After battling head/neck cancer for a couple of years now, both my oncologist and my ENT doctors have recommended an at home Hospice care program. Since I have no idea what that means, I thought that I’d ask the smartest bunch of people that I’ve been blessed to know: Dopers.
What information can a Doper provide when it comes to such a program? If a shove in the right direction is a better choice for me, please, feel free to point in a direction. I thought that I knew about hospice care, but in reality, not so much. If there are any sites that would be of particular help, please let me know. It appears as tho I need information from A to Z about this subject.
When we did this for my Mom, the best contact was with county social services. (not for any low-income type reason, they were just the best resource). They were great, coordinated with Visitng Nurse Association, etc. This was in Wisconsin BTW, but maybe a good place to start. Good luck!
There are, believe it or not, “for-profit” hospices–think bottom line, shareholders, dividends etc. Think penny pinching ass holes. Avoid. Your community probably, maybe has a non-profit hospice.
Once you commit to hospice care, they will take over the expenses, from my experience. Meaning bed, O2, shower chairs, canes, etc. If they advise transport to a hospital for something they can’t handle in your home, that’s their expense. I don’t know if you’re on SS or disability, but it is my understanding that they will receive monies from same. Thus the “free” services.
In my experience, hospice workers are like any other slice of humanity. Keep your or your advocate’s eye on things. There are good, wonderful people and bad P.O.S hospice nurses and home care people. Feel free to fire anyone you don’t trust or even like-that’s your right. Probably you shouldn’t shove a nurse out the door screaming like a banshee and throw her bag after her down the sidewalk, but hey, it’s a stressful time.
I would think you’ll get some good information here.
Both my parents ended their lives in Hospice care. Basically, they assign a nurse to your case and she supervises other caregivers (house cleaners, if necessary, people to help you with daily chores). For the most part we did not avail ourselves of those services as the family was helping out. They can also put you in touch with counselors if you want. The biggest thing, however is their access to pain relief drugs.
The people I met were good at what they did and were compassionate.
On reading the OP again, I realize my experience with Hospice was very different than what yours might be. My parents were both quite elderly. One thing you want to make sure of is that there is someone who will advocate for appropriate medical attention and not just give you more pain medication. While your doctors may have come to conclusion that your cancer will not respond to further treatment, you do not want to die of pneumonia because morphine is masking the symptoms. As I said, all the people who I met were both compassionate and professional (and I am not a medical professional), but a lot of this depends on communication, and a lot of that depends on you, and when you can’t, on someone you trust. Ask your doctor for a suggestion for a Hospice provider (there will be more than one). Perhaps he can put you in touch with someone else currently in Hospice.Think about what you want to ask the nurse and make a list.
How does this all play out for older people, in need of Hospice care, who are “alone in the world”?
That is, someone who lives alone, has no friends or acquaintances to speak of, and has no relatives, or none nearby, or none that are very close or available? And with only modest financial resources (e.g., savings).?
Is such a person doomed to be assigned to an overworked, underpaid social worker who will take 15 minutes to scan down her Rolodex, make a few phone calls, and send the patient to the first place that has an available bed?
Will there by anyone who will (seriously) advocate for that patient, watch that the patient is getting good care, and otherwise watch out for the patient’s interests?
ETA: Will such a patient be a reasonable candidate for “at home” hospice care? Or would such a patient necessarily be placed in a hospice facility? Would such a patient be a candidate for any kind of hospice at all, or would he be left to die alone at home or in a gutter?
Sometimes those case managers (often medical social workers in a hospital) are seriously good advocates. Not always.
the O, your best bet is to interview two or three (or more if you don’t click with one of those) of the people your doctor can send to you. Take all the time you need with them to discuss what you want to do next, what you want to do when things get worse, and let them tell you if home hospice is a good choice for you. It’s not for every person or every family, but when the fit is right, it’s really wonderful.
The general idea of hospice is that your doctor thinks it would not be unexpected for you to die within 12 months, and he thinks the focus should move from curing your cancer to helping you be as comfortable as possible. That doesn’t mean he’s sure you will die within 12 months, just that he wouldn’t be surprised by it or order an autopsy to investigate the reason for your death. This also doesn’t mean they won’t treat you for any illnesses that come up - they will. If you get pneumonia, you’ll be prescribed antibiotics and whatever else is needed (that you want) to try and make you better. But the focus is on comfort care and treating those things which can be treated, not beating the cancer. And sometimes people do live longer than the predicted 12 months, and will decide to move themselves out of hospice care for a while. That’s okay. And then you can re-enroll in hospice again if you want. It’s not a one-and-done, and it’s not a death sentence.
You may choose to have a DNR order signed by your doctor, but you do not have to do so. You may choose to write an Advance Directive - a written document of what you want and don’t want in terms of medical care - or appoint a Power of Attorney for Health Care - a person who knows what you want to happen and will make medical decisions on your behalf when you cannot communicate - but you don’t have to. I highly, highly recommend it, but none of those things are mandatory to receive hospice care.
Hospice care can happen as an outpatient visiting a clinic, as a resident in a group living situation or in your own home. Home hospice, of course, is this last kind.
On a practical level, where home hospice care and home health care are the most different is the amount of help you and your caregivers can receive. Home hospice has more generous benefits and hours for housekeepers, homemakers and CNAs to help with bathing, getting dressed, helping you to the bathroom, preparing meals, doing laundry and errands. In home health, I as an RN spend an hour with a patient once or twice a week, and CNA’s spend an hour once or twice a week. In hospice care, they may spend four or five or even more hours - which gives your caregiver a much needed break. And when you do eventually die, the home hospice nurse will be at your home in a very short time (if she wasn’t there already) and take care of calling the doctor and the coroner and getting the proper transportation and handling of your body. I can’t tell you what a relief that is to family members who are grieving.
I hope this was a little helpful. I’m not a hospice nurse, I don’t have the training for it, but I’m a home health care nurse, so sometimes it’s my job to tell patients or their families that it’s time to consider hospice services instead of mine. It’s never an easy conversation, but overwhelmingly, they call me after speaking to the hospice nurse to tell me how relieved everyone is. Hospice nurses are freaking angels in comfortable shoes.
Hospice provides great assistance in a variety of aspects of care. Your local agency will answer all your questions. For someone on Medicate hospice will cover about all bills.
WhyNot, I thought your comment about it not being an all-or-nothing, no going back choice was insightful. Thank you.
I also wanted to share this New Yorker article, which talks about terminal illness, end-of-life choices and hospice from a doctor’s point of view. I know someone who was recently diagnosed with incurable brain cancer, and I wish we were close enough for me to share this with her directly. So I’m sharing it with the Dope instead
Both of my parents also went through hospice, but I don’t have much more to add than what everyone else has said. I do recall my brother saying that Medicaid would cover hospice as opposed to non-hospice, so that’s what partly influenced our decisions to place them in hospice.
I also just wanted to say I am so sorry you are in this situation. It sounds like you are grounded and brave in facing such dire circumstances.
My local healthcare system has what they call “hospital at home”, where patients who are sick enough to need permanent medical attention but not acute are cared for at home; they are listed in the local hospital as being hospitalized in “Room [their address]”. It can range from a person who’s got both diabetes and tremors getting visits from a nurse’s aid who checks their blood sugar (if there is a qualified caretaker, the aid’s visits will be less frequent than if the patient lives alone), to sending to a patient’s house a bunch of those machines one doesn’t expect to see outside a hospital (as was the case for my brother’s father-in-law). Conditions, regulations etc will change by location, as usual. I don’t know whether it will be the right choice for you, but I think it’s very good simply to have it as an option - in the case of my brother’s father-in-law, the patient’s wife is one of those women who don’t leave the bedside of anybody of theirs who is hospitalized (but will leave it when they’re at home), so that alone was a big reason to go the “at home” way.
I’m not sure exactly what information you are looking for, or where you are located, but here is a directory of State Hospice Organizations with contact information. Calling the one in your state may be a good starting point.
