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

[Anonymous]

Hospice is wonderful, but my friend was unable to get it for his dad last month. They were looking at roughly a week. They need a recent COVID test. It could not be done in the time frame.

[Anonymous]

I'm the 19:25 poster. I found enrollment in Maryland was fast and easy. I called hospice at behest of my sister. Hospice RN came out within 2 business days. Hospice RN had electronically pulled Mom's records. Hospice RN came out and talked for about 15 minutes while Mom was sitting at the table and Mom was enrolled.

Mom was still walking her little dog a 1/2 mile a day. It is amazing she was even admitted.

[Anonymous]

My relative was in hospice in Maryland. We were grateful for the help they provided. They were monitoring the pain medication and regularly visiting our relative at the facility to ensure she was comfortable.

The thing is, the last few months I was going to the facility daily and checking on her pain patch. Some days I went twice daily. I tried to time my visits with the time the pain patches were replaced. I had gone to visit her one time when she was in severe pain because somehow, the new pain patch had gone missing, and the facility said they could not provide a replacement because of legal restrictions. Some random woman had begun visiting my relative. She gave a song and dance on how she knew my relative, but I was suspicious. That was neither here nor there, but the fact that one pain patch went missing was enough for me to go paranoid. I discussed blocking this woman from visiting my relative with the facility. However, we all agreed that her visits were enjoyed by my relative, so I opted to monitor relative's level of comfort very closely.

When hospice entered the picture, they were in a position to ensure she had pain medication available at all times, even if a pain patch "went missing." I don't think that happened beyond the one incident. Hospice monitoring gave me huge relief, although I continued the close monitoring, as the end was getting near. My poor relative no longer had much of any interest in anything. I realize the pain medication might have shortened her life somewhat, but what's the point of enduring pain that will not end in this lifetime? Hospice was a godsend in her case. I wish we had signed up for it sooner, while we could have moved her to the beautiful hospice facility before it was too late, where she would have had sunshine spilling over her bed every day, with beautiful views outside.

[Anonymous]

Hospice gave my MIL a better quality of live vs the nursing home alone. They advocated for many things. She got better, they had to pull out and she got sick quickly after and passed.

[Anonymous]

We used Capital Caring Hospice for a parent. They were fine. A little disorganized and it seemed understaffed at times. But they were patient, compassionate, and listeners. The hardest part about hospice is the overwhelming feeling that you are giving up and letting your loved one just die. That was hard to
Deal with because we are so programmed to do whatever we can to fix things and make things better. We really had not come to terms that there was nothing we could do and so the hospice experience was a bit traumatizing for us.

[Anonymous]

Anonymous wrote:We used Capital Caring Hospice for a parent. They were fine. A little disorganized and it seemed understaffed at times. But they were patient, compassionate, and listeners. The hardest part about hospice is the overwhelming feeling that you are giving up and letting your loved one just die. That was hard to
Deal with because we are so programmed to do whatever we can to fix things and make things better. We really had not come to terms that there was nothing we could do and so the hospice experience was a bit traumatizing for us.

Did your family ask about hospice, or did the doctors bring up the subject?

You’re right that we are programmed to try to fix medical problems, but sometimes we reach a point where there’s no good solution. As a daughter, I don’t want to be the one to say it’s time to call in hospice, and my parent won’t really ask questions and seems to be in denial about death.

[Anonymous]

Is the person in the hospital? Usually someone there brings it up. I have yet to hear of a friend have a bad experience with hospice both in the hospital and at home. I know we used it at the hospital and they were just lovely people concerned about the family and making sure our loved one had the right pain medicine. Friends have done it at home and said the people were so nice and helpful. I knew a sweet person who worked at a hospice facility.

[Anonymous]

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.

[Anonymous]

Anonymous wrote:My relative was in hospice in Maryland. We were grateful for the help they provided. They were monitoring the pain medication and regularly visiting our relative at the facility to ensure she was comfortable.

The thing is, the last few months I was going to the facility daily and checking on her pain patch. Some days I went twice daily. I tried to time my visits with the time the pain patches were replaced. I had gone to visit her one time when she was in severe pain because somehow, the new pain patch had gone missing, and the facility said they could not provide a replacement because of legal restrictions. Some random woman had begun visiting my relative. She gave a song and dance on how she knew my relative, but I was suspicious. That was neither here nor there, but the fact that one pain patch went missing was enough for me to go paranoid. I discussed blocking this woman from visiting my relative with the facility. However, we all agreed that her visits were enjoyed by my relative, so I opted to monitor relative's level of comfort very closely.

When hospice entered the picture, they were in a position to ensure she had pain medication available at all times, even if a pain patch "went missing." I don't think that happened beyond the one incident. Hospice monitoring gave me huge relief, although I continued the close monitoring, as the end was getting near. My poor relative no longer had much of any interest in anything. I realize the pain medication might have shortened her life somewhat, but what's the point of enduring pain that will not end in this lifetime? Hospice was a godsend in her case. I wish we had signed up for it sooner, while we could have moved her to the beautiful hospice facility before it was too late, where she would have had sunshine spilling over her bed every day, with beautiful views outside.

Interesting. My friend also encountered the "missing pain patch" situation with her mother under hospice in a Florida nursing home.

[Anonymous]

Does the parent want hospice?

[Anonymous]

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.

[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.

It depends on the state and hospice. This isn't exactly true. We were in a nursing home and they came and bathed and helped us advocate but we were not allowed to use hospice doctors despite us wanting to and had to use the facility ones. You stop therapies but they absolutely can see doctors and that part of the post makes no sense. It is often more to support the family more than the patient.

My MIL wasn't eating much and had weight loss which was enough to trigger hospice so I called and brought them. They pulled out once her quality of life improved as they helped a lot... then she went down quickly and died a few weeks later.

[Anonymous]

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.

[Anonymous]

Anonymous wrote:I'm the 19:25 poster. I found enrollment in Maryland was fast and easy. I called hospice at behest of my sister. Hospice RN came out within 2 business days. Hospice RN had electronically pulled Mom's records. Hospice RN came out and talked for about 15 minutes while Mom was sitting at the table and Mom was enrolled.

Mom was still walking her little dog a 1/2 mile a day. It is amazing she was even admitted.

In MD, I applied online and like you said it was a few days to come out and a few days to get started. But, they pulled out and it took a few weeks to get them back in and my MIL died before they could really help.

[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.

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.