What were the benefits of going on hospice?

[Anonymous]

I have an ailing father who several doctors have recommended hospice for but my mother doesn't want to because he will likely become ineligible for an expensive medication that improves his quality of life. He is on Medicare.

Currently we have a caregiver coming four hours during the day plus all night. My mother does the caregiving otherwise. He is in lots of pain, on oxygen, trouble breathing, cannot walk, etc.

I'm wondering if anyone could share concretely what kind of benefits they were afforded by switching to hospice. Was it a big help? An improvement in quality of life? Better pain management? If it matters, we are in Montgomery County, Md.
Thanks!

[Anonymous]

NOT MUCH and it means you can't go see your old doctors most of the time!

Stay away from hospice until you are within weeks of dying.

My dad got two nurses visits a week and a twice weekly CNA bed bath. It was NOT WORTH losing his doctors.

[Anonymous]

We had medication and pain management, bathing and grooming help and guidance for us. We used Montgomery hospice. Try one and if you don’t like it you can terminate with them. You can self refer online.

[Anonymous]

Anonymous wrote:NOT MUCH and it means you can't go see your old doctors most of the time!

Stay away from hospice until you are within weeks of dying.

My dad got two nurses visits a week and a twice weekly CNA bed bath. It was NOT WORTH losing his doctors.

We kept our same doctors.

[Anonymous]

Anonymous wrote:NOT MUCH and it means you can't go see your old doctors most of the time!

Stay away from hospice until you are within weeks of dying.

My dad got two nurses visits a week and a twice weekly CNA bed bath. It was NOT WORTH losing his doctors.

Also - look into palliative care. Not all areas have good palliative care, but it means you can get pain relief and care at home sometimes and still get to go to your old doctors.

[Anonymous]

Anonymous wrote:

Anonymous wrote:NOT MUCH and it means you can't go see your old doctors most of the time!

Stay away from hospice until you are within weeks of dying.

My dad got two nurses visits a week and a twice weekly CNA bed bath. It was NOT WORTH losing his doctors.

We kept our same doctors.

That doesnt make sense. They are no longer allowed to treat you once you are in hospice. Hospice fired my dads doctors and made us use the hospice doctor who LITERALLY NEVER MET HIM OR EVEN DID A VIDEO VISIT.

[Anonymous]

Anonymous wrote:We had medication and pain management, bathing and grooming help and guidance for us. We used Montgomery hospice. Try one and if you don’t like it you can terminate with them. You can self refer online.

Yes you can terminate but then you will have to re establish relationships with the old doctors and it might take months to get new patient appointments

[Anonymous]

If I were in lots of pain on oxygen could not walk and had trouble breathing (assuming. No hope of recovery). I would want pain relief. It does not sound like that medication is providing much quality of life! Hospice kept my Dad comfortable till the end. We were grateful for that

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:NOT MUCH and it means you can't go see your old doctors most of the time!

Stay away from hospice until you are within weeks of dying.

My dad got two nurses visits a week and a twice weekly CNA bed bath. It was NOT WORTH losing his doctors.

We kept our same doctors.

That doesnt make sense. They are no longer allowed to treat you once you are in hospice. Hospice fired my dads doctors and made us use the hospice doctor who LITERALLY NEVER MET HIM OR EVEN DID A VIDEO VISIT.

Yes they can. They are limited on meds and procedures and tests but they can still treat.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:NOT MUCH and it means you can't go see your old doctors most of the time!

Stay away from hospice until you are within weeks of dying.

My dad got two nurses visits a week and a twice weekly CNA bed bath. It was NOT WORTH losing his doctors.

We kept our same doctors.

That doesnt make sense. They are no longer allowed to treat you once you are in hospice. Hospice fired my dads doctors and made us use the hospice doctor who LITERALLY NEVER MET HIM OR EVEN DID A VIDEO VISIT.

You had a bad provider. Who did you use?

[Anonymous]

Anonymous wrote:If I were in lots of pain on oxygen could not walk and had trouble breathing (assuming. No hope of recovery). I would want pain relief. It does not sound like that medication is providing much quality of life! Hospice kept my Dad comfortable till the end. We were grateful for that

OP here, really appreciate all the feedback! There is definitely no hope of recovery here. The medication is ofev and it's for pulmonary fibrosis. I think if he went off it, it would make breathing even more difficult than it already is. I'm wondering logistically why hospice doctors would be able to provide better pain relief than regular doctors though. Are hospice doctors just more willing to provide morphine because there is less of a liability issue?

[Anonymous]

Better pain relief (IV narcotics, which we couldn't get or administer ourselves), catheter, hospital bed.

[Anonymous]

Anonymous wrote:

Anonymous wrote:If I were in lots of pain on oxygen could not walk and had trouble breathing (assuming. No hope of recovery). I would want pain relief. It does not sound like that medication is providing much quality of life! Hospice kept my Dad comfortable till the end. We were grateful for that

OP here, really appreciate all the feedback! There is definitely no hope of recovery here. The medication is ofev and it's for pulmonary fibrosis. I think if he went off it, it would make breathing even more difficult than it already is. I'm wondering logistically why hospice doctors would be able to provide better pain relief than regular doctors though. Are hospice doctors just more willing to provide morphine because there is less of a liability issue?

My father got regular morphine injections with hospice. They told us morphine made breathing easier. He never struggled to breathe..he just stopped.

[Anonymous]

If you aren’t ready for hospice look for palliative care. They will focus more on comfort.

How old is your dad? Have you asked him what he wants? What’s his quality of life? Positive of hospice is the nurse comes to you and you no longer have to go to the doctors office. You can also look for providers that do home visits even if you dont want hospice. Just sort of depends on what your dad wants his final years to look like. I felt like the frequent hospitalizations, blood draws etc to be torture for my parents prior to enrolling in hospice.

Both my parents were on hospice and we had a good experience. Instead of fighting the inevitable, we focused on comfort. GL

[Anonymous]

Anonymous wrote:

Anonymous wrote:If I were in lots of pain on oxygen could not walk and had trouble breathing (assuming. No hope of recovery). I would want pain relief. It does not sound like that medication is providing much quality of life! Hospice kept my Dad comfortable till the end. We were grateful for that

OP here, really appreciate all the feedback! There is definitely no hope of recovery here. The medication is ofev and it's for pulmonary fibrosis. I think if he went off it, it would make breathing even more difficult than it already is. I'm wondering logistically why hospice doctors would be able to provide better pain relief than regular doctors though. Are hospice doctors just more willing to provide morphine because there is less of a liability issue?

They don't remove all medications. Talk to hospice before you rule it out. Hospice care really varies by the provider and team you get. We never used morphine. It was prescribed but used.