Question about hospice; how do you initiate the conversation?

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.

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.

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.

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!

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...

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.

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?

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.

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.

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.