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

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

80 yo widow of 3 months with 6 living children, 1 living with her and another just down the road, has been diagnosed with Stage 4 adenocarcinoma of the lung. The primary is 6.5x4.8x4.6 cm, upper left lobe, with some effect on lingular segmental bronchus and other segmental bronchi; one met at T-3; she does not remember about lymph nodes. Cancer was discovered accidentally; she feels fine. EGFR and Alk-1 are pending.

She has gone to the beach for the week, given that there is nothing she can do but wait, so it might as well be pleasant. We (the kids, of whom I am the oldest) are to look into hospice while she is off to the ocean. I am sure that what we should ask providers depends on what we want them to provide. However, having the staging for just over an hour, we are not really sure what we are looking for. My father's death did not involve hospice. He had a slow decline into dementia, requiring nursing home care for the last 3 months of life. As a family, we worked hard - and were pleased with the result - to keep him at home. We moved him to a nursing home only when he became a danger to self and others because of violence. The house in fact is already partially modified for home health care.

The general plan that we have now is to set up a relationship with a hospice provider, even though no services are yet needed. Once she does need care, we will go as far as we can with hospice at home, knowing that sometimes the last week to 10 days may require a facility, just depending on how her course goes. There are over a dozen providers in her city - how do we choose?

JimC
Hi Nora,

Hi Nora,

Welcome to GRACE. I am sorry to hear of your mom's diagnosis. I think that if treatment is not felt to be an option, working with hospice early is a very good idea. Most families don't turn to hospice much later than they should, missing much of the benefit they could have received.

Also, often depending on the level of family support available, some patients do well at home or only need inpatient care in their final few days. The determining factor can be the limitations on how well family members can adequately provide sufficient and safe care.

My hope is for comfort and peace for your mom and your family in the days ahead.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

nora
Thanks JimC! I am sorry for

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.

dldl94
Hello Nora and hoping these

Hello Nora and hoping these remaining days are a blessing for your mother and family! It might be worthwhile to see what local agencies offer both home-care and hospice. That way, as you sort through what may be offered/declined medically, you have capable help and a familiar caseworker on hand. Hospice is indeed wonderful and check on the financials/Medicare rules for sure. And lastly, here is another resource we received from our cancer center. http://www.agingwithdignity.org/five-wishes.php
God bless and keep you!

nora
Thanks didi94! We all have

Thanks didi94! We all have advance directives and DPOAHC.

catdander
Hi Nora,

Hi Nora,

The hospice groups are the most literate in the field of dying well, if I can use that term. If you're in an area with choices of hospice providers (or even if you have just one) then you or one in your family may want to speak with them to make sure they are on the same page as you. They are usually very good at accommodating the needs of all involved to make this stage as good for everyone as possible.

All best to you and your family,
Janine

nora
Thanks, catdander. We have

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.

catdander
Nora,

Nora,

I'm sorry but I missed the original question and didn't answer comment well it was early-ish and I was rushing. I would suggest you and yours read through these blogs, get a idea of what can be expected from hospice and create a list of questions that are important to your individual situation. I appreciate your direction and thinking processes. Your person is truly lucky. Let us know how the selection goes we don't get enough community input about how someone moves into hospice care in a timely manner.

http://cancergrace.org/cancer-treatments/2012/08/12/hospice-is-help/
http://cancergrace.org/cancer-treatments/2011/03/10/what-is-hospice-fact...
http://cancergrace.org/cancer-treatments/2011/01/19/why-do-we-fall-so-sh...

All best,
Janine

dldl94
Janine-thanks for the helpful

Janine-thanks for the helpful hospice postings. A current family member out of state with StgIV breast has in home hospice for now 2 months-she has so much trust in her providers (RNs/MSW) who are in contact with her MD and are now coming daily. They will arrange hosp bed when needed. We've met the team, send/receive texts-and have great confidence in their care.
Nora-Your mother's MD may have a connection or recommendation of providers. And I had attached that link for the "5 wishes" document because questions in wishes 3-5 might be helpful. Response of providers to ideas sparked by those questions may help you make your decision.
Take care all!
D

catdander
D,

D,

I really appreciate your input as/because I'm sure Nora does. It's so helpful for those in the middle of very similar difficult, traumatic, and decision filled situation to exchange info and I think Grace provides a safe and secure environment for it. There's a post I think I pasted above that discusses our lack of privy to the dying process.

Janine

nora
Oh my, D, I hope I did not

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.

dldl94
Not at all Nora!! Plenty of

Not at all Nora!! Plenty of "grace" here. :) Just wanted to make sure that in the midst of these busy days that some of the things that may add to your mother's comfort are considered. Take care!

nora
I asked my question a lot of

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.

...continued in next post

nora
Continuation:

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.

catdander
Thanks Nora! It's very

Thanks Nora! It's very generous of you to take the time. How is your mom. Have you delved into the hospice search and finding what you hoped for. (sorry my question mark doesn't want to work.)

Janine

nora
Her rad onc has a couple he

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.

JimC
Hi Nora,

Hi Nora,

You might find this list of questions from the American Hospice Foundation helpful: http://americanhospice.org/learning-about-hospice/choosing-a-hospice-16-...

Good luck.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

nora
Thank you, JimC.

Thank you, JimC.