Jake's illness brought us emotionally closer, while the tubes and port he needs to stay alive push us physically apart. Can we close that space and regain the easiness our bodies once had together?
"If we focus on the body, but not the experience of the person within it, we’ve failed as healers."
This hits home. It's tough navigating systems that aren't built for those of us with chronic illness and complex needs. We are left figuring it out for ourselves, continuously disheartened. I relate to so much of what you've written. The lack of autonomy, the basic creature comforts like enjoying food, a nice hot shower, having energy... All the things that make being a human being a joyful experience. Or if not joyful, contentment.
Thanks for sharing your words. I've never seen it laid out so clearly on my experiences-down to wanting to end it all and only holding on for my loved ones. I get it. I hope you both have many more moments of ease and comfort in your future 💚
Bess, I am so impressed by your ways of writing and sharing and keeping your humor and humanness despite the agony. You wrote elsewhere about the “word of the beginning” as the act of creation which also made us beings using words.This sounding word of the beginning (the Greek logos or Latin rationalitas) also encompasses our ability to communicate beyond words and sounds and to know beyond what can be known trying to find meaning even in what seems so meaningless. I see your both’ writings very much as an expression of this Divine breath breathing in us while exploring our corporeal limitations. Thank you for doing so so fearlessly and committed to each other! Sending well wishes and hope your way 🙏
<3 This was so on point. I'm glad you got what you needed and horrified you couldn't really rely on the people you were supposed to be able to rely on.
And please forgive the flippancy ( it tends to be my goto defense mechanism ) but this essay was a series of tubes.
Beautiful words. My heart burst when you finally got that hug. I’m so glad you’re able to hold each other and that you’ve found the Mickey! My daughter uses a Mickey button and I relate to so many of your feelings. She has a condition that is not super well known, but even her specialists often encourage me to “reach out to other parents” as they have the best know-how for daily care and alternatives!! It is both comforting to feel that your voice as a parent means something, but it is also disorienting and often terrifying that the “experts” are sometimes just figuring things out as they go. 😱 I hope you both gets lots of writing/reading/hugging in this week 🤍🤍
Thank you :) It's good you have docs who are honest about their limitations and encourage you to reach out. Certainty is a great industry if you're trying to sell something, but the truth is there's just so much we don't know and don't have answers for. I hope you and the other parents have written up what you know! You have a lot to teach people. Best of luck to you and your daughter. And yes to all the hugs. I'm probably annoying. I've become a barnacle
Did the gastroenterologist ever explain why they didn’t suggest the low profile tube to begin with? (I will admit, as I read, I expected the response to have been it’s too expensive or limited by some bureaucratic nonsense.) I’m glad you got it--just wondering why it’s not the solution of choice, the first option, for everyone? Why was it an option only touted after Jake (and you) had to suffer with the original?
Even with the nutrition. If Liquid Hope is more palatable/better than Boost or the other option... why are people still getting Boost? Is it financial?
We rely on clinicians not because we’re apathetic or lazy or stupid--I wish I had faith that people would always act in the best interests of their patients, at every turn, but it seems like this is too much to ask. But why? It’s very sad.
The description of that first hug: sublime. Best to you.
Hi Elle, he wasn't a candidate for an initial low-profile tube placement, though I'm not sure why. However, after the initial tract heals, the tube can be safely switched out to a low profile tube (if you don't let the tract heal you can cause all sorts of problems with tunneling, pseudotracts, etc). After that healing time? It was probably just not top of mind for the doc while they took care of other patients, and possibly didn't cross their mind since they mostly use the tube Jake got. There are a lot of older patients in the practice, and the low profile tube can be hard for them due to dexterity and eyesight (it works differently and requires attachements). So the baseline thinking is probably "PEG tube." I don't think it was anything malicious, but a failure to have any automatic reminders in the chart alerting the doc or patient that they could now request a different tube, physician anchoring, "good enough" syndrome and forgetting to ask my favorite question: "If i was the patient in this situation, would I want what I'm offering or is there a better way?" Days are busy and forgetting is easy. It's also hard to have perspective of how these decisions affect the day to day life of patients, which is why Jake and I are writing so much about it. I had no idea what kind of lives patients with cancer lived every day until this, not really. What's a huge deal for us is potentially minor when weighed against a day of patients with liver failure. I think we need to remember to ask how we can make things better for our patients, but we also work in a system that makes it very very very hard to do that without docs burning out at their jobs or never getting home to see their families. Too-large patient panels, not enough time, etc. I'm sympathetic to the doctor's side - I often fight to get my patients what they need, and when they don't get it, I'm sure they feel that I'm not trying hard enough, too. It's such a hard situation.
I have heartfelt empathy for everything you and Jake are going through.
When I got to the part about self-blame, my first thought was that if you're feeling that, and the guilt of not knowing about the alternative, what hope is there for other caregivers?..and then you wrote...
"Still, I chided myself for not figuring out the better tube solution. If not me, then who? Which tells you something about how much we’ve come to expect the doctors and healthcare providers taking care of Jake to guide him towards optimal care.
In medicine, we make a lot of noise about informed consent, but then lack imagination to ask ourselves if the things keeping a patient alive might also keep them from living? If we focus on the body, but not the experience of the person within it, we’ve failed as healers."
So true; thank you for raising this and your whole article encompassing the duality of your experience as a doctor and a caregiver.
Caregivers in the US and here in the UK (I've only a basic understanding of other healthcare systems) carry an increasing burden to not only be the one-stop-shop of information, coordination and communication i.e. the glue holding everything together. We also need to champion, advocate and be the activist-campaigner. I resonate with everything you've shared, so eloquently and heartbreakingly, as a Carer of parents who were doctors.
I hear you. Sending more virtual strength from this side of the pond...and going to your Go-FundMe page.
Thank you for your kind words. I wonder if the NHS adds an extra level of complexity especially when it comes to access, or if not having to navigate complex insurance makes things easier? I'm not at all familiar with the process
Very welcome Bess. Thanks for your question. It is a labyrinth of rabbit holes, catch-22s and conundrums, which I'd woefully under-explain here. I'll quietly step away from comparing the US and UK healthcare systems. Perhaps I can offer a few observations and insights from the UK Carer perspective.
The availability of support resources to care within the home is a postcode lottery. Agencies are overworked and understaffed. Resources are concentrated in the South. Availability trumps quality many times. This is not paid for by the NHS; it is assessed by local councils and paid for by the patient. I share some thoughts here: https://www.carermentor.com/p/burning.
The NHS and community social care may fall within 1 government department but are separate and funded differently. I have an article on 10 facts that will shock you. Unpaid Carers are propping up community care with minimal or no private agency support options.
Concerning treatment itself. Broadly speaking cancer investigations and consultations have standard treatment protocols that are meant to dictate a faster route of investigations, diagnosis and treatment than more nebulous chronic symptoms and illnesses. Elective interventions can be bumped down the line due to waiting lists. What may start as chest pain and fainting can take a couple of months to have an antihypertensive in hand.
The NHS is free, drugs are free. However, the system is failing the doctors who want to CARE instead of transacting to a target-outcome performance goal; they are overworked, have heavy paperwork admin loads and are burning out. Resources and staff are beyond their limits. The government debt means it is barely meeting interest repayments. A perfect-storm.
For example, I've heard numerous repetitions of 'the hospital discharge' stories from Carers and their loved ones: 'blue-lighted' into hospitals. They feel there is the drive to 'get them in, treated, and out to free up the bed ASAP'. This leads to unsafe discharges: another emergency at home and a return to hospital for sepsis or other issue.
I fear we're losing the 'care' part within healthcare, in systems led by a productivity culture. It is a big heart-sink for many people realising the new realities of retirement...or worse, for the working population, the 'sandwich' generation - parent care and childcare.
Passionate, and torn - hence the soapbox.
Does this resonate with what you know? I'd be interested to hear your perspective as a doctor and if you've UK colleagues who've shared their thoughts.
Hi Bess - Soon, I'd like to cross-post this article based on the comment I made here. Could you subscribe to my website: https://www.carermentor.com/ ? I would restate your comment and link to this post. Thoughts? You can catch me on the Chat on my site - hence the need to subscribe. Thank you!
So frustrating that discomfort, inconvenience, and all the rest are considered acceptable. They are not, ever. On another level, the love you and Jake share is so magnificent it envelops this narrative. May every day you have with him together be full of love and comfort!
I think it’s “acceptable” but not inevitable. It’s so much to have docs remember these kinds of details , too, over time. Especially with large patient panels. in As a physician myself I wish so much more of this were automated. If every patient who got a peg could have a message sent automatically via their online chart: “after x months you qualify for a low profile tube, would you like to discuss this with your doctor?” Then problems like this would be easily solved, I think.click a button, doc gets a message that you are interested and boom- not reliant on overtaxed human minds to remember. It takes that extra cognitive step away.
I’m a doc myself. Academic primary care pediatrics. I train pediatric residents. I like your solution but also I think physicians need to have more curiosity. And more time. ‘What’s working well for you? What’s not working? What could be better’. At least know what the issues are and have some experts to contact. One key role for physicians is easing of suffering, probably less so for ED. I have patients with autism anf stuff I can’t fix. Can we try things to alleviate suffering? We need to look to find what it could be. That stuff matters.
You write so beautifully and honestly I learn so much from your posts. Your love and caring shines thru like a precious metal.
Oh goodness, hats off you you- pediatricians are horribly under appreciated and children are terrifying especially when critical. I clearly remember the scariest moments of my career and 90% of them were kids. So thank you for all you do!
Yes- time and more curiosity would be great. Sadly I think there’s a dearth of both. Maybe it’s burnout or maybe it’s just lack of empathy or time or private equity takeover. I to ask myself: is this something I would want in the patients situation? How can I make this better? And it’s usually a two second practice that makes a big difference. I actually think we play a very large role re: suffering, except it falls to us by accident after slipping through the cracks. We actually handle a lot of initial palliative consults, which probably shouldn’t be our job, but our role as healthcare safety net includes having some awful conversations with people after those talks have been kicked too far down the road. Then again I also leave work chronically late because I tend to zero in on these issues, which isn’t great for me. I think that’s why I’d love some more systems solutions . That way even the incurious and disengaged can do better for their patients.
"If we focus on the body, but not the experience of the person within it, we’ve failed as healers."
This hits home. It's tough navigating systems that aren't built for those of us with chronic illness and complex needs. We are left figuring it out for ourselves, continuously disheartened. I relate to so much of what you've written. The lack of autonomy, the basic creature comforts like enjoying food, a nice hot shower, having energy... All the things that make being a human being a joyful experience. Or if not joyful, contentment.
Thanks for sharing your words. I've never seen it laid out so clearly on my experiences-down to wanting to end it all and only holding on for my loved ones. I get it. I hope you both have many more moments of ease and comfort in your future 💚
Bess, I am so impressed by your ways of writing and sharing and keeping your humor and humanness despite the agony. You wrote elsewhere about the “word of the beginning” as the act of creation which also made us beings using words.This sounding word of the beginning (the Greek logos or Latin rationalitas) also encompasses our ability to communicate beyond words and sounds and to know beyond what can be known trying to find meaning even in what seems so meaningless. I see your both’ writings very much as an expression of this Divine breath breathing in us while exploring our corporeal limitations. Thank you for doing so so fearlessly and committed to each other! Sending well wishes and hope your way 🙏
<3 This was so on point. I'm glad you got what you needed and horrified you couldn't really rely on the people you were supposed to be able to rely on.
And please forgive the flippancy ( it tends to be my goto defense mechanism ) but this essay was a series of tubes.
We are all basically a series of tubes. :)
Touche!
Beautiful words. My heart burst when you finally got that hug. I’m so glad you’re able to hold each other and that you’ve found the Mickey! My daughter uses a Mickey button and I relate to so many of your feelings. She has a condition that is not super well known, but even her specialists often encourage me to “reach out to other parents” as they have the best know-how for daily care and alternatives!! It is both comforting to feel that your voice as a parent means something, but it is also disorienting and often terrifying that the “experts” are sometimes just figuring things out as they go. 😱 I hope you both gets lots of writing/reading/hugging in this week 🤍🤍
Thank you :) It's good you have docs who are honest about their limitations and encourage you to reach out. Certainty is a great industry if you're trying to sell something, but the truth is there's just so much we don't know and don't have answers for. I hope you and the other parents have written up what you know! You have a lot to teach people. Best of luck to you and your daughter. And yes to all the hugs. I'm probably annoying. I've become a barnacle
Did the gastroenterologist ever explain why they didn’t suggest the low profile tube to begin with? (I will admit, as I read, I expected the response to have been it’s too expensive or limited by some bureaucratic nonsense.) I’m glad you got it--just wondering why it’s not the solution of choice, the first option, for everyone? Why was it an option only touted after Jake (and you) had to suffer with the original?
Even with the nutrition. If Liquid Hope is more palatable/better than Boost or the other option... why are people still getting Boost? Is it financial?
We rely on clinicians not because we’re apathetic or lazy or stupid--I wish I had faith that people would always act in the best interests of their patients, at every turn, but it seems like this is too much to ask. But why? It’s very sad.
The description of that first hug: sublime. Best to you.
Hi Elle, he wasn't a candidate for an initial low-profile tube placement, though I'm not sure why. However, after the initial tract heals, the tube can be safely switched out to a low profile tube (if you don't let the tract heal you can cause all sorts of problems with tunneling, pseudotracts, etc). After that healing time? It was probably just not top of mind for the doc while they took care of other patients, and possibly didn't cross their mind since they mostly use the tube Jake got. There are a lot of older patients in the practice, and the low profile tube can be hard for them due to dexterity and eyesight (it works differently and requires attachements). So the baseline thinking is probably "PEG tube." I don't think it was anything malicious, but a failure to have any automatic reminders in the chart alerting the doc or patient that they could now request a different tube, physician anchoring, "good enough" syndrome and forgetting to ask my favorite question: "If i was the patient in this situation, would I want what I'm offering or is there a better way?" Days are busy and forgetting is easy. It's also hard to have perspective of how these decisions affect the day to day life of patients, which is why Jake and I are writing so much about it. I had no idea what kind of lives patients with cancer lived every day until this, not really. What's a huge deal for us is potentially minor when weighed against a day of patients with liver failure. I think we need to remember to ask how we can make things better for our patients, but we also work in a system that makes it very very very hard to do that without docs burning out at their jobs or never getting home to see their families. Too-large patient panels, not enough time, etc. I'm sympathetic to the doctor's side - I often fight to get my patients what they need, and when they don't get it, I'm sure they feel that I'm not trying hard enough, too. It's such a hard situation.
I have heartfelt empathy for everything you and Jake are going through.
When I got to the part about self-blame, my first thought was that if you're feeling that, and the guilt of not knowing about the alternative, what hope is there for other caregivers?..and then you wrote...
"Still, I chided myself for not figuring out the better tube solution. If not me, then who? Which tells you something about how much we’ve come to expect the doctors and healthcare providers taking care of Jake to guide him towards optimal care.
In medicine, we make a lot of noise about informed consent, but then lack imagination to ask ourselves if the things keeping a patient alive might also keep them from living? If we focus on the body, but not the experience of the person within it, we’ve failed as healers."
So true; thank you for raising this and your whole article encompassing the duality of your experience as a doctor and a caregiver.
Caregivers in the US and here in the UK (I've only a basic understanding of other healthcare systems) carry an increasing burden to not only be the one-stop-shop of information, coordination and communication i.e. the glue holding everything together. We also need to champion, advocate and be the activist-campaigner. I resonate with everything you've shared, so eloquently and heartbreakingly, as a Carer of parents who were doctors.
I hear you. Sending more virtual strength from this side of the pond...and going to your Go-FundMe page.
Thank you for your kind words. I wonder if the NHS adds an extra level of complexity especially when it comes to access, or if not having to navigate complex insurance makes things easier? I'm not at all familiar with the process
Very welcome Bess. Thanks for your question. It is a labyrinth of rabbit holes, catch-22s and conundrums, which I'd woefully under-explain here. I'll quietly step away from comparing the US and UK healthcare systems. Perhaps I can offer a few observations and insights from the UK Carer perspective.
The availability of support resources to care within the home is a postcode lottery. Agencies are overworked and understaffed. Resources are concentrated in the South. Availability trumps quality many times. This is not paid for by the NHS; it is assessed by local councils and paid for by the patient. I share some thoughts here: https://www.carermentor.com/p/burning.
The NHS and community social care may fall within 1 government department but are separate and funded differently. I have an article on 10 facts that will shock you. Unpaid Carers are propping up community care with minimal or no private agency support options.
Concerning treatment itself. Broadly speaking cancer investigations and consultations have standard treatment protocols that are meant to dictate a faster route of investigations, diagnosis and treatment than more nebulous chronic symptoms and illnesses. Elective interventions can be bumped down the line due to waiting lists. What may start as chest pain and fainting can take a couple of months to have an antihypertensive in hand.
The NHS is free, drugs are free. However, the system is failing the doctors who want to CARE instead of transacting to a target-outcome performance goal; they are overworked, have heavy paperwork admin loads and are burning out. Resources and staff are beyond their limits. The government debt means it is barely meeting interest repayments. A perfect-storm.
For example, I've heard numerous repetitions of 'the hospital discharge' stories from Carers and their loved ones: 'blue-lighted' into hospitals. They feel there is the drive to 'get them in, treated, and out to free up the bed ASAP'. This leads to unsafe discharges: another emergency at home and a return to hospital for sepsis or other issue.
I fear we're losing the 'care' part within healthcare, in systems led by a productivity culture. It is a big heart-sink for many people realising the new realities of retirement...or worse, for the working population, the 'sandwich' generation - parent care and childcare.
Passionate, and torn - hence the soapbox.
Does this resonate with what you know? I'd be interested to hear your perspective as a doctor and if you've UK colleagues who've shared their thoughts.
Hi Bess - Soon, I'd like to cross-post this article based on the comment I made here. Could you subscribe to my website: https://www.carermentor.com/ ? I would restate your comment and link to this post. Thoughts? You can catch me on the Chat on my site - hence the need to subscribe. Thank you!
So frustrating that discomfort, inconvenience, and all the rest are considered acceptable. They are not, ever. On another level, the love you and Jake share is so magnificent it envelops this narrative. May every day you have with him together be full of love and comfort!
I think it’s “acceptable” but not inevitable. It’s so much to have docs remember these kinds of details , too, over time. Especially with large patient panels. in As a physician myself I wish so much more of this were automated. If every patient who got a peg could have a message sent automatically via their online chart: “after x months you qualify for a low profile tube, would you like to discuss this with your doctor?” Then problems like this would be easily solved, I think.click a button, doc gets a message that you are interested and boom- not reliant on overtaxed human minds to remember. It takes that extra cognitive step away.
I’m a doc myself. Academic primary care pediatrics. I train pediatric residents. I like your solution but also I think physicians need to have more curiosity. And more time. ‘What’s working well for you? What’s not working? What could be better’. At least know what the issues are and have some experts to contact. One key role for physicians is easing of suffering, probably less so for ED. I have patients with autism anf stuff I can’t fix. Can we try things to alleviate suffering? We need to look to find what it could be. That stuff matters.
You write so beautifully and honestly I learn so much from your posts. Your love and caring shines thru like a precious metal.
Wow see I learned from you. Had no idea of told your profession plays in palliative care. It’s like you do everything. Reason for burnout!
Oh goodness, hats off you you- pediatricians are horribly under appreciated and children are terrifying especially when critical. I clearly remember the scariest moments of my career and 90% of them were kids. So thank you for all you do!
Yes- time and more curiosity would be great. Sadly I think there’s a dearth of both. Maybe it’s burnout or maybe it’s just lack of empathy or time or private equity takeover. I to ask myself: is this something I would want in the patients situation? How can I make this better? And it’s usually a two second practice that makes a big difference. I actually think we play a very large role re: suffering, except it falls to us by accident after slipping through the cracks. We actually handle a lot of initial palliative consults, which probably shouldn’t be our job, but our role as healthcare safety net includes having some awful conversations with people after those talks have been kicked too far down the road. Then again I also leave work chronically late because I tend to zero in on these issues, which isn’t great for me. I think that’s why I’d love some more systems solutions . That way even the incurious and disengaged can do better for their patients.
Thank you for your kind words it means a lot!
Beautiful writing, Bess. I hope you get to enjoy some beautiful living too.
Thank you for your kind words Karen, I hope you’re doing well, too!