#1) Dying a Secular Death
The process of dying and the final result are often times that people reflect on some of the deeper religious issues. People of strong faith find great support or maybe difficult questions to their beliefs, people who never had a traditional belief go back to their family roots or adventure out to discover religions that they have never been exposed to. Whatever the experience near the end of life a common recurring theme is belief, religion, spirituality, whatever you want to call it.
Hospices and palliative care teams embrace this discovery of spirituality and are usually very open to all faiths. Most HPM practitioners I have worked with are eager to learn about different traditions and backgrounds and how those beliefs are important to their patients. But I have seen hospice and palliative care teams struggle occasionally when working with those without a traditional faith, specifically atheists and agnostics. Maybe it is the lack of a framework or belief in the afterlife that is common to so many religions, maybe it is the long-held negative yet erroneous view of atheists as people without morals, I am not sure what it is exactly. Without a common traditional religious structure to find common language care for the unbelieving patient can be more difficult for some. And I don't think the answer is as simple as, "Well at least they don't need to see a chaplain."
A reader tipped me off to a score of essays published in Free Inquiry magazine (Oct/Nov 2007) about experiencing the end-of life from a secular/atheist perspective. Most of the essays address the survivors issues such as how to have a ceremony without the religious infused language, or even whether to have one at all. I have read most of the essays and there are not many that give voice to the dying person's view on unbelief as they are dying, which is a shame, but understandably a hard task to do given that dying patients rarely write essays.
There are surely some to skip, such as the one on Cyronics, but others seem to give some good general advice from the bereaved. Some of the best quotes I think can be applied to all patients and families in general.
Janet Factor writes in "The Gift of A Wise Man":
"...the price of love is loss. No matter how happy, no matter how perfect and true the love, it will one day end in tears, for we cannot escape our own mortality."Richard T Hull in "Celebrate the Myriad Ways":
"Without the understanding that we are mortal, we cannot appropriately value our own lives."
"We could have taken offense at much of what went on at the service and much of what was said to us before or afterwards. But it occurred to us that uncritically accepting the outpouring of others’ consolations was the essence of what it is to be a humanist: one who seeks to understand and celebrate the myriad ways in which humans try to deal with the tragedies and stresses of life."Jean Kazaz in "People Don't Die, Do They?":
"Tolstoy’s terror of death did not subside until he underwent a religious conversion that convinced him that there really is more life after death. Nothing else would calm the panic that he so artfully projected into the character of Ivan Ilyich. My children were much more Tolstoyan three-year-olds than I ever dreamed I would have, but, in the end, they didn’t need Tolstoy’s solution. The subject simply went away."The essays are all available free online, or you could possibly find Free Inquiry magazine in a large bookstore. (It took me going to three different bookstores to find this magazine.)
Also note the recent JPM article by Marilyn Smith-Stoner, RN on End-of-Life Preferences for Atheists for further info.
(Thanks for the tip Kathleen J)
#2) Hospice Documentary - 203 Days
Bailey Barash, a documentary filmmaker, has a great 30 minute documentary about the last 203 Days of Sarah Neider, a hospice patient. You can watch the film for free, but if you are involved in end-of-life education at any level, I highly recommend you pick up a DVD (Pallimed is getting no kickbacks, FYI). And you are supporting a filmmaker who is a hospice volunteer, and encourage others to focus on telling these great stories that we all see everyday. It is important to note the filmmaker has a lot of production experience including being an Executive Producer for CNN, so this is not just an amateur production.
After watching the film, it was easy to see how easily the short film could fit into hospice agency orientations, fellowship programs, Hospice 101 talks with medical/nursing students, whatever. The basic story live of a hospice patients last several months reviewed in under 30 minutes makes this a valuable resource to our field.
->AAHPM and HPNA have selected the 9 cases to be presented at the Annual Assembly by HPM practitioners in training (RN, DO, MD, etc.). It was a lot of fun reading the cases and there were a lot of good ones, so it was hard to select the final 9 (up from only 6 cases we were slotted for initially!) You can read more about the process at the unofficial AAHPM PIT-SIG Blog.->Grand Rounds was recently covering pain issues at Counting Sheep (a nurse anesthetist blog)
->ERNursey and SICU Queen get into it about over-treatment in the hospital. Warning some language may not be suitable for all ages.
->Andy Billings, Susan Block and the faculty at Harvard are at it again. They have finished yet another year of PCEP, which is a great opportunity for HPM practitioners of all levels, and have now decided to tackle another working conference with the Harvard Medical School Palliative Medicine Leadership Forum for Junior Faculty Leadership Retreat. The deadline is December 7th, so get crackin'. The applications for PCEP are due January 15th, 2008 for the next session too. PCEP (Palliative Care in Education and Practice) is a great educational and networking resource. To show you how much fun it is I made a video after my experience in 2004.
Questions for readers:
1) Any revelatory experience in caring for atheists at the end of life?
2) Are you a alumni of the Harvard PCEP program, and if so, what would you want to tell others about it?
Feel free to leave some comments!
7 comments:
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.
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.
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.
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.
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!
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?
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!
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