Anonymous wrote:My mother who had dementia was on hospice for 3 years.
Anonymous wrote:Anonymous wrote:There’s a fine line between “palliative” care and “healing” care. If a given condition is causing pain, discomfort or distress, it should be ameliorated even if that can only be done at a hospital. There’s also a fine line between letting nature take its course and hurrying things along. Not everybody in the end of life business is as sensitive as they should be to those distinctions.
You just revealed that you have no real experience or training in hospice care.
No, the hospice patient doesn’t go to the hospital - PERIOD. Pain, discomfort and distress are treated in situ at the hospice facility or in the home if they are in home based hospice. Provision of morphine for these issues is standard in hospice care. Hospice patients DO NOT GO TO THE HOSPITAL BECAUSE THEY DO NOT WISH TO DIE IN THE HOSPITAL. Period.
I have been working hospice for 8 years now. I have had a number of elderly patients who were on hospice status for more than a year before passing away, it is not unusual because unlike hospice patients with cancer or some other terminal illness, they can take a long time to succumb to CHF or whatever other end of life issues they are suffering from.
Anonymous wrote:Anonymous wrote:Anonymous wrote:Anonymous wrote:There’s a fine line between “palliative” care and “healing” care. If a given condition is causing pain, discomfort or distress, it should be ameliorated even if that can only be done at a hospital. There’s also a fine line between letting nature take its course and hurrying things along. Not everybody in the end of life business is as sensitive as they should be to those distinctions.
You just revealed that you have no real experience or training in hospice care.
No, the hospice patient doesn’t go to the hospital - PERIOD. Pain, discomfort and distress are treated in situ at the hospice facility or in the home if they are in home based hospice. Provision of morphine for these issues is standard in hospice care. Hospice patients DO NOT GO TO THE HOSPITAL BECAUSE THEY DO NOT WISH TO DIE IN THE HOSPITAL. Period.
I have been working hospice for 8 years now. I have had a number of elderly patients who were on hospice status for more than a year before passing away, it is not unusual because unlike hospice patients with cancer or some other terminal illness, they can take a long time to succumb to CHF or whatever other end of life issues they are suffering from.
My loved one was in hospice care for the first time in at least a year. They pulled out as she improved because of their support and they could not justify it to medicare any longer. As soon as they pulled out, she declined quickly and passed (we tried to bring them back but by the time they got set up again she passed). End of life looks different for everyone. We initially thought it was the end but it was quality of care that was initially the issue. I wish she passed in a hospital as she would have gotten better care.
She might have gotten better medical care at a hospital but she was probably more comfortable at home (if that's where she was). My mom has spent a LOT of time in hospitals, like weeks and months at a time, and it's horrible. Much better at home, if that's where your loved one was. Don't beat yourself up.
Anonymous wrote:Anonymous wrote:Anonymous wrote:There’s a fine line between “palliative” care and “healing” care. If a given condition is causing pain, discomfort or distress, it should be ameliorated even if that can only be done at a hospital. There’s also a fine line between letting nature take its course and hurrying things along. Not everybody in the end of life business is as sensitive as they should be to those distinctions.
You just revealed that you have no real experience or training in hospice care.
No, the hospice patient doesn’t go to the hospital - PERIOD. Pain, discomfort and distress are treated in situ at the hospice facility or in the home if they are in home based hospice. Provision of morphine for these issues is standard in hospice care. Hospice patients DO NOT GO TO THE HOSPITAL BECAUSE THEY DO NOT WISH TO DIE IN THE HOSPITAL. Period.
I have been working hospice for 8 years now. I have had a number of elderly patients who were on hospice status for more than a year before passing away, it is not unusual because unlike hospice patients with cancer or some other terminal illness, they can take a long time to succumb to CHF or whatever other end of life issues they are suffering from.
My loved one was in hospice care for the first time in at least a year. They pulled out as she improved because of their support and they could not justify it to medicare any longer. As soon as they pulled out, she declined quickly and passed (we tried to bring them back but by the time they got set up again she passed). End of life looks different for everyone. We initially thought it was the end but it was quality of care that was initially the issue. I wish she passed in a hospital as she would have gotten better care.
Anonymous wrote:Anonymous wrote:There’s a fine line between “palliative” care and “healing” care. If a given condition is causing pain, discomfort or distress, it should be ameliorated even if that can only be done at a hospital. There’s also a fine line between letting nature take its course and hurrying things along. Not everybody in the end of life business is as sensitive as they should be to those distinctions.
You just revealed that you have no real experience or training in hospice care.
No, the hospice patient doesn’t go to the hospital - PERIOD. Pain, discomfort and distress are treated in situ at the hospice facility or in the home if they are in home based hospice. Provision of morphine for these issues is standard in hospice care. Hospice patients DO NOT GO TO THE HOSPITAL BECAUSE THEY DO NOT WISH TO DIE IN THE HOSPITAL. Period.
I have been working hospice for 8 years now. I have had a number of elderly patients who were on hospice status for more than a year before passing away, it is not unusual because unlike hospice patients with cancer or some other terminal illness, they can take a long time to succumb to CHF or whatever other end of life issues they are suffering from.
Anonymous wrote:There’s a fine line between “palliative” care and “healing” care. If a given condition is causing pain, discomfort or distress, it should be ameliorated even if that can only be done at a hospital. There’s also a fine line between letting nature take its course and hurrying things along. Not everybody in the end of life business is as sensitive as they should be to those distinctions.
Anonymous wrote:Anonymous wrote:Hi OP. I am a hospice chaplain. I've worked in hospice for almost 20 years. I'm happy to answer any questions you have, non-medical of course. In order for a patient to qualify for hospice care, a physician must certify that given a normal progression of the disease, death is likely within 6 months. That does not mean the patient will die in six months. Doctors can re-certifiy every six months assuming the patient continues to decline. I've seen people on hospice for three years or more.
There are signs that occur when a patient begins the active dying process. They will stop eating and drinking. They aren't hungry or thirsty. Our bodies know how to die. We don't need food or liquids once we start dying. Pushing fluids can actually cause a lot of discomfort in a dying patient. Another sign is sleep. Patients begin to sleep most of the time. Sometimes they can be awakened, but for the most part they are sleeping. Breathing changes. Skin color changes. They may begin seeing deceased loved ones.
The reason they don't want you to go to the ER is because once a patient is on Hospice, we take over. If pain is not being controlled or your dad seems anxious, you'll call your hospice nurse. We don't want patients to deal with the trauma of an ER visit. It's just not necessary. Most patients want to die at home, but that's not always possible. If caring for your dad becomes difficult at home, he can be transferred to an inpatient facility.
Hospice care is about living, not death. We want patients to be as comfortable as possible so that they can spend time with the people that they love. I think our doctors, nurses, pharmacists, and CNAs do an amazing job of getting and keeping patients comfortable. Hospice is a team effort. You'll have all the medical folks involved plus social workers, grief counselors, chaplains, and volunteers. Please let them help. Take advantage of the resources available. Oftentimes Hospice care is a marathon, not a sprint.
I'm sorry about your dad. It's hard to lose a loved one no matter how old they are. Wishing you peace as you begin this journey.
OP here - thank you for this. My father is actually in memory care at an ALF. My mother lives at the ALF in an independent apartment, so she gets to see him frequently. I and my siblings unfortunately do not live locally and are managing this remotely for the most part. I have a full time job and school-aged children which makes it difficult. I appreciate you illuminating that it is a multi-faceted team effort. We're just getting started on this process, and don't know how much time we have left to fully engage on all of these services but I appreciate the information.
Anonymous wrote:Hi OP. I am a hospice chaplain. I've worked in hospice for almost 20 years. I'm happy to answer any questions you have, non-medical of course. In order for a patient to qualify for hospice care, a physician must certify that given a normal progression of the disease, death is likely within 6 months. That does not mean the patient will die in six months. Doctors can re-certifiy every six months assuming the patient continues to decline. I've seen people on hospice for three years or more.
There are signs that occur when a patient begins the active dying process. They will stop eating and drinking. They aren't hungry or thirsty. Our bodies know how to die. We don't need food or liquids once we start dying. Pushing fluids can actually cause a lot of discomfort in a dying patient. Another sign is sleep. Patients begin to sleep most of the time. Sometimes they can be awakened, but for the most part they are sleeping. Breathing changes. Skin color changes. They may begin seeing deceased loved ones.
The reason they don't want you to go to the ER is because once a patient is on Hospice, we take over. If pain is not being controlled or your dad seems anxious, you'll call your hospice nurse. We don't want patients to deal with the trauma of an ER visit. It's just not necessary. Most patients want to die at home, but that's not always possible. If caring for your dad becomes difficult at home, he can be transferred to an inpatient facility.
Hospice care is about living, not death. We want patients to be as comfortable as possible so that they can spend time with the people that they love. I think our doctors, nurses, pharmacists, and CNAs do an amazing job of getting and keeping patients comfortable. Hospice is a team effort. You'll have all the medical folks involved plus social workers, grief counselors, chaplains, and volunteers. Please let them help. Take advantage of the resources available. Oftentimes Hospice care is a marathon, not a sprint.
I'm sorry about your dad. It's hard to lose a loved one no matter how old they are. Wishing you peace as you begin this journey.
Anonymous wrote:Hi OP. I am a hospice chaplain. I've worked in hospice for almost 20 years. I'm happy to answer any questions you have, non-medical of course. In order for a patient to qualify for hospice care, a physician must certify that given a normal progression of the disease, death is likely within 6 months. That does not mean the patient will die in six months. Doctors can re-certifiy every six months assuming the patient continues to decline. I've seen people on hospice for three years or more.
There are signs that occur when a patient begins the active dying process. They will stop eating and drinking. They aren't hungry or thirsty. Our bodies know how to die. We don't need food or liquids once we start dying. Pushing fluids can actually cause a lot of discomfort in a dying patient. Another sign is sleep. Patients begin to sleep most of the time. Sometimes they can be awakened, but for the most part they are sleeping. Breathing changes. Skin color changes. They may begin seeing deceased loved ones.
The reason they don't want you to go to the ER is because once a patient is on Hospice, we take over. If pain is not being controlled or your dad seems anxious, you'll call your hospice nurse. We don't want patients to deal with the trauma of an ER visit. It's just not necessary. Most patients want to die at home, but that's not always possible. If caring for your dad becomes difficult at home, he can be transferred to an inpatient facility.
Hospice care is about living, not death. We want patients to be as comfortable as possible so that they can spend time with the people that they love. I think our doctors, nurses, pharmacists, and CNAs do an amazing job of getting and keeping patients comfortable. Hospice is a team effort. You'll have all the medical folks involved plus social workers, grief counselors, chaplains, and volunteers. Please let them help. Take advantage of the resources available. Oftentimes Hospice care is a marathon, not a sprint.
I'm sorry about your dad. It's hard to lose a loved one no matter how old they are. Wishing you peace as you begin this journey.