Norway Tragedy - reflections

I am not sure where I was when the tragedy occurred in Norway on June 22nd, but I know where I was when I heard about it.

Moments etched in my mind - Moments and hours in the dark of the night -

a sense of unreality that fellow human beings have the ability to be so cruel and to cause such pain.

sharing the sorrow of individuals, families, friends and communities.

pondering the mothers and fathers of the dead and injured.

pondering the trauma of those who survived.

knowing that there is a mother out there somewhere anguishing... asking HOW and WHEN and WHY her son would or could do such evil.

thinking of the police and rescue team members.

thinking of those who planned and led this camp where youth met to consider a better world.

and thinking of adventures, hikes, conferences, and experiences with our kids, and with our community of kids...

a moment of silence to share globally such sorrow.

Kath

Norway Tragedy - responding to kids

We are in the midst of teaching the course "Walking and Talking with Kids about Death and Dying". In preparation for the course Wendy (Kurchak) found a short Youtube video interview with Dr. Bob Hilt from from Seattle Children's Hospital addressing "how to talk to kids about global disasters". Dr. Hilt provides some key points and a role play to highlight his points. This video is timely, and guidelines would be helpful for all parents! http://www.youtube.com/watch?v=V5zaS_2Fnd0

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Thomas Attig - The Heart of Grief

Victoria BC is fortunate to be the new home of Dr. Thomas Attig. Today I had the privilege of visiting with Tom as we sat by the Victoria breakwater at the Ogden Point Cafe. We talked about one of my favorite books which Tom actually wrote - "The Heart of Grief". I still remember the day that I found this book, read the opening quote, "Death ends a life it does not end a relationship". Tom was the first author I found who adequately addressed the desire for an ongoing "relationship" with the deceased, pointed out that people do not want to stop hurting if they feel that they are supposed to "sever" the relationship with their deceased loved one, and identified the many many ways that people continue to be influenced by their loved one even after death.

In The Heart of Grief, Tom recounts "dozens of stories of people who have struggled with deaths in their lives, he describes grieving as a transition from loving in presence to loving in separation.... He tells stories, for instance, of a young girl taking some of her dead sister's practical advice as she enters high school, a widower realizing how much intimate life with his wife has colored his character, and an athlete drawing inspiration from his dead brother and achieving what they had dreamed of together. Far from forgetting our loved ones, Attig urges us to explore ways in which our memories of the departed can be sustained, our understanding of them enhanced, and their legacies embraced, so they continue to play active roles in our everyday and inner lives." http://www.griefsheart.com/heartofgrief.html

For those who want to hear Tom speak, you can listen to him in the "Life and Death Matters Podcast Library"

Thanks Tom for a great visit, and THANKS Tom, for a GREAT BOOK!!

Kath

Are we preparing our health care professionals to provide excellent care for the dying?s

I used to think that all dying people should be registered with a hospice organization, receive Cadillac services, and die supported by the specialty care team.

Over the past few years I have been intrigued by the work of Palliative Care Australia (PCA). PCA suggests that the majority of the dying can and will be cared for and have their needs met by their primary care teams, and not by the specialty hospice palliative care services. This means that rather than working to increase referrals to hospice programs that we need to educate all members of the health care team to provide care for the dying, across all settings.

What is happening across Canada to prepare the health care team during their core curriculum to provide excellent care for the dying?

Registered Nurses - In 2009 the Canadian Association of Schools of Nursing (CASN) announced “a new educational resource developed by the CASN Task Force on Palliative and end-of-life care to assist educators in curriculum development. See http://casn.ca/en/Whats_new_at_CASN_108/items/81.html In March 2011 CASN Task Force met in Ottawa and with input from Stakeholders revised this list. For more information and updated resource contact the CASN office.

Practical Nurses –The National Blueprint for 2012-2016 is now available. My limited understanding is that the Blueprint only outlines knowledge that can be tested on a multiple choice exam. The Blueprint does not contain competencies or indicators. Does anyone have information on national or provincial projects to address the development of Palliative End of Life Competencies within core curriculum for Practical Nurses?

Health Care Workers (HCW) A national committee is currently developing competencies for “unregulated caregivers” to help standardize education and increase job mobility. Considering that HCWs are often the eyes, the ears and the hands of the health care team, and they provide care that is critical to the implementation of any Care Plan, it is my great hope that the committee will address competencies related to Hospice Palliative End of Life.

Physicians Competencies have been developed for educating Medical Students (Educating Future Physicians in End of Life Care EFPEC) and similarly competencies are currently being developed for Social Workers. I am not sure what is being done for educating pharmacists and other members of the health care team.

If anyone has further updates or information, please add to the discussion! Go to

http://www.facebook.com/pages/Life-and-Death-Matters/154744847924194

Thanks

Kath

Hospice Africa, Hospice Africa Uganda

We are thrilled to have students in our current online course, "Walking and Talking with Kids about Death and Dying" from Nepal, Kenya, Tanzania, and Uganda. One of the participants who wanted to sign up, but is unable to at this point, asked for information on Hospice Africa, and asked that I link her with the site. As with other good links, I am including some links here, and a book that addresses volunteering with Hospice Africa, as well as describing, chronicalling, and discussing the development and work of hospcie in Africa!

The website for Hospice Africa is http://hospice-africa.merseyside.org/index.html

The website for "All Africa" is http://allafrica.com/stories/201106060201.html This site seems to link with a number of ads, as well as links for information about hospice in Africa.

Find more about Hospice Uganda at http://hospiceafrica.ie/hospice-africa-uganda. Hospice Africa Uganda is linked closely with Hospice Africa, and to Ireland to Dr Anne Merriman. Dr Merriman's book is the "Audacity to Love - The Story of Hospice Africa".

Ateduobie, and others, if you would like to direct us to a specific site or resource, please send that information, or comment on our facebook page.

Integrating Hospice Palliative Care Education in Core Curriculum

To integrate or not to integrate - that is the question: Hospice Palliative Education in core curriculum.
My preference is a combined approach! It is important to set aside a place where the focus is on Hospice Palliative Care philosophy, principles and practices. A separate course helps to ensure that the message is not diluted and lost in the context of an entire program. On the other hand, how can you discuss respiratory illnesses and not discuss the process of dying at end stage with COPD? How can you teach about the kidney without teaching about dying with renal disease?
The reality is that illnesses need to be followed from diagnosis through to death.
Body systems should likewise be followed from healthy function through to dysfunction and death.
Human development should follow conception through birth, ages and stages and follow through to death.
So my vote is a "combination" of methods for teaching Hospice Palliative Care, whether you are educating Health Care Workers, Practical Nurses or Registered Nurses.
What do you think?
Please go to facebook to comment! http://www.facebook.com/note.php?created&&note_id=188486651205552
Kath

Bridging the apparent gap between the Hospice and the Gerontology worlds

Good morning!

I received an email this morning from a dear colleague from Hood College whose goal is to help bridge the apparent gap between the hospice palliative care world and the gerontology world.
Kim asked for the names of a few articles, a few leaders who have helped to develop my understanding of gerontology, as a hospice palliative care nurse.

Mercedes Bern Klug, wrote an article titled "The Ambiguous Dying Syndrome". Published in the Journal of Social Work in 2004, Mercedes does an incredible job of addressing the challenge of dying with chronic illness over a long, unknown period of time.

Ladislav Volicer, M.D., Ph.D wrote a paper Alzheimers Association titled, "End-of-life Care for People with Dementia in Residential Care Settings" which is the most thorough article on the topic that I have seen. His references will lead you to many other articles.

A few of my favorite books:

Joanne Lynn wrote a great book on dying with chronic illness, titled: "Sick to Death and Not Going to Take is Anymore!: Reforming Health Care for the Last Years of Life." Her stats are American based, but reflect Canadian trends regarding dying with chronic illness, unknowns, etc..

There are a few good texts on Palliative Care and Dementia, including one by Volicer and Hurley, another by Morrison and Meier.

The Hospice Foundation of America has a series of books, with a new book published each year. They have a few books that address the topic of losses associated with aging, and dying with dementia.

I posted an entry to facebook on this topic today. Please feel free to add your favorites to this list!

Kath

Comedy in the midst of loss - Carol Scibelli

Carol Scibelli is a comedian whose husband died in 2006. Seeing humour provided her with solace, or as she calls it "grief relief". She is wired to be funny, she presents humor that is honest and knows that laughter can be healing.

Her book "Poor Widow Me" may provide some laughter for those looking for moments of relief. Sample: "There I was, his wife, his widow, sitting between our children in the first row, reserved for the closest of family; probably the only time in life that people don't want the best seats in the house."

Her blog, "Last Spouse Standing" provides lots of great laughs! http://poorwidowme.blogspot.com/

My only regret of the conference is that we did not get a chance to "do dinner together" - It would have been great fun!

Thanks Carol!

Kath

Ken Doka on Disenfranchised Grief

One of the highlights of the ADEC conference was a half day session with Ken Doka on Disenfranchised Grief.

Ken started the session by trying to set us all at ease, encouraged us not to worry about what we have said or done in the past and mentioned an interesting article, “On doing everything right, a case study in failure” that sounds interesting.

It was interesting to hear his "ah ha" moment which gave seed to the development of this theory of "Disenfranchised Grief". Ken coined the term to describe the grief that occurs when the loss is not socially sanctioned, openly acknowledged or publicly mourned for the following reasons:

1. The relationship is not recognized,
2. The loss is not acknowledged, or
   
3. The griever is not recognized.

Ken highlighted ways the theory has been applied and how it has grown in the years since he first wrote about it.

He also wove the idea of grieving styles, Instrumental vs Intuitive, into the discussion. He suggested that disenfranchised styles include:

1. Males who are intuitive grievers (a mans' tears may be perceived as weak)
   
2. Females who are instrumental grievers (a woman may be perceived as being unfeeling)
   
3. People who are instrumental grievers early in the loss (we may expect people to express feelings rather then focus energy on the work/tasks that need to be accomplished)
   
4. People who are intuitive grievers later in the loss experience (we become impatient with people who continue to express grief over time)
   
5. Counsellor disenfranchisement of instrumental grievers who do not want to talk feelings (this hopefully has/is changing with the concept of instrumental vs intuitive grieving styles)

Ken introduced me to "empty arm syndrome" associated with perinatal loss. Following the death of a baby, mothers have sometimes developed pain in the heart, breasts, lower abdomen and upper arms. The location of the pains symbolizing the connection of mother and babe.

Ken also discussed his adaptation to Bill Worden's Tasks of Grief:

1. Acknowledge the loss
2. Express manifest and latent emotions (express those emotions that are both obvious and those that are present but not easily visible or actualized)
3. Adjust to a changed life
4. Relocate the loss
5. Reconstitute faith and philosophic systems challenged by the loss.

Ken identified interventions for each of the "tasks" and provided some stories to anchor the learning.

After years of hearing about Ken from our mutual colleagues, Terry Martin and Dana Cable, reading his books, seeing his name in much of the current grief literature, and having him interviewed for the Life and Death Matters Podcast Library, it was a great pleasure to hear/see him present.

Kath

Death Education - an argument for death education presented by Kathy Kortes-Miller

Kathy Kortes-Miller from Lakehead University in Thunder Bay presented "Situating Death in Education". Kathy provides a strong argument for the question "Why include death education in the schools?"

Kathy kept the group spell bound and I think she had us all wanting MORE! I was proud to be Canadian just to listen to her. She articulated ideas that many of us are familiar with, but she added updates, included great quotes, thoughts and perspectives, and then touched on a few challenges. Her visual presentation was excellent, and the companion handout summarized the presentation.

Kathy articulated well the vehicle of education as a "force for change... the medium by which information is communicated and understanding enhanced.... Education directly influences attitudes and values and can assist in defining, strengthening or modifying them."

Kathy said, "We are not free to choose whether anyone will learn about death, though we have some choice about how they will learn." She suggests that death education specifically "will not prevent death as a normative life event but rather it will work to prevent some of the negative side effects of not understanding dying and death.... Perceiving death education as primary prevention allows for opportunities to begin engaging in the important discussions around the meaning of death and the quality of life which guide our living until we die."

Kathy also discussed another one of my passions - the need to provide better support to the PSWs who provide 80% of patient/resident care in long term care in Ontario!

Thanks and Great Work Kathy!

Kath

Conference: "Association for Death Education and Counseling" and the "International Conference on Grief and Bereavement in Contemporary Society"

Our GREAT ONLINE FACILITATOR Jen Wortham enticed me to attend the ADEC and ICGBCS conference in Miami this past week. I am delighted that I followed her lead and attended!

The combined conference brought participants from around the globe. My greatest grief was in having to choose between several interesting and exciting workshops for each concurrent session, and the frustration of only being able to be in one place at a time.

For those who are not familiar with ADEC, it is the only group that I know of whose mission includes "Death Education". Postings for the next while will include reflections from the ADEC conference, links to resources/sources.

Interview with Stephanie Staples

Stephanie Staples from "Your Life Unlimited" provided an upbeat, inspiring and practical keynote address titled "Life Support for Nurses – Burnout Prevention that Works!"

After the conference Stephanie interviewed the Katherine Williams who spoke on "Bullying in the Workplace" and myself. If you would like to see the video go to: http://www.youtube.com/watch?v=cHw8IDczq5

Kath