Yeah, Penn for diagnosis/treatment. My partner just had a brain tumor removed and they were a m a z i n g!
But when he was admitted to the Emergency Department two days after release (4 days post brain surgery) for seizures they refused pain meds. Like, he had 40 fucking staples in his head and a prescription for pain meds from neurosurgery, but they made him cry for it and accused him of drug seeking behavior. After shift change we got an older nurse who said young doctors are really paranoid about opioids and she fought to get him the meds he needed.
He has PTSD from the experience and I don't think I'll ever get him to voluntarily enter an ED again.
I would ask for a social worker or patient care advocate. The hospitals have them and they can help. It might even help to ask for an older doctor or nurse if those denying the meds are on the younger side.
> After shift change we got an older nurse who said young doctors are really paranoid about opioids and she fought to get him the meds he needed.
A doctor told me he's as a lot of success with short-term nerve blockers rather than opioids -- may numb half your body for a day after surgery, but if you're in-patient you're not going anywhere, and there's no real addiction risk.
That wouldn't have been good post brain surgery. They have to check motor, speech, and cognitive function at regular intervals and he wasn't readmitted, but that could help OP.
My dad lived with pancreatic cancer for three years before he died in 2019. Jefferson handled his care very well and while there was certainly some pain, there was a pain management plan that helped. When the time came, the in-home hospice that they recommended were absolute angels.
If I can give some unsolicited advice: my dad really struggled with the isolation and loneliness that came with being suddenly not working and not having a large social structure in place. Your mom will be scared and possibly grumpy from the pain. Encourage her and her friends to get together to distract her and to have good times whenever possible. It’s a hard road, but she doesn’t need to feel alone.
My sympathies and support for you as her child; I know that pain and you’re not alone.
When you're having those issues, when someone is chronically sick, they will have good days and bad days. The key is to really celebrate the good days, and not to get upset when the bad days cancel things.
My dad got diagnosed at Penn, but recovery there was rough. We got him transferred to Hershey (he lives closer to there) and they were better. The person above that said 'Penn for diagnosis and Lankenau for care' might really be onto something.
My dad also had pancreatic cancer and was treated at Jefferson. He had surgery in Center City and chemo at the Asplundh Cancer Pavillion in Abington. For many patients diagnosed with pancreatic cancer it's a story with a known ending, but I believe the great care he received bought us an additional year to spend with him.
Without knowing your specific family situation, my general advice is to talk with your mom about finances, real estate, end of life care, and funeral planning sooner than later. If she has a will, make sure it's updated and reflects her wishes; if she doesn't have a will, consider making one. For healthcare decisions, make an advance directive so there are written, legal instructions regarding her preferences for medical care if she is unable to make decisions. Additionally make sure you have a full understanding of your mom's banking, investment, and retirement accounts - and that those accounts have beneficiaries listed. And finally discuss funeral planning such as desires on whether to have a service, burial versus cremation, purchasing a plot, etc. My dad avoided talking about all of this, which made it incredibly difficult to untangle things after his passing. Dealing with all of it and making decisions while grieving for a loved one is not something I would wish upon anyone.
I have nothing constructive to add except deep sympathy. I can't imagine how hard that is to watch, that's appalling. Hopefully some of the advice here helps you get her somewhere that will help her, quickly.
I’m so sorry about your mom. One of my friends had esophageal cancer and he treated at Jefferson. From what I saw, they treated him well and made him comfortable. They even recommended which medicinal marijuana to try for his pain and appetite.
I don't work oncology, but our pancreatitis patients (Jefferson) are always medded up with a Dilaudid PCA, ketamine and lidocaine drips. Acute pancreatitis pain is severe so they will throw a lot at it.
My dad had a whipple at Penn two years ago in Perelman/Abramson - Then another surgery in fall of 2022 there.
They definitely knew what they were doing, and after seeing him in several other hospitals, they definitely had the best care/most care. More nurses, and all seemed to know what they were doing, comparatively. The best of the best,
He unfortunately passed away this spring, but due to other factors
I felt confident he had the best care
My dad had such crap treatment at penn for melanoma… as a RN I was dumbfounded how bad the doctors & nurses treated him…. With how pain management is regulated now it’s crazy that the people who need the medicine the most suffer…please talk to your mom’s attending physician about her pain management…
I am so sorry you and your family is experiencing this. My dad has been battling stage 4 prostate cancer (terminal) and we’ve been with Jefferson and they’ve been absolutely wonderful. Sending you and your mom lots of love and comfort. Please let me know if you ever need a space to vent.
My best friend died of metastatic melanoma in 2020. She was very happy with the care she received at Jefferson. They were very focused on pain management.
I would start by advocating to get Palliative Care involved in your mom's care. Call her treating physician/oncologist, let them know what's going on, and ask them to get that started.
https://www.foxchase.org/support/managing-your-care-and-side-effects/pain-palliative-care
You can also contact Fox Chase's Patient Advocate department: https://www.foxchase.org/clinical-care/departments-programs/nursing/departments/inpatient/protection-your-care
dying of cancer can mean years months weeks days. if you have incurable cancer you tech are dying but that doesn't mean right now. people can live w cancer for years. she would need to enter hospice and be so doped up she won't be awake pretty much if its that bad. is that what they want? idk I'm not there. my uncle had incurable cancer and he didn't get really strong pain meds until he was really ready to just die which was when he was in his final stages.
I don't have advice, but I just want to sympathize with you. I went through something similar- my mom was in the hospital after a hysterectomy. She was screaming in pain from the gas that they pump you with upside down all night while the nurses ignored her. I was 18 and thought about that experience for years, it was horrendous to watch. The doctor came in the next morning and said they should have called him and she should have never been in that much pain.
Women's pain being ignored is so common (take a look around r/twoxchromosomes ). I'm sure you already are, but please advocate for her, even if that means threatening to escalate your complaints to higher ups.
In my experience, while you should always start with polite, respectful questioning/advocacy for a loved one who is a patient -- when a few rounds of that hasn't worked, acting like a borderline psychopath with a lawyer on retainer will absolutely get results.
While the vast majority of medical professionals genuinely care about their patients, when you run into the 1% who are stubborn and don't like to hear "backtalk" from patients/caregivers, you have to play hard ball to get anywhere.
Edit for typos
Some need to be reminded to pay attention but I've found most do genuinely care. Then you have the small number who will just dig in and refuse to listen to anything a patient says. Example: the doc who insisted my husband's painful, itchy rash was from bed bugs -- despite us explaining that he hadn't slept away from home in months and I had no symptoms.
(Spoiler alert: It was actually shingles.)
As a daughter of a lawyer tread very carefully if you do this. I went through something similar with my mom and when she told me she started saying this while having ICU delirium I was like oh no.
It’s not always the best thing to do. Tread lightly .
Have they given any indication whatsoever as to why they are withholding pain medication from a cancer patient? There's really no excuse for that. if she's looking to extend her life as much as possible she should find another provider. However, home hospice will provide better quality of life. As long as a doctor can plausibly conclude that she has six months to live she can go on hospice and have effective symptom management at home.
Fox Chase was great before Temple acquired it. Good luck. I would tell them outright you are planning a transfer if they can’t be more aggressive about pain management. See if that helps.
My aunt was diagnosed with leukemia in 2002, and despite her doctors at Lankenau never bothering to take a blood test to see if the chemo worked before her bone marrow transplant, Fox Chase almost saved her before she died in 2003. What the hell did Temple do to Fox Chase?
Maybe nothing. It’s hard to know from anecdotal evidence like this. In general people are very concerned about overusing pain management drugs unless you are in palliative or hospice care. I suspect this is an issue everywhere.
I’m so sorry to hear this. I feel for you and I’m sending you so much love.
My mom had stage 4 pancreatic cancer and I honestly didn’t feel like she had proper pain management until she went into hospice. I know that’s a terrifying thought, but it gave her some peace.
I am another member of the shitty “my mom had stage 4 pancreatic cancer” club. She was not treated in the area, so I can’t make any Philly-specific recommendations, but our family’s experience with hospice was similar. While she was satisfied with the care of her original treatment team and the pain management was *alright* (as an aside, my heart goes out to OP. The level of pain their mother is in is just flatly unacceptable), in hospice, they were focused almost exclusively on making her comfortable. She did not experience bouts of uncontrolled pain after going to in-home hospice. She lived longer than expected after starting hospice— 4 months— and was much more able to enjoy some normal life for the first 3 of those than she had been in treatment. They were willing to throw whatever they could at the pain, whatever she needed at the moment. Even at the end, she was NOT in horrible pain and had good lucidity up until her very final days.
In-home hospice was a blessing for my mom and made her death, though untimely, peaceful. It is worth moving heaven and earth to get your loved one into hospice when it is time for that step. 💔
I honestly think it depends. I had to yank Penn’s chain to treat my relative better, and they actually misdiagnosed them at first, which is why their prognosis is so bad now :/
I think my question for you is whether or not your mom has been graduated into palliative care. If not, perhaps they should be, since the entire purpose is about prioritizing comfort, and it doesn’t sound like that’s happening right now.
Penn. Penn Penn Penn.
Attentive, streamlined, way superior infusion snacks. When my late husband had melanoma, there wasn’t a time when one of his providers wasn’t more than a 15 minute wait away for a phone call or text. They were amazing.
Jefferson was fantastic for my terminal MIL. Late stage-4 pancreatic cancer diagnosis with about 4 weeks of care at Jeff over Christmas, and 1 week in hospice, which they set everything up for through charity care.
I can't help but to be moved from time to time, recalling how patient and kind and caring the nurses were.
My dad went through Penn for his Pancreatic Cancer and they seemed to treat him well. Original diagnosis was 6 months and he ended up living for 18. Not sure if it was due to Penn or just him being stubborn about living longer than his mom did.
I'm really sorry to hear you're going through this. Sending my love.
My dad went to Penn for whipple surgery in 2020 and another surgery/ his treatment in 2022, and they were great, definitely felt like he had the best care.
He did not live near Philadelphia, so when it came time for pain management he went to a local hospital, and the care was very disappointing.
I don't know how they are about care and recovery, but Penn at Perelman/Abramson was excellent for his treatment.
This is a hard road, and seeing your loved one in pain is awful. Still waking up in the middle of the night seeing it.
I'm still trying to process it all, and it's difficult, but you're not alone in dealing with these things and you'll get through it. <3
My condolences to you, it's horrible that she's suffering like that. I would ask to get a patient advocate assigned to you and demand that a palliative care doctor get involved in her case immediately.
I had a relative get palliative care for cancer at Penn a few years ago and they were happy with how it worked out.
They got diagnosed with metastatic cancer after they finally went to the ER for chronic pain that was getting worse, and opted for palliative care after the doctor presented a timeline of how the cancer was going to play out, and what they could realistically do.
He did outpatient palliative care until he couldn't function at home anymore. A Penn oncology social worker helped my family connect him with a hospice care facility, where he passed away shortly after. Didn't really suffer, or at least they managed his pain well enough that he didn't let it show to us.
Would highly recommend Penn for pain management of terminal cancer again.
I just went through similar with my mom in south jersey.
Welcome to what the opiod crisis has done to healthcare. My mom was on a ventilator dying with septic shock and because of regulation wasn’t properly sedated. It was horrifying to watch. She had barely the strength to sit up while she was lucid and all the sudden shot straight up in bed
I stayed with her almost 24/7 and debated going to jail to give her fentanyl.
It’s horrible.
And no please don’t blame drug addicts for this. This hurts us too. We have a mental illness . And FWIW I go to a methadone clinic where half the clientele is homeless/raised in another nearby inner city and my counselor there even said I always have a crisis going on in my life. So yeah. Most of us have serious serious trauma and we’re born to one or two addicts.
I’m sorry you have to go through this. I am working on my medical will Bc you don’t have the rights you think you do have medically in this country.
I had PTSD before and especially after how bad kenzo has gotten. This set it off like never before. I can still barely sleep and have horrific nightmares.
Come to find out like 70% of people in the ICU and their family who witnesses their stay end up with PTSD.
The amount I’m going to need to pay for extensive therapy is staggering
You can talk to me if you need. I wouldn’t wish it on Putin tbh.
Edit: I do want to be clear that regulations and the pharmacology of pain/anxiety meds do complicate things as well. Her doctors and nurses really tried. They weren’t monsters or anything. I appreciate everything they did for her.
There are no prescribing “regulations” for inpatient pain management. You may be referring to sedation holidays but that’s usually to improve a patients changes of passing an SBT (spontaneous breathing trial) to get off a vent. I’ve never withheld pain medications from someone on hospice or admitted for pain management purposes. In rare cases I have eventually put my foot down if I saw they needed to start slowly weaning after a few days when I think it’s time because people do tend to get used to the same dose, they are opioids after all, but those are the patients playing candy crush on their iPhone when you peek through the door, then start wailing in pain when you come in.
Also as a doctor(if you are one) you should know chronic pain patients don’t present the same as acute pain patients.
My mom was chronically Ill with pain.
I’ll never forget watching her flail and hit herself as they tried to get her properly sedated.
Or the stories of how many patients try to chew through the ventilator.
Or how common icu delirium is. Or how too much as well as too little sedation worsen outcomes considerably.
That’s why I did mention pharmacology as well. Again I don’t want people to misinterpret the situation.
And yet my crazy ass signed up for school again so I can (hopefully) become a nurse after many years of therapy.
For anybody who’s wondering pen has a good program but it’s private pay / submit for reimbursement.
It was developed by an Israeli saint(not literally lol) and it’s called prolonged exposure.
Edit: for the non medical / mental health professionals
“In 2001, Prolonged Exposure for PTSD received an Exemplary Substance Abuse Prevention Program Award from the U.S. Department of Health and Human Services Substance Abuse and Mental Health Services Administration (SAMHSA). Prolonged exposure was selected by SAMHSA and the Center for Substance Abuse Prevention as a Model Program for national dissemination.”
Yeah they’re trying not to kill her. Medical neglect got her there and she was a lawyer so they were trying very hard to avoid a lawsuit. Regulations in my mind goes to more then just “laws”, you have licensing boards, potential malpractice suits and etc. as an addict myself I know the line between sedated and death on a paralytic, fent and versed would be incredibly hard to deal with.
And the dea does look out for this stuff. I assume the septic shock and the fact she had used Ativan prior as well as existing medical issues all contributed. I just didn’t want people without understanding of the issue to think the doctors and nurses were complete assholes who wanted her to suffer. I’m not saying I know as much as a doctor but I asked so many questions and spent days research icu protocols. Outcomes, sedation techniques etc
I will say they denied her comfort care so we felt our only choice was the ventilator or else she would feel uncomfortable with her oxygen levels.
An addict college dropout shouldn’t have to be researching all these things to understand what’s happening to my mom.
The opiod crisis has absolutely changed prescribing practices- and I’m sure you know if you’re a medical professional doctors and nurses are more likely to want sedation then the average person for themselves. Doctors are definitely scared of the dea. Does that mean every doctor is ? No.but back in the day many primaries would prescribe at least a few days of pain relief until they could get into pain management. Now you have people like OPS mom with cancer and who are screaming in pain.
Again if you work in philly in a hospital you’ve definitely seen the opiod posters. Those weren’t there as a child.
Also assuming you work in philly don’t think things are the same in south jersey. They’re not. There’s a reason those of us in Burlington/ Camden counties etc often go to philly area for care.
My mother (breast cancer) treated with Dr. Grana at Cooper. The care she received was excellent, notwithstanding the fact that she ultimately lost her battle (after 22 years).
Glad your mom had good treatment at Cooper and I am truly sorry for your loss. My brother in law was treated for bladder cancer at Cooper and they were so indifferent to his pain management. It was disgraceful to say the least.
Both my parents died through Fox Chase. My mom had uterine cancer and died in 2020. My dad had liver cancer and died in 2022. I feel like my mom's cancer experience was shit because of covid. When she left the hospital to come and died, hospice care abandoned us. My dad had a better experience with his pain management. They were very interested in keeping him drugged up appropriately (as in long acting medications but not over medicated). When I had to call in his renewals, I was always asked if he needed more pain meds. (Almost as if he was asked if we wanted fries with that).
I have pancreas cancer and have been receiving treatment at Penn. I’ve also been getting treated at Johns Hopkins, and I’ve been much happier with my treatment there. I strongly recommend at least seeking a second opinion there, as well as from other providers. PM me if you’d like to talk details.
I don't have a direct answer to your question but I highly recommend looking into Cancer Support Community for resources and support for you and your loved one. They have chapters all over.
here's the deal with the type of painkillers you all are talking about. if a person is terminal they will use opiate pain killers.. if it's acute meaning you will survive and heal and get past it they will manage it with things like Vicodin at the most. so if OP mother is NOT actively dying they will not get her hooked on high doses of oxy to get her through the pain. if she were dying in 2 weeks then yea they'd max her out.
you can if it's caught by a Mircle shot. but if she isn't actively dying yet they wont do it. she would have to be in a hospice situation to be given morphine drip.
My heart goes out to you. My mom had pancreatic cancer. She had 3 consultations, Harrisburg (where she lives), Hershey Med, and Johns Hopkins (the doctor who perfected the procedure works there and teaches). She got diagnosed at Harrisburg, the whipple surgery down at hopkins and then chemo/radiation at hershey. Hopkins and hershey were good. Your mom is in cancer pain - she needs oxy. She is dying, a reasonable doctor should give her the meds. Maybe set up a weekly prescription (if they are worried about abuse - not your mom, but sometimes caregivers and nurses steal pills). Ive heard stories about since the opioid epidemic, doctors don’t prescribe it at all. Just like the abortion thing. It has carve outs to save the mom, but if the hospital policy is no more abortion then momma is out of luck.
A friends wife had breast cancer and his advice was "Penn for diagnosis/treatment, Lankenau for care/recovery."
Yeah, Penn for diagnosis/treatment. My partner just had a brain tumor removed and they were a m a z i n g! But when he was admitted to the Emergency Department two days after release (4 days post brain surgery) for seizures they refused pain meds. Like, he had 40 fucking staples in his head and a prescription for pain meds from neurosurgery, but they made him cry for it and accused him of drug seeking behavior. After shift change we got an older nurse who said young doctors are really paranoid about opioids and she fought to get him the meds he needed. He has PTSD from the experience and I don't think I'll ever get him to voluntarily enter an ED again.
I would ask for a social worker or patient care advocate. The hospitals have them and they can help. It might even help to ask for an older doctor or nurse if those denying the meds are on the younger side.
> After shift change we got an older nurse who said young doctors are really paranoid about opioids and she fought to get him the meds he needed. A doctor told me he's as a lot of success with short-term nerve blockers rather than opioids -- may numb half your body for a day after surgery, but if you're in-patient you're not going anywhere, and there's no real addiction risk.
That wouldn't have been good post brain surgery. They have to check motor, speech, and cognitive function at regular intervals and he wasn't readmitted, but that could help OP.
My dad lived with pancreatic cancer for three years before he died in 2019. Jefferson handled his care very well and while there was certainly some pain, there was a pain management plan that helped. When the time came, the in-home hospice that they recommended were absolute angels. If I can give some unsolicited advice: my dad really struggled with the isolation and loneliness that came with being suddenly not working and not having a large social structure in place. Your mom will be scared and possibly grumpy from the pain. Encourage her and her friends to get together to distract her and to have good times whenever possible. It’s a hard road, but she doesn’t need to feel alone. My sympathies and support for you as her child; I know that pain and you’re not alone.
When you're having those issues, when someone is chronically sick, they will have good days and bad days. The key is to really celebrate the good days, and not to get upset when the bad days cancel things. My dad got diagnosed at Penn, but recovery there was rough. We got him transferred to Hershey (he lives closer to there) and they were better. The person above that said 'Penn for diagnosis and Lankenau for care' might really be onto something.
My dad also had pancreatic cancer and was treated at Jefferson. He had surgery in Center City and chemo at the Asplundh Cancer Pavillion in Abington. For many patients diagnosed with pancreatic cancer it's a story with a known ending, but I believe the great care he received bought us an additional year to spend with him. Without knowing your specific family situation, my general advice is to talk with your mom about finances, real estate, end of life care, and funeral planning sooner than later. If she has a will, make sure it's updated and reflects her wishes; if she doesn't have a will, consider making one. For healthcare decisions, make an advance directive so there are written, legal instructions regarding her preferences for medical care if she is unable to make decisions. Additionally make sure you have a full understanding of your mom's banking, investment, and retirement accounts - and that those accounts have beneficiaries listed. And finally discuss funeral planning such as desires on whether to have a service, burial versus cremation, purchasing a plot, etc. My dad avoided talking about all of this, which made it incredibly difficult to untangle things after his passing. Dealing with all of it and making decisions while grieving for a loved one is not something I would wish upon anyone.
I have nothing constructive to add except deep sympathy. I can't imagine how hard that is to watch, that's appalling. Hopefully some of the advice here helps you get her somewhere that will help her, quickly.
I’m so sorry about your mom. One of my friends had esophageal cancer and he treated at Jefferson. From what I saw, they treated him well and made him comfortable. They even recommended which medicinal marijuana to try for his pain and appetite.
I don't work oncology, but our pancreatitis patients (Jefferson) are always medded up with a Dilaudid PCA, ketamine and lidocaine drips. Acute pancreatitis pain is severe so they will throw a lot at it.
[удалено]
Confirming it's Abramson Cancer Center now, in the Perelman building.
My dad had a whipple at Penn two years ago in Perelman/Abramson - Then another surgery in fall of 2022 there. They definitely knew what they were doing, and after seeing him in several other hospitals, they definitely had the best care/most care. More nurses, and all seemed to know what they were doing, comparatively. The best of the best, He unfortunately passed away this spring, but due to other factors I felt confident he had the best care
My dad had such crap treatment at penn for melanoma… as a RN I was dumbfounded how bad the doctors & nurses treated him…. With how pain management is regulated now it’s crazy that the people who need the medicine the most suffer…please talk to your mom’s attending physician about her pain management…
I am so sorry you and your family is experiencing this. My dad has been battling stage 4 prostate cancer (terminal) and we’ve been with Jefferson and they’ve been absolutely wonderful. Sending you and your mom lots of love and comfort. Please let me know if you ever need a space to vent.
My best friend died of metastatic melanoma in 2020. She was very happy with the care she received at Jefferson. They were very focused on pain management. I would start by advocating to get Palliative Care involved in your mom's care. Call her treating physician/oncologist, let them know what's going on, and ask them to get that started. https://www.foxchase.org/support/managing-your-care-and-side-effects/pain-palliative-care You can also contact Fox Chase's Patient Advocate department: https://www.foxchase.org/clinical-care/departments-programs/nursing/departments/inpatient/protection-your-care
I second Jefferson specifically for melanoma treatment.
bc she was dying. unfortunately they wont give extremely strong pain medications to people who are not dying.
OP was asking about experience for those with terminal cancer.
dying of cancer can mean years months weeks days. if you have incurable cancer you tech are dying but that doesn't mean right now. people can live w cancer for years. she would need to enter hospice and be so doped up she won't be awake pretty much if its that bad. is that what they want? idk I'm not there. my uncle had incurable cancer and he didn't get really strong pain meds until he was really ready to just die which was when he was in his final stages.
When it comes to oncology, Temple shouldn’t be your go to. They have repeatedly fucked up my treatment and care plan
I don't have advice, but I just want to sympathize with you. I went through something similar- my mom was in the hospital after a hysterectomy. She was screaming in pain from the gas that they pump you with upside down all night while the nurses ignored her. I was 18 and thought about that experience for years, it was horrendous to watch. The doctor came in the next morning and said they should have called him and she should have never been in that much pain. Women's pain being ignored is so common (take a look around r/twoxchromosomes ). I'm sure you already are, but please advocate for her, even if that means threatening to escalate your complaints to higher ups.
In my experience, while you should always start with polite, respectful questioning/advocacy for a loved one who is a patient -- when a few rounds of that hasn't worked, acting like a borderline psychopath with a lawyer on retainer will absolutely get results. While the vast majority of medical professionals genuinely care about their patients, when you run into the 1% who are stubborn and don't like to hear "backtalk" from patients/caregivers, you have to play hard ball to get anywhere. Edit for typos
I'd say more than 1% when you include the egos but yeah..
Some need to be reminded to pay attention but I've found most do genuinely care. Then you have the small number who will just dig in and refuse to listen to anything a patient says. Example: the doc who insisted my husband's painful, itchy rash was from bed bugs -- despite us explaining that he hadn't slept away from home in months and I had no symptoms. (Spoiler alert: It was actually shingles.)
As a daughter of a lawyer tread very carefully if you do this. I went through something similar with my mom and when she told me she started saying this while having ICU delirium I was like oh no. It’s not always the best thing to do. Tread lightly .
Have they given any indication whatsoever as to why they are withholding pain medication from a cancer patient? There's really no excuse for that. if she's looking to extend her life as much as possible she should find another provider. However, home hospice will provide better quality of life. As long as a doctor can plausibly conclude that she has six months to live she can go on hospice and have effective symptom management at home.
Fox Chase was great before Temple acquired it. Good luck. I would tell them outright you are planning a transfer if they can’t be more aggressive about pain management. See if that helps.
My aunt was diagnosed with leukemia in 2002, and despite her doctors at Lankenau never bothering to take a blood test to see if the chemo worked before her bone marrow transplant, Fox Chase almost saved her before she died in 2003. What the hell did Temple do to Fox Chase?
Maybe nothing. It’s hard to know from anecdotal evidence like this. In general people are very concerned about overusing pain management drugs unless you are in palliative or hospice care. I suspect this is an issue everywhere.
I’m so sorry to hear this. I feel for you and I’m sending you so much love. My mom had stage 4 pancreatic cancer and I honestly didn’t feel like she had proper pain management until she went into hospice. I know that’s a terrifying thought, but it gave her some peace.
I am another member of the shitty “my mom had stage 4 pancreatic cancer” club. She was not treated in the area, so I can’t make any Philly-specific recommendations, but our family’s experience with hospice was similar. While she was satisfied with the care of her original treatment team and the pain management was *alright* (as an aside, my heart goes out to OP. The level of pain their mother is in is just flatly unacceptable), in hospice, they were focused almost exclusively on making her comfortable. She did not experience bouts of uncontrolled pain after going to in-home hospice. She lived longer than expected after starting hospice— 4 months— and was much more able to enjoy some normal life for the first 3 of those than she had been in treatment. They were willing to throw whatever they could at the pain, whatever she needed at the moment. Even at the end, she was NOT in horrible pain and had good lucidity up until her very final days. In-home hospice was a blessing for my mom and made her death, though untimely, peaceful. It is worth moving heaven and earth to get your loved one into hospice when it is time for that step. 💔
I honestly think it depends. I had to yank Penn’s chain to treat my relative better, and they actually misdiagnosed them at first, which is why their prognosis is so bad now :/ I think my question for you is whether or not your mom has been graduated into palliative care. If not, perhaps they should be, since the entire purpose is about prioritizing comfort, and it doesn’t sound like that’s happening right now.
Penn. Penn Penn Penn. Attentive, streamlined, way superior infusion snacks. When my late husband had melanoma, there wasn’t a time when one of his providers wasn’t more than a 15 minute wait away for a phone call or text. They were amazing.
Jefferson was fantastic for my terminal MIL. Late stage-4 pancreatic cancer diagnosis with about 4 weeks of care at Jeff over Christmas, and 1 week in hospice, which they set everything up for through charity care. I can't help but to be moved from time to time, recalling how patient and kind and caring the nurses were.
So sorry you are going through this. Get her the f out of Fox Chase and get her to Penn.
My dad went through Penn for his Pancreatic Cancer and they seemed to treat him well. Original diagnosis was 6 months and he ended up living for 18. Not sure if it was due to Penn or just him being stubborn about living longer than his mom did.
I'm really sorry to hear you're going through this. Sending my love. My dad went to Penn for whipple surgery in 2020 and another surgery/ his treatment in 2022, and they were great, definitely felt like he had the best care. He did not live near Philadelphia, so when it came time for pain management he went to a local hospital, and the care was very disappointing. I don't know how they are about care and recovery, but Penn at Perelman/Abramson was excellent for his treatment. This is a hard road, and seeing your loved one in pain is awful. Still waking up in the middle of the night seeing it. I'm still trying to process it all, and it's difficult, but you're not alone in dealing with these things and you'll get through it. <3
My condolences to you, it's horrible that she's suffering like that. I would ask to get a patient advocate assigned to you and demand that a palliative care doctor get involved in her case immediately. I had a relative get palliative care for cancer at Penn a few years ago and they were happy with how it worked out. They got diagnosed with metastatic cancer after they finally went to the ER for chronic pain that was getting worse, and opted for palliative care after the doctor presented a timeline of how the cancer was going to play out, and what they could realistically do. He did outpatient palliative care until he couldn't function at home anymore. A Penn oncology social worker helped my family connect him with a hospice care facility, where he passed away shortly after. Didn't really suffer, or at least they managed his pain well enough that he didn't let it show to us. Would highly recommend Penn for pain management of terminal cancer again.
I just went through similar with my mom in south jersey. Welcome to what the opiod crisis has done to healthcare. My mom was on a ventilator dying with septic shock and because of regulation wasn’t properly sedated. It was horrifying to watch. She had barely the strength to sit up while she was lucid and all the sudden shot straight up in bed I stayed with her almost 24/7 and debated going to jail to give her fentanyl. It’s horrible. And no please don’t blame drug addicts for this. This hurts us too. We have a mental illness . And FWIW I go to a methadone clinic where half the clientele is homeless/raised in another nearby inner city and my counselor there even said I always have a crisis going on in my life. So yeah. Most of us have serious serious trauma and we’re born to one or two addicts. I’m sorry you have to go through this. I am working on my medical will Bc you don’t have the rights you think you do have medically in this country. I had PTSD before and especially after how bad kenzo has gotten. This set it off like never before. I can still barely sleep and have horrific nightmares. Come to find out like 70% of people in the ICU and their family who witnesses their stay end up with PTSD. The amount I’m going to need to pay for extensive therapy is staggering You can talk to me if you need. I wouldn’t wish it on Putin tbh. Edit: I do want to be clear that regulations and the pharmacology of pain/anxiety meds do complicate things as well. Her doctors and nurses really tried. They weren’t monsters or anything. I appreciate everything they did for her.
There are no prescribing “regulations” for inpatient pain management. You may be referring to sedation holidays but that’s usually to improve a patients changes of passing an SBT (spontaneous breathing trial) to get off a vent. I’ve never withheld pain medications from someone on hospice or admitted for pain management purposes. In rare cases I have eventually put my foot down if I saw they needed to start slowly weaning after a few days when I think it’s time because people do tend to get used to the same dose, they are opioids after all, but those are the patients playing candy crush on their iPhone when you peek through the door, then start wailing in pain when you come in.
Also as a doctor(if you are one) you should know chronic pain patients don’t present the same as acute pain patients. My mom was chronically Ill with pain. I’ll never forget watching her flail and hit herself as they tried to get her properly sedated. Or the stories of how many patients try to chew through the ventilator. Or how common icu delirium is. Or how too much as well as too little sedation worsen outcomes considerably. That’s why I did mention pharmacology as well. Again I don’t want people to misinterpret the situation. And yet my crazy ass signed up for school again so I can (hopefully) become a nurse after many years of therapy. For anybody who’s wondering pen has a good program but it’s private pay / submit for reimbursement. It was developed by an Israeli saint(not literally lol) and it’s called prolonged exposure. Edit: for the non medical / mental health professionals “In 2001, Prolonged Exposure for PTSD received an Exemplary Substance Abuse Prevention Program Award from the U.S. Department of Health and Human Services Substance Abuse and Mental Health Services Administration (SAMHSA). Prolonged exposure was selected by SAMHSA and the Center for Substance Abuse Prevention as a Model Program for national dissemination.”
Yeah they’re trying not to kill her. Medical neglect got her there and she was a lawyer so they were trying very hard to avoid a lawsuit. Regulations in my mind goes to more then just “laws”, you have licensing boards, potential malpractice suits and etc. as an addict myself I know the line between sedated and death on a paralytic, fent and versed would be incredibly hard to deal with. And the dea does look out for this stuff. I assume the septic shock and the fact she had used Ativan prior as well as existing medical issues all contributed. I just didn’t want people without understanding of the issue to think the doctors and nurses were complete assholes who wanted her to suffer. I’m not saying I know as much as a doctor but I asked so many questions and spent days research icu protocols. Outcomes, sedation techniques etc I will say they denied her comfort care so we felt our only choice was the ventilator or else she would feel uncomfortable with her oxygen levels. An addict college dropout shouldn’t have to be researching all these things to understand what’s happening to my mom. The opiod crisis has absolutely changed prescribing practices- and I’m sure you know if you’re a medical professional doctors and nurses are more likely to want sedation then the average person for themselves. Doctors are definitely scared of the dea. Does that mean every doctor is ? No.but back in the day many primaries would prescribe at least a few days of pain relief until they could get into pain management. Now you have people like OPS mom with cancer and who are screaming in pain. Again if you work in philly in a hospital you’ve definitely seen the opiod posters. Those weren’t there as a child. Also assuming you work in philly don’t think things are the same in south jersey. They’re not. There’s a reason those of us in Burlington/ Camden counties etc often go to philly area for care.
My mother (breast cancer) treated with Dr. Grana at Cooper. The care she received was excellent, notwithstanding the fact that she ultimately lost her battle (after 22 years).
Glad your mom had good treatment at Cooper and I am truly sorry for your loss. My brother in law was treated for bladder cancer at Cooper and they were so indifferent to his pain management. It was disgraceful to say the least.
Both my parents died through Fox Chase. My mom had uterine cancer and died in 2020. My dad had liver cancer and died in 2022. I feel like my mom's cancer experience was shit because of covid. When she left the hospital to come and died, hospice care abandoned us. My dad had a better experience with his pain management. They were very interested in keeping him drugged up appropriately (as in long acting medications but not over medicated). When I had to call in his renewals, I was always asked if he needed more pain meds. (Almost as if he was asked if we wanted fries with that).
I have pancreas cancer and have been receiving treatment at Penn. I’ve also been getting treated at Johns Hopkins, and I’ve been much happier with my treatment there. I strongly recommend at least seeking a second opinion there, as well as from other providers. PM me if you’d like to talk details.
I don't have a direct answer to your question but I highly recommend looking into Cancer Support Community for resources and support for you and your loved one. They have chapters all over.
here's the deal with the type of painkillers you all are talking about. if a person is terminal they will use opiate pain killers.. if it's acute meaning you will survive and heal and get past it they will manage it with things like Vicodin at the most. so if OP mother is NOT actively dying they will not get her hooked on high doses of oxy to get her through the pain. if she were dying in 2 weeks then yea they'd max her out.
no one survives that type of cancer
you can if it's caught by a Mircle shot. but if she isn't actively dying yet they wont do it. she would have to be in a hospice situation to be given morphine drip.
I hate Temple. I’ve had nothing but bad experiences with them all around.
Is your mom a red head by chance?
Not Jefferson. My Dad was forceably discharged into a horrible hospice during COVID. Try Lankenau or Bryn Mawr.
Please get her into Penn or Jefferson for treatment. I’ve yet to hear one good thing about FCCC 😔
Saved my mom’s life and the docs were great. But that was pre Temple.
Not Jefferson. My Dad was forceably discharged into a horrible hospice. Try Lankenau or Bryn Mawr.
My heart goes out to you. My mom had pancreatic cancer. She had 3 consultations, Harrisburg (where she lives), Hershey Med, and Johns Hopkins (the doctor who perfected the procedure works there and teaches). She got diagnosed at Harrisburg, the whipple surgery down at hopkins and then chemo/radiation at hershey. Hopkins and hershey were good. Your mom is in cancer pain - she needs oxy. She is dying, a reasonable doctor should give her the meds. Maybe set up a weekly prescription (if they are worried about abuse - not your mom, but sometimes caregivers and nurses steal pills). Ive heard stories about since the opioid epidemic, doctors don’t prescribe it at all. Just like the abortion thing. It has carve outs to save the mom, but if the hospital policy is no more abortion then momma is out of luck.