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

[Anonymous]

Unfortunately, the rules for hospice are sort of ridiculous. For example, you can't be on both dialysis and hospice (unless kidney failure is not the primary hospice diagnosis). So dialysis patients rarely use hospice unless they choose to quit dialysis at which point they are expected to die very soon anyway.

[Anonymous]

Anonymous wrote:Hospice is for people who have 6 months or less to live and they agree to forgo and life extending therapies. Plus, they do not go to their doctors, they only see the Hospice doctors/nurses. Hospice has to okay all outside doctor’s visits.

My experience was with my mother in coastal NC and here in NOVA with my father. Both were in home and the Hospice was skeletal. We saw the nurse once a week and the social worker came about every other week- for 30 minutes to an hour. The doctor came once a month. The bather came twice a week (could have been 3x) for 30 minutes. What worked best was the equipment they brought in (rented) - a bed, a toilet chair, a soft cushion for a push chair (he had one so that was not provided) and some supplies for wound care. In NC, they moved my mother to their facility 24 hours before she died. Here, my father died in our home.

My FIL also had hospice in PA - it was delivered in a similar skeletal manor at his assisted living facility- but they also provided someone to come and sit with him 4 hours at a time several times a week. This was not available here or in NC.

Not true. My mother was in hospice for 3 years. A very slowing dementia decline.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Hospice is for people who have 6 months or less to live and they agree to forgo and life extending therapies. Plus, they do not go to their doctors, they only see the Hospice doctors/nurses. Hospice has to okay all outside doctor’s visits.

My experience was with my mother in coastal NC and here in NOVA with my father. Both were in home and the Hospice was skeletal. We saw the nurse once a week and the social worker came about every other week- for 30 minutes to an hour. The doctor came once a month. The bather came twice a week (could have been 3x) for 30 minutes. What worked best was the equipment they brought in (rented) - a bed, a toilet chair, a soft cushion for a push chair (he had one so that was not provided) and some supplies for wound care. In NC, they moved my mother to their facility 24 hours before she died. Here, my father died in our home.

My FIL also had hospice in PA - it was delivered in a similar skeletal manor at his assisted living facility- but they also provided someone to come and sit with him 4 hours at a time several times a week. This was not available here or in NC.

Not true. My mother was in hospice for 3 years. A very slowing dementia decline.

Then you had an unethical hospice as if she improves or just regular dementia, in MD they wouldn't qualify. Dementia is not a qualifying criteria.

[Anonymous]

Anonymous wrote:

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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.

One needs to be very careful with Do Not Resuscitate forms. They can evoke a “do nothing no matter what” from caregivers, when what they are supposed to do is prevent extraordinary measures if the person arrests.

Case in point: elderly patient with slow kidney failure; kidney failure led to fluid buildup and difficulty breathing; standard treatment was to hospitalize briefly, use diuretics, get patient stable and send home. On one occasion, as soon as the ambulance crew saw the DNR wristband they questioned why the patient wanted to go to the hospital at all. Diuretics are not an extraordinary measure.

You need to make sure that the MOLST reflects what the patient and family want and see it. We had a doctor fill it out and sign it without our knowledge and it was not what anyone wanted.

There's a big difference between a DNR and assisted suicide. I am certain that the Washington Home nurse considers what she did to my sister to be assisted suicide (which is not legal in DC to the best of my knowledge), but my sister did not want that at all, so what she really did was kill her. They are very very lucky I didn't call the police. It's several years later and I think about it every single day. She almost died alone. The nurse administered a lethal dose of morphine, then left--when I got there, she was unconscious and her horrible boyfriend was vaccuming the aparment. Within 20 minutes of my arrival, she took her last breath. We had plans in place so she wouldn't die alone and that hospice nurse who killed her could not have cared less. I might add, the hospice care before the lethal does of morphine was given to my sister against her will was beyond inadequate. A nurse visit once a week. That was it. She was under hospice care for only about 5 weeks before the nurse did what she did. Looking back, I'm not suprised that organization did what they did to The Washington Home patients they had removed in order to sell their facility to an elite private school either.

I suspect that happens to more people than not.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

One needs to be very careful with Do Not Resuscitate forms. They can evoke a “do nothing no matter what” from caregivers, when what they are supposed to do is prevent extraordinary measures if the person arrests.

Case in point: elderly patient with slow kidney failure; kidney failure led to fluid buildup and difficulty breathing; standard treatment was to hospitalize briefly, use diuretics, get patient stable and send home. On one occasion, as soon as the ambulance crew saw the DNR wristband they questioned why the patient wanted to go to the hospital at all. Diuretics are not an extraordinary measure.

You need to make sure that the MOLST reflects what the patient and family want and see it. We had a doctor fill it out and sign it without our knowledge and it was not what anyone wanted.

This assumes anybody will actually read the document, including ambulance people, etc., which is in no way guaranteed. Once they see the armband they assume they know what it means and act accordingly.