Question about hospice; how do you initiate the conversation?

I started my dad in hospice two days ago, the dr suggested it during the second of three hospital visits in the last three months. He is fighter, all he wanted to do was get out of bed last night and go out to play cards with his friends. It was really difficult, he's been seriously confused not fully sure where he is but his strong will to go out was heart wrenching. The dr told us that he doesn't have long to go yet he seems to be fighting it which is making me question the whole thing now and causing me some angst. We are doing it at the hospital and are able to visit, its costly because of is level of care, I. am paying but that is what he worked all his life for and my mom and I couldn't seriously have been able to care for him in his state at home. I know it is not a death sentence but I feel like now he feels trapped and wants out of the hospital. Lost 50lbs at least in the last 3 months, 3 infections, non stop antibiotics he is bed bound, went from being fully vital to bed ridden can't walk, and asked them if at least they can get him up in a chair tomorrow. The staff have been great but I am feeling concerned that I may have pushed it before time seeing him that way even though I have been told that he does not have much time. He's basically been on antibiotics for three months straight and the DR is now concerned of issues with that. I guess. I was expect ing it to be more quiet and accepting but the fire in him is there and intellectually I know what is going on yet emotionally it's more than a little hard to watch. I am an only child and most of the decisions are mine since my mom is 85 and a bit of a mess herself. before this last trip to the hospital he was refusing to eat, or take his meds would turn to the wall and not look at us but now the fight seems to be back, and I know there is confusion but still. I am not sure what to do now I know he can't be cured just his downfall was so quick last few months but I don't want him to feel like I am pulling the shroud.

Can you mom walk? If she is in a wheel chair, Yellow Cab, in my area at least, have some vehicles that are wheel chair accessible. They are bit more expensive, but once they are in the wheel chair, they stay in the wheel chair. the have belts to lock the wheels down and they have seat belts that also help stabilize the person

Chronic Heart Failure. Her heart cannot pump as well as it used to. does she have cancer?
dad had cancer. He had a Porta-cath (?) is this a pic line? too many years now, not sure what the name was, but it was not comfortable, on his left side above heart for chemo..
cancer made him retain fluid, so he got "tapped" at least once a week. My friend told me, the more you tap, the faster it fills.. Why? not sure.. but it seemed to work that way.

mom graduated from Hospice 3 TIMES... The 4th time, she went to Heaven.

aunt just graduated from Palliative Care. She has stabilized, so no issues to be concerned about for now. She can always be re-evaluated if her health goes south.

No reason to be scared or concerned about Palliative Care and Hospice. They are there to help.
Just ask doctor, don't wait for doc to bring it up. By now I am sure these conversations have be approached and being implemented.
We hope your mom is comfortable now.

So, is your mother agreeable to having a picc line put in?

I understand that it’s an awkward subject to bring up. It certainly does not mean that you’re ready to give up or that you are trying to rush your LO along, but I would absolutely encourage anyone to bring up the subject with your LO’s doctor. What I said to my mom’s doctor was that I didn’t know if she would qualify for hospice at this point (there are strict guidelines that must be met) but when the time came, hospice would be a service we were interested in. As has been mentioned, hospice care doesn’t mean one is ready to get in bed and die. Hospice care is very beneficial not only for the patient but also for the caregiver. They can provide medications and supplies (diapers, pads, ensure, etc). They are available 24/7 for any issue or question. A nurse can come out to check on problems your LO may have without your having to make an appointment and get your LO to the doctor’s office. They can help with hands-on care like bathing. In short, they are able to provide so many supportive services, and it’s a shame that so many people wait until the last few days to call in hospice. The idea is to maximize the quality of life for the patient. Ideally, hospice care should be started as soon as someone meets the qualifying criteria for their primary diagnosis. That’s why you need to let the doc know you are interested. Believe it or not, it’s equally awkward for them to bring it up.

If the distension in your mother's belly is increasing, you need to speak to her doctor NOW, not wait until next week.

If s/he says "take her to the ER", what will your mother want to do?

Most people think of hospice as a near to the end service. But I learned that it's a service provided for a permanent diagnosis (dementia, etc) without a cure. The patient could be living for years with the ailment but Medicare will still pay for hospice to visit. We have a nurse coming once a week & a health aide twice a week just for a few hours a day. The doctor recommended it & it has freed up a little of my time to mow & work outside while they're here. I also discovered under hospice, Medicare covers medical supplies, prescriptions & depends products. Under hospice, they review & renew their services. Sometimes services stop or reduce in frequency. Hospice does not mean eminent death. I encourage others to talk to their doctor openly about the service. Hospice has the most caring of all aids. They are very empathetic, understanding & work hard so everyone is comfortable. I've been caring for my mom for 9 yrs now & have done it all. I've tried nursing homes, adult daycare, health aides in her home & now she's living with me & having hospice visit. It's a very nice arrangement that is free.

Ask to speak with the doctor in private via the phone before the next appt.
The doctor can’t read your mind. These days if you want something addressed or discussed you need to seize the moment.

I am a RN and found myself in the position of seeking and coordinating the correct resources for the moment many many times during my position as a homecare nurse. My role was to provide information on Hospice as a resource available as an alternate form of care for their loved one.

But imo it is the doctor’s responsibility to directly meet with the patient and their family to present hospice as next step. It’s a necessary conversation. That doctor will write the order and if the person at end of life is cognizant with no dementia & able mentally they can consent. If not able to decide on their own, then the MD should discuss hospice with the POA if the patient shows no sign of improvement.

One episode that will always stand out to me and still does to this day:

I was a HC SN and had a patient sent home with homecare services. This man had lung cancer, CHF and COPD.
He was so ill.....every visit (I saw him 3x/wk) it was so very clear he was deteriorating daily. There was no hope left. I know, because I was on that journey with them.
I had discussed hospice in general as that is MY responsibility but only to offer the idea as the family began to accept that the aggressive treatment his doctors ordered for him was not working and EOL was near. The poor patient couldn’t even get up from the type of recliner that assists the person to stand up from a sitting position easier so the person didn’t use all his energy to stand up (that’s how sick this man was). I continued my visits. He got worse. He couldn’t sleep(couldn’t get comfortable,could barely eat,etc) Normal body functions like going to the bathroom took him hours to recover. And with a lot of assistance as well, as this man’s family were awesome and so very supportive of each other.

I had called pt’s PCP twice & left a message with my request for PCP to call me back. It’s a HUGE internal medicine group I had problems with prior to this.
Third time I insisted this MD call me back and made quite a stink over not speaking with him twice so far.
I FINALLY got to speak with the PCP and informed him of his patient’s decline and straight up requested a hospice evaluation as the next course of treatment.
That young PCP called the patient and his family and asked if it was ok for him (the PCP) to drop over that evening. The PCP did come over & examined the patient. The PCP stayed and explained everything to the patient and his family including the reality that the patient was at EOL and explained what hospice would provide & quickly : the family would be able to receive a hospital bed, oxygen, & anything to support the family caring for this patient who was dying.

To this day I still feel the person’s physician/provider is the one who should actually ask/obtain/write the hospice order after direct collaboration with the family via conversation of how the member will benefit from hospice and confirm whether the family understands the patient is terminally ill.

My husband’s doctor brought it up. She said he isn’t there at the moment, but you need to prepare yourself that the time isn’t far off. Sometimes the hospital social worker will bring it up if the hospital visits aren’t producing improvements in condition.

I was so focused on getting him returned to the ability level prior to the hospital stay that I was missing the obvious that it wasn’t happening.

If you think that your LO is being overly stressed by Home Health or Palliative care and Hospice is not mentioned then ask for a prognosis.

Hospice isn’t a death sentence nor is it a permanent arrangement. If you see improvement in your LO you can sign a paper taking them off hospice and they can be admitted to the hospital.

Since it was brought up to me by social worker, I called the doctor who had previously told me to prepare myself and discussed it at length with her. I decided to go with hospice and have never regretted it.

The entire mindset is changed. The focus is on comfort care my husband and helping me cope. When I explained what was going to be the future - no more doctor visits (hospice sends NP or video chats with doctors) no more trips to the hospital. My dementia struck husband said “Good!” with the sweetest smile on his face. I knew then I had made the correct decision. He lasted about 3 weeks and then passed peacefully in his sleep with no pain. Good luck on your decision.

Why would you feel as though your mother would need hospice? I am not sure if you think that she's not receiving medical care correctly from her cardiologist. Also, she needs to be seen sooner rather than later by her cardiologist to maintain the correct dose of diuretics. You may want to consider the fact that the average bathroom scale may NOT be calibrated correctly. Ergo, giving a false reading.

I think it depends entirely on the emotional stability of the person you're having the conversation with, personally. For example; when I told my father we'd be calling in hospice b/c there was nothing to be done medically for his brain tumor at a certain point in time, he was matter-of-fact about it. He said he'd lived a good long life, and that was that. He was 91. I reminded him that he could easily live a year or even more under hospice care, and that it was not a death sentence being handed to him. He acknowledged that statement, but said he was ready to die.

Now, if I were to ever even THINK about broaching the subject of hospice with my mother, who's 93, with the emotional maturity of a 4 year old, she'd have a giant melt-down and become hysterical immediately, clutching her chest and requiring a fainting couch to be brought in along with smelling salts. When the time does come to bring hospice in, it will need to be under false pretenses if I know what's good for me. And everyone else in her path.

Talk to your mom's doctor about hospice sooner rather than later. Line your ducks up so you're ready when the time comes. When MY time comes, I'll be happy to know that hospice will help me die with comfort and dignity, so that I won't have to suffer and prolong my loved one's agony by watching me suffer. That's the truth of the matter.

Good luck!

Believe it or not, many physicians are uncomfortable discussing death and dying. I think it has to do with the fact that they were trained to heal. When my mother was diagnosed with a recurrence of cancer, she and I broached the topic of hospice. The specialist involved in her care would not provide assistance with hospice arrangements. He deferred to the primary and dismissed us. My husband had to broach the topic of hospice for my mother in law. If I were you, I would not hesitate to initiate the conversation.

The only expectation I have about hospice is to ease my mom and keep her comfortable, when she no longer wants to do the "hospital dance" - extreme edema throughout her body, followed by increased dosages of diuretics, which if they don't work is followed by a week-long (at least) hospital stay and then a stint in rehab to get her strength back.

She has just been admitted to the hospital again, today. Whether or not she'll have the physical strength to be able to come back home after the week (or thereabouts) stay in the hospital has yet to be seen - she hasn't been able to much of anything physically for about a week now, and I have a lot of steps to get up into my house, not to mention another flight up to her apartment - and I think she's getting more and more depressed about the situation.

The strange thing about my mom's scenario is that, other than her heart, she's extremely healthy. She has no underlying conditions that other people her age with CHF have. Comparatively speaking, I know the cardiologist sees people much younger than her much worse off, and I know that in medicine a lot of things are relative. Physically, they can probably keep her alive another 10 years. I don't know that she wants that, though, mentally. Her quality of life has become greatly diminished, but physically speaking I don't know that the doctor is willing to give the 6 month threshold. Which is why I asked the question about starting the conversation.

I do understand that some hospices are not as good as others; none of us will allow her or ourselves to be yelled at or insulted, so that's not a concern of mine. I will contact her doctor once we have an idea of what's going on with this latest hospital stay and go from there...

I thank everyone for their continued support and ideas!!

What role do you see hospice playing in your mother's care?

Hospice does provide very good support for people as they approach the end of their lives. That's their specialisation, of course. But it doesn't follow that they're the *only* kind of service that can do the job well. So, to explain my question further: what support do you think your mother needs that she is not currently getting?

The thing about diuretics is that the effective therapeutic dose has quite a marked threshold: it's not a gradual increase in output as the dose increases, it's more "nothing, nothing, nothing, gush." So if you suspect this increased dose still isn't working, call your mother's cardiologist without delay. I wouldn't wait another week.

Are you able to measure quantities, input and output? Alternatively, do you have any really accurate bathroom scales?

For my husband and myself hospice was brought up by the Dr at the hospital after my husband almost died from aspiration pneumonia. He has been on it ever since and that has been 18 months now. Under normal circumstances, the nurses come several times a week and the aides to bathe twice a week. However since we are no longer under "normal" circumstances with the Covid 19 crap, my husbands hospice agency has cut down the nurses visit to once every 21 days for most patients with televisits replacing the actual visits, and have completely stopped there aides coming out to bathe, which in my case means that I now have to bathe him with the help of my son(who can only come once a week). My husband is on a pain pump, so the nurses are required in his case to come 3 times a week. I still have to pay an aide to come in the mornings to get him on the bedside commode for me. I certainly have had my issues with hospice, as I believe they actually do better when someone is only using there services short term.(meaning they die quickly) They really aren't equipped to deal with a patient long term. At least that has been my experience. And the fact that they charge medicare $6000 a month for me to take care of my husband in home, I find incredulous.

I have never had a problem with Hospice. But then I live in a small town and word of mouth is everything to a business.

There have been some postings where family members have had a bad experience and I think some of that is not understanding how Hospice works. It is true that with the newer criteria, you don't have to be dying within 6 months but...you will die eventually from the illness you have. Be aware, that there is good and bad in everything.

If Hospice is done in the home, family members will still be doing the majority of care. Someone should be with the patient 24/7. An Aide may
be supplied for bathing maybe 3x a week. If you need time to run errands during the aides visit, tell the office before so they can schedule her for more time. When admitted, that Nurse should tell you what will go on and this is when you ask questions. Another Nurse will come to check on patient again maybe 3x a week. She will show you how to administer meds. This nurse should be available to you 24/7. If you need to leave a message, she should be calling you within a reasonable time. All concerns should be directed at her.

All Hospice employees should be professional. The Nurse should be willing to answer any questions and concerns you have. One posting the persons father requested no more pain killers because he wanted to be lucid, the nurse gave him the shot anyway. To me, this was a No No. The patient has input concerning their care. Be aware that this Nurse answers to someone and you can call and complain. If the aide and the nurse aren't a good fit, you can ask for replacements. The whole purpose of Hospice is to keep someone comfortable and free from pain. Sometimes to do that Morphine has to be given and that may make the person sleep more. Morphine is also given to ease breathing. But also their mental state is a factor. So if they don't care for the aide or nurse, they and you have a right to ask for replacements.

Medicare fully pays for Hospice in the home. (If done in a facility, the facility itself is not covered) The patient will receive Depends if needed, prescriptions and anything needed for their care. Be aware that some medication will stop.

You do not have to keep a Hospice agency if you are not happy with the care given. You have not signed a contract. You have the right to change to a new one at any time. Remember that its yours or patients home and as such those coming into it need to be professional and respectful.

We had a really terrible experience (at the hospital) with one hospice.
The experience ended with them yelling at us and we were all in tears.
Do not hesitate to talk to more than one hospice option if you have a bad experience.
Fortunately our brother recovered, but we certainly know who to call if needed.

I would say with Hospice you will get more help.
You will get a Nurse that will come visit once a week.
A CNA that will come 2 or more times a week.
You will get equipment, supplies delivered, medications delivered.

The thing about Hospice is...if you change your mind..ask to be discharged and you can return to your previous medical services. So "try it on" for a few weeks, give it 4 weeks and if it is not right then it is easy to ask for discharge.

Hospice does not mean impending death. Hospice is there for comfort care, education, support. You are getting more help for HER and for you. You are getting more support, education and help.

I can relate to the hesitation about hospice for the reasons you describe. My advice now would be to call and don't wait to ask for a hospice information or an evaluation. I received information of a hospice organization during an ER visit last year and called to follow up for information for future reference. I agreed to an appointment for information and a hospice nurse came to mom's home and answered all my questions. Mom agreed to the need at that point and the nurse made a case for hospice need with mom's pcp. It was approved. The case manager nurse consistently comes now weekly or every two weeks. A social worker and chaplain visit monthly. As the social worker said recently, every case is different and in our case it's turned out to be a marathon as mom appears better than in december. She remains frail and in decline but no longer bed bound. Hospice visits are tailored to mom's needs at any given time. It is somewhat of a relief because I can call at any hour to discuss a symptom and not have to wait for an appointment with a pcp. You can choose between the pcp or the hospice doctor. And of course if that time nears or comes, I would call hospice. She may evaluate out or I can revoke it and restart which is what I'm currently deciding. Personally I have become more accepting over circumstances. I should not forget to add that Mom did not want any further medical or to go to the hospital.

I get your point. Something to inquire from doctor could be like, we are exploring ALL the options, because my mother wants to be as comfortable as possible. Perhaps a hospice or palliative care alternative should be explored. I want to get her as much support as possible.

Hospice is not the "death sentence" it once was, but more now a money making business. They often take people in they know will likely have more than 6 months. Most younger doctors understand that. Bring it up to the doctor. Explain to your Mom that Hospice isn't what it was but is more now a matter of comfort care; yes, you do get antibiotics for a bacterial infection, but no to all the tests and heart procedures and so on. And this amounts to a way of getting more care. It is paid for by medicare. If the patient is doing well at the end of the time allotted then the patient may be dropped from hospice. If still struggling may be signed up for more hospice. It is worth exploring when you think you are ready to explore it.

That's a great way to word it, thanks, Barb!
I do know hospice isn't throwing a shroud - I know that, really - but I think I might be afraid of sounding, I don't know, anticipatory, like a kid a Christmas? - if I ask about it. Isn't that stupid of me? I know there's no cure from what she has, it's going to kill her eventually, but I don't want to be seen as the one giving up on her, if that makes any sense...

We are considering this for my MIL right now, struggling to overcome covid. Sometimes people actually can improve or recover on hospice, so please this in mind that it does not always mean "final". Peace to you!

Is your mother competent? Does she have an Advance Medical Directive? Has she brought up that she's interested in avoiding continued treatment or more pain relief? Is she able to ask her doctor about her prognosis? I’d think the doctor would be able to describe her options and how viable the treatments are. And, if she wants to begin tests to see if other conditions are present and how she can treat them.

My LO’s situation was different, because she had severe dementia. Upon multiple visits to ER, the doctors always asked me if I had considered hospice for her. She had recurring infections. So, I eventually asked her primary about it and he agreed. The hospice rep came the same day. All meds were discontinued except for those that contribute to keeping her comfortable. She sees a hospice nurse weekly, but kept her regular doctor too. She appears to be more comfortable since going on hospice. No more midnight trips to the ER, needles, catheters, strange people, loud noises, that scared her so much.

Based on what I have seen, doctors focus more on treatments and extending life. This has been my experience.

You say " Is it time to consider adding a hospice evaluation?"

If they say no, you ask why not. My mom had very much the same symptoms you are describing while in the hospital. I asked about hospice or palliative care. The palliative care team came and said no, not yet.

A few months later, after a second chest tap, the pulmonologist sait it was time to stop poking holes in my mother ( those were his exact words).

The medical director at mom's NH found mom hospice eligible at that point, but my brother would not sign off. I always regret that I couldn't get him to see that, since we all agreed that mom was NOT going to go to the hospital any longer, having the extra help hospice would have provided during those two additional years would have been a blessing.

Hospice is not throwing the shroud over your parent. It is an acknowledgment that what ails her can't be cured, only ameliorated.