A Rumor of Angels: Quotations for Living, Dying & Letting Go
Neil Small: Living and Dying with Dementia: Dialogues about Palliative Care
Joanne Lynn: The Common Sense Guide to Improving Palliative Care
Fiona Randall: Palliative Care Ethics: A Companion for All Specialities
Sarah York: Remembering Well: Rituals for Celebrating Life and Mourning Death
Stella Benson: The Healing Musician : A Guide to Playing Healing Music at the Bedside
Milton J. Lewis: Medicine and Care of the Dying: A Modern History
End-of-Life Decision Making: A Cross-National Study (Basic Bioethics)
Andrew Dickman: The Syringe Driver: Continuous Subcutaneous Infusions in Palliative Care
Fiona Randall: The Philosophy of Palliative Care: Critique and Reconstruction
End-of-life Care: Bridging Disability And Aging With Person-Centered Care
Brian S. Carter: Palliative Care for Infants, Children, and Adolescents: A Practical Handbook
The Association for Death Education and Counseling will be hosting their 31st Annual Conference: Living Beyond Loss: Mending Body, Mind, and Spirit. It will be held in Dallas, TX April 15-18, 2008. For more information, contact www.adec.org
Key Note Speakers include:
Ira Byock, MD, Cecelia Chan, and Monica McGoldrick.
There is a wonderful new book out called:
Deeper Into The Soul: Beyond Dementia & Alzheimer's Toward Forgetfulness Care Nader Shabahangi Bogna Szymkiew.
By:
I know Nader Shabahangi from the Existential Humanistic Institute (San Francisco, CA -- www.ehinstitute.org) and from Pacific Institute (also San Francisco, CA -- www.pacificinstitute.org. I found this book while looking up a book on Jim Bugental for a course in existential psychotherapy. Nader's book was listed below Jim's on Amazon.
The timing couldn't be more perfect as my grandmother has a diagnosis of dementia and two weeks before had an unethical and horrible experience with her assisted living facility and a nursing home in WY. Their staffs, though kind, had no idea how to honor an elder who had memory problems and a staff nurse actually sat on her and threatened her.
Being in end of life care myself, I was outraged. So was my aunt who has many years of geriatric consulting skills. She ordered a copy of Nader's book for herself and the two facilities and went in to do workshops with their staff.
Nader has been blessed with amazing teachers like Jim & Elizabeth Bugental and his vision is deeply steeped in existential humanistic priniciples.
This is a must have for anyone, professional or family member, dealing with people with memory problems.
Nader, thank you for this gift!
ADEC has rolled out a newly revised member benefit... the networking groups. These are special intereset groups in the field of thanatology for the specific purpose of helping professionals and students link to each other regarding specific areas.
Our list includes networking groups on:
The networking groups are member only benefits but are well worth the time and resources. There are many areas of thanatology that are not represented and we would love to have new members who would lead groups in those areas which include but are not limited to:
If you are interested in joining ADEC, please go to www.adec.org. If you want to know more information about networking groups or would like to propose one, please see the networking group section under membership benefits. My email is there and I am happy to answer any questions.
Have a great summer.
Jennifer
It's hard to believe that it's been so many months since I posted here on growthhouse's blog. I really love this concept and hope that more people in end of life care use it as a resource. It's a wellspring of information and knowledge as well as access to some really important people in the whole field of thanatology.
For those of you who are new to this blog, I welcome you. For those who have read it from time to time, I welcome us both back. It's good to be here and be able to come back with more morsels that I have learned from my experiences with loss and those experiences that clients share with me.
The importance of just being.... I have a few clients that I have been working pretty intensely with and I have to say that we can never underestimate how just being there really can be enough. How being engaged and present to what they share with us, what they don't share with us, the stories they tell, the memories they offer, and the triumphs that they gleam from when they have been down for so long.
I have a certain person I have been working with who has a lot of abuse history and the person called me today just to let me know that after a pretty upsetting situation, which would normally bring back trauma and set this person over the edge, she was able to stay calm, use some of the things we talked about ... simple things... breathing, meditating, looking beyond the moment to see how our actions in the present could effect the future, not taking things personally, and knowing that a lot of what we see in our world is illusory. This was the first time in well over a year that we have known one another that she was proud of herself, that she didn't go back to the trauma of her son's death, that she took care of herself and her daughter, and that she realized she had choices.
Isn't that something that we can forget to remind clients.... that they have choices! That how they think, the stories that run through their mind, the history that they let replay makes a difference in how they experience the world. Sometime so simple as a reminder that we have choice, that we have options and just because we have done something 100 times before does not mean that we have to instinctually do the same thing for that 101 time. How great it is for this client to know that her choices were to self medicate (like she's done in the past and has suffered consequences), that she could totally lose control (like she has done and not been able to take care of herself), that she could be in the moment and take a situation as it came, not adding anything more to the narrative and not hiding from the parts that are too painful (something that she is working on doing more and more).
How wonderful it is to see that someone who has been in system after system, has taken medication after medication is making choices because someone reminded her that she had choices to make and provided a safe environment where she could try out some of those new choices. A person who the "system" had given up on, especially after the traumatic and sudden loss of her son, called me today and was giddy that she had made it through a situation unscathed, one, by the way, that I am not sure I would not have been able to cope with as calmly.
Will there be bumps in the road? Brown-outs when she forgets that she has choices, options, tools, new ways of looking and thinking about things, or that she has people who support her and don't think of her as "ONLY" a grieving mom, a psychiatric patient, a person who has no hope left to hold on to? Yes, that could happen, and she was able to live in the moment and appreciate that in this one situation, she was able to break patterns that have been instilled in her since her own childhood and reinforced with the trauma of her son's death.
To all the clients out there who have those magic moments of ah-ha and to the people who sit with them week after week in, being compassionate with each other... change can happen, transformation can occur despite what everyone else says, and you can find yourself again when everyone else has told you that you have no self to find. I honor each individual that sets out on the journey of finding her self or him self despite all the odds. And I honor those who support you in remembering or learning that nothing is impossible!!!!
Along with this, I would suggest to clients and to caregivers, go beyond just what the books on grief talk about. Use bibliotherapy with folks. Help them with ideas on what to write, how to create ritual, and when to know when it's their voice they hear and can be true to or if it's voices from the past that we keep playing in our minds again and again. I'm not afraid to use non-grief books with clients. With this client, using Don Miguel Ruiz' book The Four Agreements taught her a new way of looking at the world. With others, I have brought them my Ipod to listen to podcasts of conversations from great thinkers and healers... It's time to move beyond the paradigms that we think are the only things that work... Reach out to anything that will awaken the spirit and help move the energy that is stagnant in someone you are working with. Whatever it takes to help them see that they can make a difference. Don't be afraid to talk about walking, eating healthy, drinking water... it's all about healing and balance and in the end, it's those things that are just as important on our grief journey than support groups and memorial services.
Dare to explore, to try, and to be present with the needs of the person before you. You might just get a giddy phone call from someone who though there was no reason to live and that life couldn't ever be different!!!
Until the next blog post, be well and spread your therapeutic wings!
If you aren't already a member, go to www.adec.org. I have written a previous blog entry about them. The organization is growing and changing and we are really proud of it. The 2008 conference is in Montreal... get your passport applications now. You won't want to miss the opportunity. Some of the best minds (and hearts) in the field....
Okay, so I was asked about books…… I'm biased, I will admit it. Who among us aren't. As much as I love Kubler-Ross, her books have historical relevance and her newer books, especially about her own dying process are her best. It's one thing to write about what you perceive in someone who knows they have a life altering illness; it's a different thing when you live a career in the field and then experience it yourself. But, I will list her books on the dying blog post when I have time.
So: grief (only started there because they are the books closest to my computer)
A Time to Grieve … Carol Staudacher… best book for grieving people…. short reflections or meditations that really hit on the experience of a grieving person. Can be read cover to cover or pick a page. Most entries are no more than 1 page. Think about that when someone is in early grief and they have to read paragraphs again and again.
How We Grieve – Thomas Attig; applied philosopher but his concept of relearning the world that we are creating as we grieve is one of my main tenets. He has a more user friendly book, The Heart of Grief
Transitions in Dying and Bereavement - Victory Hospice Society .. laid out wonderfully, excellent for professionals in the field, even better for clinicans who don't know a thing about hospice, palliative, end of life, etc. Sorry, I have a bias… not everyone can be a grief counselor though I give credit to people who think they can specialize in 23 different areas.
Grieving Mindfully – Sameet Kumar … You'll never find a nicer person. A wonderful book that I wish I had written. Sameet talks about mindfulness and grief in his work with people at Mt. Sinai in Miami. This book will lay the ground work for someone who wants to learn to be with their grief rather than hide from it.
Awakening from Your Grief – John E. Welshons… Again, a wonderful person. Taught by someone of the pioneers… Stephen & Ondrea Levine, Kubler-Ross, Ram Dass… what more needs to be said? He has a brand new book out… When Prayers Aren't Answered… I just got it a few weeks ago and plan to read it on the plane to SF in a few weeks. If it's as good as the first, we're all in for an amazing journey.
Swallowed by a Snake – Thomas Golden … a book about men & grief written by a male grief counselor, wow! Much of the work out there is focused on women or focused on intuitive grievers (want to know more, check out Martin and Doka…) Golden takes you on the epic saga of the masculine side of grief and was of transformation.
Okay, sorry, back to school work. These are my fav grief books. Will list books about dying and death soon. Keep an eye out.
Today the news was that more teens and young adults are completing suicide. The numbers are from a few years ago, around the time of the black box warning on the SSRIs. It was the first spike in numbers after many years of decline. What they are forgetting to talk about is changing one's world while changing one's body chemistry. It's about listening, watching, being witness whatever is.
I am writing about this here because I see a parallel with teens and grief. A lot of kids and teens get labeled things because professionals don't take the time to look beyond the behaviors before giving medication.
Irritability? Lack of concentration? Lost in thought? Mood swings? Ask 5 people and you'll get 7 different diagnosis. Some will say ADHD, some will say this is a "bad" kid, some will think bipolar. How about abuse? How about lack of home life? HOW ABOUT GRIEF?
It's been my experience and that of my colleagues that professionals working with kids and teens, or young adults don't know what grief looks like at this stage of life. Parents don't tell school that there has been a death or illness. No one asks the family what has been changing...
Two years ago, I saw a little boy that the very young teacher complained about and yelled at every time I visited. I have a sinking feeling, he was used to that kind of behavior at home and at school. But I listened and tried to stay present when we played games, when he drew pictures, when he told stories. Mom was gone. Dad in prison. He was living with his dad's girlfriend and he didn't know that 1. that was dad's girlfriend and 2. that she was pregnant with his little brother or sister. What he did know is that his grandmother died. He knew that a bunch of adults lived in his house who he wasn't related to and that this lady with the baby got shoved around a lot and was pushed into the street one night before the police came. And he, only in kindergarten, was deemed a bad kid and that label will probably follow him for a long time.
I tried to explain to the teacher what was going on, that grief alone could explain some of his "problems" but she was 20 something and dead set on getting the school district psychiatrist to get him diagnosed and on meds. No one looked at the web of losses that this little boy had endured... mom, dad, grandma, not knowing whom he lived with, not knowing when the police would show up.
We need to be more proactive when it comes to working with teens, kids, and young adults. We need to do not only standardized assessments but we need to do something more, listen when they talk, be present when they don't. This little one had no problems telling me his story as he jumped around, eating about three bites of his lunch, and wanting to play with everything in the social workers office. I had 3 kids, all in kindergarten, and had to see them during their lunch and recess. What kid would wouldn't be able to sit still when he was being "punished" by seeing some stranger and losing lunch and recess. Yet he was talking a mile and minute, trying to get his story out every week.
We need to listen, to put narratives together, hear what they are saying, and listen for the clues. They can tell us more about what we need to know than grabbing for the DSM..... Sometimes, think grief, at least losses ...... you might be surprised that some family therapy, some education, some caring might be more powerful than a little pill.
Most people don't get that we don't have a lot of control over our lives and loss brings that home. And for some, when they have one loss, they have many. I'm not talking about secondary losses; I'm talking brand new losses, new people dying.
I have known a woman who worked at hospice with me for 3 years and I've known her for 3 more. Very spiritual person and although she doesn't work for hospice, she still professionally has to deal with death often. She's lost her dad, her stepdad, her husband, her step brother, her dog in a house fire shortly after her husband's death, and she has had poor health off and on.
Makes me want to get out my old copy of "When bad things happen to good people"..... She's also "lost" two good friends, myself and another friend from work because our lives are so hectic. So where do you begin when you don't even have support to help you take a deep breath?
I've found myself grieving lately... the 6th year anniversary of my best friend, the person who helped me while my brother died. I sent her widower another letter, and still no answer. One more person gone. Friday, I said good bye to one of the few people at work that was caring, compassionate, went out of her way to be helpful, and brightened the whole place.
I've been struggling with a loss of some dreams but luckily getting my health back. And I know that this isn't profound. I don't have rockets and land mines going off in my neighborhood. But these all seem to pile up and bring up old grief issues. Do I need to go see a counselor; no I meditate more and go for my evening walk and write in my several blogs. Plus, there is always one more book to read or paper to write for school.
But, I can, in fact, lose myself in all of the daily things -- running to staples twice because I forgot something, being on the cell phone on my walk so I don't have time to think, or sitting in front of this bright screen and catch up on emails.
Or, I can write about it. I think when we feel overwhelmed, we have this illusion that if we do more to keep ourselves overwhelmed, the worst of the pain will be too numbed or too buried. It doesn't work that way. Those deep, existential issues rise up, in our attitudes, in our behavior, what goes on in our body, or in our thoughts.
My practice of meditation comes in handy during these times. Instead of being at the computer, I can sit in a still place, allow the feelings, thoughts, emotions, sensations that accompany or express my loss to come up and I can watch as the float away or cycle through my brain like a tornado. But, being mindful of what's going on, acknowledging it, holding it gently, and letting it fly or away or stick around, helps.
It reminds me that it is impermanent... as impermanent as my life is and the lives of those I grieve.
I have been using a lot of loving-kindness meditation with my clients recently; two in particular and have just started 2 more on it. Stephen Levine says that we are so merciless to ourselves. And if we are and grief shows no mercy, than we can be paralyzed.
Helping clients to acknowledge what's going on and having mercy for themselves while in the midst of it can help us from using silly phrases like, "I've been wallowing in it", "I've been on a pity party", or "I have been so weak". With loving-kindness, we start with ourselves and more out into the world, to include the losses, those people and situations that mean little to us, and those that get our dander up.
I have been teaching them that on a day like today, when it all feels like the pain or loss will always be there, I start with my breath and allowing myself to be merciful, to acknowledge what is, and to be patient with it. I don't do it well every day and there's day I'd rather not, but I do myself a service and I do my clients a bigger service when I can find a glimpse of mercy when it feels like it is all coming down on me at once.
I'm grateful to teachers like Lois Green, my friend who died 6 years ago today, for teaching me two things -- one yoga and the other is the phrase, take gentle care. I'm grateful to master teachers like Stephen Levine, Sharon Salzberg, Rollo May, and Paul Tillich who have taught mercy and loving kindness as well as presence in their own ways.
I don't tend to be conventional. I don't believe in stages of grief though I believe that Elisabeth Kubler-Ross was one of the most innovative people in the world. I don't believe grief is a feeling because I don't believe it does anyone any use to think of grief as a static emotion. To me, it is a process of taking the pieces of a shattered life and piecing them back together, hopefully taking a loving heart that's been broken and glueing it back together with compassion and awe.
So, when I read my copy of The Forum, the newsletter for the membership of the Association for Death Education and Counseling, my jaw dropped for a second time this year. At school, I wrote a paper about Rollo May and how his theory could be applied to grief counseling. I decided that since this was my passion I would submit a proposal for the 2007 ADEC conference and it was accepted.
Today, meaning making, from the social constructivists, has a lot of attention and a lot of people taking another look at grief. I wanted to look at how we as grief professionals could "be" with the bereft in a new way, moving beyond telling them what tasks, stages, or assignments they needed to do or go through before healing occurred. To my shock, people came to the presentation and the fact that it was standing room only for an unknown PhD student gave my heart cause to soar. People wanted to know what existential humanistic (EH)therapy had to offer the world of grief therapy.
Two days ago, I read the review of my presentation that Eric VandeVoorde, a fellow PhD student wrote. This is not to toot my own horn... I took a risk and put out ideas that pioneers in the field of existential humanistic (EH) psychology had and have been trying to get out into the world, to make a difference, to move us beyond standarized treatment or to move beyond the therapist being in the position to tell the client what they need to do to heal. I was in some ways speaking for the dead... a medium for great therapists like Rollo May and Carl Rogers and sharing the message of today's professors and therapists Kirk Schneider, Candice Fischer, and Myrtle Heery.
This is the end of the review that Eric shared with our membership.... "It is important for therapists to be engaged with their clients to better understand their world. No formula exists that determines the best course of action and their in no linear movement that can be followed. Rather, the client and counselor search together for meaning and work together to help the client create a new life."
"At one point, Stevens stated that bereaved individuals have "lost their sense of being, the death of the concept of the self, which creates anxiety, fear and isolation for the client. It is at this time that the courage to create a new existence becomes the gift of loss". I left her presentation with a deep sense of hope and took solace in the paradox that although death is a tremendous loss it also contains the potential for tremendous growth. Perhaps the greatest personal lesson I will carry away from Stevens' talk is that it would be an error to confine the concepts of existential humanistic psychology to strictly clinical settings. Their wisdom is meant to be applied to our every day lives."
Eric honored me with his words and in turn, I am honored and blessed that mentors Dr. Tom Greening, Dr. Kirk Schneider at Saybrook Graduate School and Research Center have carried on the tradition so that a newer generation can bring these concepts out into the worlds we work in and to the people we are engaged with.
To me, it is like socially engaged spirituality at it's finest... to be reminded that it is ourselves, our presence, our being, mind, and spirit that we bring to the encounter that is as healing as the internal journey of the grieving client. It is in taking risks to be genuine that matter.
And it is well worth going out on the limb if it allows others to see the beauty of blending existential humanistic (EH) theory with grief therapy. I appreciate that ADEC gave me the opportunity to share my passion with the hundred people the endured a small hot room and for those who took the chance to see what the EH tradition could offer the world of grief therapy.
For anyone interested in references for further introduction to existential humanistic (EH) theory, you can contact me at jstevens@namasteconsultinginc.com.
What follows is a press release from the APA about a research article that I was thrilled to see. I've heard too many researchers in end of life care state that grief support and therapy make no difference in the lives of those we serve. For those of us who do the work, we know better and have held ourselves up and supported what we do. Now, two researchers have championed not only our battle, but the call for finally getting it... people are helped and sometimes they can tell us narratively but not quantitatively. I applaud Larson and Hoyt for searching deeper!!!!
APA Press Release
July 29, 2007
Contact: Pam Willenz
(202) 336-5707
People suffering from grief can be helped; Flawed science led to unsupported negative reviews of grief counseling
WASHINGTON, DC—Despite frequent claims to the contrary, there is no empirical or statistical evidence to suggest that grief counseling is harmful to clients, or that clients who are “normally” bereaved are at special risk if they receive grief counseling, according to a new look at the scientific literature on grief counseling.
A report published in 2000 claiming that 38 percent of clients (and close to 50 percent of so-called “normal” grievers) deteriorate as a result of grief counseling has been frequently cited in the scientific literature. The new review, by co-authors Dale G. Larson, PhD, of Santa Clara University and William T. Hoyt, PhD, of University of Wisconsin-Madison, found that the data on which these figures are based have never been published and came from a student dissertation that was never peer-reviewed, using a statistical technique attributed to another student’s master’s thesis, also never peer-reviewed.
The new findings are reported in the August issue of Professional Psychology: Research and Practice, published by the American Psychological Association (APA).
The belief that conventional grief interventions are potentially harmful has become common wisdom among bereavement researchers in the seven years since the published report, and has been featured in the national media. Larson and Hoyt reviewed published and unpublished meta-analyses of more than 50 outcome studies and solicited the assistance of the APA to conduct a peer review of the dissertation on which this claim was based. Reviewers were unanimous in their conclusion that the statistical analysis on which deterioration claims were based is fatally flawed.
Larson and Hoyt documented the spread of the deterioration claims from specialty journals to journals aimed at a wider audience of social psychologists and general psychologists, and note that authors of these articles cited the published summary rather than the student dissertation. This implied that authors citing the finding never examined the data on which it was based, they said. “It is no exaggeration to say that these deterioration claims have stimulated a revolution in our views about grief counseling, from cautiously optimistic to deeply pessimistic,” said Hoyt. “It is disturbing that such radical claims, which contradict clinical experience and even common sense, could proliferate in journals, at conferences, and in national reports without anyone’s ever acting on the basic scientific obligation to examine the data and analyses on which they were based.”
A related claim from advocates of a pessimistic view of grief counseling has been that the average effectiveness of these interventions is small or nonexistent. According to Larson and Hoyt, the most rigorous peer-reviewed meta-analysis so far - Allumbaugh and Hoyt (1999) – found that the effects of grief counseling were positive, although somewhat smaller than those generally seen in other forms of counseling. However, they concluded that this difference may have been attributable to sampling procedures in the studies reviewed. Re-analysis of a subset of studies using self-referred clients showed strong positive effects, comparable to those observed in psychotherapy generally. “The studies showing weak or null effects are usually those using recruited clients, many of whom enter the study two or more years after the loss they are presumed to be grieving. It is not clear that we learn anything from this type of research about the benefits of grief treatment as it is actually conducted,” said Larson
As a practicing grief counselor, Dr. Sean O’Riordan at Stanford University agreed that the negative view of grief counseling needs correcting. “I’ve been working with grieving clients for the past 20 years and they consistently report that our work together is enormously beneficial. It would be a tragedy not to offer counseling to these people in their time of need.”
Article: “What Has Become of Grief Counseling? An Evaluation of the Empirical Foundations of the New Pessimism,” Dale G. Larson, PhD, Santa Clara University; William T. Hoyt, PhD, University of Wisconsin-Madison; Professional Psychology: Research and Practice, Vol. 38, No. 4.
Full text of the article is available from the APA Public Affairs Office or at http://www.apa.org/journals/releases/pro384347.pdf 
Dale G. Larson, PhD, can be reached by phone at (408) 554-4320 or by e-mail.
The American Psychological Association (APA), in Washington, DC, is the largest scientific and professional organization representing psychology in the United States and is the world’s largest association of psychologists. APA’s membership includes more than 148,000 researchers, educators, clinicians, consultants and students. Through its divisions in 54 subfields of psychology and affiliations with 60 state, territorial and Canadian provincial associations, APA works to advance psychology as a science, as a profession and as a means of promoting human welfare.
