenging. My mother received hospice care and passed away last year. Hospice is amazing, the people who do that work are generally good at working with people who are not at their best, I have rarely met people so kind and patient. I don't know specifically how this all works because my mother was able to do most of the setup and paperwork herself but here are some things that may be helpful.

1. Make sure you have the legal ability to make health decisions for your father. This is called a Healthcare Proxy and is usually just some paperwork. Your mom will have this by default if they are married but it might be good for you to also have this if your mom is not doing so hot. You'll want to ask him the basics about his wishes. My mother surprised us all by having a "do not transport" order she had recently added to her medical plan. Make sure you know what he wants in terms of nutrition/water/doctors/etc. New York has this page and they link to this page for families and caregivers.
2. His health insurance should be able to let you know what options are for hospice and what they will pay for. You should ask your father if he wants to live out his time at home or if he'd like to go to a hospice facility. My mother was adamant on going to a facility but people have different feelings about this. If he chooses to stay at home hospice care can include things like someone to come help him with personal care stuff, and assistive devices (they delivered a nice hospital bed to my mother's house so she could sleep downstairs). You might want to call an organization such as the Hospice and Palliative Care association might be a good way to start.
3. Think about if you have the ability to toss money at this problem. We were able to hire someone to be awake at night so we didn't have to be and it was worth it. Not an option for everyone but this is a thing that hospice generally doesn't do but can increase quality of life for family members.
4. One of the great things about palliative care is you could basically stop going to doctor's appointments and just stay home. Often there's still some time left so think about how to spend that, and ask your father if he's lucid for how he'd like to deal with visitors, callers, etc. The dying often get more introspective and don't care so much about outside things, so it may be up to you and your mom to be a filter between his outside life and his wishes.

What we found with my mom was that getting signed up with hospice was not a super lengthy process, but waiting for a bed in a facility took a while (I think it was a week but it seems like forever when someone is dying). Lastly, of course, make sure you are taking care of yourself to the best of your ability. It's really great you've been able to have these conversations with your father and it's a kindness to him to try to help him with his wishes. That's a big deal. Try to carve out some time for yourself and acknowledge that this is sort of lousy and terrible but that you will get through it. You'll be in my thoughts.
posted by jessamyn at 5:23 PM on January 27, 2018 [5 favorites]

I'm so sorry you're dealing with this.

Here is a site of resources from the state health department.
posted by praemunire at 6:17 PM on January 27, 2018 [1 favorite]

My father is in hospice from cancer, though a different type. We connected to hospice when he was diagnosed, which was when he was hospitalized. We had visits from hospice personnel and social workers. Since your dad is not hospitalized, I think your best option is to go through his primary care physician or oncologist or nephrologist, though I think his primary care physician would be most supportive. I have found that specialists are sometimes less willing to support hospice, though perhaps not experienced oncologists.

Hospice works by accepting in full the insurance payment, including any medications that are related to his terminal diagnosis. There are no additional costs to the patient. However, if he is not an in-patient he may not be able to get what I am calling custodial care, that is someone to sit with him while you sleep or go to school. Currently my dad gets 3 x weekly home health aids who help him shower, a nurse who comes twice weekly to check him and attend to his urinary catheter, which tends to have inconvenient leaks (not a nephrostomy tube. I'm a nurse, so I understand what you're talking about) and check his general condition. As he becomes weaker the nurse will come more frequently. He also has a chaplain every week or so, and a volunteer who comes to talk about whatever my dad wants to talk about. The volunteer has been as effective in helping my dad stay engaged as any other member of the team, and he and the chaplain have really helped him look outside of his situation. My dad and his wife have employed someone to stay with him several afternoons so his wife can safely leave the house, but that cost is not included in the hospice fee. If he needs to be hospitalized for serious pain (the kind that needs injected medications that can't be administered at home) he can be admitted at no additional cost to their in-patient unit. He can also go for what they call "respite care" of a defined number of days, if the family needed to leave town for some reason. When you do connect with a hospice, because your dad may have complicated medical needs it might be that he would be an in-patient, but you would have to ask about Cantonese speaking caregivers. It might be worth talking to a Cantonese social organization in your city to ask about this situation; surely your dad is one of many Cantonese speakers who needed hospice care, and they may have a great program to supplement hospice.

The hospice focuses on pain in a major way. One of the first things they did was deliver a "comfort pack" which has several oral medications. They spent considerable time instructing my dad's wife on how and when to administer medications including oral morphine, a med to dry up secretions if he has trouble swallowing his saliva, and several other meds that are geared only for comfort. My father was referred "early" to hospice, so he probably has at least a month before he faces death, but the hospice staff emphasized that they would never terminate services, and that if he were to survive longer they would reauthorize it and there would be no missed services.

Because your family has the special cultural and language need for Cantonese speakers, and hopefully for a hospice that is familiar with your culture, I would specifically ask both his primary care physician - I am guessing that his doctor speaks Cantonese? - and I would also call the senior center where he is known. I am assuming they are also Cantonese speakers? Ask especially for a social worker to help you. Many centers like this have social workers that are familiar with all kinds of resources that will be suitable for your father. Reach out for resources because they are there! The hospice nurses I know say the most striking and sad aspect of hospice care is that most patients are referred far too late to really help the patient and family.
Also, the hospice chaplain and volunteer services are available to families, who can often really benefit from those services.

In Philadelphia there are several hospice agencies to choose among. In New York there are hospices affiliated with all the teaching hospitals and probably VNA (Visiting Nurses Association) as well. They are competing for your dad's insurance payment, even Medicaid. In your situation language and culture is important, probably as important as medical care. I would ask first his doctor and the Cantonese Chinese cultural associations he already is familiar with and go from there.

Feel free to PM me if you think I might be of any additional help. Good luck. I'm right there with you.
posted by citygirl at 7:24 PM on January 27, 2018 [11 favorites]

My mom was a social worker for the Visiting Nurse Service of New York before she retired. I believe they will have people with the cultural competency to help your parents, and I know they serve patients at all income levels. Their website is (I’m on mobile).

Also I’m so sorry for your dad’s health troubles as well as for your impending loss. Wishing peace for you all.
posted by chesty_a_arthur at 8:05 PM on January 27, 2018 [1 favorite]

You can definitely ask for referrals from his doctors or hospital/nursing home social workers. You can also just google/call around to local hospices. My experience with hospice is that they will happily walk you through the whole process, tell you and him exactly what to expect, and answer all of everyone’s questions. (If any hospice services don’t do that, don’t go with them!) They should be extremely accessible and on-call 24/7 to your father, mother, and you.

My father-in-law recently passed away after deciding to go into home hospice care. The hospice service was easier and more helpful than any other care service during his long preceding illness. Helping someone as they die is not easy no matter what, but hospice helped us do absolutely everything possible to minimize his suffering. They provided a box of meds that can be administered at home, including morphine and sedatives; they didn’t clamp down on drugs that “might be addictive.” (They do have protocols in place to handle a situation where someone else in the home might steal drugs, but it doesn’t sound like that’s an issue for you.) The purpose is to do whatever is needed to control pain and anxiety.

And importantly, they provided emotional support to the family as well as to him, with a social worker who visited and was on-call. That’s important when you’re dealing with all the complicated emotions involved in having been caregivers for a long time and also facing end-of-life things.
posted by snowmentality at 3:53 AM on January 28, 2018 [2 favorites]

I don't know whether you've seen this yet. There are several listings for Asian hospices, including one affiliated with Mt. Sinai on 16th St. Visiting Nurse of NY is located on Mott Street and likely employs Cantonese-speaking RNs. Bilingual hospice RNs are highly sought after by these agencies (my best friend works for Visiting Nurse of NJ).

Your father needs to be referred by his doctor. From there, a hospice nurse will come to his home and do an intake evaluation. S/he will determine his needs (does he need a bed, commode, are there safety hazards in his home, etc.), order anything required including meds and supplies, do a physical evaluation and discuss plans with you and your mom. She will have determined what is covered by Medicaid in terms of number of visits by her and/or a home health aide for daily care. The RN will go over all medications prescribed and make sure that you and your mom are clear and understand times/dosages and if/when your father needs them. It may be helpful to have a whiteboard with a schedule on it so there is no confusion as to the last time he received a dose.

Just so you know, there is a difference between palliative and hospice care. One doesn't rule out the other and both provide adequate pain coverage. My friend provides her own cell phone number in addition to the hospice line and is always available 24/7 (so it really saddens me to see that CNN link).

I do have to admit, however, I did have the unfortunate experience of dealing with a hospice RN that was...less than eager to help. She did absolutely nothing as egregious as those mentioned in that article, but when an elderly neighbor died, I stayed with him until she showed up. She was covering for his regular nurse and gave the impression of being inconvenienced by everything.

Maybe that's because she knew that I was an RN and I already had been waiting for her for a half hour to show up after he had passed, or she was already late and it was raining out. I don't know. She left me to waste his medications (yes, they were opioids), I washed and cleaned him up along with his caregiver, and we sat with him until the funeral director showed up. I would hope that if I wasn't there that she would've stayed with his caregiver and performed these responsibilities herself - had she not, I most definitely would've reported her and had her head on a stick. The medication wasting alone was enough for her to have lost her job. However, I must emphasize again, that these experiences are very, very few and far between.

By all means please make sure that your father's paperwork is in order - healthcare proxy, power of attorney, etc. Have notarized COPIES! And, yes, I suggest that perhaps he names you while he is legally competent to do so, especially in the event that something happens with your mom.

I'm so sorry that you are having to deal with this, but kudos to you for bringing this up to him now and not waiting. Hospice workers truly are amazing people. I can't begin to tell you what a true honor it is to help someone leave this world as easily, painlessly and peacefully as possible. I've had this privilege more than once, and it really is just that. A true privilege.

I hope you're able to make some calls and find what you need. Best of luck to you and Godspeed to your Dad.
posted by dancinglamb at 4:37 AM on January 28, 2018 [3 favorites]

Solid advice above.

It is absolutely amazing that you have the capacity to have this conversation with your dad. Excellent, excellent, excellent job. I work separately as an Rn in hospice and in the ER and it is heart-wrenching when those worlds intersect. You are doing right by him. I hope you take some comfort in that.
posted by pintapicasso at 6:39 AM on January 28, 2018 [2 favorites]

I work in the senior care industry. Please know that Hospice is not just for the dying, it is also for the caregivers. Please do not misunderstand that as just a feel-good turn of phrase, caregiver stress is a terrible burden with very real physical consequences - it should not be just your father's decision, but also yours and especially your mother's. I hope you get someone in soon, for all your sake. On a positive note, Hospice is one of those services that has almost universally good people so you are unlikely to strike out.
posted by rada at 8:08 AM on January 28, 2018 [1 favorite]

Thank you all very much everyone for the information, advice, and words of support. It is helping me with what I need to discuss with his PCP tomorrow, who I need to contact, and what kinds of questions I'll need to ask and information I'll need to find out. I marked the answers that were most informative for future lurkers/Askers but please know that I am touched by each and every instance of [your] taking the time out to respond. Thank you.

I spoke with him again today with my brother (who is fully fluent in Cantonese, unlike me) on speaker phone to help make sure that he understands the choice he is making, what the process might look like, also that he can change his mind. He understood. I also found out from him that he would like to stay at home until his condition worsens to a point where that becomes too difficult which is when he'd like to go in to a facility. I had assumed that he wanted to pass away at home so already the advice to make doubly-sure of what he wants is helping.

I'll update the thread again when we've successfully started the hospice care, and probably with a (literal) post-mortem. Hope that won't make it too chatfilter-y.
posted by coolname at 12:21 PM on January 28, 2018 [2 favorites]

I applaud his decision to move to a facility, this is a very big deal. Many people say they want to die at home, with no real idea of how difficult this is for their family. Most hospice centers are incredibly well run, quiet, peaceful, and caring. After volunteering in hospice for several years, I can tell you that I will go to a facility as soon as it is necessary. Your father is making the best decision for that, I promise.
posted by raisingsand at 2:19 PM on January 28, 2018 [1 favorite]

Yeah I have to say, that was my mom's choice as well and I found it confusing at first ("You LOVE this house, why don't you want to STAY here...?") and other people were definitely judgey about it (so it was good to be able to say "This was HER choice!") but after all was said and done it was really a good decision. My sister and I basically moved in there for the week she was there (they really made a big deal about that "This is your house too") and so we could be in proximity to her but not at the bedside holding her hand all the time.

It was a nice place, people were nice, there was wifi, tv, a kitchen, etc. There's of course a sort of somber vibe a lot of the time depending on who else was there, but they really tried it make it be a place that is not just for the patient but for their entire orbit of people who want to be near them. We even had a few family-fracas type things (just other family members or friends who were distraught and were being a little weird and unreasonable) and they helped us work some of that stuff out. One of the things that is so challenging is that most people who go through this haven't been through it that many times. The hospice people are well-trained in many of the mechanics around end-of-life stuff which can be a huge kindness when you're sitting around with your grief and always asking "Am I doing the right thing?" I hope things go as well as they possibly can.
posted by jessamyn at 5:08 PM on January 28, 2018 [2 favorites]

Update, four or so months late:

I eventually went with MJHS hospice care, and the intake process was actually very quick and straightforward. IIRC I called them on Sunday or Monday, had an intake visit by a nurse on Tuesday, and was set up with regular visits by a hospice care nurse by Wednesday. All the staff I interacted with, the intake people especially, were very patient and understanding while being very helpful.

As far as the home care went, aside from the scheduled weekly visits we got set up with a kit of pill and sublingual one-use dropper/syringe sedative/anti-nausea/anti-pain medicines for with clear instructions about how and when to use them. We were also provided with a 24/7 hotline to report any sudden changes in condition or if we had any questions at all and that proved to be very useful and responsive for clarifying things about the medications and asking for a nurse to visit in the dead of night to have a professional check on something we weren't sure about. We also had a counselor from MJHS who spoke our language (Cantonese) who reached out to us and tried to meet with us.

Unfortunately, my dad's condition deteriorated more quickly than any of us anticipated and he passed away the night of Feb 4/morning of Feb 5. So overall our experience with MJHS was only a little over a week. I would echo some of the sentiments above and stress that getting this care earlier rather than later is something that I wish we had done. Afterwards my mom spoke with the grief counselor and it seemed to help (though she has yet to do it again), and MJHS also sent us some resources for further counseling, support groups, and the like.
posted by coolname at 6:33 PM on June 18, 2018 [3 favorites]

« Older Recommendations for Portland Therapists That...   |   Alexa, Escape the Room hints please Newer »
This thread is closed to new comments.