Hospice for not terminally ill parent

[Anonymous]

Anonymous wrote:Hi OP. I’m so sorry you are having to make this decision. It’s never easy. I work for hospice. Start with her doctor. Tell the doctor that you believe her pain and anxiety are not well-controlled, and ask about Hospice care. A doctor needs to affirm that the illness (dementia), assuming it follows a typical course, is likely to result in death within six months. That doesn’t mean the patient will die in six months. Doctors recert as long as the patient does not improve. For a 90 year old, it shouldn’t be difficult to get.

Know this - Hospice absolutely will not hasten death. They also won’t prolong it. It’s all about palliative care - comfort care. But never about speeding up the natural dying process. We keep patients calm and comfortable and simply allow death to occur naturally. Having said that, hospice won’t force feedings or fluids. No feeding tubes or IVs (with the rare exception). No treatments for the Illness. We just manage symptoms. Some of my patients have been in our inpatient facility for over two years. I have home hospice patients that I’ve been seeing for over a year. When death is near, a patient’s body begins to shut down. They are no longer hungry so they stop eating. They are no longer thirsty so they stop drinking. This is usually really hard on families because they assume their loved one is starving. In reality, they are dying and the body has no need for food anymore.

State laws and insurance vary. A hospice social worker in your state can talk you through that. I’m an interfaith hospice chaplain and am happy to answer any questions. I know this is hard.

“Know this - Hospice absolutely will not hasten death.”

Maybe yours won’t. There are plenty that will.

Example: a patient told as a condition of hospice to stop antibiotics because those are “care,” ignoring that the symptoms of infection are miserable and lead to unnecessary suffering, such that the same antibiotics actually are palliative. But that’s OK. Morphine and a quick departure solve everything.

It is a scandal what the well-intentioned hospice movement has become in many instances.

[Anonymous]

Anonymous wrote:I'm 15:09. Do not, do not mention that you want to hasten the end. That is illegal.

If she qualifies (in Maryland) you will get a box of drugs and one will be morphine which will hasten the end.

There’s a word for “hastening the end.”

It’s spelled M-U-R-D-E-R.

[Anonymous]

Anonymous wrote:Need a dx from doctor of 6 months or less expected life span.

That’s not accurate. I currently provide home health services to a 95 year old woman with congestive heart failure who is on hospice and has been for well over six months. She could die tomorrow, or she could live another year or two.

In the six years I’ve been doing this work, I’ve cared for a number of elderly and younger terminal patients on hospice - they were all on a DNR status, but did not have definitive life expectancy of six months or less.

Maybe you are thinking of the criteria for physician assisted suicide? That requires, in some places where it is legal, a definitive six month terminal diagnosis. But of course the funny thing is, doctors don’t know this with any certainty - terminally ill people sometimes die much sooner, and sometimes last much longer. I cared for one elderly man who was on hospice of over two years before a respiratory infection finally did him in.

OP you should contact hospice services in your area and have the conversation. If you parent wishes to be DNR status and has progressive dementia and other issues, they likely would qualify. Hospice services are wonderful in many instances, they provide so much support to the patient and the family.

[Anonymous]

Ugh just read the rest of the thread.

No, hospice won’t kill your parent for you. Morphine is only provided to patients with certain illnesses, like cancer, that involve constant unremitting pain. There has been a crackdown on pain meds since the opioid epidemic, even in the hospice setting. The drugs are very carefully monitored - every hospice assignment I’ve worked over the last six years involved an audit of morphine or other opioids at every shift change. The hospice agency is usually very militant about this.

Yes in the history of medicine patients have been eased out by larger doses of morphine, but those are patients hours or at most days from death. Most medical professionals would never admit to having done this because it is illegal and in some views unethical - in any case a facility would fire anyone admitting to having done it, and the licensing board would expel them from the profession.

I’m sorry for your parent’s predicament and yours. Dementia is awful because the patient cannot make a rational choice to end their life. I’ve worked with a few very elderly patients who were cognitively intact and they made the conscious choice to stop taking meds, food and water - except moisture on their lips and tongue to ease discomfort. Death happens fairly quickly if a person stops eating and drinking, especially a frail person. Contrary to common misconception, fasting isn’t painful after the first day or two- folks who have done fasting for religious or cleansing purposes know this. It’s not a terrible way to go but a patient with dementia would not be able to make a conscious choice to go this way.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Need a dx from doctor of 6 months or less expected life span.

That’s not accurate. I currently provide home health services to a 95 year old woman with congestive heart failure who is on hospice and has been for well over six months. She could die tomorrow, or she could live another year or two.

In the six years I’ve been doing this work, I’ve cared for a number of elderly and younger terminal patients on hospice - they were all on a DNR status, but did not have definitive life expectancy of six months or less.

Maybe you are thinking of the criteria for physician assisted suicide? That requires, in some places where it is legal, a definitive six month terminal diagnosis. But of course the funny thing is, doctors don’t know this with any certainty - terminally ill people sometimes die much sooner, and sometimes last much longer. I cared for one elderly man who was on hospice of over two years before a respiratory infection finally did him in.

OP you should contact hospice services in your area and have the conversation. If you parent wishes to be DNR status and has progressive dementia and other issues, they likely would qualify. Hospice services are wonderful in many instances, they provide so much support to the patient and the family.

No, I’m thinking of hospice. My parent was able to get hospice services when the doctor said she had less than 6 months left. It does not mean that they will die within 6 months, in fact my parent lived for another year. It means that the doctor can say that is the expected result. Obviously they can never know for sure.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Hi OP. I’m so sorry you are having to make this decision. It’s never easy. I work for hospice. Start with her doctor. Tell the doctor that you believe her pain and anxiety are not well-controlled, and ask about Hospice care. A doctor needs to affirm that the illness (dementia), assuming it follows a typical course, is likely to result in death within six months. That doesn’t mean the patient will die in six months. Doctors recert as long as the patient does not improve. For a 90 year old, it shouldn’t be difficult to get.

Know this - Hospice absolutely will not hasten death. They also won’t prolong it. It’s all about palliative care - comfort care. But never about speeding up the natural dying process. We keep patients calm and comfortable and simply allow death to occur naturally. Having said that, hospice won’t force feedings or fluids. No feeding tubes or IVs (with the rare exception). No treatments for the Illness. We just manage symptoms. Some of my patients have been in our inpatient facility for over two years. I have home hospice patients that I’ve been seeing for over a year. When death is near, a patient’s body begins to shut down. They are no longer hungry so they stop eating. They are no longer thirsty so they stop drinking. This is usually really hard on families because they assume their loved one is starving. In reality, they are dying and the body has no need for food anymore.

State laws and insurance vary. A hospice social worker in your state can talk you through that. I’m an interfaith hospice chaplain and am happy to answer any questions. I know this is hard.

“Know this - Hospice absolutely will not hasten death.”

Maybe yours won’t. There are plenty that will.

Example: a patient told as a condition of hospice to stop antibiotics because those are “care,” ignoring that the symptoms of infection are miserable and lead to unnecessary suffering, such that the same antibiotics actually are palliative. But that’s OK. Morphine and a quick departure solve everything.

It is a scandal what the well-intentioned hospice movement has become in many instances.

It is hard to draw the line sometimes. At what point is a treatment extending natural life or lack of treatment allowing natural death. There are people who believe that stopping anything will prematurely kill someone and other feel that it is allowing a natural death. Going into hospice usually means the person up giving up those treatments that may extend their life. This is not killing them.

[Anonymous]

Anonymous wrote:OP. What I am looking for is for something to hasten parent to the end. They are in assisted living, on an anti-depressant, regular visits from family, lots of options for meals and activities. But....
Cannot enjoy life at all, unsafe without walker, doesn't participate in any activities, repeats the same complaints about the other residents, staff, over and over, is more demented each week (at this point only knows name, and lives in AL, but disoriented to date/year/time of day, more delusional). Being treated for UTI, but still not getting better mentally. Incontinent--and fighting wearing "diapers"--this has been going on for years. Anyway, if pain was an issue, Hospice can give narcs until you lapse into a coma and pass. So, honestly, parent needs a merciful end.
It's a shame we have spend our last years in such a state. I don't know.

Have they had their sugar levels tested? High sugar levels can also make dementia worse.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Hi OP. I’m so sorry you are having to make this decision. It’s never easy. I work for hospice. Start with her doctor. Tell the doctor that you believe her pain and anxiety are not well-controlled, and ask about Hospice care. A doctor needs to affirm that the illness (dementia), assuming it follows a typical course, is likely to result in death within six months. That doesn’t mean the patient will die in six months. Doctors recert as long as the patient does not improve. For a 90 year old, it shouldn’t be difficult to get.

Know this - Hospice absolutely will not hasten death. They also won’t prolong it. It’s all about palliative care - comfort care. But never about speeding up the natural dying process. We keep patients calm and comfortable and simply allow death to occur naturally. Having said that, hospice won’t force feedings or fluids. No feeding tubes or IVs (with the rare exception). No treatments for the Illness. We just manage symptoms. Some of my patients have been in our inpatient facility for over two years. I have home hospice patients that I’ve been seeing for over a year. When death is near, a patient’s body begins to shut down. They are no longer hungry so they stop eating. They are no longer thirsty so they stop drinking. This is usually really hard on families because they assume their loved one is starving. In reality, they are dying and the body has no need for food anymore.

State laws and insurance vary. A hospice social worker in your state can talk you through that. I’m an interfaith hospice chaplain and am happy to answer any questions. I know this is hard.

NP. This is really helpful to hear. Thank you for all you do.

I would love if you'd do an AMA sometime. Are there any books about the end of life or hospice that you'd recommend, to help demystify?

And OP - I am so sorry you're going through this. It's so kind of you to try to help your parent be more comfortable and happy.

When I get home, I’ll post some of the books I have that I really like. I’ve had the honor of being present during many, many transitions. To me, death is very much like birth.

[Anonymous]

A DNR order can include antibiotics so the UTi will bring about sepsis and that may help. You can still give palliative morphine so it isn't too painful.
At least in Maryland.

[Anonymous]

What is within her control is VSED. Is that something she wants?

[Anonymous]

Anonymous wrote:OP. What I am looking for is for something to hasten parent to the end. They are in assisted living, on an anti-depressant, regular visits from family, lots of options for meals and activities. But....
Cannot enjoy life at all, unsafe without walker, doesn't participate in any activities, repeats the same complaints about the other residents, staff, over and over, is more demented each week (at this point only knows name, and lives in AL, but disoriented to date/year/time of day, more delusional). Being treated for UTI, but still not getting better mentally. Incontinent--and fighting wearing "diapers"--this has been going on for years. Anyway, if pain was an issue, Hospice can give narcs until you lapse into a coma and pass. So, honestly, parent needs a merciful end.
It's a shame we have spend our last years in such a state. I don't know.

OP, I think it's hard for many people to see their parents like this, and I'm sure many people experiencing it would not choose it for themselves. But wanting to hasten an elderly person's death is illegal.

Do you have a therapist or support group you can talk to about your feelings?

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP. What I am looking for is for something to hasten parent to the end. They are in assisted living, on an anti-depressant, regular visits from family, lots of options for meals and activities. But....
Cannot enjoy life at all, unsafe without walker, doesn't participate in any activities, repeats the same complaints about the other residents, staff, over and over, is more demented each week (at this point only knows name, and lives in AL, but disoriented to date/year/time of day, more delusional). Being treated for UTI, but still not getting better mentally. Incontinent--and fighting wearing "diapers"--this has been going on for years. Anyway, if pain was an issue, Hospice can give narcs until you lapse into a coma and pass. So, honestly, parent needs a merciful end.
It's a shame we have spend our last years in such a state. I don't know.

OP, I think it's hard for many people to see their parents like this, and I'm sure many people experiencing it would not choose it for themselves. But wanting to hasten an elderly person's death is illegal.

Do you have a therapist or support group you can talk to about your feelings?

No WANTING to hasten a death is not illegal. Doing it would be illegal, but not wanting it. Geez.

[Anonymous]

can they go off their BP meds? Also did you read this? Your parent is likely too far gone for this, but it is an interesting read

https://www.nytimes.com/2022/02/27/books/in-love-amy-bloom.html

[Anonymous]

Don't get them a flu shot next season.

[Anonymous]

Anonymous wrote:A DNR order can include antibiotics so the UTi will bring about sepsis and that may help. You can still give palliative morphine so it isn't too painful.
At least in Maryland.

My sister and I have talked about this option for our mom. She's in her late 80s and her quality of life is pretty miserable after a stroke. She has no terminal conditions and her chain smoking mother and grandmother lived to almost 100. She asks us repeatedly why she isn't allowed to just die, like right now. I have read that a UTI is often one of the last conditions listed on someone's chart.

Has anyone heard of a family's experience with this?