I’m considering hospice care for an elderly parent in declining health. Any advice?

[Anonymous]

We’re in NoVA. I’d like to hear from those who have been through the process. At what point did you decide to go with hospice care vs active treatment of an illness or disease?

[Anonymous]

Talk to their doctor. You have to qualify for hospice - meaning the patient has to meet certain criteria that put their life expectancy at 6 months or less. That is complicated for patients with advanced dementia or Alzheimers, for example. Also be aware that hospice can be a visiting service or there are residential 'hospice homes.' My dad had hospice care during his final months in a skilled nursing facility and they were truly wonderful. Their sole mission was to enhance his comfort. In that setting, hospice was not a substitute for nursing care.

[Anonymous]

When there is a huge decline and they meet criteria. Medicare fully pays so get the support.

[Anonymous]

Hospice workers are angels that walk on earth. Never heard anyone regret use by them but some have regretted not using them sooner. Did not wait until other medical people say last days are here. Use them earlier. They help
Prepare the patient and family for death

[Anonymous]

Be careful to ensure that the hospice in question is committed to maintaining life until natural death. Some hospices deny antibiotics for otherwise non-life-threatening conditions, even if the antibiotics will prevent the patient from feeling lousy, on grounds that that is somehow against the hospice model. There have also been other hospice is hurrying people along with pain medicine administered without regard to a patient’s particular need at any given time. Hospice is supposed to be about a dignified end, not the bums rush.

[Anonymous]

Anonymous wrote:Be careful to ensure that the hospice in question is committed to maintaining life until natural death. Some hospices deny antibiotics for otherwise non-life-threatening conditions, even if the antibiotics will prevent the patient from feeling lousy, on grounds that that is somehow against the hospice model. There have also been other hospice is hurrying people along with pain medicine administered without regard to a patient’s particular need at any given time. Hospice is supposed to be about a dignified end, not the bums rush.

It sounds like you’ve had a bad experience with a loved-one in hospice. What company?

[Anonymous]

Anonymous wrote:Hospice workers are angels that walk on earth. Never heard anyone regret use by them but some have regretted not using them sooner. Did not wait until other medical people say last days are here. Use them earlier. They help
Prepare the patient and family for death

Ditto this. My dad decided to go into hospice. I talked to a hospice nurse and told her the hospital was urging him to stay one more day because it was a Sunday. She said "Give him the option and if he wants out, I'll get him home today." She was just so calm and focused and direct and amazing. I did give him the option and he chose to stay one more day at the hospital while we set up hospice at home. He died that day and didn't make it home but the fact that he could have and that conversation gave me so much peace. I just didn't know what to do or how to navigate.

[Anonymous]

Hospice workers are incredible. We regretted not doing it earlier for my grandfather. Is your family member able to weigh in on what they would like?

[Anonymous]

Anonymous wrote:Hospice workers are incredible. We regretted not doing it earlier for my grandfather. Is your family member able to weigh in on what they would like?

Yes, but I think if I encourage hospice care, it will be viewed as me “giving up”, or that I don’t want to do more caregiving. Although competent, I don’t think my relative has come to terms with mortality. Over the last few months, there’s been a big decline in functioning, and several hospitalizations. There are multiple terminal conditions involved, so I don’t think it will be difficult to qualify.

I would have thought a doctor or nurse, or someone would have talked to him about hospice by now, but no. I’ve mentioned it to my relative, but the conversation needs to come from a medical professional rather than me. My relative is very deferential to doctors and will take their recommendations over mine.

[Anonymous]

Anonymous wrote:Hospice workers are incredible. We regretted not doing it earlier for my grandfather. Is your family member able to weigh in on what they would like?

Did you use a local agency? Recommendations would be appreciated.

[Anonymous]

Hospice care is the most compassionate thing anyone can provide for a loved on. They ensure that your family member is as comfortable as possible-spiritually, physically, emotionally etc. Hospice was a godsend to me and my family when mother was terminally ill with dementia. Some think hospice can only last for 6 months although my mother was on hospice care for 3 years.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Hospice workers are incredible. We regretted not doing it earlier for my grandfather. Is your family member able to weigh in on what they would like?

Yes, but I think if I encourage hospice care, it will be viewed as me “giving up”, or that I don’t want to do more caregiving. Although competent, I don’t think my relative has come to terms with mortality. Over the last few months, there’s been a big decline in functioning, and several hospitalizations. There are multiple terminal conditions involved, so I don’t think it will be difficult to qualify.

I would have thought a doctor or nurse, or someone would have talked to him about hospice by now, but no. I’ve mentioned it to my relative, but the conversation needs to come from a medical professional rather than me. My relative is very deferential to doctors and will take their recommendations over mine.

PP again, hospice is not giving up, but it is declining invasive procedures that often worsen quality of life. It is a way of improving a persons quality of life and dignity.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Be careful to ensure that the hospice in question is committed to maintaining life until natural death. Some hospices deny antibiotics for otherwise non-life-threatening conditions, even if the antibiotics will prevent the patient from feeling lousy, on grounds that that is somehow against the hospice model. There have also been other hospice is hurrying people along with pain medicine administered without regard to a patient’s particular need at any given time. Hospice is supposed to be about a dignified end, not the bums rush.

It sounds like you’ve had a bad experience with a loved-one in hospice. What company?

NP here, but my sister received horrible hospice care and the hospice nurse, in collusion with my sister's boyfriend, absolutely administered a lethal dose of morphine weeks before my sister would have died a natural death. I know her care got difficult for her boyfriend, but she did not believe the choice for death was in her hands. Nonetheless, on one of her more difficult mornings, he and the hospice nurse took that choice away, without leaving her family the opportuity to say goodbye, Fortunately, I spent every afternoon and evening with her in the end, so I got there about 20 minutes before she took her last breath. The service was what was then known as Washington Home and Community Hospice, which you may know was so horribly managed by their board of directors that they had to sell their facility and kick terminally ill patients to the curb. Horrible experience. I don't know what entity they even exist as now, and I couldn't say that the behavior of the nurse that day represents all hospice nurses, but it certainly alerted me to what PP references above. My sister's boyfriend tried to talk my sister in taking this "emergency kit" for weeks, so I know this is what happened. I contemplated for quite some time calling the police on that nurse. But I knew it wouldn't bring my sister back.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Hospice workers are incredible. We regretted not doing it earlier for my grandfather. Is your family member able to weigh in on what they would like?

Yes, but I think if I encourage hospice care, it will be viewed as me “giving up”, or that I don’t want to do more caregiving. Although competent, I don’t think my relative has come to terms with mortality. Over the last few months, there’s been a big decline in functioning, and several hospitalizations. There are multiple terminal conditions involved, so I don’t think it will be difficult to qualify.

I would have thought a doctor or nurse, or someone would have talked to him about hospice by now, but no. I’ve mentioned it to my relative, but the conversation needs to come from a medical professional rather than me. My relative is very deferential to doctors and will take their recommendations over mine.

Doctors make a lot of money off people near the end of life. That’s probably why they don’t mention hospice to patients, because hospice reduces hospitalizations and medical procedures that are unlikely to heal or cure the patient.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Be careful to ensure that the hospice in question is committed to maintaining life until natural death. Some hospices deny antibiotics for otherwise non-life-threatening conditions, even if the antibiotics will prevent the patient from feeling lousy, on grounds that that is somehow against the hospice model. There have also been other hospice is hurrying people along with pain medicine administered without regard to a patient’s particular need at any given time. Hospice is supposed to be about a dignified end, not the bums rush.

It sounds like you’ve had a bad experience with a loved-one in hospice. What company?

NP here, but my sister received horrible hospice care and the hospice nurse, in collusion with my sister's boyfriend, absolutely administered a lethal dose of morphine weeks before my sister would have died a natural death. I know her care got difficult for her boyfriend, but she did not believe the choice for death was in her hands. Nonetheless, on one of her more difficult mornings, he and the hospice nurse took that choice away, without leaving her family the opportuity to say goodbye, Fortunately, I spent every afternoon and evening with her in the end, so I got there about 20 minutes before she took her last breath. The service was what was then known as Washington Home and Community Hospice, which you may know was so horribly managed by their board of directors that they had to sell their facility and kick terminally ill patients to the curb. Horrible experience. I don't know what entity they even exist as now, and I couldn't say that the behavior of the nurse that day represents all hospice nurses, but it certainly alerted me to what PP references above. My sister's boyfriend tried to talk my sister in taking this "emergency kit" for weeks, so I know this is what happened. I contemplated for quite some time calling the police on that nurse. But I knew it wouldn't bring my sister back.

My family also had a horrible experience in Maryland. I threw hospice out of the house after 3 weeks. Mom is still with us two years later. In Maryland there is very low barrier to entry for hospice. The hospice nurse got Mom enrolled solely because she had alzheimers (no doctor saw Mom prior to enrollment). Mom was walking 1/2 a mile a day on her own outside when she was admitted. You get this box. I think it contained lorazepam, haldol, and morphine.

I would enroll a loved one only if my loved one was in pain and needed morphine for the pain that PCP could not provide.

I also would try to be at a hospice facility, not at your home.

The local hospital has Mom's MOLST form on file (do not resucitate form). We have Mom's MOLST form (state of Maryland do not resucitate form) prominantly hung in the kitchen.

I could write significantly more. My story would be hard to fathom. I believe that hospice is a risky place for senior citizens and vulnerable adults in Maryland unless the patient is in pain that cannot be treated by PCP and several days from death.