How do you know when comfort care or Hospice are appropriate?

Jeansdtr

My mom has lost a lot of ground over the last couple of months. She is now incontinent, no longer able to walk, requires assistance to stand and transfer, she can not feed herself and her food must be puréed. She only weighs 95 pounds. But she can chat up a storm at times. Not able to hold conversation but talks about whatever is going on in her head. When I say I love you she says Love you too. She was in he hospital for a UTI and then placed in a nursing home last week. Now the facility wants to talk to us about comfort care. I don’t know what to think about that. I guess if she was non verbal it might be different. She doesn’t appear to be suffering although she constantly is thirsty/dry mouth. I don’t know what to do. Not sure what comfort care really means. Any help would be appreciated.

Cynbar

Hospice/comfort care means they will focus on keeping her comfortable, and the hospice staff has a lot of expertise with that, including medications and medical equipment and suggestions/teaching for the facility staff. It will put in more services, at no cost to you (paid by Medicare or whatever she has for medical insurance) including regular nursing visits to consult with the staff, additional aides for personal care, and auxiliary services such as a chaplain, social worker, volunteers to sit with her, perhaps music and pet therapy. Your mom can usually still take her regular medications, such as for blood pressure, until she is unable to swallow them. It also would offer support for her family, through the social worker and bereavement counselor. The biggest change is that she would no longer be seeking treatments, or tests such as an MRI, or hospitalizations. The plan would be to get a doctor's order and treat something that came up, like a UTI, right at the facility without a trip to the ER. Hospice can be a big help and source of support, but only her family can decide if they are willing to give up active treatment. Most families ask themselves, "What is to be gained at this point by aggressive care?" And I do have to add that you wouldn't be locked in, you always have the option of revoking hospice and seeking treatment if that makes sense at the time. If she qualifies, it might be worth a try to see how it goes.

King Boo

It sounds like they are talking about palliative care.  Think of it as a sort of pre-hospice phase.  The first priority is keeping the person comfortable.  Sending for curative medical procedures bears close scrutinty - one must ask the question "what does this gain my loved one."

I can tell you that several physical things you mention together adds up to a decline enough that signals to the nursing home it is time to talk to the family about comfort care.  

Needing pureed food due to a decline in oral function, increasing to total incontinence, and inability to ambulate are strong indicators.   Add in the UTI - while UTI's can be an intermittent problem, when they start to happen serially, it indicates the body is no longer able to handle fighting off infections.  A UTI will be treated, because they are uncomfortable, and taking oral antibiotics is not invasive or aggressive.

Being nonverbal is not required for the end to be approaching.  

I liked palliative care because, honestly, it was getting to the point that it was almost obscene to me to send my LO back to the hospital - where it was confusing, noisy, with uncomfortable medical procedures and abrupt  hospital staff.  No sleep was possible, hospital delirium and it's nasty recover guaranteed - and nothing was going to fix my LO to get better.

Nothing that was done medically, surgically, or diagnostically would extend life by more than a few weeks or month, and at great cost to quality of the days my LO had left.

Palliative care was a pre hospice event for us and it helped me get my head wrapped around the philosophy.  I was ready to embrace hospice services and all the good things it brought my LO, including a brief rally, before it was time for him to go.

Palliative care is a phase where you still have the option to evaluate aggressive medical treatment.  It is a good transitional phase.

terei

From the outline you gave, I would call a hospice + have her evaluated.  There is really no downside to have them on board, unless you want more medical attention than keeping her comfortable.

harshedbuzz

Jeansdtr-

Palliative (hospice-lite) and hospice care are an additional layer of services and care for your mom and her caregivers. Your mom already had a terminal diagnosis and is her body seems to be showing signs that it would be a kindness to approach care differently. This is not a death sentence or "giving up" but making choices to keep her comfortable and not subject her to transfers and hospitalization for care that could be delivered where she lives or does not add to her quality of life. 

My dad's gerontologist suggested a palliative approach in the latter stages of the disease. We were able to jettison some of the meds he took that had side effects- his statin and his BP meds. (his BP had dropped, so this meant he wasn't falling as much) but we kept his psychoactive meds, the meds needed to keep his COPD in check and we even continued the ADT shot he was receiving for a recurrence of prostate cancer. 

Dad died the night before he was to be evaluated for hospice. I'd had lunch with him that afternoon- he was flirting with the SLP who came to check his swallowing. We had a conversation about my sister's earlier visit (spoiler alert: she died in 1994 though the SLP was dazzled by his verbal skills in the context of his swallowing issues) and he ate various textures of goodies from his bag of Chik-Fil-A for the SLP. 

I regret that he didn't have a chance to get hospice services. I think he could have benefitted from the extra attention (it was just mom and me visiting with dad's brother doing a drive-by every 6 weeks or so). I know the staff at the MCF would have benefited from the bath attendant twice weekly. I feel like my mom could have benefited from a chaplain and someone besides me looking in on her after dad died. 

HB

MN Chickadee

My view is if your LO qualifies for hospice take it. It just means more services for her and for you. The team of nurses, social workers, chaplains etc are available to her with her comfort as their top priority. They look for significant weight loss with a dementia diagnosis to be admitted. If something comes up that you want to treat that hospice doesn't you can always take her off hospice. Some people bounce back and forth a bit. Most of the things that hospice would not treat I also would not want my mother treated for. Too much to put her through when she has a terminal diagnosis and is nearing the end anyway. You might feel better just talking to a couple hospice agencies, I have found them extremely helpful and kind when I was doing my research.

mommyandme (m&m)

Hospice could just be another level of support for your mom and you.  It is not a death sentence.  My mom has been on hospice for one year now, they are wonderful.  

Call for an evaluation, it can’t hurt and could definitely help.

Jeansdtr

Thank you everyone for your knowledge and gentle encouragement.  My mom has been admitted to Hospice in the nursing home 1 week ago.  I know it is the correct choice.  Her quality of life is poor.  She doesn't know us anymore, and although she continues to talk up a storm to people that are in her mind, her words are mumbled and it is only once in a while she'll respond appropriately to people who interact with her.  She continues to require assist of 2 for mobility and her foods need to be pureed.  Focusing on quality of life instead of quantity. I will visit every day as it brings me comfort to sit with her.  I pray when she passes it is peaceful and she is comfortable.

ButterflyWings

Jeans - I am happy for your and your mom that hospice care is in place. They have been a blessing for us in multiple ways. Praying with you, that however long she is in this stage or the next one(s) is peaceful and as comfortable as possible. Its seems you and the NH team are seeing to that. 

The hospice team has a commitment to caregivers as well, so please do check in with the social worker and/or team nurse/coordinator to see what they can suggest for you as you deal with the effects of your LO's disease too.