Even in a state like New York with massive healthcare systems, the vast majority of people I speak with do not have a clear (or sometimes any) understanding of what palliative care and hospice services actually do.
I am a retired RN , and the experiences I have professionally are varied. (I will spare you the details here, and will share our experience during my mother's transition.)
The hospital I worked for finally established a palliative care department in the last few years before I retired, but you still heard very little about it. It definitely was never mentioned or offered during any of my mother's multiple hospitalizations, not that she would have taken to the suggestion well. To her it would just have been next door to "being put out to pasture," which is what she and her siblings all used to describe hospice. "They give up on you. They pull the plug." And by golly she was not in favor of that, ever, until her last hospitalization in 2017 during which she deteriorated significantly physically and mentally. (Hashimoto's encephalopathy was one of her diagnoses by a neurologist no one else in charge of her care agreed with, her cardiologist just said "it's her age and her poor vascular health and she needs to go to a nursing home." And that was in 2016. Thank you drug interactions.)
After she was moved to long term care in early 2018, she refused to eat. The staff kept asking what she liked, and they would offer her those things, but she still wouldn't eat, saying "I don't know why they are worried about my weight. I'm fine." They all thought it was dementia, I knew it was her life long tendency to start with. Dementia just took away her ability to acknowledge that she needed to eat more, even if she didn't have any appetite. She was adamant all along about "NO TUBES!" I asked the home's social worker about hospice, at the same time as we were tying to figure out other legal things since Mom also had refused to sign a DPOA while she was still lucid; I could never convince her that as long as she still wanted everything done for resuscitation, I would abide by her wishes. (She did finally say she did not wish to have CPR or be resuscitated when she went in the hospital that last admission.)
So, even though I was aware of services, I was in a rock and a hard place due to the legal issues. The skilled facility did consult hospice, and my mom informed me during one of my visits "that was a hard pill to swallow." But she did not decline the service at that point, since the staff did stress to her she would still receive her medications, nothing would be changing in her care, they wanted to support her in every way possible.
What was difficult for me was when I would read the EOB's from Medicare about what was done for her that Medicare refused to pay for. One example was having her toenails trimmed by a podiatrist that visited the facility. Reason for the decline in payment: "not a required end of life service." Apparently providing comfort for painful toenails isn't considered necessary. (I never did receive a bill however.)
The hospice staff provided support to me and to my mother's "boyfriend " (she used the term gentleman friend) for those last 4-1/2 months which was invaluable. The day my mother passed, her nurse at the skilled facility happened to be a nurse I had worked with many times over the years at the hospital; she worked float pool and I frequently got floated from my home units. She had taken care of Mother many times those last few months and it was rather a full circle moment. The hospice nurse had kept in touch, but also had another client declining the same day so she wasn't able to be present until after Mom passed. (Just the nature of timing.) Since my mom had not been active directly with a church, I asked the hospice chaplain if he could do her funeral service since he and George (our friend) had established a relationship. He could and he did.
All of this to say that it is a rocky road to navigate these decisions and ask for support, even for professionals. Our society has become so hyper focused on cure and fix that accepting the inevitable is seen as "giving up." Family dynamics often override professional knowledge.
Shauna, I had to read and re-read your response several times to fully appreciate what you and mom went through.
First of all, thank you for being brave enough to share such a heart wrenching story.
I wish I could say that situations such as what mom went through is rare, but unfortunately it’s more of the norm than the exception.
I cannot agree enough with you that we can spend ludicrous amounts of money buying time with invasive surgeries and expensive medications, but something that is so basic, pertaining to one’s dignity and quality of life such as cutting of the toenails is seen as unnecessary and unrelated to end of life care. By the way, I suspect you never received a bill because the hospice organization (which is paid a daily lump sum per patient by Medicare, as you may know) decided to just absorb the cost rather than bill you for that.
If I only had a magic wand.
And my gosh, yeah, the misunderstanding of how palliative care and hospice may be of help when one’s life is near its end.
For far too long people have “dropped off a cliff” when it comes to receiving healthcare after doctors decide there is nothing more medically that can/should be done.
As I noted, palliative care remains, in my opinion, a specialty in its infancy.
Things are improving slowly and steadily, but there are still definitely tons of gaps and misconceptions everywhere.
At my own institution, I have witnessed first-hand how our clinicians began utilizing us more as they realized we provide so much benefit to their patient care.
In my opinion, understanding the dying process (specifically in the USA) is the first step towards realizing a peaceful, dignified, and supported death.
Most people want to die in their sleep without unnecessary pain and suffering, but the currently reality is few ever fulfill that wish.
I hope to continue to help inform and demystify the process, in case my writing ends up reaching someone in need of this information.
Thank you for what you do. Very few docs seem to be as involved as you are. Locally it is, as you say in your article, an "easy" assignment and way to make money. It was the staff with "boots on the ground" who lifted us and helped us in so many ways. The physician who was the "staff" physician for the skilled facility never reached out to me personally, and I am pretty sure he utilized his licensed midlevel providers to do the monthly Medicare visit. He might have seen my mother once when she first came to the facility. I was still working full time then so arranging/notifying me of the times for some of these visits just didn't happen. Far too much need and far too few docs available.
I am a retired RN , and the experiences I have professionally are varied. (I will spare you the details here, and will share our experience during my mother's transition.)
The hospital I worked for finally established a palliative care department in the last few years before I retired, but you still heard very little about it. It definitely was never mentioned or offered during any of my mother's multiple hospitalizations, not that she would have taken to the suggestion well. To her it would just have been next door to "being put out to pasture," which is what she and her siblings all used to describe hospice. "They give up on you. They pull the plug." And by golly she was not in favor of that, ever, until her last hospitalization in 2017 during which she deteriorated significantly physically and mentally. (Hashimoto's encephalopathy was one of her diagnoses by a neurologist no one else in charge of her care agreed with, her cardiologist just said "it's her age and her poor vascular health and she needs to go to a nursing home." And that was in 2016. Thank you drug interactions.)
After she was moved to long term care in early 2018, she refused to eat. The staff kept asking what she liked, and they would offer her those things, but she still wouldn't eat, saying "I don't know why they are worried about my weight. I'm fine." They all thought it was dementia, I knew it was her life long tendency to start with. Dementia just took away her ability to acknowledge that she needed to eat more, even if she didn't have any appetite. She was adamant all along about "NO TUBES!" I asked the home's social worker about hospice, at the same time as we were tying to figure out other legal things since Mom also had refused to sign a DPOA while she was still lucid; I could never convince her that as long as she still wanted everything done for resuscitation, I would abide by her wishes. (She did finally say she did not wish to have CPR or be resuscitated when she went in the hospital that last admission.)
So, even though I was aware of services, I was in a rock and a hard place due to the legal issues. The skilled facility did consult hospice, and my mom informed me during one of my visits "that was a hard pill to swallow." But she did not decline the service at that point, since the staff did stress to her she would still receive her medications, nothing would be changing in her care, they wanted to support her in every way possible.
What was difficult for me was when I would read the EOB's from Medicare about what was done for her that Medicare refused to pay for. One example was having her toenails trimmed by a podiatrist that visited the facility. Reason for the decline in payment: "not a required end of life service." Apparently providing comfort for painful toenails isn't considered necessary. (I never did receive a bill however.)
The hospice staff provided support to me and to my mother's "boyfriend " (she used the term gentleman friend) for those last 4-1/2 months which was invaluable. The day my mother passed, her nurse at the skilled facility happened to be a nurse I had worked with many times over the years at the hospital; she worked float pool and I frequently got floated from my home units. She had taken care of Mother many times those last few months and it was rather a full circle moment. The hospice nurse had kept in touch, but also had another client declining the same day so she wasn't able to be present until after Mom passed. (Just the nature of timing.) Since my mom had not been active directly with a church, I asked the hospice chaplain if he could do her funeral service since he and George (our friend) had established a relationship. He could and he did.
All of this to say that it is a rocky road to navigate these decisions and ask for support, even for professionals. Our society has become so hyper focused on cure and fix that accepting the inevitable is seen as "giving up." Family dynamics often override professional knowledge.
Shauna, I had to read and re-read your response several times to fully appreciate what you and mom went through.
First of all, thank you for being brave enough to share such a heart wrenching story.
I wish I could say that situations such as what mom went through is rare, but unfortunately it’s more of the norm than the exception.
I cannot agree enough with you that we can spend ludicrous amounts of money buying time with invasive surgeries and expensive medications, but something that is so basic, pertaining to one’s dignity and quality of life such as cutting of the toenails is seen as unnecessary and unrelated to end of life care. By the way, I suspect you never received a bill because the hospice organization (which is paid a daily lump sum per patient by Medicare, as you may know) decided to just absorb the cost rather than bill you for that.
If I only had a magic wand.
And my gosh, yeah, the misunderstanding of how palliative care and hospice may be of help when one’s life is near its end.
For far too long people have “dropped off a cliff” when it comes to receiving healthcare after doctors decide there is nothing more medically that can/should be done.
As I noted, palliative care remains, in my opinion, a specialty in its infancy.
Things are improving slowly and steadily, but there are still definitely tons of gaps and misconceptions everywhere.
At my own institution, I have witnessed first-hand how our clinicians began utilizing us more as they realized we provide so much benefit to their patient care.
In my opinion, understanding the dying process (specifically in the USA) is the first step towards realizing a peaceful, dignified, and supported death.
Most people want to die in their sleep without unnecessary pain and suffering, but the currently reality is few ever fulfill that wish.
I hope to continue to help inform and demystify the process, in case my writing ends up reaching someone in need of this information.
Again, thank you for sharing you and mom’s story.
Thank you for what you do. Very few docs seem to be as involved as you are. Locally it is, as you say in your article, an "easy" assignment and way to make money. It was the staff with "boots on the ground" who lifted us and helped us in so many ways. The physician who was the "staff" physician for the skilled facility never reached out to me personally, and I am pretty sure he utilized his licensed midlevel providers to do the monthly Medicare visit. He might have seen my mother once when she first came to the facility. I was still working full time then so arranging/notifying me of the times for some of these visits just didn't happen. Far too much need and far too few docs available.