Illustration by Joanne Thomson for the new text, "Integrating a Palliative Approach: An Essential Resource for Personal Support Workers" Coming in November 2014

Illustration by Joanne Thomson for the new text, “Integrating a Palliative Approach: An Essential Resource for Personal Support Workers” Coming in November 2014

Well we couldn’t be more tickled that the new text, Integrating a Palliative Approach: Essentials for Personal Support Workers, and companion workbook, will be available for purchase in just a couple of weeks!

For all of you that have been SO patient, we invite to view a Digital Preview of Integrating a Palliative Approach: Essential for Personal Support Workers with excerpts from the text.

We’ve had overwhelmingly positive reviews of the new resources from well respected industry leaders and we CAN’T WAIT to share these with you!

“Long term care homes now provide “care for life”, with approximately 20% of their residents dying each year. Personal support workers are a vital part of the long term care team that provides a palliative approach to residents’ care from admission to death. Kath Murray has created an invaluable educational resource for PSWs that addresses their key learning needs for providing residents’ physical comfort and meeting the psychological and social needs of residents and their families. It is exceptionally practical and user friendly, providing practical tools, strategies and concrete examples from experts and front line workers.  There is much needed attention given to managing the emotional impact of palliative caring on the caregivers and engaging in conversations related to end-of-life issues.  In my research that created the Quality Palliative Care in Long Term Care Alliance toolkit to implement the palliative approach in long term care homes, we identified the tremendous need for a resource such as this one for PSW education.  I think it has national relevance and can be used both in pre-service and continuing education for PSWs. I strongly recommend it.”
Mary Lou Kelley, MSW, PhD
Professor, School of Social Work and Northern Ontario School of Medicine
Centre for Education and Research on Aging and Health
Lakehead University, Thunder Bay, Ontario.

 ”A considerable amount of thought and insight has gone into this courseware. It is superbly designed and touches on all the important areas and competencies for the target audience. Reflection and engagement are embedded in the program to make it an active and worthwhile learning experience“.
José Pereira MBChB, DA, CCFP, MSc(MEd)
Professor and Head of the Division of Palliative Care at University of Ottawa
Medical Chief of the Palliative Care programs at Bruyère Continuing Care and The Ottawa Hospital in Ottawa

“Kath has drawn from her rich experience as a palliative care nurse, educator and leader. As a passionate advocate for compassion, excellence and humanity in end-of-life care, she has taken the theory and principles of palliative care, knowledge of excellent bedside practice and a compassion for both those receiving and giving care, and merged them into this amazing resource bookI wish such a comprehensive resource had been available when I began as a palliative care counsellor. Learning about the integration of the art and science of hospice care would have answered my questions and dispelled many of the myths I brought into the work.”
Wendy Wainwright, MSW, MEd
Co-author Transitions in Dying and Bereavement, Co-editor Medical Care of the Dying

 

 Stay tuned here, and on our Facebook Page, for updates. Need more information on the resources right now? This email address is being protected from spambots. You need JavaScript enabled to view it.! We’d love to answer any questions you have.

 

 

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On September 9, 2014 I was lucky enough to be able to attend the 20th International Congress on Palliative Care in Montreal, QC. There were so many fabulous speakers and I wanted to share some of the take-a-ways from the Congress with you.

Dr Balfour Mount and Kath Murray

Dr Balfour Mount and I at the Congress

Dr. Tom Hutchinson led the one day pre conference workshop titled “Whole Person Care for Persons with Cognitive Impairment”. One of the first speakers suggested “We are all cognitively impaired. Live with it – deal with it.” When we accept the cognitive impairment is part of life then we can plan for it, prepare for it, and put strategies in place. Preparing will get us further ahead than fighting it.

Dr. Howard Chertkow presented “The Facts:  Some Key Neurologic Data about Cognitive Impairment” and spoke of the quick screening test called the Montreal Cognitive Assessment that he and his colleagues developed. This got me wondering about whether a screening test like this would be valuable for individuals to use through their senior years. This test obviously has applications in clinical settings, but might it also have a place in family settings? I believe that early detection has benefits in all settings. I wonder if I will start taking the test annually.

John and Susan McFadden addressed Persons with Cognitive Impairment and the Role of the Community. John used a quote from historian Jesse F. Ballenger’s book Self, Senility, and Alzheimer’s Disease in Modern America: A History, “senility haunts the landscape of the self-made man”, explaining that if we are so big on what we think we’ve accomplished then it’s even more devastating for us to lose our cognitive functioning. John also said, “We are created to be in relationship with each other, laughter, pleasure, joy and love, and dementia does not change that ability”. Susan spoke separately on the role of the community and stressed that “a third of deaths of people over 65 will die of, or from, or with dementia”. She also cited a recent study in which it was found that in the last 3 months before death, 40.7% of people with dementia underwent at least one burdensome medical investigation. When family understand the poor prognosis, they are less likely to agree to burdensome medical investigations, hence the importance of sharing information with family to lessen undue suffering. She spoke about dying as a social phenomenon which needs to be looked at socially, from a community perspective, and with a focus on a dementia friendly communities.

** Side note: I love the work that the Carpe Diem Village in Quebec is doing with, and for, people with dementia. Susan talked about the idea of putting together our own toolbox for caregivers who may care for US one day, including in it things that bring us joy and calm us (smell of lavender, songs we love, etc). This resonated with me as chapter 4 in the new text, Integrating a Palliative Approach: Essentials for Personal Support Workers, introduces the Basket of Comfort – an image I use for the collection of nonpharmacological items caregivers can use to help decrease a dying person’s discomfort and provide support.

 Dr. Cory Ingram was up next with Roles and Responsibilities. He said that “for those people who don’t want to be a burden, get over it”. On one hand that acknowledges that most of us will be in need of care at some point in our lives but for some, ‘getting over it’ is easier said than done. There was mention of a book called, Advance Care Planning: Communicating About Matters of Life and Death which I’m interested in reading. He showed some interesting slides on William Utermohlen, a U.K. based artist who was diagnosed with Alzheimer’s disease in 1995. As William declined into Alzheimers he did a series of portraits, over a 5 year period, documenting the decay of his mind due to the disease. His self portraits are incredible, moving, thought provoking.

William Utermohlen portrait

The themes common to family caregivers were discussed – lack of knowledge; about person, disease and caregiving; nobody understanding; families not acknowledging that the person is dying; the guilt and frustration, all of which reinforce the need for literature for families and caregivers.

It was mentioned that what might slow progression of dementia is to walk to a Greek restaurant with a friend – in other words, getting exercise, healthy diet and socialization.

A Public Health Approach to Palliative Care with Denise Marshall, Mary Lou Kelley and Allan Kelleher was excellent. The new terminology of Health Promoting Palliative Care (HPPC) and Compassionate Communities (CC) was discussed. In regards to public health, the idea is that if there is a social issue that is important, we need a public health approach (like smoking, AIDS, vaccinations, etc). The questions that came up were - how can we as a community help people address dying, caregiving, depression? How do we understand that people that are dying are not a failure of the medical system, that healthy communities and end of life care are everyone’s responsibility? How do we help normalize death education and empower volunteers and informal caregivers and how do we move from the bedside to the bigger community to teach about caregiving? Examples of what’s happening internationally were discussed by Denise Marshall – death education in the elementary and high schools, beer coasters in the pubs (“Dying for a beer….” on the back of the coaster, “10 ways to support a bereaved friend”. Canadian examples include the growing Death Café’s such as this one in Calgary, AB with Wendy Kurchak, and The Bucket List Festival which happens in Vancouver and Victoria annually.

Mary Lou Kelley talked about long term care and that 90% of palliative care is provided by PSW’s .“Death is part of our job” she stressed. “Care is palliative. People are not palliative”. She discussed preparing people and avoiding crisis. Dr. Margaret Cottle, Palliative Care physician in Vancouver, BC, working in the Home Hospice Program, and teaching at the University of BC medical school, talked about front line caregivers as the foundation of the care and that we need to get this information into the colleges. I was honoured to have  Jose Pereira and Mary Lou Kelley  both mention and recommend our new resources during the discussion, specifically addressing Margaret’s remarks.

All in all it was an amazing experience to be surrounded by so many that are as passionate about palliative care as I am.

We are talking about these issues, and others, on our Facebook Page. Please join the discussion or leave your comments here.

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Today is International Hospice Palliative Care Day.

A fascinating report published in 2010 ranked 40 countries on how they provide end-of-life care. Nations were scored in four categories including the end of life health care environment, available of end of life care, cost of the care and quality of the experience. Canada ranked 9th overall.

The report is actually a very interesting read. The report provides a global overview of palliative care including cultural, legal, economic and policy issues.

More than 100m people would benefit from hospice and palliative care annually (including family and carers who need help and assistance in caring), less than 8% of those
in need access it. (Worldwide Palliative Care Alliance)
Few nations, including rich ones with cutting-edge healthcare systems, incorporate palliative care strategies into their overall healthcare policy—despite the fact that in many of these countries, increasing longevity and ageing populations mean demand for end-of-life care is likely to rise sharply.
Globally, training for palliative care is rarely included in healthcare education curricula.
The availability of painkilling drugs—the most basic issue in the minimization of suffering—is woefully inadequate across much of the world, often because of concerns about illicit use and trafficking. The result of this state of affairs is an incalculable surfeit of suffering, not just for those about to die, but also for their loved ones.
Clearly, the deeper inclusion of palliative care into broader health policy, and the improvement of standards of end-of-life

care—raising the “quality of death”—will also yield significant gains for humanity’s quality of life.

The zest behind any report is the stories, what does this mean where the “rubber hits the road”. There are  inspiring examples of countries and communities that are doing remarkable work.

The tiny state of Kerala in India, with only 3% of India’s population, provides two-thirds of India’s palliative care services.

If you want to be informed on global issues and inspired on a personal level – have a read.

A few of the Life and Death Matters international students

A few of the Life and Death Matters online students from Nepal – Usha, Sabita and Mina

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BCCCA Conference 2014

 

Announcing a BCCCA CONFERENCE 2014 PRE-CONFERENCE workshop: The Essentials in Hospice Palliative Care- A Day for Educators! 

Date: Wednesday, November 5th, 2014
Time: 8:30am to 4:30pm
Location: Terminal City Club, 837 West Hastings Street
Instructor: Kath Murray, HPC nurse, educator and author
BCCCA Conference Flyer

* Connect with current developments and key concepts in Hospice Palliative Care, Kath’s new resources for teaching Health Care Assistants, and colleagues who share a passion for education
* Receive your personal copy of the newly released text Integrating a Palliative Approach: Essentials for Personal Support Workers and the companion workbook
* Reflect on hospice palliative care principles, and share questions and concerns
* Relax while the chef prepares healthy snacks and a hearty lunch
* Refresh your teaching with a new understanding of the importance of integrating a palliative approach as well as new activities that enhance learning.

Register NOW – space is limited

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We were thrilled to have been contacted by our friend Mike Hill, of Moonshine Movies, recently to let us know about his newest project – Little Stars. In the one-hour Little Stars film they have captured surprisingly life-affirming stories of children around the world (8 countries to date in the USA, South Africa, India, Australia, Malaysia, Italy, Jordan and Russia) living with life-limiting illnesses.

“There’s a lot of misunderstanding about what palliative care is and how it works so parents don’t know to ask for it, or if it’s offered they are scared that it means they are giving up on their child, which is NOT correct. Children are particularly at risk of inadequate pain management due to age related factors, limited access to essential medicines and misconceptions about how to effectively treat their pain. These vulnerable children and families are suffering. They are largely invisible. But for those who are receiving care, the results are extraordinary.

We have focused Little Stars on the surprisingly life-affirming stories of children around the world living with life-limiting illnesses in order to show the immense benefits of this medical specialization. Against the odds, these very special kids are making the most of every moment thanks to the support of their families, in harmony with passionate ‘pain and palliative care’ teams.”

Mike and his team are currently running an Indiegogo campaign to raise funds to complete the film in time to host a red carpet World Premiere of Little Stars at the World Cancer Congress in December this year. Acclaimed British actor DAVID SUCHET CBE has agreed to narrate the film.  This is BIG NEWS for the project as David is remarkably talented and has a legion of fans around the world.

Little Stars is supported by the International Children’s Palliative Care Network, Open Society Foundations, United States Cancer Pain Relief Committee, The Nando Peretti Foundation, Fondazione Maruzza Lefebvre D’Ovedio Onlus, Hospis Malaysia, CIMB Foundation, Pettus Foundation, Amit Iyer Memorial Foundation, The Children’s Hospital at Westmead and Children’s Hospitals and Clinics of Minnesota.  The goal is that Little Stars will do tremendous good in getting this issue on the agenda of governments around the world.  By supporting their campaign you will be joining this coalition in advocating for children’s palliative care. The Indiegogo campaign will close on September 25, 2014 (11:59pm PT) and at the time of this post they are 20% of the way to their goal of raising $65,000.

Join the Palliative Care discussion on our Facebook Page
#PalliativeCare #ChildrensPalliativeCare #LittleStarsFilm #Palliative

Little Stars film, palliative care, childrens palliative care

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The last two and a half months I have been retreating… time with siblings from Denmark, Australia and Vancouver, time on the water, time in the water, and a lot of time writing!

The new text, “Integrating a Palliative Approach: Essentials for Personal Support Workers” is just about to go to the press. We are thrilled. By the middle of October it should be up on Amazon and available to order.  Thanks to all who have participated, shared stories, contributed to the research, provided your expert opinions!

It is incredible to see the beautiful illustrations by Joanne Thomson. In this illustration, the comfort basket shows a few of the comfort measures that a personal care provider can use to help people feel more comfortable.

Basket of Comfort Measures.jpg

My basket of comfort measures

What are your favorite things to put into your comfort basket? What are you hoping will be in a comfort basket when you are dying?

Next week I head to Montreal for the International Congress on Care of the Terminally Ill. I am so looking forward to rubbing shoulders with health care professionals from around the world, and being taught by some of the greatest practitioners and researchers. If you are attending, email me and let’s try and connect.

Warm regards,

Kath

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October is the month for several provinces to honour the health care workers across Canada.

I like to quote Shakespeare who said that “a rose by any other name still smells as sweet.” and a health care worker, a personal support worker, a health care assistant, by any other name is a fabulous and important and significant member of the health care team!

In Victoria we have an annual party each year to bring together and honour Health Care Assistants (in BC knowns as: HCAs, RCAs, HSWs, CHWs etc). Chartwell Ross Place generously provides their beautiful “great room” AND light snacks (THANK YOU!). A fun afternoon, the caregivers get to connect with friends and meet new ones, receive a self care treatment, a few little gifts, and almost half of the people left with a door prize last year.Students from Camosun College and Sprott Shaw college, and the managers from local agencies help with serving YOU.

If you are interested in donating a gift, or providing a self care treatment, please call Deborah Fayerman at Oak Bay and Sidney Seniors Care. (Deborah does an incredible job of pulling together gifts!!)

This year the event is going to be held on WEDNESDAY October 15th.

  • Location: Chartwell Ross Place2638 Ross Lane, Victoria
  • Time: 1:30-3:30
  • RSVP: 250 381 8166
  • Parking: hoping to arrange free parking across the street – not yet confirmed

A strong social support network is one of the best self care strategies. Come and strengthen your social support network, have a bite to eat, sing a song with us, have a blast!

Hope to see you there! Let your buddies know. Come and party!

Kath

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Illustration by Joanne Thomson for the new text, "Integrating a Palliative Approach: An Essential Resource for Personal Support Workers" Coming in October 2014

Illustration by Joanne Thomson for the new text, “Integrating a Palliative Approach: An Essential Resource for Personal Support Workers” Coming in October 2014

It is normal that caring for the dying will touch you and change you. As Rachel Naomi Remen says,

The expectation that we can be immersed in suffering and loss daily and not be touched by it is as unrealistic as expecting to be able to walk through water without getting wet. Kitchen Table Wisdom, page 52.

Self-care is important to maintaining health for all caregivers, and is especially important for those who care for the dying. There are consequences, both positive and negative, to providing palliative care. For example, being with people during their dying process may enhance your appreciation of simple things, increase your empathy and strengthen your appreciation for people facing the challenges of dying. These benefits not only increase your capacity to provide care, but they may inspire you to face your own challenges with a new strength and determination.

On the negative side, there may be times when the work and the sorrow you witness leave you grieving, sad and feeling exhausted. You may find yourself grieving the person’s losses as though they are your own family. You may feel guilty that you are mobile while they are immobile, and living while they are dying. These may be negative effects of caring for the dying.

Francoise Mathieu, Compassion Fatigue Specialist, organized a wonderful conference, “CARE4U” in Kingston earlier this month.I was thrilled to be able to attend. A number of excellent speaker, including Dr. David Posen, who spoke on “Stress, work-life balance, and burnout – under the microscope”.  Sylvie Dagenais-Douville – AKA the “Laughter Yoga lady” spoke of course on laughter.  Francoise provided sessions where you could “learn, connect or refuel” building on the idea that it is those three things that most help you to fight compassion fatigue.

Refuel

Refuel sounds easy, but it is interesting to me, after months of writing, that it is harder than it sounds. I turned 57 this year. And was thrilled to announce “57 born in 57!” It sounds rather magical to me. SO, my goal for the year is to enjoy 57 fabulous fun refueling activities… and to put aside 57 minutes a day to refuel. Please feel free to follow up with me!

Not being the best at putting aside this time, or being the expert on self care… I invited Francoise to contribute to the chapter on self care in the next text…. written specifically for Personal Support Workers. (To be launched in October…. )

Francoise suggests that you need to choose strategies that are meaningful to you and provide you with energy. The strategies need to be scheduled into your life regularly enough to keep you fueled up. The important part of refueling is to make the effort even though sometimes you do not feel you have time or energy. In fact, it is when you do not feel you have time or energy that these strategies are most important to your well being. Prioritize and participate. Sometimes it is most helpful to call on your social support network to work together on refueling.

This list below identifies ways to refuel. It is not comprehensive, and does not provide instruction. If an idea interests you, then explore the idea using books, websites and courses to guide you.

Eat food that nourishes you

You are often very busy during the day so it is easy to fall into the pattern of grabbing a quick bite on the fly. Prepare healthy, easy-to-eat nutritious snacks in advance, take them to work and enjoy them throughout the day. Avoid turning to sugar and carbs for a quick fix. (I say this as I dream of my favorite dark chocolate ice-cream!)

Drink water

Drinking water is a bit like having a shower – it cleanses your insides similar to a shower cleansing your outside. Water increases energy, relieves fatigue, helps to cleanse your body of waste and boosts the immune system. Keep a water bottle with you at work. Develop a habit to drink water between clients and at breaks.

Move regularly

Move for at least 30 minutes a day! Have a look at this fabulous fun, quick video to understand the return on investment… the highest return is in the first 30  minutes each day! If you work in isolation you may find it helpful to meet with someone else to exercise. If you work in a group, you may have a need to exercise on your own. If you provide heavy physical care, attend a fitness class to strengthen the muscles that you are using regularly at work, or get a group together to hire a personal trainer to provide you with an exercise regime that will prevent injuries.

Sleep well

Sleep well and sleep long enough. Integrate “sleep hygiene” habits in the hour/s before you go to bed: go for a walk, have a warm bath, pray or meditate, read a soothing book, listen to calming music, shut down back lit screens at least an hour before bed. If you work night shifts, or have difficulty sleeping, research additional strategies to help you get the best sleep possible.

Be in nature

Being in nature and even seeing nature, (including trees and green space) helps to reduce stress and improve health.

The pack is on my back…. I breathe the fresh air… walk the first steps of the trail… and already life is better.

I sit by the ocean, the waves lapping at the shore… I sense … I am energized.

Stretch

Stretching can increase flexibility, range of motion, circulation and energy level. Stretching can reduce stress, muscle tension and lower back pain. Learn to stretch and then take your stretching to work!

Laugh

One of my favorite songs is from Mary Poppins. “I love to laugh, long and loud and clear, I love to laugh…… it’s getting worse every year!” What a fabulous song! I do love to laugh! The relatively new field of ‘laughter yoga’ helps people obtain the benefits of laughter through laughter exercises. What might start as fake laughter soon becomes real laughter. Years ago I read that ‘laughter is internal jogging’ and I am sure that this is one form of exercise that I can get hooked on! Sylvie led the entire group in a wonderful session of laughter yoga and I am convinced!

It was a great two day conference. I came away refreshed, inspired, and having learned a bit more about ways to take care.

Thanks Francoise!

PS It may be possible to get Francoise to come to Vancouver or Victoria to do a workshop… if you are interested, email me… This email address is being protected from spambots. You need JavaScript enabled to view it.">Kath

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In this article journalist Ben Hallman investigates concerns that American for profit hospices market their services inaccurately to person’s requiring care and their families, push to register them for the hospice program even when they do not meet the criteria, provide care that is inappropriate, and hasten death….. I could spend a day responding to this article.

A few brief points, and I welcome your thoughts:

The U.S. hospice industry has quadrupled in size since 2000. Nearly half of all Medicare patients who die now do so as a hospice patient — twice as many as in 2000, government data shows.

My thought: GREAT! Way to go! We are moving forward!

 Since 2006, the U.S. government has accused nearly every major for-profit hospice company of billing fraud.

Ugh! I hate it when an organization that represents the care that I care so deeply about either provides unethical care or is perceived as doing so.

Hospices bill by the day, and stays at for-profits are substantially longer than at nonprofits (105 days versus 69 days). …..In 2009, for-profit hospices charged Medicare 29 percent more per patient than nonprofits, according to the inspector general for the health service.

Looks suspicious.

The average hospice stay has increased dramatically since 2000, regardless of diagnosis, a HuffPost analysis of Medicare data found. This has led to a surge in expenditures: $15 billion in federal dollars in 2013.

Earlier referrals! Great news! In my world, we work to prevent late referrals and short stays! We do not want to admit people on their death bed. We want to provide care earlier in the disease process and provide support for the last months. We want to help prepare the dying person and the family, and provide the beautiful care that we are so good at providing.

The increase length of stay is more likely to reflect the fact that hospice has extended their service to people dying with non cancer diagnosis. Serving those with any chronic life limiting disease has it’s own challenges. It is very difficult to prognosticate for people with chronic illness. If we wait until time of death is certain before we refer people to hospice, we will be filling out their death certificates instead of transitioning them to hospice care. It is estimated that half of people dying with chronic illness will not know the week before they die that they will be dead by the end of the week. This is very different than dying with a steady more predictable decline.

Regarding the increase in costs… I am sure that more money was spent on hospice care, but I wonder how much less money was spent in the Intensive Care Unit.  When people receive palliative care, and/or hospice care, they spend less time or no time in the ICU and the Emergency Department.

It is a challenge to provide excellent hospice palliative care in any system. It is a challenge to build a healthy, interprofessional team that is educated, skilled and compassionate. It is a challenge to keep the person and their family at the center of care, to complete impeccable assessments addressing common issues, to share information in a way that helps the dying person and the family understand what is happening… and then to provide them the support to make informed decisions… to develop a care plan and then to provide the care.

To do this in Canada with financial restraint is incredibly difficult. To do this in the United States is beyond me.

Ben Hallman shares a number of stories. In the stories I see the possibility of fraud. I also see the challenge of helping the person and the family understand the disease process and help them prepare for death.

 

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Last week I attended the Care4You conference in Kingston. Francois Mathieu is Canada’s lead in addressing compassion fatigue.

Seated around ”my” table were men and women who respond to a variety of crises, work in correction services, a beautiful young woman who brings “camp” to kids in hospital with cancer, a woman who teaches/leads LAUGHTER YOGA (gotta love it!) and a woman who helps people heal with the use of expressive art therapies.

The opening session was titled: “Beyond Kale and Pedicures: What really works”

Francois and her lovely and capable conference planner/organizer - Lisa, organized each breakout so there were always sessions or opportunities to learn, connect or refuel – three important factors that help prevent compassion fatigue.

I enjoyed learning and experiencing. Thought a lot about the Personal Support Workers, and how difficult their job is.

I recommend the conference to others.  And wonder if we should see if we can get Francois to come to Vancouver or Victoria… anyone interested? Drop me an email.

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