ethical issues in home care

[shecub]

Greetings!

I was fortunate to have stumbled onto a caregiving position this summer, but it has come with some challenges ...

I'm caring for a 60+ year old female with anorectal cancer. Hemorrhage is an issue, especially when she passes a BM. She also has nausea for unspecified reason (she is not on chemotherapy). This said, she basically has cachexia at this point.

She has no family, but her friends are organizing care. I just happened to know one of them. Hospice crisis team has been involved, and the same hospice continues to check in. There are three of us that are a loosely formed team caring for her around the clock, with a couple of her friends organizing us.

Her primary is an MD who has some very alternative practices. Everyone who's met him does not have positive regard for the fellow, me included. She's wasted away over the course of weeks.

I have been told that the oncologists said she was underweight for treatment (but there have been a lot of inconsistent stories about a lot of this - it's kind of a mess) - and she's lost 20 more pounds, since then.

So the goal of care is to bring her weight up so she can receive treatment, as I understand the situation ... but she isn't able to eat ...

It is a slow growing tumor, so it is possible that it hasn't even metastasized.

She really seems to need a second opinion - and managed care!! However, I am unsure where to look for assistance with this, and I am really just a random caregiver in the scenario.

I would hate to see a life go to such waste, unnecessarily, and I certainly wouldn't want to be a part of that, by being complacent.

Does anyone out there have any suggestions?

I'm afraid that we're not going to be able to get enough calories in her to bring her back 20+ pounds, here at the house. Upon the suggestion of another alternative friend, she is eating small bits of coconut oil. This seems to be helping with keeping the gastric juices in check, but she needs nutrition! Aside from this, she is taking in ice water, herbal teas, green drinks, some kefir with probiotics - basically all fluids. There has been talk of protein drinks, but so far she refuses them.

I would so greatly appreciate any input on resources I might approach to get her moving in the right direction.

Thank you so much for your time, in reading this.

In gratitude,

Shecub

[Esme12, ASN, BSN, RN]

moved to home care for best response.

[txredheadnurse, BSN, RN]

It sounds like you really need a nutritionist/dieticians' input for ways to boost calories while still presenting the fluids the patient prefers to consume. I also wonder if the hospice team has offered any counseling to your patient? She might have some emotional barriers about her illness that are preventing her from wanting to eat or possibly engaging in more extensive treatment?

[turningred15]

Depending on her financial situation, you could enlist the services of a geriatric care manager. This person can assist with coordinating care. Make sure the team includes a RN. I believe she needs a second opinion and someone to coordinate everything she has going on right now. Good luck!

[nursel56]

I know that hospice is not synonymous with "do not treat" in the case of UTIs etc but I don't see the reasoning behind trying to get her to gain 20lbs (a very daunting goal based on what you are describing) so she can start chemotherapy again.

If she is alert and oriented what is her understanding of her prognosis? Usually a decision to go on hospice is reached mutually between the patient and her PCP or oncologist. If she wants the alternative-leaning MD and is capable of making decisions like that it is her right no matter what her friends think.

Maybe you could ask permission to talk to her PCP in order to get a more complete picture of her status, at end stage 4 cancer is normal not to have an appetite, and nausea from the cancer itself.

[tewdles, RN]

Bottom line, she won't eat unless the nausea is palliated.

More treatment may not be in her best interest...is that what she wants?

[AMN74]

Bottom line, she won't eat unless the nausea is palliated.

More treatment may not be in her best interest...is that what she wants?

Also, you mentioned BMs are difficult and make her bleed more. What goes in must come out. How painful and difficult is that if what goes in must come out...and coming out is painful and causes bleeding? These are all things to consider in helping her to get treatment. Is gaining 20 pounds to get aggressive treatment her goal or your goal?

[JustBeachyNurse, LPN]

The OP is not a nurse but an unlicensed caregiver can she legally contact the treating MD for information and treatment recommendations?

If the individual is a hospice patient should not the nurse case manager coordinate care as well as coordinate training /education of patient , family and non-nurse care team (assuming caregiver team is affiliated with the hospice agency and not just concerned friends/acquaintances wanting to help out).

[tewdles, RN]

The OP is not a nurse but an unlicensed caregiver can she legally contact the treating MD for information and treatment recommendations?

If the individual is a hospice patient should not the nurse case manager coordinate care as well as coordinate training /education of patient , family and non-nurse care team (assuming caregiver team is affiliated with the hospice agency and not just concerned friends/acquaintances wanting to help out).

I believe that lay persons may take the role of health advocate and contact the MD if this has been cleared with the patient and the permission appropriately communicated to the health team.

I didn't get the impression that this woman was on hospice currently, mostly based upon the desire to improve her status to accomplish more curative treatment.

From the little information we have it sounds as if this patient is medically fragile and is more engaged in dying as opposed to living at this time. I would recommend a frank discussion amongst her friends/support to clarify HER goals for care. It sounds like they need significant help right now!