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Dad being kicked out of hospice 
Créé par Rltm
19 janv. 2025, 16 h 51

My mother and I are desperately seeking help and support. My elderly father has Stage IV cancer with mets to his lungs. His physical symptoms (weight loss, fatigue, no appetite) came with the rapid onset of neurological symptoms (short-term memory loss). He now eats/drinks very little and has lost about 50 lbs. He was admitted to a residential hospice about 1 month ago. He had a bit more energy for the first week, then experienced what we understand to be a rally. He was more lucid than he has been in several weeks. Since then, he is experiencing delusions, he has reported pain (something he would never ever do before) and he has lost a significant amount of weight while in hospice. They want to discharge him because he is still able to walk (slowly and shuffles). They also say he does not qualify for the crisis list in LTC. Private residential care would not be suitable because of his memory issues and delusions. We understand publicly provided home care would be minimal and there doesn't seem to be any private companies in their area. My mother is overwhelmed. She witnessed the slow and painful death of my sibling from cancer years ago. This has stayed with her. She does not feel she can care for my father at home. At this stage, he does not have significant physical needs but he cannot be left alone. He is also vulnerable given his lack of memory and his inability to process complex situations (e.g., he forgets he is dying and each time he is told, it is traumatizing for him). Sorry for the incoherent dump here, but does anyone have any suggestions? The hospice has been very dismissive of his neuro symptoms. Also, can hospice legally limit the amount of time someone spends there? I understand that hospitals' palliative care beds cannot. Does anyone have any experience with patient advocates in southern Ontario? Thanks for any information or support.
 
21 janv. 2025, 14 h 55

Hi RTLM
I am asking some of the other members for their input as well. I don't have any experience with advocates in southern ON, but I wondered if this link to programs and services in ON might be of some  help. https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Support/Resources/Programs+and+Services/Provincial/Ontario.aspx#MapAnchor

I will continue to look/ask.

What a very difficult time - for all of you.
Katherine
 
Réponse de JennJilks
21 janv. 2025, 15 h 49

It is very upsetting, I know. 
I had a client kicked out of the palliative wing of our local hospital. She was sent home and died. She was barely managing. I was so angry. I complained, and my respite supervisor was contacted by the palliative nurse at the hospital. 
I have had clients threatened with copays of $200/day, people living in, for example, a run-down trailer park. They had no means. Home Care is declining. Government policy seems to be heading towards neglect.
Is it a for-profit or public hospice? 
I would suggest you contact: 

The Advocacy Centre for the Elderly (ACE)

. 
They all have strict guidelines on who does or does not qualify for hospice. 
What they tell families around here is to get your loved one back into hospital anyway you can. They will find a bed soon. 
I don't know if that is much help.

/Jennifer

Hospice & Respite volunteer
 
Réponse de Rltm
22 janv. 2025, 21 h 40

Thanks, Katherine and Jennifer. He is really in an in-between situation. He also knows how to mask his neuro deficits really well. When asked by the doctor about pain, he says he is fine. Yet, he reports pain to his family. They simply do not believe us. We would like to get him into LTC if possible. Do either of you have any suggestions for that? He has a Health at Home evaluation happening next week. If he is having a lucid day, he will be able to fool the coordinator into thinking he is fine. 
He is in a public hospice. So frustrating because all of their fundraising is based on images of facilities that look like they are for people with a few months left to live, but really, they are death factories and this particular hospice has had between 3-7 beds available in the last month.
Anyway, we will look at an advocate...I feel terrible for people who have no support at all.
Thank you, again.
 
22 janv. 2025, 22 h 41

RLTM, I messaged on the the Ask A Professional team members and they suggested - if you have not already done/tried this to get a home care/community care coordinator involved (this person believes there are those who specialize in palliative care) - who knows you and the family and can possibly help you navigate the systems. Ontariohealthathome https://ontariohealthathome.ca/ - is one link.

Also would your father's oncologist - or perhaps even better, if there is a Social Worker attached to your father's care/file could they advocate for him and you as a family?

You might want to send AAP a question. https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Support/Support/Ask+a+Professional.aspx

I do hope there will be some light for you all in the midst of this tunnel.

Katherine 
 
Réponse de Rltm
23 janv. 2025, 13 h 30

Thanks so much, Katherine. We have a health at home meeting next week. We don't have a social worker attached to his file though. We lost our health at home coordinator when he went into hospice. It looks like we will have a new one now. But, we are trying to reach his former coordinator. This is soooo stressful. We were pressured into hospice, who told us my father had 3 weeks left to live and we had to get him in before Christmas. Now, they want him out. Anyway, thanks for your suggestions.
 
Réponse de Lonlon
06 févr. 2025, 13 h 24

Je suis vraiment désolé que vous traversiez une situation aussi éprouvante. Gérer autant de changements, d'incertitudes et d'émotions en même temps doit être extrêmement difficile.

Pour essayer d’alléger un peu la situation, voici quelques pistes qui pourraient vous aider :

  1. Recontacter l’ancienne coordinatrice : Si vous avez ses coordonnées, essayez de la joindre directement ou de voir si quelqu'un dans l’équipe de soins palliatifs peut faciliter cette communication.

  2. Clarifier la situation avec l'équipe médicale : Demandez un rendez-vous avec les responsables des soins palliatifs et de la santé à domicile pour comprendre les raisons du changement et voir quelles sont les options disponibles.

  3. Faire appel à une assistante sociale : Même si vous n’avez pas encore une personne attitrée au dossier, vous pourriez contacter les services sociaux ou l'hôpital pour obtenir du soutien administratif et émotionnel.

  4. Explorer les options de soins à domicile : Si l’hôpital pousse pour une sortie, voyez si vous pouvez mettre en place un accompagnement adapté à domicile avec une équipe médicale et un soutien adapté.

  5. Chercher du soutien émotionnel : Ce que vous vivez est très éprouvant. N’hésitez pas à parler à un proche, un groupe de soutien ou même un conseiller pour vous aider à traverser cette période.

J’espère vraiment que les choses vont s’apaiser et que vous pourrez obtenir le soutien nécessaire pour vous et votre père. Prenez soin de vous.
 
06 févr. 2025, 21 h 40

Lonlon, I hope it is alright with you that I have used google to translate your beautiful message for RLTM.  
Katherine

I'm so sorry you're going through such a difficult situation. Dealing with so much change, uncertainty and emotion at the same time must be extremely difficult.

To try to alleviate the situation a little, here are some ideas that could help you: Recontact the former coordinator: If you have her contact information, try contacting her directly or see if someone on the palliative care team can facilitate this communication.

Clarify the situation with the medical team: Request a meeting with palliative care and home health officials to understand the reasons for the change and see what options are available.

Call a social worker: Even if you do not yet have a person assigned to your case, you could contact social services or the hospital to obtain administrative and emotional support.

Explore home care options: If the hospital pushes for discharge, see if you can set up suitable support at home with a medical team and appropriate support.

Seek emotional support: What you are experiencing is very trying. Don’t hesitate to talk to a loved one, a support group or even a counselor to help you get through this time.

I really hope things calm down and you can get the support you and your father need. Take care of yourself.
 
Réponse de Rltm
07 févr. 2025, 16 h 15

Thank you for your reply, Lonlon. And thank you for the translation, Katherine. 
Very true - this is very trying and I need to seek out some support for myself. Thanks for the reminder.
I did find two patient advocates who have been very helpful. Once this is resolved, I will start a new discussion of things that I found helpful in the hope that others do not have to deal with this same situation.
Thanks so much to all who replied!
 
07 févr. 2025, 20 h 46

That would be very helpful RLTM. When you have the time and energy. 

Katherine


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