Stage 4 esophageal adenocarcinoma: When is it time for hospice?

@elizabethgorecki014, you and your mom have been through a lot. You ask a very important question. When is enough enough? When it is time to consider hospice and when, as a caregiver, do you continue to be the advocate, fighting for options?

Those choices will range widely from patient to patient and from family to family. And sometimes a patient and family may not immediately agree. The one thing that is important is to talk AND to listen. Keep the lines of communication open. Medical circumstances may change for better or for worse, giving the situation more clarity.

Palliative care may be the logical next step. While palliative care is often associated with end of life care, it is different from hospice. It focuses on symptom management and comfort. This might be a good next step for you and your mom. The palliative care team can help with pain and other treatment complications. They also have social workers who are specially trained in helping families navigate these crossroads in care.

Is your mom in the care of a palliative care team? How is she doing now? How are YOU doing?

Has her physician indicated that he believes she has six months or less to live? Hospice care availability is dependent on this as an entry criteria. And as Colleen has written palliative care can be very useful to you both and help with an easy transition to hospice if she becomes eligible and wants it
What is your mother saying she wants?

This was not at Mayo. I wanted him to go there.

My brother had stage 4 esophageal cancer. He had Barrett’s esophagus too yet his primary care failed to follow up and later cancer metastasized to skull,ribs and liver. They pushed FOLFOX which did not help, actually made him weaker to fight.He was hospitalized with a PE and a very kind doctor took me aside and said he needed hospice as chemo treatment is a cost center they will keep trying and he is suffering too much.

I wish I had listened to her. Later he told me he was going crazy with strange visions and dreams. Then I called him and he was not coherent. I called emergency and they gave me a choice of brain surgery ( the brain was now involved and not just the skull) or end of life hospice.

I remember the chemo oncologist getting mad that hospice was suggested for their patient.

Had I done hospice earlier he may have had better care through his treatment and comfort could have given him more time. We couldn’t sort out how to relieve his pain.

He was not able to have pain meds delivered and lived alone so would drag himself to the pharmacy to get his meds and refused to come to my home for care.

By the time I got to hospital after the emergency pickup he was out as they had tried to calm him and though we talked to him he never communicated again.

I feel hospice needs to change to allowing treatments when the patient is comfortable if possible.

@kathibean

The hospice Medicare benefit will not allow treatments whose function is curative. Hospice is strictly for patients whose physician states they have 6 months or less to live and are not still seeking curative procedures. There is a place in that benefit for things like using radiation but only for comfort care.
That said a patient can easily exit hospice for curative procedures and then reenter hospice when they meet hospice Medicare guidelines.
That is why palliative care is so great.

@elizabethgorecki014, I am sorry to hear about your mom. Have you tried Imerman Angels? They match up cancer patients who have the same cancer and same stage as one another. It really helped me a lot to be able to talk to a real person who had the same cancer as I had. It might take a few weeks to find a match. https://imermanangels.org.

I hope this helps

This is an excellent idea! I wish I’d known for my brother.