Hospice Selection - What Questions to Ask in Choosing the Provider - 1269326

Thanks JimC! I am sorry for your loss.

I am not sure that treatment is not an "option" yet, but the gestalt is that that option is probably not the best choice. We have a family dynamic that calls for good stewardship, has faith in the resurrection and values a basic elegance of living and dying. Several of us kids (or spouses) are medically sophisticated and we can come pretty darn close to 24/7 attendance without breaking a sweat, for a reasonable length of time - like a year, before it gets dicey, but we are looking at an average of 6 months, so NP.

What we are looking for is to find a partner to create a death plan, the same way a pregnant couple creates a birth plan: not messing with the outcome, but seeing to the needs along the way so the experience, though hard, will not be colored by regrets later. Finding the right agency to help us in creating that overall plan is where we need guidance now.

Thanks didi94! We all have advance directives and DPOAHC.

Thanks, catdander. We have identified about a dozen potential hospice providers and will want to make an informed selection between them. I am hoping that there are some indicators of their specific skill sets and philosophy that we could ask about when interviewing them. While the final 2 weeks of most expected deaths follow pretty predictable patterns, the best guess by her oncologist is that we are 5 or 6 months from that "last two week" part, barring a pneumonia or variation in disease progression.

We may want to travel a bit over the next couple of months, so I "think" that it would be helpful to know if a provider has a relationship with other providers out of state. I also know that we never want to feel pressured to move into a facility based hospice setting, so I "think" it might be helpful to ask what percentage of their deaths are at home versus in a facility. I suspect that some hospices are better at some disease types than at others, but I am not at all sure how to get insight on that aspect, if it even exists outside of my suspicion that it must.

Oh my, D, I hope I did not seem ungrateful for the 5 Wishes link! 5 wishes is indeed a great way for folks to unpack their thoughts about what matters to them, but we have already done that thinking part and have it papered up pretty well. I maybe hunting unicorns thinking that lung cancer specific or preference specific questions exist for sorting out which hospice is the best fit for us. As a cancer survivor, I am well aware that a certain amount of magical thinking can arise when first dealing with the diagnosis.

I asked my question a lot of places - and got a really helpful answer from a HS classmate from 40 years ago; she is now a hospice nurse. Pasting it here, because we have been working this plan. I believe in the good death that hospice can organize and think more folks would choose it at the right time if they knew more about it. from my friend:
First and foremost - Eliminate all for-profit hospices. Hospice has become a big business and a for -profit hospice is more likely to cut corners and be understaffed for the sake of that Almighty dollar. Having said that, I may be wrong about whoever is providing hospice care in Shelby County, so looking at reviews etc. isn't a bad idea.

I work for XXXXX Hospice here in ZZZZ - the largest hospice provider in YYY County, which also happens to be a Catholic organization. I like the values oriented work environment. I assume you and your mom would as well. So, check out any Catholic or religious based hospices for sure...

Even if there are a dozen providers in the Memphis area, they may not all be serving your mom's town, assuming she stays there, so find out who is.

I would guess that she can still be on hospice with the palliative radiation, but that particular hospice would then have to be willing to cover the cost of those radiation treatments. So that would be a question to ask - now or after the radiation course is completed? Much of that may be determined by Medicare rather than a decision of a particular hospice.

Size isn't everything, but how long they have been providing hospice care and how big their census is might indicate how respected they are in the community.

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Continuation:
Ultimately it will be the particular RN, MSW, Chaplain, Home Health Aid etc. who will enhance your mom's and family's experience, so you might want to ask how long the particular team that serves her town has been working for that hospice... Usually longevity is a good indicator of expertise, but it's not everything, of course, and nurses do move around frequently.

If you narrow it down to one or two organizations, maybe ask around at her church for other families that have experience with that organization and the particular team that covers her town.

Now, about her diagnosis.. [deleted for space], keep methadone in mind as an option of something to try...

As to home vs facility, that's a very personal choice. I would be wary of assisted living facilities as they often are not staffed well enough for the care needed when end of life comes and the family ends up keeping vigil or they are paying through the roof for 24 hour care as well as the cost of the assisted living. That said, places like QQQ have both assisted living and skilled nursing care, so moving to the skilled nursing section when needed is easy. Any place that has both is what you want. Otherwise, home is much preferred to assisted living alone. There may be enough of you 'Tickles' around to share the burden of helping out at home when needed and it would be a great gift for your mom and for all of you... (I say that and I know when the time comes for my mom and dad, neither of them will probably let us do it...)

Let me know if there are any other questions you might have and feel free to run anything by me that comes up.

I was looking for this information and thought it might be useful for a forum to understand what question I was asking, because hospice is part of the skeleton of good medicine.

Her rad onc has a couple he recommends, but thought we should finish the palliative radiation (another 9 tx) before starting to interview them. I will try to update as we move along, because I did struggle with trying to get useful information about how to select a provider. It might be helpful if one of the GRACE docs who favors palliative care could develop a broader piece to guide family members on when and how to make the choice. Most of us do not do this very often in a lifetime.

Thank you, JimC.