Please Advise ASAP Confidential please

[harnof]

I received this note yesterday.Please advise ASAP. Urgent.

My...... has lung cancer and has been at... Hospice for the past week. We are not completely happy with the service, but are not sure if the service that we are receiving is standard for a hospice facility.

We feel that if ( person) can and asks for food and drink that we should provide it to person and we do. The staff at Hospice .... disagrees and advocates additional sedative medication to prevent any ability to eat or communicate.

Any input would be really appreciated.

Thanks,

[Blackcat99]

When I worked at hospice we always gave food and fluids to the patients who requested them. I wonder why a hospice would not want to do it? Is she having problems with choking or other swallowing problems?

[harnof]

Thanks for the quick and much needed reply!

[talaxandra]

There's not nearly enough information here for me to have an opinion about whether or not oral intake's appropriate in this situation.

I'm curious - in what capacity have you been approached, and with what authority will your advice be received?

[harnof]

Thanks.

I was emailed among a small private group's blog.

I am friendly with the writer personally...

[talaxandra]

I don't know your background, so I don't know what kind of weight your advice to them would have, but I'd be careful.

While I generally agree with blackcat's statement that hospice or palliative patients are usually able to have oral intake as desired, there can be other aspects that can make this a significantly bad idea, even if the patient's dying.

In this case, based on the fact that the patient has lung cancer, I'd be thinking about:

- gut involvement, which could mean anything ingested may sit there undigested for prolonged periods of time, contributing to vomiting risk and pain

- esophageal involvement and associated swallowing difficulties, increasing the risk of aspiration

- cerebral involvement, which means the patient isn't able to make informed decisions about the risk of oral intake.

I say this because I've had families tell me how much their loved one wants to eat/drink, despite thie risk, when the person upset about oral intake is the relative/s. It's very difficult to think of food and fluid, which is usually sustaining and is ties with a majority of family and cultural rituals, as hazardous.

Were I advising this family in a non-professional capacity (eg a small group of friends/acquaintances) I'd suggest the family speak about oral intake with the staff. They may be able to explain why they want to withhold food and fluids, and perhaps review the decision if this is a strongly held wish of the patient.

I'd also want to address the issue of sedation - in my experience this has never been a rationale for increasing the dosage, and I'd be more inclined to believe the family have misinterpreted the decision or conflated it with the intake issue.

That's not to say that the family's wrong, but in any case it's a point of concern for them that may be contriuting to a feeling of distrust of the staff.

[harnof]

Thank you So much!

[talaxandra]

You're very welcome :)

[Hospice Nurse LPN, BSN, RN]

I'm sorry to hear about your friend. The family needs to talk to the hospice nurse and ask questions until they understand everything. It sounds like it could just be miscommunication.

[harnof]

To Hospice Nurse,

Many thanks.

[caliotter3]

Agree with previous advice for you to be careful and to refer the family to those who have official status in the care of this person. Consider being a little less forthcoming in the advice department with those that you do not have an employment-based relationship.

[tewdles, RN]

Safest advice...

If the family is displeased or otherwise unhappy with the care of one hospice they may at any time choose the services of another.