Quality of Life at the End of Life with Dr. Joanne Lynn

Transcript 9-20-00
Dr. Joanne Lynn
"Quality of Life at the End of Life"

RichOBoyle> Welcome nurslynn to ElderCare Online

RichOBoyle> we are all a little bit early tonight...the presentation starts at 9:00PM EST

RichOBoyle> how are you doing tonight?

[nurslynn] Thank you....I am a palliative care nurse in Canada

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[nurslynn] Just fine thanks

RichOBoyle> Hello Devin and welcome to ElderCare Online

RichOBoyle> where are you all chatting from?

[Devin] Good Evening, and thank you

RichOBoyle> I am in Islip, New York...out on Long Island not far from NYC

[nurslynn] Nova Scotia , Canada

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[Devin] On an island on the chesapeake bay of maryland

RichOBoyle> welcome! we have quite a few Canadians who visit often

RichOBoyle> Hello lemein and welcome to ElderCare Online

RichOBoyle> Dr. Lynne has not joined us yet...she should arrive soon

[nurslynn] ok

[Devin] Was sort of expecting a whole lot more people to be here already

[lemein] Hi, I'm Monty

RichOBoyle> people usually arrive from 9:00PM to 9:30PM

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[nurslynn] actually, I will have to check back....children to put to bed

RichOBoyle> ok lynn

[lemein] I arrived on time

RichOBoyle> hello maryk and welcome to ElderCare Online

[maryk398] hello rich thanks for letting me in

RichOBoyle> as we wait here for Dr. Lynne, I suggest that you type a few periods to tell the software that you are paying attention

RichOBoyle> ...

RichOBoyle> otherwise you may get bumped out for inactivity

RichOBoyle> welcome neighbor :)

[lemein] I'm Monty ; had TROUBLE, signed lemein, got on.

[maryk398] ...is that o.k.?

RichOBoyle> just like that

[Devin] heh, at least the program listens

[maryk398] took me a while also

RichOBoyle> I don’t recognize many of your names...how did you all find out about ElderCare Online and this chat session?

[lemein] I get your email

[Devin] I found out about it through a the newsletter on the incontinence newsgroup

[maryk398] I accidentally stumbled upon it while surfing for info-alz.

RichOBoyle> great! I try to get the word out through many different channels...we don’t have a marketing budget or a big deal with AOL

[Devin] I usually ghost and listen, my family is like the sick leading the sick

RichOBoyle> we are just trying to serve caregivers one day at a time

[maryk398] O.k. I have a question- should I tell my husband he has Alzheimer’s

[maryk398] he becomes very distressed when I take him to the doctor

[maryk398] is anyone there?

[Devin] yes I am

[lemein] I am

RichOBoyle> I am here

RichOBoyle> last month we had an extended discussion on that topic

[Devin] I'd answer, but I really don’t know all that much about Alzheimer’s

[maryk398] good- I thought you all went home on me

RichOBoyle> have you seen the discussion threads in the Forum?

[lemein] no

RichOBoyle> many people feel that your loved one deserves to know his diagnosis...so that he can live his life

[maryk398] I will try to find them- I am new to this kind of chat.

RichOBoyle> others feel that it may cause depression

[lemein] amen

RichOBoyle> we have presented a few articles on the subject over the last few months

[maryk398] my husband is the type to bury his head in the sand.

[lemein] I'm a slow typist, so shall use abbrev'ns

RichOBoyle> do you have children or his siblings to talk with?

RichOBoyle> what do you think HE would want?

[maryk398] not to change the subject but I found that my attitude helps/hurts his mood

RichOBoyle> either way, you should finalize any health care directives and legal/financial documentation

[lemein] wise

[maryk398] I wish I knew- I don’t want to set him back, as he gets that way when he goes to the doctor and fails all the tests the doctor gives him

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RichOBoyle> are all of you dealing with dementia, or other issues of aging?

RichOBoyle> has he made any hints that he knows what is the matter or suspects AD?

[lemein] my wife has Alzheimer’s, & I'm 81

[maryk398] I am – Alzheimer’s since 1992 - moderate /severe

RichOBoyle> nurslynn...are you with us? you need to type .... so you don’t get bumped

[maryk398] you may be right - in1995 he told me he thought he had Alzheimer’s

RichOBoyle> at some point, your husband may not be able to comprehend the diagnosis

[maryk398] Rich, I think I will try to tell him when the time is right. just scares me for some reason.

RichOBoyle> confronting the diagnosis makes it seem so final

RichOBoyle> I guess we all want to believe that it is not that dreaded disease...denial :(

[maryk398] my spelling is awful tonight-he might not comprehend fully.

RichOBoyle> don’t worry about spelling and typos, etc.

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RichOBoyle> Dr. Lynne should be here shortly

[maryk398] yes. I was in denial for a long time. but my heart bleeds for him.

RichOBoyle> do you have the chance to have quality time together?

[lemein] ...

[maryk398] I think I will log off now I am becoming upset for some reason-good night all be well.

RichOBoyle> Monty: how advanced is your wife's condition?

RichOBoyle> good night Mary

RichOBoyle> please stay in touch

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[lemein] not too bad. diag''d a year ago

RichOBoyle> that is good to hear...there are many resources both for you and your wife

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RichOBoyle> welcome back Devin

[lemein] u helped me sev'l months ago on this chat

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[Devin] Thank you, my regular isp was too slow so I reconnected via satellite

RichOBoyle> Hello David Introcaso and welcome to ElderCare Online

[Introcaso] Glad to join in.

RichOBoyle> several of us have been chatting for the last half-hour...getting warmed up :)

[lemein] when will t speaker come in?

[Devin] My mother has lung cancer, my step mom has lupus and epilepsy she lives with us, and I possibly have MS, still waiting for word from johns hopkins

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RichOBoyle> JLynn...welcome to ElderCare Online

RichOBoyle> how's that for timing, Monty?

[lemein] great

[JLynn] Hello - glad to be here.

RichOBoyle> Dr. Lynn, we have been socializing for about a half-hour...

[lemein] welcome!

RichOBoyle> we will give you a few minuets to get settled

RichOBoyle> minutes...not minuets

[JLynn] I liked minuets!

[Devin] yea, me too

[lemein] esp in G

RichOBoyle> Dr. Lynn is the Americans for Better Care of the Dying at the RAND Institute in Washington, D.C. She is also the co-author of "Handbook for Mortals: Guidance for People Facing Serious Illness."

RichOBoyle> I want to welcome you to this month's special expert session

RichOBoyle> we are a small group right now, so let's keep this casual...when more people come by, then I may ask you to queue up to ask questions

[lemein] amen

RichOBoyle> Dr. Lynn , I turn it over to you...

[JLynn] What are folks interested in? I have been working a lot on the problems of serious chronic disease -- that will eventually kill the patient

[lemein] I have advanced COPD.

[JLynn] There are lots of issues - caregiver, financing, symptom management, Medicare reform, etc

[JLynn] Lemain - what sorts of questions on this topic come to your mind

[lemein] How about hospice care?

[JLynn] Hospice care is the only benefit in Medicare that pays for medications, home care, oxygen, etc - but you have be intending not be back in the hospital.

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RichOBoyle> welcome endoflife to ElderCare Online

[JLynn] Of course, you can revoke a hospice choice any time – but realistically, it is best for people who really wouldn't want to be back on a ventilator again

[lemein] How is hospice contacted?

[JLynn] give your local hospice a call! You may have more than one - indeed in some cities you may have dozens - that will require some checking to see which ones know COPD and are convenient to you

[JLynn] you can find them at http://www.nhpco.org , or yellow pages

[lemein] thanx

RichOBoyle> do some hospices specialize in certain chronic conditions, such as Alzheimer’s or COPD or ALS?

[JLynn] with COPD, you want to be sure that you are working with a hospice that is comfortable providing sedation at the end if you get short of breath all! You may have more than one - indeed in some cities you may have dozens - that will require some checking to see which ones know COPD and are convenient to you

[JLynn] with COPD, you want to be sure that you are working with a hospice that is comfortable providing sedation at the end if you get short of breath

[JLynn] there is one hospice that specialized in dementia - in New York City - There used to all sorts that focused upon AIDS - but generally, they now accept all comers

[JLynn] It is interesting that, with very good home support and lots of work to keep you from having any episodes, most people with COPD do NOT get seriously short of breath at the end. Most doctors do not know this. It is just that you want your nurse to be able to handle shortness of breath if it happens.

RichOBoyle> everyone...if you are just listening, you must type "..." to keep from getting bumped out for inactivity

[lemein] ...

[JLynn] that's quite a phrase in a discussion of the end of life!

[endoflife] " . . . "

[Devin] You know if there are any kind of support groups in the baltimore dc area

[JLynn] whoops - I tried to type a smile!

RichOBoyle> Dr. Lynn, earlier this evening we were chatting with a woman whose husband had been diagnosed with Alzheimer's...she hasn't told him yet...what is the current thinking on discussing terminal diagnoses with your loved one

[JLynn] there are all sorts of support groups - your local "agency on aging

RichOBoyle> that pun was not intended... LOL (laugh out loud)

[JLynn] will know lots, as will Alzheimer's Associations, and other special purpose organizations

RichOBoyle> support groups for which medical condition(s)?

[Devin] my step mom has lupus

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RichOBoyle> welcome back nurslynn

[JLynn] As to talking about "terminal diagnoses" - in general, people "know" what they need to know. I would not avoid it, but it may be largely irrelevant. By the time that memory is impaired enough to make the diagnosis, most patients won't remember the "words" - just the sentiment, and the sense that someone cares about them.

[nurslynn] thank you

RichOBoyle> generally, I find that most medical conditions (including lupus) will have several internet support groups...and there is usually a national organization that sponsors local chapters, etc.

[JLynn] what do you think about "telling" your husband

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[Bubblehead] Hello

RichOBoyle> welcome bubblehead (Edyth Ann) to ElderCare Online

[JLynn] I would note that people find support groups VERY useful - even if it is really hard to get yourself to go at first. Just having some friends facing some of the same things helps make it more manageable

RichOBoyle> I suspect that each family and relationship is different...however, with Alzheimer’s, there is so much lost so early ... and you should enjoy the time you have together IMHO (in my humble opinion)

[Bubblehead] Especially when dealing with the End stage as no one should ever go through that alone

RichOBoyle> for those who have just joined us: we have just started our discussion around hospice care and COPD

[JLynn] If the person still has the capacity at times to write a durable power of attorney, a will, or otherwise to attend to "legal" matters, then you might want to let the person know why it is urgent to do these things ASAP

RichOBoyle> how about other types of terminal illnesses that are not dementing?

[JLynn] that is, if the person has the capacity AND has matters that need tending.

[JLynn] it is almost impossible to prevent a person from knowing that they have a serious illness if the person is cognitively intact

[endoflife] " . . . "

[JLynn] The point is that you usually do your relationship damage by setting out to provide lies and subterfuge.

[lemein] a friend is dying / brain cancer. I just helped him join a memorial society, which will save his family much $ for his funeral.

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[Bubblehead] .

RichOBoyle> Welcome dimpee to ElderCare Online

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[JLynn] that is not the same as "laying it on." - it might be best to ask the person - "What do you understand about this disease and what it will do?" Often long, uncomfortable pauses are enough to alert the person that they are being "way out of line" - then later, take it up again.

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RichOBoyle> Dr. Lynn, what is the current thinking -- pros and cons -- on the use of feeding tubes (especially in late-stage Alzheimer’s and other terminal illnesses?

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RichOBoyle> Hello Sydney2000 and welcome to ElderCare Online

[Bubblehead] .

RichOBoyle> Hello willyanne and welcome to ElderCare Online

[Sydney2000] Hi all

[JLynn] One real pointer is to leave conversations "open" - if you say "Mom, I will have to think on this a bit - let's talk again when I have had some time" - then it is easy to take it up again.

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[JLynn] As to feeding tubes, I think it is hard to justify them in advanced dementia. Of course, if the family disagrees, I'd compromise. But there is no evidence that they even extend life, and they certainly make most patients uncomfortable (from restraints, from fluid overload, from aspiration, whatever!)

RichOBoyle> to our new arrivals: we have been discussing hospice care and COPD

[JLynn] what's on your mind?

[JLynn] and dementia and truthtelling and support groups - and....

RichOBoyle> JLynn is our guest host this evening. You can click on her name at the top of this page to get a her profile :)

[JLynn] what has been your experience with financing of end of life care?

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[Sydney2000] as far as I know we do not have the in home hospice assistance which appears to be available in the Usa - would you recommend trying to handle end of life, untrained without assistance ?

[lemein] endo, et al, does your relationship with God help/ mine does

RichOBoyle> Hello TerryMI and welcome to ElderCare Online

[TerryMI] Hello and thank you for the welcome

[Willyanne] see all later have to put my mom to bed ,, have fun

RichOBoyle> goodnight willyanne :)

[Bubblehead] .

[TerryMI] night Willyane

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RichOBoyle> Most caregivers who I meet online and through my professional associations have developed a stronger spiritual sense...or at least more people who are caregivers seem to me to be more open about talking about spiritual issues

[JLynn] most hands-on assistance in the US is done by family, with only the training that a nurse provides, entirely linked to what this person needs. It works pretty well, really - the skills are tempered by love and concern, and the patient is well-served (though the caregiver may be quite stressed)

RichOBoyle> welcome back maryk

[Bubblehead] Yes but Hospice in the home does help the CG with their support and mere presence


TO maryk398> Mary: I posed some questions to Dr. Lynn about discussing the diagnosis...you can read her responses in the transcript

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[Bubblehead] For many it is the only time they get actual assistance and support

TO maryk398> please type in lower case --- it can be hard to read all in caps :)

[maryk398] o.k. thanks very much

[JLynn] Acknowledging the spiritual dimensions of the caregiver's work make it much more meaningful, for sure.

[endoflife] Dr. Lynn, can you say something about the work of Dr. Chirstina Puchalski

RichOBoyle> for those of you relaxing and listening...or doing chores and popping in and out: please type ... every 5 minutes or so to prevent getting bumped out

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RichOBoyle> endoflife...can you give us all a quick overview and then Dr. Lynn can comment?

[JLynn] Dr. Puchalski was part of our Center until we moved this spring. She is still a good friend and working at Geo Washington Univ. She has developed an assessment of the patient's spiritual "state of mind" that is easy for a doctor to do

RichOBoyle> ok...never mind :)

[JLynn] What is the status of end of life care in Australia (is that where Sydney is from?)

[Sydney2000] I guess that is something I will find out when it happens - we have hospices which

[Sydney2000] are part of hospitals but don't even know if they accept dementia patients there

[JLynn] is whatever you have available to everyone, or does it depend upon your insurance, or your wealth?

RichOBoyle> bubblehead, would you like to share some of your experiences with hospice and Milly?

[TerryMI] ....

[Bubblehead] I know in Canada they do a similar thing

[Bubblehead] Palliative care is given in the hospital

[Sydney2000] I honestly don't know - there is a huge range of facilities

- available but there are govt

[Sydney2000] guidelines and Centrelink does the income assessment component - if you choose not have Centrelink assess you pay the top price but that doesn't apply to home - we do get a home nursing allowance which is not means tested

RichOBoyle> in the US, there are some hospice facilities, but many hospice patients live at home during the last months and hospice caregivers come to their home

[lemein] ...

[JLynn] IN the US, at least 80% of patient days in each hospice program MUST be at home - in practice, more than 90% are at home.

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RichOBoyle> hello jackhagin and welcome to ElderCare Online

[JLynn] In the US, also, about 23% of deaths have used some hospice, for a median of about three weeks

[endoflife] Re: hospice/elder care internationally, the May/June issue of "Health Affairs" is dedicated to "care for the elderly" - re: Australia there's the article "The Financing and Delivery of Care for Australia's Elderly."

[Bubblehead] .

[JLynn] there is a lot of controversy as to how to use hospice programs better - for more patients, or for longer

[Sydney2000] but does it mention end of life - most literature seems to avoid this issue and the dementia care classes seem to focus on how to cope in the earlier stages and then how to select ALF or NH

[JLynn] the usual payment is $US 100 per day, for all costs, including medications and help at home

[Sydney2000] wow - I didn't realize there was a charge for hospice at home

[lemein] ditto

[JLynn] this is what the government pays the hospice provider, for those in Medicare (our program for the elderly)

[Bubblehead] How does Hospice differ in practice now then from when it first was formed?

[TerryMI] ...

[Sydney2000] no wonder they are so particular about who is entitled to hospice

[JLynn] lots has changed - for starters, when we started in the US, the patients who used hospice were MAD and were walking out on conventional care!

JLynn] Now, most cancer patients use hospice, so it is routine - and people with dementia, or with few other options, use hospice services

[Sydney2000] sorry - what do you mean by MAD

[endoflife] Re: the Australia article, yes, it does discuss end of life issues.

[JLynn] when we started, we mainly provided narcotics and TLC (lots of TLC). Now, we are expected to provide certain chemotherapies, highly technical ways of delivering drugs, etc. - it seems that sometimes there is a bit less TLC

[Sydney2000] Thanks for that - I'll follow it up

[maryk398] Is the cost $100 per day no matter your financial means?

[Bubblehead] It seems to me that because of having to used Medicare for coverage and some of the loops Hospice now has to go through that it has changed from what it's original intentions were

[JLynn] I just meant they were really angry - MAD - with how they were being treated - and left conventional care

[endoflife] The $100 is the cost paid to the provider by Medicare.

[jackhagin] I can understand MAD ... that is exactly what I was and disillusioned when I took my mother from Florida to Mexico to care for her in 1997

[endoflife] Meant to say the reimbursement paid the provider by Medicare.

[Sydney2000] We are told that it costs the Government about A$170 to keep a person in just a basic NH - that is not what the family pays but what it costs the government

[JLynn] In the early 1980's we would discuss how to have hospice phase out because we got the care system to adopt hospice principles.... now, we have thousands of providers whose income and self-image would be at stake - we don't talk about working ourselves out of business so often

[lemein] what's NH?

[Sydney2000] nursing home

RichOBoyle> NH = nursing home

[lemein] thanx

[Bubblehead] Well I still do not see the medical care system ready to do without Hospice

[JLynn] it sounds like a remarkable amount of money, until you try to come to my town, rent a room, buy three meals, and take care of yourself - then realize that most nursing home residents need someone to clean them, brush their teeth, dress, feed, etc - astonishing that it can get done for $170

[TerryMI] with dementia, at what stage/point would you require hospice

[Sydney2000] better go - am using the continued Olympics coverage as "activities" at the moment as so many day care and respite services have been suspended but better check everything is Ok and get some lunch thanks all for your help

[Bubblehead] So regardless Hospice is very much needed I am concerned however that Hospice may end up changing so much that it will become just another water4ed down version of the care system

RichOBoyle> g'day Sydney 2000 and congrats on your swimming medals :)

[Sydney2000] thanks and likewise - didn't think you even knew they were on - our press says no-one in the US is interested !

[JLynn] there is lots of controversy on eligibility for hospice in dementia in the US. WE are supposed to enroll only people with a "prognosis of six months or less" - it is very hard to know that with dementia. Most of the patients who stabilize and leave hospice are dementia patients

[Bubblehead] $100 a day for Hospice care considering the quality of care and services you do receive is very reasonable

[jackhagin] Well I hope hospice doesn't become another watered down version of the "care" system

Bubblehead] When did the 6 month ruling come into effect and why did it come to be?

[jackhagin] I think it is one of the best alternatives to nursing homes where A.D. patients are many times just warehoused

RichOBoyle> when a dementia patient leaves hospice, are they often readmitted? or do they never make it back in time ?

[JLynn] it is a real risk. there are now all sorts of treatments that people (patients and doctors) are demanding that cost around $100 per day. If hospice provides them, there is nothing for the hands-on care and TLC. However, it is easy to see whether a hospice is providing a drug, but harder to see whether they have effectively made home health aides unavailable

[Bubblehead] Hospice is wonderful and to loose it or to have it watered down would be a crime

[endoflife] Re: the 6 mos., the law is unclear, the "limitation" is how the law has been interpreted - however, many would like to see it be an avg. of 6 mos. for all hospice patients being challenged..

JLynn] how could we keep the real magic in hospice - without making it seem like it is in the "denial of benefits" business?

[Bubblehead] Actually the recent numbers I glanced at in the GAO report indicates that most do not even make it to the first 90 day requalification

[Bubblehead] Lynn that would be what I would be truely interested in seeing

[JLynn] it is very interesting that the statute that set up hospice did not specify whether the "just barely qualified" person is one who is just "more likely than not" to die within six months, or "virtually certain to die" within the six months. A lot turns on that. I have been thinking of trying to get a test case or administrative ruling (for the more-likely-than-not standard)

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[TerryMI] ...

[endoflife] The GAO report cited - is it just out?

[JLynn] If we want to enhance the TLC and sensitivity, how can we keep it from being overwhelmed by business needs and the public/professional's demands for high-tech "fixes"

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[lemein] What spiritual services does hospice provide?

RichOBoyle> hello gdjewel and welcome to ElderCare Online

[JLynn] the GAO report was presented at a Senate hearing on Monday- it should be on the web by now, but I haven't checked

[gdjewel] Hi all!

RichOBoyle> we have been discussing hospice, support groups and feeding tubes

[endoflife] Dr. Lynn, what in sum was the upshot of the Senate hearing. Did they just hear the report findings???

[JLynn] The research that we most need is one that would look at all people with eventually fatal disease and figure out who uses hospice, when, and why. If you only look at the population that DOES use hospice, you can't really figure out much about why.

[JLynn] I was out of town and have not read the testimony in the Senate. There was a lot of discussion of possible modifications of the current benefit -

[lemein] Modify how?

RichOBoyle> should families be concerned that their loved one will be disqualified from hospice and that they will owe back the money?

[Bubblehead] It seems for now there is a real interest to help provide more monies and lessen the limitations to Hospice

[JLynn] The eligibility for hospice SHOULD turn on the question of how sick a person is, not how long the person will live. While those are related, in some diseases, the variation makes it very hard to qualify people for hospice under the current law.

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RichOBoyle> if their loved one "lives too long?"

RichOBoyle> Hello conrad and welcome to ElderCare Online

[Conrad] hi

[Bubblehead] $100 a day may seem like a lot but it is still far less than NH care or even paying for home care

[Bubblehead] and especially for those that want their LO at home it is a bargain

[JLynn] It is a hard fact for some folks to understand, but it is true that the AVERAGE person has at least a 50-50 chance to live six months within what proves to be their last week. These people are quite sick, but with a slowly progressive disease, and then they get some complication (a cold, a pneumonia, a heart attack, whatever) and they die quickly - a rather sudden and unpredictable dying in the setting of serious long-term illness.

[lemein] wHAT'S lo?

RichOBoyle> LO = Loved One

[Bubblehead] Folks I hate to go but I must leave for now

[Bubblehead] I shall see you later

RichOBoyle> goodnight BH and thanks for coming by

RichOBoyle> I will post the transcript of this session over the weekend

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[endoflife] Seems like we talked around the hospice rate - how is it being calculated/re-calculated these days & is hospice still a "savings."

[JLynn] Maybe $100 a day is cheap, maybe not. How many of us would pay that much out of pocket? I wonder. I would when pain is bad, or we need lots of hands-on care, but I might think twice if most of what my family needs is encouragement and guidance and the patient is just quietly slipping away. I'm not sure, but it would be interesting to know what the public would value the services at. In hospice patients in nursing homes, families valued the services at around $60 per day

[TerryMI] ....

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[lemein] Thanx, ROB. My nurse calls supper. Bye.

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[JLynn] it is very hard to know whether hospice "saves" money. Probably depends on the hospice, the patient, and how the care system would care for the people outside of hospice. If there would have been no supportive services, hospice is an "add on" - if otherwise, people will be in hospitals, then hospice will almost certainly save. There are no randomized studies - and not really much else to rely upon.

[JLynn] My guess is that hospice costs about the same as "usual care" without hospice now - hospice has become more expensive and usual care has become less prone to hospitalize. But that is just a hunch

[TerryMI] Is the difference between hospice and "usual care" the compassion and support for the family?

[Conrad] Is hospice a form of nursing home or at home care?

[JLynn] hospice also provides medications, hospital beds, oxygen, a team approach and care plan, very much enhanced home care, and the promise to stay with you to the end

[endoflife] Hosice care can be "delivered" both in a NH and in the home.

[JLynn] hospice care can happen at home or in a nursing home, as long as the patient is not relying on Medicare for the payments to the nursing home (about 20% of nursing home care is this way)

[TerryMI] do they explain the stages of dying better then usual care staff?

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[JLynn] hospice staffs are much more comfortable with dying and with talk about dying - they are almost certain to do a better job, generally, than other providers. However, this does set some patients/families against hospice! They see hospice providers as "grim reapers" interested in maudlin subjects. oh well - you can't please everyone!

RichOBoyle> Dr Lynn, what are some suggestions to help families and patients to discuss and think about end-of-life planning?

[endoflife] Dr. Lynn - in your view how could the Moyers program been better?

[JLynn] Moyers could have been seen by more people and gone on longer! I was a bit uncomfortable with how viewers saw the discussion on physician assisted suicide, but otherwise, I had few reservations. I really liked the "ordinary heroes!" - what did you think?

[JLynn] Rich asks for pointers on discussing end of life planning. We have a number of very useful suggestions in our book Handbook for Mortals. We suggest, for example, that people look to create natural opportunities for talk - instead of saying "don't talk like that, Dad," say "why do you feel that way" - this sort of approach makes conversation about this nearly as natural and commonplace as discussions of next summer's plans! Well, not quite, but you get the idea.

[JLynn] I'd aim to make plans around such things as who should be there and who should be notified, how the person wants to be remembered, and what needs done in his-her life - not just resuscitation and powers of attorney!

[JLynn] On the Moyers series - I have talked with a number of med students and residents this week - and they seem to be quite inspired by the examples they saw. It is really exciting to hear young doctors seeing these folks as exemplars!

RichOBoyle> In On Our Own Terms I liked the woman who was planning her own assisted suicide...she really thought about who she wanted to be with and how her death would be

RichOBoyle> how should families tell their doctors and health providers about their wishes? What if the doctor "doesn't get it" or agree with your plans?

[JLynn] It is worth pondering whether her living into the next day and not getting to have her suicide was much of a loss, even to her! In good care, very few people still feel much need to have PAS available

[endoflife] I visited with a Chicago area Hospice medical director this past weekend and was surprised to hear him say that his pears still resist rec. hospice care seeing it as admit. Failure - in a major metro area of all places.

[JLynn] Most folks now die after multiple "close calls" - these give us all the chance to reflect upon what we would want done and how. Families and patients could use these occasions to walk their doctor through the "specific steps" of their preferences. I think it works, most times. If your doctor still doesn't get it - get another doctor!

[JLynn] the "transition" from usual care to hospice "feels" like a real abandonment by many patients and doctors. I think we might do better in many cases to allow BOTH palliative care and disease-modifying care, at the same time. I bet patients and doctors would end up with more reasonable plans of care.

[JLynn] maybe that's part of the reason that doctors resist hospice.

RichOBoyle> Does a person's doctor usually stop treating a patient when they choose hospice?

[TerryMI] I thank you for the insight. Good night

RichOBoyle> goodnight Terry, please join us again

[JLynn] the status of "dying" can be quite coercive - patients are expected to talk of grand things, make peace with family and god - and leave in a decent interval. They are not expected to have fun, raise puppies, or just live. I think sometimes that doctors "protect" patients from the constraints of being labeled as "dying" unless it is overwhelmingly clear.

[JLynn] It used to be that hospice physicians became the attending physician for most hospice patients. That is changing - many physicians now stay involved.

[Conrad] My dad had my mom on the "call 911 for CPR" list. I need to talk to the NH home about whether to change this. It's hard to make that kind of decision since I was not in the loop much when the form was filed out. Was it my mom's wishes. or my dad's. I don't think she could understand the

RichOBoyle> the last part of your comment was cut off...

[JLynn] Conrad, how large is the nursing facility and what state?

[Conrad] huge (800 beds I think all told) - it is the county geriatric center. PA

[JLynn] lots of small nursing homes have this policy, because then they just make it clear that they are not equipped to provide CPR, and it is hard to keep the certifications up for a small staff.

[Conrad] they say that this policy is because CPR does not usually produce good results in their patients.

RichOBoyle> what are the pros and cons of having that order in place for your Loved One? Are some people poor candidates for resuscitation?

[JLynn] The two papers on this subject show that CPR essentially never leads to long term survival in nursing home patients. It seems to me that it is a misplaced reflection of the larger society even to offer CPR, except in unusual circumstances.

[Conrad] that's the way I'm leaning. She is stage 6 Alzheimer’s Disease

[Conrad] but I can only guess at what she would want

RichOBoyle> Is it our desire to demonstrate that we are doing everything possible?

[JLynn] Often, families are "hit" with CPR decisions as if all sorts of implications are hooked to that decision - including "do you love your family member" - if we could separate the merits of the procedure from all those trappings, I think we would see that it offers very little, except for pretty healthy people with a sudden illness

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[JLynn] Sometimes it helps your father to think through what he wants the very end to be - who should be there, what should be happening. Even to think through the memorial and the time just after death. Usually, once a person has an image of what the last days and hours should be like, that person knows that a violent effort to restart the heart is just not part of it.

[JLynn] But, keep in mind that your father needs to be close to you, too, and that a person who is "in need" of CPR is probably feeling nothing at all - so it may not be among the most serious of errors to let a "call 911" order stand- if the closest loved one is really invested in it.

[JLynn] hard stuff to think through, isn't it!

RichOBoyle> Are there cases where withholding nutrition and hydration would be considered murder instead of a person's wishes to die "naturally"?

[JLynn] That is conceivable - but there are no such actual cases yet. There are some cases of nursing home abuse that turn on not feeding a patient. But that is just neglect, not a decision

[JLynn] remember, we only "withhold" nutrition and hydration when "providing" it would require artificial means. No one advocates stopping spoon feeding!

RichOBoyle> slightly different topic: any suggestions on how to talk with children and teenagers about death?

RichOBoyle> we have more and more people with Alz and other terminal illnesses living at home or with relatives

RichOBoyle> and many of these sandwich generation families have kids...

[JLynn] for children, "The Tenth Good Thing about Barney" and other little books are helpful in starting a conversation. Teenagers should just be included in adult conversation, it seems. It does seem to help children if they have been helpfully involved (and, of course, if the parents and other role models are handling problems sensibly and grieving rather openly)

[endoflife] Would recommend also for children "What is Death" by Etan Boritzer.

RichOBoyle> it seems that many teens are getting involved in the caregiving of their older loved ones, and even their parents if they have been diagnosed with Early Onset Alzheimer’s Disease

RichOBoyle> I will add these books to our recommended reading for kids and teens :)

[JLynn] The Bible actually deals with death a great deal. If the family has a related tradition, religious phrases and stories help.

[JLynn] there are more resources at http://www.growthhouse.org - they have a remarkable search engine for such things

RichOBoyle> do you have any suggestions for to help families or caregivers who cannot agree among themselves about care plans? serious conflicts when the Loved One is near death?

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[JLynn] do you think that children would get much from the Moyers' specials

RichOBoyle> hello oneomodypea, and welcome to ElderCare Online

[Conrad] are Moyer's specials avail on tape?

RichOBoyle> I thought the program was quite graphic, but not any more graphic than some video games....kids need a different sensitization to death

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RichOBoyle> I believe you can order the tapes...

[JLynn] serious family conflicts are all too common- in Handbook for Mortals, we walk people through what starts these frays and how to try to avoid them. First, of course, try not to replay all the fights you had as a child! Assume that everyone is trying to do a good job, but that they see it differently. Bend where you can, and seek outsiders help when it looks like you are going to really part ways. It is a pretty good bet that the dying family member would not want to cause

RichOBoyle> http://www.onourownterms.com and call 1-800-257-5126 to order the tapes

RichOBoyle> I bet many libraries will order the series

[JLynn] The American Library Association was a co-sponsor - most libraries probably already have it!

[Conrad] thx

RichOBoyle> Dr. Lynn, where are your areas of research and interest?

[JLynn] It is a pretty good bet, too, that most hospice programs will have taped it off the air - you can probably borrow it for free there, too.

[JLynn] I am spending about half time supporting quality improvement by provider organizations - including trying to work with multiple providers in a region. I work a great deal with Congress and exec agencies, trying to get these issues into legislation and regulation. We are doing research on Medicare claims (describing what happens) and with a set of collaborating organizations, trying to implement excellent care and measure the effects and costs (mainly for CHF and COPD).

[JLynn] Folks interested in our work could check into advocacy and education at www.abcd-caring.org , and support for provider improvement activities and our research at www.medicaring.org

RichOBoyle> are you trying to demonstrate which treatment approaches are the most cost effective?

RichOBoyle> as we wind down this session, are there any final comments that each of you would like to make?

[JLynn] we are trying to learn how to arrange services so that people can count on good care at the end of life - since that has to be sustainable by the community, we have to be sensitive to costs - but the methods for working out cost-effectiveness in end of life care are not well worked out

[JLynn] nice to be with you all

[Conrad] thanks for info

[endoflife] Appreciative

[JLynn] g'night

RichOBoyle> Dr. Lynn, I want to thank you for bringing us such an insightful session. You were so helpful to each our attendees -- and I will post the transcript for others to read

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RichOBoyle> good night all, and thank you for joining us this evening.

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RichOBoyle> .end.

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