Comments on GeriPal - Geriatrics and Palliative Care Blog: Talking Palliative Care and Death: Get Up, Stand U...

Good article but Please give me a brief details wi...

2010-04-15T04:42:43.101-07:00

Good article but Please give me a brief details with good pictures this topic. Thanks and best luck for the future.

No bravo, Brad. You have too much to offer to get ...

2010-04-05T19:10:54.246-07:00

No bravo, Brad. You have too much to offer to get so small. Cutting off the legs of any other does not make you taller. An opinion is one thing. Having no respect for those who have differing opinions is another. (I may not LIKE the president, but I have to respect the office and his burden.) There are reasons why Mrs.Palin spoke out.Conservatives were worried about several things and here they are:
1) The folks who devised the end of life panel were also responsible for formulating the Oregon PAS rules. That scared folks.
2) People were not assured that their own, or a palliative care physician would be the ones discussing death options with the them. They were led to believe it would be someone in Washington calling the shots after reviewing their "case".
3) Where were the leaders in the field of palliative care when this was happening? Did any make an appearance on Fox? MSNBC? Anywhere? Could someone have READ the bill and clarified for 1/2 of the country what the heck the intention was? Where was NHPCO? Being on a blog isn't getting to everyone!
Just expressing an opinion!

[Forgive me if this is a duplicate. Pilot error. ...

2010-03-26T21:30:50.199-07:00

[Forgive me if this is a duplicate. Pilot error. ;-)]

I am reminded of the phrase in research that "the rat is always right." And similarly, the basic tenet of social work (and marketing), "Start where they are." Whether you call it "optics" or simply being realistic, if people are afraid of the way we frame ourselves, we need to come up with titles or presentations that are less incendiary. In Buddhism, this might be called "the middle path."

"AIM" is a brilliant moniker in this regard. We use seriousillness.org for a similar reason. People are willing to admit Mom has a serious illness much sooner than they are willing to say "Mom" and "hospice" in the same sentence. If we want to reach families earlier in the process, we need to be sensitive, i.e., culturally competent, in how we approach our audience.

My experience has been that if you are given the opportunity to engage, then people react to our common sense and integrity. Once that basic trust has been established, we can then bring up the more frightening issues in a way that is safer and ultimately more productive.

On a note of optimism, I just came back from the Compassion in Action Conference hosted by Hospice of the Valley in California. One of the speakers commented that as a society, we now embrace natural childbirth but we still hang on to high tech death. I do wonder if, as the Baby Boom generation becomes the cohort that is dying, they/we might not take back the end-of-life passage in much the way we did with childbirth. As a lay midwife in the heady days of the 1970's home birth movement (and I hope I don't get type cast too much for revealing this!), I can see that we started as the (lunatic?) fringe. Eventually, though, the basic premises of de-medicalizing and taking control of the natural process of birth made its way through the mainstream and we now have in hospital birthing rooms that operate in a much more family centered mode.

Part of "growing up" is accepting that mainstreaming is part of building capacity and really establishing change that is accessible for all, not just the early adopters (often higher SES folks). There are things about birthing centers that I don't like relative to home birth, but it was a sea change and gives me hope that maybe this generation can create the same change as it takes its final bow. Now that would be an incredible parting gift, no?

Good you have collected good information its very ...

2010-03-20T15:37:40.842-07:00

Good you have collected good information its very good and helpful in the research of health care thank you

I provide medical care as a part of a community ba...

2010-03-17T14:53:12.996-07:00

I provide medical care as a part of a community based palliative care program which grew out of the recognition of care unmet needs of our frail population in transition. We are a CBO health center for the 60 and up population, and provide care at clinic, home, SNF and hospital.
I have agree that an AIM type model has made enormous difference to our patients who are not able to accept hospice. Actually, the key pieces seem to be 1.) maintaining long term relationship with PCP network - which includes MD and SW, sometimes chapliancy and geropsych in our system. PCP home visits are especially important to patients, caregivers and partnering home agencies 2.) 24/7 RN availability. AIM is not set up currently to provide both of those components, so we have been working most closely with the hopsice agencies who have been willing to work with our patients who fall into the hospice grey zone, that is, need or want a little more aggressive management, or have CHF/COPD/valvular heart disease or dementia, and may have more like a 6m-12mo life expectancy. With this model, we have been able to stabilize several patients with COPD were were being hospitalized q 1-2 month and given speciality assessed prognoses of weeks to month. Three of these patients, now off hospice, are alive 2 years later, and to oviate repeat hospitalization for several patients with CHF and dementia. The reimbursement structures should be changed to support this level of care in the home. No doubt, Medicare dollars would be saved, and clearly quality of life improved.

Andrea Thach
Bridge Service
Berkeley, CA

death, a natural and awe-some and inevitable phase...

2010-03-17T08:47:52.202-07:00

death, a natural and awe-some and inevitable phase of life, has unfortunately been medicalized by us the professionals (along with to good of all the incredible life-prolonging and life-ehancing advances of modern medicine, thank goodness) and, in reality, sterilized and politicized by our society and the media. thus, too much of the time, when people are dying, they and their families do not know it, do not believe it, are not ready, and die worse (sometimes sooner too) because of this modern, paradoxic reality around death. regular folks who are just plain old wise, not academics mind you, who know death coming when they see it and deal with it authentically, do much better, almost always. our job is to help those removed from death and less wise about it to become wise about it fairly expeditiously, the sooner the better. anyone, academic or bluecollar or whatever, can do this well if guided well. it is not our fault that death has become so politicized. dr. stuart was just stating facts, not promoting a point of view, in my opinion.

Must every conversation we have be cloaked in poli...

2010-03-15T13:35:58.916-07:00

Must every conversation we have be cloaked in political garbage? If you think that Sarah Palin's comments about death panels had anything to do with making discussions around dying "radioactive", you're as foolish as you believe her to be.

Death and dying have been problematic topics in our culture since I entered health care in the early 70s. Our society more and more seems to believe that death is an option not an inevitability.

This has nothing to do with Washington politics, Sarah Palin, the devil Karl Rove or any other political fantasy figure you wish to drag into the debate.

While you scream "wake up", I sincerely request that you grow up.

DieLaughing, it's amazing that I hear EVERY SI...

2010-03-12T07:59:24.425-08:00

DieLaughing, it's amazing that I hear EVERY SINGLE one of those phrases everyday and to your surprise (maybe), I'm getting more requests by families even if their docs aren't on board. If I had a nickel every time I heard one of those phrases, I'd be a very rich HPM Doc. Keep up the great posts.

Bravo, Brad!! Great post. Long ago your wisdom and...

2010-03-11T23:03:20.874-08:00

Bravo, Brad!! Great post. Long ago your wisdom and vision inspired me to do more, to think more and to reach out to help people think about their futures and to tackle difficult system issues. You are still doing it!

Bravo, Brad. You're right! We don't rec...

2010-03-11T19:39:57.870-08:00

Bravo, Brad.

You're right!

We don't receive thank-you notes and gift cards and warm hugs and baked goods and movie tickets from our patients and families for being politically correct wimps.

Passionate. Patient. Perceptive. Pragmatic. Palliative.

Wimpy? Hardly. Dubious? See for yourself: In the next coupla weeks, tally up the number of times you hear each of the following statements:

"Thank you for giving us the big picture"

"Oh, now I understand"

"I'm so glad I have options"

"Why didn't we get to speak with you sooner?"

"We were afraid you were just going to shove us into hospice. Thanks for all your helpful information"

"We're so relieved to have someone listen to us"

"How soon can we meet again?"

"I don't know how you do what you do, but we're very grateful"

"Thanks for letting us vent"

"We can see she feels so much better"

"Where can I get my own living will?"

"I'm not scared anymore"

"Hospice care was an answer to our prayers"

"You've given us some hope. Thanks for spending so much time with us"

"After speaking with you, we want everything done, at any cost, with little regard for our loved one's wishes, lifestyle, outcome, comfort, or future."

"The family has requested a Palliative Care consult"

(okay, okay, that last one's a stretch, but I remain optimistically Positive)...

Brad, you energize me. Thanks for taking the time.

Brad, thank-you for this post. I could be wrong bu...

2010-03-11T13:40:51.613-08:00

Brad, thank-you for this post. I could be wrong but I feel like this conversation is meant to be heard by us, not as a public cry for anyone who will hear, but like a battle cry to rally the troops. I didn't feel that you were too condescending just passionate. Please keep the passion going as that is what we need to continue to pave new paths and continue to change those things that need to be changed.

I respect your passion, but please think about the...

2010-03-11T12:21:45.431-08:00

I respect your passion, but please think about the words you use. I worry about the all too frequent tone of condescension heard in the tone of many well meaning passionate folks that makes conservatives (who are not all just idiots or fools who are in fear of death panels) turn their backs on anyone associated with Palliative Care.

Americans run the gamut--from oober-liberal to oober-conservative. Don't thy all deserve quailty Palliative Care?

But if PC professionals sound too condescending, too swayed by one arm of the political spectrum, they can just turn off many of the folks we need to reach!
Preaching to the choir doesn't do a lot to reach our most in need patients and families and peers.
Many of those Tea Party folks are our senior patients!

Instead of making our points by making others feel small & ignorant, shouldn't we be trying to find the right words to make people feel smart and empowered?

I teach Advance Directives programs to conservative seniors who leave thanking me, more knowledgeable about their options & miscommunications about palliative care, and feeling empowered by their choices and actions...But I never touch politics, never make them or the people they like & respect seem stupid or evil--just misinformed sometimes (like much of the general public).

Just like dealing with different cultures & belief systems, we can't denigrate what others believe. We need to try to work within their belief systems to offer what they will accept from us...

Instead of promoting a culture of "us" vs "them" (as we see in Washington, DC!), shouldn't we all be "us"? We may not agree on everything, but we can have very diff beliefs and still come to many similar conclusions.

Isn't autonomy all about respecting other's goals--not just ours? If we can open the door of trust to discuss those goals and help people truly understand what they want (and allow for evolving change over time, prn), isn't that what it's all about??

Love this post, Brad. Your passion explodes from t...

2010-03-11T09:27:01.499-08:00

Love this post, Brad. Your passion explodes from the page. And, yes, hurray, finally for the opportunity to talk about these important issues. Reminds of the timeless line ‘the personal IS political” and vice versa. Let me go on record to say, I am happy to wear that red dress. I may draw the line at the red lipstick.