When is right time for hospice?

[Anonymous]

Good hospice care often assists the patient - in the patient determining if they are ready or near ready to accept the end. I would bring-in hospice sooner rather than later. The patient needs the emotional support, and this is their training.

[Anonymous]

I didn't read everything, but as others have said, hospice is no longer just end of life care - although my dad with dementia did pass away within 6 months of starting hospice care. My mom's one regret is that she didn't involve hospice sooner. What sent her over the edge was the endless doctor's appointments. Once hospice is involved, the nurse comes to you, discusses care plan, orders medications, etc.

It is not too soon to reach out to hospice. My thoughts are with you.

[Anonymous]

Anonymous wrote:I didn't read everything, but as others have said, hospice is no longer just end of life care - although my dad with dementia did pass away within 6 months of starting hospice care. My mom's one regret is that she didn't involve hospice sooner. What sent her over the edge was the endless doctor's appointments. Once hospice is involved, the nurse comes to you, discusses care plan, orders medications, etc.

It is not too soon to reach out to hospice. My thoughts are with you.

Yes but no specialists.

[Anonymous]

Anonymous wrote:Parent is entering the sixth or seventh stage of dementia, which I think is considered an end stage disease.

While reviewing parent's advance directive, I see they did not want medications and medical interventions at a certain point. My question is that I don't know what that point would be and assume a doctor would indicate when the right time is to withdraw medicartions. Is it now when they are in the final stages of this disease, or does that come later when they can no longer eat...?

In the case of my now-deceased parent, hospice was started with parent would not eat. But then they'd start eating again. The situation is not linear and, therefore, was confusing to all of us in the family.

Is this something I need to discuss with the primary care doctor?

It's really a personal choice and I would speak with the social worker. My late mother who had early onset dementia was on hospice for 3 years before she passed which means she received their services and my sister and I got the extra support. Closer to the end they provided morphine and other measures to ensure her comfort/reduced distress.

[Anonymous]

Anonymous wrote:Look for a hospice organization that's been around for a while, preferably a nonprofit. There's a lot of fraud in signing up people in LTC facilities.

LTC facilities are not hospice care.

[Anonymous]

Anonymous wrote:As soon as they let you (I mean the drs or hospice people or whoever makes those decisions)

Most people wait until its far too late or the family member dies the next day.

[Anonymous]

OP, I didn’t read all of the responses, but what you were probably looking for is a consult for palliative care. This is similar but distinctly different from hospice care.

[Anonymous]

Anonymous wrote:OP, I didn’t read all of the responses, but what you were probably looking for is a consult for palliative care. This is similar but distinctly different from hospice care.

Oh, you are right. I did not know there was a difference.

I can’t get the assisted living to request this. At least, they have not let me know so far if they have requested it. I assume they have not.

Do I ask the doctor for this?

OP

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP, I didn’t read all of the responses, but what you were probably looking for is a consult for palliative care. This is similar but distinctly different from hospice care.

Oh, you are right. I did not know there was a difference.

I can’t get the assisted living to request this. At least, they have not let me know so far if they have requested it. I assume they have not.

Do I ask the doctor for this?

OP

Yes. My understanding is that a doc (usually the PCP) needs to refer to Palliative Care. I’m currently working on this for my dad but he and my stepmom
are reluctant to add another provider when he’s seeing so many already. My understanding is that the palliative care doc can help them assess what is actually necessary so maybe he can get off the endless merry go round of doctor appointments and specialists.

[Anonymous]

Anonymous wrote:Parent is entering the sixth or seventh stage of dementia, which I think is considered an end stage disease.

While reviewing parent's advance directive, I see they did not want medications and medical interventions at a certain point. My question is that I don't know what that point would be and assume a doctor would indicate when the right time is to withdraw medicartions. Is it now when they are in the final stages of this disease, or does that come later when they can no longer eat...?

In the case of my now-deceased parent, hospice was started with parent would not eat. But then they'd start eating again. The situation is not linear and, therefore, was confusing to all of us in the family.

Is this something I need to discuss with the primary care doctor?

Medicare rules are 6 months or less of life.

[Anonymous]

We self referred to hospice in Maryland. (twice.)

Hospice pulls and reviews the medical records. Hospice will send an RN out to see your loved one. I think the hospice MD ultimately decides if your loved one qualifies.

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP, I didn’t read all of the responses, but what you were probably looking for is a consult for palliative care. This is similar but distinctly different from hospice care.

Oh, you are right. I did not know there was a difference.

I can’t get the assisted living to request this. At least, they have not let me know so far if they have requested it. I assume they have not.

Do I ask the doctor for this?

OP

If your loved one is living and walking in assisted living and eating then they probably do not qualify.

[Anonymous]

There are US government guidelines for this.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP, I didn’t read all of the responses, but what you were probably looking for is a consult for palliative care. This is similar but distinctly different from hospice care.

Oh, you are right. I did not know there was a difference.

I can’t get the assisted living to request this. At least, they have not let me know so far if they have requested it. I assume they have not.

Do I ask the doctor for this?

OP

If your loved one is living and walking in assisted living and eating then they probably do not qualify.

They don't walk anymore, but they do eat.

On the one hand, people here say families wait to long to call hospice. On the other hand, I am not a doctor and don't know what is appropriate. Even a doctor can't actually predict a person will die in six months. You never really know unless they are in active dying.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP, I didn’t read all of the responses, but what you were probably looking for is a consult for palliative care. This is similar but distinctly different from hospice care.

Oh, you are right. I did not know there was a difference.

I can’t get the assisted living to request this. At least, they have not let me know so far if they have requested it. I assume they have not.

Do I ask the doctor for this?

OP

If your loved one is living and walking in assisted living and eating then they probably do not qualify.

They don't walk anymore, but they do eat.

On the one hand, people here say families wait to long to call hospice. On the other hand, I am not a doctor and don't know what is appropriate. Even a doctor can't actually predict a person will die in six months. You never really know unless they are in active dying.

As someone said on another thread, of course AL has an incentive to keep ordering up their meds and taking their money regardless of QOL.