Comments on Pallimed: A Hospice & Palliative Medicine Blog: Dying a Secular Death; Hospice Documentary; Pal-Po...

Marachne,You probably already know that research-f...

2007-11-26T20:13:00.000-06:00

Marachne,
You probably already know that research-focused assessments and clinically-focused assessments are different animals. The clinically-focused inventory usually being the lite or distilled version of the research-focused inventory. I'm guessing that you are going to follow the research track, at least at first. Then you and/or others will take your findings to develop a clinically useful tool that can be used for (for example) teaching clinicians, assessing patients and families, developing an array of supportive strategies based on the assessment, goal-setting, defining "support," etc.

I think that starting with identifying domains makes a lot of sense. I assume you will be tweaking it almost daily as you encounter more variability in your patients.

Exciting stuff!

Marachne - if I understand your project correctly ...

2007-11-26T19:38:00.000-06:00

Marachne - if I understand your project correctly (and I may not be) - in my practice I've tended to ask families - "How have you traditionally made decisions as a family?" Or patients - "How do you make decisions when there's a tough choice? Who do you go to?"

These have been my bedside, quick and dirty, ways of assessing this - which I would guess would not be much help for your project which appears to be much more indepth and coherent. Am I understanding the nature of your project correctly?

Interesting conversation about what makes up who w...

2007-11-23T15:06:00.000-06:00

Interesting conversation about what makes up who we are as individuals, and how that affects the choices/decisions we make as much as any obviously apparent demographic. It seems to me this is also the heart of Patient-centered care: seeing the patient (and by extension family) as a constellation factors that make them unique.

Interestingly, for a curriculum course I am taking, I put together a unit on supporting families in their decision-making process.

As part of developing this unit, my (brilliant) instructor suggested I create something called the [my last name] Inventory. It's only in a beginning stage of development, but I do think there may be some use to it down the road, not only in education and training, but as a clinical tool.

Here's as far as I've gotten:

Background: To be able to work with a patient and their family, particularly in times of potential crisis and intense emotions, it is important to be aware of their particular context and circumstances. As it can be a complicated process to gather all the relevant information, I have developed a framework which I am calling the “[XXXX] Inventory.” This series of questions should allow you to find out much of the pertinent information in a systematic way.

I haven't come up with all of the questions yet (which also include observational aspects) but the following domains will be included (remember, this is for family decision-making):

Parts of the Inventory:
• Relevant Family History
• Family Dynamics
• Attitudes toward medical system
• Developmental stage
• Coping Strategies
• Ability to provide care
o Material ability/resources
o Psychological ability/resources
• Desire to provide care

As it develops (or even now) feedback appreciated!

Responding to Drew's Comment: "the specifics of ...

2007-11-20T11:14:00.000-06:00

Responding to Drew's Comment: "the specifics of how their families accommodated death and disease and other personal narrative details - these have as much impact on how they conceptualize and approach their death as whether they are atheist or african american or whatever."

Overall a great comment. This last sentence is a challenge to any of you social science researchers who would be inclined to design a study that looks at these variables, perhaps juxtaposing them against conclusions based on standard demographic research.

Thanks for the video, Christian--brought back lots if memories. I was in the 2001 cohort (year 2 of the program, I believe), subsequently was on the faculty as a small group facilitator and occasional presenter through 2005. It was an incomparable experience intellectually, emotionally, and socially. I highly recommend it to all.

Yes that's the problem with generalizing from any ...

2007-11-19T22:14:00.000-06:00

Yes that's the problem with generalizing from any of this sort of research (whether it's about atheists, Christians, Latinos, lesbians, or whatever cultural group the researchers are looking at) - generalizing to the patient in front of you - who is a member of many groups, some of which have been of interest to researchers but that doesn't necessarily give you information about how this patient approaches the world. a prime example of this is the wide-ranging and deep research on african-americans and end of life care - there are many well-defined and oft-reproduced trends. however that tells you very little about the patient sitting in front of you.

for example - looking at me: i am married, wealthy (i'm a doc after all), 30-something, white, midwestern, home-owner, parent, politically unaffiliated, and with a stay at home wife.

These important demographic features however obscure other important demographic features: that I'm a first generation american (and lived in my parents' country of origin for many years as a child), have strong progressive-left politics, am non-religious/humanist/atheist, a CSA member, adoptee Milwaukee South-sider, etc.

However none of these things, I think, particularly predict my end of life preferences as is the conceit of some of this research - at least with any more precision that the general and (near-) universal wish to die peacefully, without much suffering, and without being flogged in an acute care setting for several weeks prior to my death. What does, in my mind, predict what 'preferences' more than that i actually have are certain personal-narrative events i have which would never be caught by such research. E.g. how i was raised by my mother, how she talked with me since i was young about what she thought a good death was, etc.: this, more than anything else that has happened in my life or, i think, my demographics, has determined my end of life attitudes/'preferences.' and i generally assume my patients are the same way - the specifics of how their families accommodated death and disease and other personal narrative details - these have as much impact on how they conceptualize and approach their death as whether they are atheist or african american or whatever.

anyway - all of this is to say that such research is important - for public policy, for quality improvement, for identifying potentially unmet needs/challenges, etc. - but not for individual patient care.

Great point about culture and the fallacy of gener...

2007-11-19T00:57:00.000-06:00

Great point about culture and the fallacy of generalization Drew. A wise chaplain once told me that everybody is part of many cultures. And that if we open our eyes we can see ourselves as part of many cultures, especially when excluding the classics of age, sex, language, gender, race and religion.

Me, I'm part of these cultures: Raised in San Diego, Rec League Hockey Player, Physician, Hospice Doctor, Board Game Player/Geek, Former Bass Player in a Cover Band, California Transplant in Kansas, Married, Father of Twins, etc. etc.

Altogether that makes up my individual culture. And within those groups I may be close to the stereotypical norm or very far away from it, but from those looking from an outside viewpoint, I am still just like every other recreational/beer league hockey player.

The atheist/humanist links are interesting and - a...

2007-11-18T20:31:00.000-06:00

The atheist/humanist links are interesting and - as a whole - much more down to earth than the atheist/humanist perspective on the end of life in the Lancet a couple years ago.

One of the problems in generalizing about atheists and the non-religious is that it's a group that's just as diverse than, say, 'Christians' or 'Jews' and so much of what is written is from the perspective of those few who are members of atheist groups. This was the problem with the Lancet article. The JPM article - while valuable - is limited by the fact that the subjects were members of atheist organizations and it's tough to say how reflective these people are of atheists at large - it's like trying to use the League of Woman Voters as a representative group of all women.