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Topic: Inflexible hospital policies due to Covid

Forum: Caring for Someone with Stage IV or Mets —

A place where family members, caregivers, and loved ones of people having a Stage IV (metastatic) diagnosis can share, discuss, and support one another through the tough times unique to this diagnosis.

Posted on: Mar 23, 2021 09:24AM

tilthebitterend64 wrote:

My wife has been battling with invasive lobular breast cancer for nearly five years now. Recently things took a turn when the cancer hit her brain (leptomeningeal disease). The prognosis is not good. She's currently undergoing 10 rounds of brain radiation as inpatient in the Atlanta area. Last week, I was called by Palliative Care and made arrangements for Hospice care on the basis that she was "not responsive" and not getting better (as I was told since I wasn't allowed to see for myself). Because she was at that time placed in "comfort care", I was able to see her, and was surprised to find her awake, aware, and fairly lucid (though still unable to communicate or move much). The day before she was to be transferred to Hospice, the attending Doctor called me and said plainly that he saw the same thing I did, and did not think it was time to stop the treatment. He thinks there is a chance that she could improve, and, if she's able to start eating solid food and get strong enough, could start the next phase (PARP inhibitor chemo).

The key part there is that she needs to be able to eat, or she won't be able to take the oral chemo.

Due to very strict Covid policies, the hospital only made exceptions for me to see her when she was in "comfort care". Yesterday I was able to visit her, and the hope was to see if I could get her to eat something, which I did. Today, the hospital is back to "by the book". She's not in "comfort care", therefore no visitors, no exceptions. I'm concerned that the staff doesn't know how to get her to eat, and won't try very hard. I don't want to undo the progress we made yesterday. I asked to talk to the nursing manager who makes these decisions, but she has not called me back.

I have tried to come up with ways to ensure Covid safety and meeting the goal if not the letter of their protocols. I suggested, for example, that I take a Covid test, like any patient being admitted, and if negative, I can come in, but I have to stay in the room at all times, and keep a mask on except when eating or drinking. My wife and I have been downright paranoid about this virus before it was fashionable to be. I don't have direct contact with anyone. I have groceries delivered. On the rare occasions when I have to go out in public, I double-mask (KN95 + regular surgical mask), use a mask brace to improve the seal, shave before putting on a mask (also to get a better seal). It takes me a good five minutes to get masked up. I inspect my masks regularly and disinfect them with dry heat at 100C for about 1 hour. I replace masks regularly. I make sure to keep distance from others, even outdoors, and even when masked. I wash my hands all the time.

Bottom line: I take this virus very seriously. I'd venture to say that my own Covid "protocols" are at least on par with the hospital's. I explained all this to the hospital staff.

The hospital makes exceptions for "special circumstances". I'd think that a patient who isn't able to communicate and advocate for herself would fit the description. This is a critical time. If she's to have any chance at all, she needs to keep on fighting, and she needs to eat. The hospital can only attend to the medical side of the equation.

She's supposed to end the treatment on Thursday, and I'm not sure what's the plan after that. She won't be in a condition to come back home. There was talk about Hospice care, where she can continue getting medication and food, and there is more flexibility in terms of visiting spouses and family. Maybe I just need to wait until then. I just worry that at this critical juncture some bureaucrat is not looking at the whole picture and may let us lose what little ground we were able to gain.

So, I'm not sure what to do or if there is something I can do. She's finishing treatment in two days. At that point, we can transfer somewhere less restrictive. Anyone with a similar experience that can share some ideas?

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Mar 23, 2021 10:13AM AliceBastable wrote:

I'm so sorry you and your wife are going through this. May I suggest you copy this to the Stage IV section where the people who have more knowledge of your wife's situation would be able to offer suggestions? That way you'll get the most views and, I hope, suggestions and support.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Hope it stays that way. Dx 5/2018, ILC, Left, 2cm, Stage IA, Grade 1, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Mar 23, 2021 11:02AM buttonsmachine wrote:

I'm sorry I don't have any particular advice, but I just wanted to say that it is clear that you really care and that you are advocating for your wife, and I think it is good that you continue to do so. Covid has made these situations so difficult for family members and patients. You will both be in my prayers.

Diagnosed at 32. Local recurrences one year later, probably due to needle seeding at inital biopsy. Now dealing with MBC. Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 10/1/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/31/2017 Whole-breast Hormonal Therapy 3/31/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 10/2017, IDC, Right, Grade 3, 2/12 nodes, ER+/PR+, HER2- Surgery 11/1/2017 Lymph node removal; Mastectomy: Right Chemotherapy 11/30/2017 AC Surgery 3/31/2018 Lymph node removal; Mastectomy: Right Radiation Therapy 4/30/2018 External: Lymph nodes, Chest wall Chemotherapy 6/30/2018 Xeloda (capecitabine) Hormonal Therapy 7/30/2018 Zoladex (goserelin) Hormonal Therapy 2/1/2019 Aromasin (exemestane) Hormonal Therapy 9/30/2019 Faslodex (fulvestrant) Dx 8/2020, IDC, Stage IV, metastasized to bone/other, Grade 3, ER+/PR+, HER2- Targeted Therapy 8/30/2020 Ibrance (palbociclib) Dx 1/2021, IDC, Stage IV, metastasized to liver/lungs Chemotherapy 1/14/2021 Carboplatin (Paraplatin), Gemzar (gemcitabine)
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Mar 23, 2021 11:22AM moth wrote:

Is there a regular medical oncologist who has been directing her care? or is is because she's inpatient now the hospital oncology team has taken over?

In my area, the doctors can write a family member a letter allowing them to enter even during covid restrictions. Perhaps you need the medical team's intervention. They could literally write orders for you to feed her but that might not be enough to override management restrictions at the hospital...but it's worth a try.

Also, there might be a patient advocate or patient rights representative at your hospital?

Also there might be a social worker who can help?

& ultimately I'd take the transfer to wherever you can be with her. People do get discharged from hospice back to home or LTC .... it does happen as people sometimes rally. I think you need to clarify with your MO though whether they would consider starting her on a PARP inhibitor while she's there... (I would want clarification from insurance too as I've heard sometimes the switch to hospice can trigger some changes in what will be approved).

I hope you find a good solution to this very difficult and challenging situation. You must be so very stressed by all this. I hope you're surrounded by lots of supportive people. I'm sure all of us here are sending our best wishes

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Mar 23, 2021 02:11PM tilthebitterend64 wrote:

Thanks all for the replies. I see you are all women dealing with cancer already, and all I can say is I'm amazed by how you all face this, and still take the time to care for others while doing it. The fact that you are responding to this post in the 'caring for someone with cancer' forum just blows my mind, I'm very humbled. I don't know how you all do it, honestly. How you endure everything this damn disease throws at you and still stay strong, still worry about us, the caregivers.

The toughest thing for me has been that no matter what I do, no matter how much I try to support and help my wife, it's still her that has to go through all this. It's her fight, and I'm just a spectator. I can't do a thing to take it away from her. I really wish I could just take it all away, put it upon myself. She has very thin veins, so every time she gets an IV, she suffers. Mine pop right up and I don't feel a thing. Now that's a cruel joke. She has suffered through all these surgeries, procedures, poisons, all kinds of humiliation and things that slowly eat away at her sense of humanity, and her sense of womanhood. Through it all, she still worries about me, can you believe this? In her less lucid moments, when she was still eating, she would call me and ask me, "who's paying for this food?"

In any case, I'm giving up on trying to see her other than through facetime. She's got two more days of radiation, and it's doubtful I'll manage to change anything in that time. After that, I'll get her into hospice, where they can keep her pain and nausea under control, and where I can be with her. There is a slim chance she can get better and stronger there, and maybe even leave hospice and be able to resume treatment. I'm trying to keep my expectations realistic though.

Thanks all for the replies and for hearing my rantings. You are all amazing.

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Mar 23, 2021 02:51PM Moderators wrote:

tilthebitterend64, we're so very sorry to hear all that you and your wife are going through. We welcome you to this Community and want you to know, as you can already see, we're all here for you and your wife during these trying times.

Please continue to let us know how she is doing and if anything improves in the situation. As moth suggested above, you may find some help by contacting her MO or a patient navigator. In addition, we'll be moving this thread to the Caring for Someone with Stage IV or Mets forum, so that your situation may be addressed by others in a similar situation.

We hope this helps! Please let us know if you need anything at all as you navigate the Community!

--The Mods

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Mar 23, 2021 03:52PM illimae wrote:

I hate to see anyone going through this, the only thing I can think of since you can’t be there in person is to try to appeal to someone in charge about visitation exceptions in your case. If you are to angry or emotional (I get it but others may label a passionate plea as difficult), perhaps you have a family member of friend speak on you and your wife’s behalf. For the eating specifically, maybe ask a kind nurse to help motivate her since you are being prevented from doing so yourself.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Surgery 1/22/2020 Radiation Therapy 2/17/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 24, 2021 07:05AM tilthebitterend64 wrote:

Thanks, @illimae. Fortunately, I'm an Engineer, and can be rational almost to a fault. I articulated my arguments purely on the basis of what is the best for the patient (my wife), and for the safety of the hospital and other patients, and made it clear this is not about me.

Unfortunately, I seem to be dealing with a bureaucrat who is unwilling to take a step back and make decisions based on the ultimate goal of the policies, not just the text. Another day, another battle. Thanks all for the support.

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Mar 24, 2021 08:34AM jhj0112 wrote:

First of all, I'm sorry you are going through that.. Have you written the letter to the hospital or asked your wife's MO to get you some kind of letter or note?? I'm sure her MO can help you. I'm working in health care industry and have seen some cases where patient's spouses are allowed with the special exception ( letter from MO or docs). Unfortunately, Hospitals ( especially critical care area like ICU, CCU, cancer agency, senior care) are very strict with the COVID protocol because most of COVID death occurs in those area.

I wish I can help you more... I'm also the husband with stage IV wife so I feel/share your pain/frustration.

Husband/Caregiver Dx 4/10/2013, IDC, Left, 3cm, Stage IIIC, ER+/PR+, HER2- Chemotherapy 4/29/2013 AC + T (Taxol) Surgery 10/31/2013 Mastectomy: Left, Right Dx 12/13/2018, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Hormonal Therapy 12/13/2018 Femara (letrozole), Zoladex (goserelin) Radiation Therapy 12/21/2018 External: Bone

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