"Going Home" sung by Libera

Susan Breiddal sent me this link knowing that it would be enjoyed by our community.

"Libera" is a group of 7-13 year old boys who live in south London. The song, "Going home" is apparently an old negro spiritualist work song. It is exquisite.

At the same link, two people have dedicated the song to loved ones who have died recently. I wonder how people who are dying would experience this. Thoughts?

http://www.youtube.com/watch?v=o2aLSat3h0w

Kath

BCHPCA Conference, May 2010, Call for Abstracts

Hi all,

Exciting update on the BCHPCA Annual Provincial Conference in Surrey on May 14-15, 2010. The theme will be "Raising the Torch: Expanding the Vision".

Mark your calendars!

The call for abstracts is out. Submission deadline is Jan 28, 2010. Information about online submission can be found at the following link:

http://abstracts.scolars.com/conferences/bchpca/index.php

We look forward to an inspiring conference. Keynote speakers to be announced soon....

Kath

Wonderful update for the BCHPCA conference.

Plans are moving along so well for the annual BCHPCA conference in Surrey BC on May 14-15, 2010. The theme is "Raising the Torch: Expanding the Vision". Keynote speakers are all individuals who are committed to their area of work and are thrilled to be invited to speak... more to come on that.

FYI, the Call for Abstracts is now out. The Submission deadline is January 28, 2010

..." The BC Hospice Palliative Care Association (BCHPCA) invites all interested parties to submit a presentation abstract (oral or workshop) for the upcoming annual conference which will take place in Surrey, BC, May 14-15, 2010. For complete details and the on-line submission form visit:

http://abstracts.scolars.com/conferences/bchpca/index.php

Submissions will be accepted only via the on-line method and form. Submissions will be reviewed by the abstract review committee and accepted abstract presenters will be notified in February 2010."

I look forward to this conference, it is shaping up to be a stimulating event.

Online webinar series on "Hospice and Palliative Care for the Dialysis Patients"

While I am in the mode of suggesting great online resources I want to mention a valuable educational opportunity available through the MidAtlantic Renal Coalition in the states.

The Renal Coalition has taken key presentations from the NHPCO preconference seminar that I attended in September and developed four webinar presentations. I found this information extremely interesting. It is a wonderful blend of hospice and nephrology.

The presenter is Dr. Alvin Moss, aka "WOODY". In the September blog I described him "this gentleman has such a contagious love and enthusiasm for his field, and greets the topic with the enthusiasm of a kid who has just discovered a chocolate factory!"

“The series Hospice & Palliative Care for Dialysis Patients will explore issues surrounding hospice and palliative care in the dialysis setting. The series is targeted toward renal, hospice and palliative care clinicians who wish to expand their knowledge of end-of-life care for dialysis patients.

Four courses will be held between January and April 2010, covering topics such as the relevance of palliative care and hospice for dialysis patients, pain assessment and management, symptom assessment and management and incorporating palliative care into the dialysis unit."

Here is the link to the webinar flyer, which includes registration materials: http://www.kidneyeol.org/EOLWebinars2010.pdf .

(Note for Canadians: A portion of each course will probably include discussion of how to help the dialysis patient qualify for hospice benefits.)

This is a program that blends well with the courses and goals of our online learning program... "Death Dying and Palliative Care Education Online" available through www.LDMonline.ca . I am happy to refer people to this resource!

Kath

Online Suport Group for Canadians who have been diagnosed with cancer and their families/loved ones

I am writing about another innovative online resource.

As part of a nation-wide effort to provide high-quality psychosocial care to all Canadians affected by cancer, several of Canada's leaders in psychosocial oncology partnered to provide counsellor-led online support groups.

These online support groups are available to Canadians who have been diagnosed with cancer and their families/loved ones.

Sessions are free of charge no matter where you live..

Weekly sessions are 1.5 hours long and take place in "real time".

Groups operate continuously throughout the year for 8 - 10 weeks at a time.

If you are interested in attending, or know someone who is, have them call Cancer Chat Canada toll-free at 1-800-663-3333 extension 4955 or 4966, or email cansco@bccancer.bc.ca

I first heard about this support group when I was in Winnipeg from a lovely warm woman named Jill Taylor Brown. As warm and lovely as Jill is, I really like the idea that in order to attend this group I would not have to fight my fatigue, get dressed, find the car, navigate traffic, find parking etc.! I like the idea of being able to attend the group while I snuggle in front of my fire, look out the window at snow drifts in the fields, or across cool mountain ranges, or listen to the waves lap at the shore…. Hm… sounds like my kind of support group! I look forward to hearing how the groups unfold!

I hope that support groups targeting people caring for those dying with chronic illness will develop a similar program. I image it could really fill a need.

If anyone reading has participated, feel free to comment! (What were you looking out the window at while attending the support group?)

Kath

Exciting project proposal - Music Care Conference with Room 217

Hi all,

Music is an intricate part of life passage and has tremendous therapeutic value. There is such a need for us as caregivers to learn how to use music as part of caregiving. Room 217 Foundation (led by Bev Foster) has submitted an idea to the Aviva Community Fund contest called “Music Care Conference”. This conference would bring together community stakeholders in music and care from across the country to provide both information and inspiration that will have far reaching and prolonged impact on how the effective therapeutic use of music can make a difference to quality of life and well-being.
The way this contest works is that the idea with the most "votes" wins. Voting occurs on a daily basis until December 16th.
Please consider voting on a daily basis.

Click here to register http://www.avivacommunityfund.org/ideas/acf2679and then vote every day until December 16.

Thanks much! And good luck to Room 217!

Kath

Highlighting Canadian VIrtual Hospice

October 20th

I am in Winnipeg attending the CHPCA conference. It is a treat to rub shoulders with such a wonderful group of individuals who are so passionate about providing excellent care for the dying.

Our booth for Life and Death Matters is located next to “Canadian Virtual Hospice”. This is one of "Canada's gems"! CVH provides resources for patients, family caregivers and professionals. Their website is rich with information, previously asked questions and answers, and links to relevant sites. Perhaps most important, they are available to respond to questions – and usually respond within 24-48 hours!

The team includes Clinical Nurse Specialists, Brenda, Lisa and Simone (wonderful women!) the physician Mike Harlos (a gem of a man!), and the social worker Fred Nelson (I think he works nights as a comedian). They divide their time between clinical work and providing support online.

They respond to questions using language that is easy to understand with answers that are grounded in best practice.

CVH has pamphlets, book marks, and trinkets to advertise their service. I love to hand these out during workshops, but think they would also be a useful handout to make available on hospice units, hospital wards, etc..

Be sure to check out the CVH website, mark it as a favorite and pass it along!
www.virtualhospice.ca


Kath

Canadian Association of Practical Nurse Educators - Conference

We returned Wednesday from PEI where we attended the conference for the Canadian Association of Practical Nurse Educators. We saw the Anne of Green Gables Musical which was superb, and walked the streets and paths of Charlottetown.

Eighty educators from across Canada came together to discuss education, and to enhance their abilities to provide excellent education for the students in the Practical Nursing programs.

The role of the LPN has changed, the scope has expanded! The colleges are tasked with helping students develop competencies that once were covered in two and three year RN programs.

Elaine Leclerc spoke about generational differences, (the Traditionalists, Baby Boomers, Generation X, and the Millenials) and how these differences play out in the classroom setting and in the workforce. It was fascinating. I reflected on the many times we talk about multicultural issues, but neglect to contemplate the multigenerational conflicts... stemming from individuals coming from such different cultures within the same apparently homogenous community.

Barb Fry (barbfry.com) had us hooting about challenges in the workplace while reflecting on our behaviours and attitudes and how they impact patient care, workplace relationships and quality of worklife. Barb discussed ideas for working with toxic characters such as the "workplace queens" and "negaholics". What was most impressive to me was her resilience when her job was cut due to the merger of several hospitals, and how she was able to turn that into a wonderful time of growth and new opportunities. Years ago I came upon a quote that read
"Prepare then for opportunity disguised as loss". Barb has done a good job of doing just that!

It was a privilege to present the "Essentials in Hospice Palliative Care" resources at the conference, and I hope we can continue to provide support and resources to educators in the future.

Kath

End Stage Renal Disease and Hospice Palliative Care

Helo from the National Hospice Palliative Care Organization, and the preconference seminar titled "Hospice and Palliative Care for Dialysis Patients: Past Successes and Remaining Challenges" in Denver Colorado,

Seminar sponsored by Mid-Atlantic Renal Coalition and the National End of Life Coalition. Presenters included nephrologists from the UK, Canada and the US, as well as nurses and social workers from the US. Attendees represented the interprofessional team, and equal representation for the Hospice Palliative Care and the Renal/Dialysis communities.

It was intriguing to hear about the evolution of thinking and practice within the renal community, the research that has and is being done to further develop knoweldge and direct best practice, and the collaboration between the hospice palliative care and the renal communities.

The topics addressed included:

• The burden of symptoms experienced by patients with end stage renal disease (ESRD).
• Pain and Symptom management, specifically some guidelines for use of medications .
• Dialysis is life prolonging not curative.
• Decision to withdraw from dialysis does not always occur prior to death, when it does, it is often because burden is greater than the benefit, dialysis is unable to keep blood levels within the norms, and decrease in funtioning.
• Discussions about end of life issues are often difficult and usually do not happen.
• Patients want to have end of life discussions.
• Significant discussion about the need to address the issue of prognosis, severity of illness, and decisions to stop dialysis BEFORE starting dialysis. How this discussion can best occur, etc. (Reminded me of the discussion about needing to discuss end of life issues with patients at time of diagnosis with dementia related illnesses and definately before being admitted to a facility.)
• Research to help identify those patients who will benefit from dialysis and those who will not benefit from dialysis.
• Discussion of "conservative" management of patients over 75-80 years of age. Conservative managment outlined excellent hopsice palliaitve care (similar to addressing the 8 domains of care/common issues highlighted in the CHPCA Model to Guide HPC) with emphasis by the nephrology team on disease management.
• Discussion as to who is best to provide this care, is it the renal community who are already involved and have developed deep relationships, or is it the hpc community.

My conclusions:

Exciting to see collaboration and cross pollination between the two communities! Both communities will benefit from the expertise of the other!

In the coming years we will see more research and from that develop clear guidelines for use in this population.

My hope: I will incorporate this information when I care for patients with end stage kidney disease, and consider this as I plan ongoing education.

My favorite resource: GREAT WEBSITE: http://www.kidneyeol.org/

A cool experience: meeting Alex Harper (nurse) and her interprofessional team from St Pauls hospital in Vancouver BC who are starting a renal palliative care program!!!! Way to go!

A joyful moment: watching Dr. Alvin Moss, aka "WOODY" address the group. This gentleman has such a contagious love and enthusiasm for his field, and greets the topic with the enthusiasm of a kid who has just discovered a chocolate factory!

Tomorrow the NHPCO conference starts.

Kath

The Arbutus Tree....

The Arbutus tree - Growing on the edge of land and sea, in rough and rocky conditions, thrown and tossed by the winds; the eczema like reddish brown bark peeling off in papery flakes, stands as a symbol of strength, commitment, perseverance, determination and survival, amidst so many adversities. In these ways the Arbutus tree symbolizes the strength, beauty, and uniqueness of the human spirit and our ability to grow in the midst of suffering; and to live fully, even in the face of death and dying.

Christine Piercy writes, "The Arbutus tree represents that place between life and death, often perched precariously at the meeting place of land and ocean. So it is with those who are dying and those who care for them, as the dying hover in this place of transition between life and death. Those of us who encircle them may long to bring them back into life, or wish that death would take them from this intensely painful place of 'in-between'. Is it possible that, like the Arbutus tree, there can be growth and beauty in such a place?"

Obama’s health care plan – Reimbursing physicians for discussing end of life treatment

As a hospice palliative care nurse I was eager to hear about Obama’s health care plan regarding end of life issues. I was naively surprised to read media reports suggesting Obama was going to bring in “death panels”, and “push the elderly to early death”. From my read, the bill simply allows physicians to be reimbursed for discussions with patients about end of life issues, and advanced directives.

Stewart Florsheim, a board co-chair of Compassion & Choices of Northern California, an organization that helps the terminally ill make end-of-life decisions wrote:

“… Section 1233 simply ensures Medicare reimbursement for voluntary consultations about end-of-life treatment between patients and their medical practitioners every five years, or more often in the case of a life-threatening change. The consultations might include discussions about hospice, options for treatment (including pain management) and the importance of having an advance directive. The bill would help validate and support the work of palliative care doctors whose services are often subsidized by the rest of the hospital because they do not generate much revenue.” See
http://www.jweekly.com/article/full/39774/cruel-rumors-about-death-panels-have-no-place-in-health-care-debate/ for the complete article.

Physicians are in a unique relationship, and have the opportunity to provide valuable information and to support individuals to make informed decisions. Without advanced discussion people may not have the blessings of: discussing their illness, understanding possible outcomes of exacerbations of their illness, and making informed decisions in advance. Rather, they may die “unexpectedly” (or so it seems) in emergency departments/specialty care units/acute care wards - all too often in crisis mode.

I hope that the National Hospice Palliative Care Organization and those working in Hospice and Palliative Care in the USA will help the Americans understand that discussion and preparation is part of excellent health care. This may also lead to the discussion that death in the ICU or other acute care settings, with all the bells and whistles may not be best “end of life care”!

I also hope that Canada will follow Obama’s lead and reimburse our physicians for discussing end of life care and advanced directives with our elderly and with others whose physical condition is unstable!

Kath

Review of decision making following Hurricane Katrina

Last weekend the New York Times published an excellent article by Sheri Fink about the events that transpired at the Memorial Medical Center in the days following Hurricane Katrina. http://www.nytimes.com/2009/08/30/magazine/30doctors.html?_r=1

Sheri researched this story since the hurricane four years ago. As I read the 13,000 word article, I understood more clearly the incredible challenges facing doctors, nurses, patients, and family members during this crisis.

It is a good thing for us to revisit any such situation and examine how to improve our response in future crisis, however, I am personally unable to criticize any individual for their commitment, caring, endurance, and the challenging decisions that were carried out in the most difficult of circumstances. I also empathize with patients and families who did not understand decisions that were made.

I highly recommend this article.

Kath

Family History

I could not resist posting the photo of my great grandmother. “Granny” a.k.a. Katherine MacDonnell lived until she was nearly 102 years old. She was feisty, determined and wonderful. As a teenager I cared for her while I worked in a small “rest home” caring for six other elderly persons. I prepared meals, made beds, did laundry and provided a bit of personal care. How I loved to bathe her wrinkled skin and help her get in and out of the bath tub. I enjoyed her talking about the “old folks” who lived there… all of them at least a decade younger than her.

Unfortunately I was not with her when she died. I continue to dream about her from time to time, and even if only in my dreams, I cherish her.

-Kath

"Unprecedented!"

Over the past few years I have been developing a presentation titled “Unprecedented! We have never died like this!” This is about the changes in the way many of us are dying (by chronic illness), the challenges of death by chronic illness (e.g. difficulty in prognosticating), the declining number of caregivers, and the coming of the Baby Boomers! Today I read an article with global numbers citing this problem:

“According to the National Institute on Aging (NIA), we are aging – not just as individuals or communities but also as a world. In 2006, almost 500 million people worldwide were 65 and older. By 2030, that total is projected to increase to 1 billion – one in every eight of the earth’s inhabitants. Significantly, the most rapid increases in the 65-and-older population are occurring in developing countries, which will see a jump of 140 percent by 2030. For the first time in history, people age 65 and over will outnumber children under age 5. ….” Retrieved: July 2, 2009 http://www.prweb.com/releases/2009/end-of-life/prweb2595594.htm. Aging Population Growth Spotlights Training Needs of Health and Mental Health Professionals. Dr. L. Christie.

The author, Dr. Leo Christie supports the idea that the challenges to individuals, families and caregivers are unprecedented.

Life and Death Matters, the workshops, resources, online education program, and website are developing in response to these needs – “Educating today’s learner to care for tomorrows dying”

It is my hope that this blog will link diverse caregivers with ideas, resources, references to support them in providing excellent care for the dying.

Have a great day,

Kath

To view reference: http://www.prweb.com/releases/2009/end-of-life/prweb2595594.htm
Article:
Aging Population Growth Spotlights Training Needs of Health and Mental Health Professionals
Contact:
Leo Christie, PhD, CEO
Professional Development Resources, Inc.
904-645-3456
http://www.pdresources.org/promo/prweb9