This is the first of perhaps a few blogs from Thailand…

This morning my brother in law (Art) and his wife (Aree) toured us around their community. A small community five hours north of Bangkok. It was a tour of farming and the production of food and forestry resources. But, as we toured, I saw this incredible beautiful little “crematorium”.

Crematorium in the Community, bangkok thailand

As most of you know… in the Buddhist religion, the body is cremated after death. However, in Thailand, as perhaps in other parts of the world, when people lack money it is difficult to afford a cremation. To address this need, Aree’s sister, with help of Aree and others in the community, built this crematoria in a field donated by their father.

This lovely building is sitting in the middle of a small field surrounded by many other small fields, looking over a valley.

Crematorium in the Community, Bangkok Thailand

What a beautiful spot for this ritual.

Community Crematorium, Bangkok Thailand Community Crematorium, Bangkok Thailand

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In our new book, Integrating a Palliative Approach: Essentials for Personal Support Workers, I use the image of a comfort basket - to refer to the collection of nonpharmacological (non medication) items caregivers can use to help promote comfort and provide support for the dying person. As we approach Christmas it seems like the perfect time to think about gifts for the caregivers.

Comfort Basket

The motto for the comfort basket is to “Respect the individual and individualize the care”. I am reminded of research out of University of Alberta several years ago.

The researchers were looking at the needs of the caregivers, and they  found that caregivers wanted a variety of things – some wanted time with their loved one without having to be the caregiver, others wanted time alone and to not have to provide care, while others wanted time away from home and away from care giving. This research stimulates me to think of ideas for a gift basket.

IDEAS

  • Gift certificate for music, relaxation, meditation, guided imagery…. AND a person to come and download on the caregivers’ mobile device (mobile phone, iPod, iPad, etc.).
  • Gift certificate for a massage…. a long massage…. and someone to come and care for the person while the caregiver takes time off.
  • Gift certificate for meals (take out, for the freezer, or dining out).
  • Gift certificate for extra hours of caregivers from an agency or private caregivers.
  • Coupon to walk the dog daily for a period of time, or take the garbage out each week, or mow the lawn, or do two hours of errands every Thursday afternoon.
  • A group of fabulous teenagers to come and sing to them for half an hour.

Kim, our virtual assistant, put together a list of items that were more specific for a basket. She suggests:

  • Hand cream
  • Bubble bath
  • Heating bags
  • Gel booties or gloves
  • Foot roller
  • Eye pillow
  • Journal & pen
  • Books
  • Mug with something special to put into it
  • Candles, candle holder
  • Video
  • Gift certificates – restaurants, laundromats, housekeeping services, manicures, pedicures

Read more about self-care for caregivers here

So, to help others brainstorm ideas… what items would you like to receive, or what items have you given that were appreciated? Leave a comment below and join the conversation on our Facebook community.

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BCCCA Presents
“The Essentials in Hospice Palliative Care – A Day for Educators!”
Presented by HPC nurse, educator and author Kath Murray

ch5 hands

  • 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 and enjoy a selection of healthy options for lunch and snacks.
  • Refresh your teaching with a new understanding of the importance of integrating a palliative approach as well as new activities that enhance learning.

Click here to view details and REGISTER

Date: January 30, 2014
Location: Ascenda School of Management
Address: 1090 W Pender St, Vancouver, BC
Investment: $149 + GST
Time: 8:30 am to 4:30 pm (Lunch & Snacks Included)
Parking: Street parking; Underground Parking (enter at street level)

BCCCA Conference Flyer & Registration Form

TO REGISTER:
Option 1 – Print form, complete, scan and email OR fax to BCCCA
Option 2 – Complete form online, save completed registration form and email to BCCCA

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What is Pediatric Palliative Care

“While the number of children requiring palliative care is small relative to adults, the impact of a child’s serious illness and death is extensive. It affects the family as well as the entire community. Moreover, the illnesses that affect children are quite distinct. Palliative care for children must comprehensively address the body, mind and spirit, and requires an inter-disciplinary approach; it is also inclusive of parents and siblings.”

[For more information, see PedPalASCNET, A Network for Accessible, Sustainable, and Collaborative Research in Pediatric Palliative Care].

In their Pediatric Hospice Palliative Care | Guiding Principles and Norms of Practice, the Canadian Hospice Palliative Care Association defines pediatric hospice palliative care as

“…an active, holistic approach to care which focuses on relieving the physical, social, psychological and spiritual suffering experienced by children and families  who face a progressive, life-threatening condition, and helping them fulfill their physical, psychological, social and spiritual goals. Its philosophy is to provide optimal comfort and quality of life, and sustain hope and family connection despite the likelihood of death. Pediatric hospice palliative care aims to provide comprehensive care for children and their families through the living, dying and grieving processes. It affirms life and regards dying as a process that is a profoundly personal experience for the child and family. Pediatric hospice palliative care is based on the same principles as adult hospice palliative care but also recognizes the unique needs of families faced with a child’s illness and death.”

The Role of the Pediatric Palliative Care Team

When a child or adolescent receives palliative care, the family is the unit of care. Delivering age-appropriate care is vital. When a child or adolescent has a life-threatening illness, the tendency may be to treat him or her as developmentally younger than their chronological age. This could cause the child to suffer emotionally and/or socially. Including the child in developmentally appropriate discussions about the illness, and including the family unit, creates an open dialogue and trust between the palliative care team, the family and the child. Open communication is important, especially as the disease advances.  Providing information allows the family, and the child, to make informed decisions. Health Care providers benefit from training in discussions of death.

One of the concepts identified by families as an outstanding practice in palliative and end-of-life care is getting to know each child personally – their likes and dislikes, and what makes them an individual. This way, interventions can be tailored to their needs. Individualized care acknowledges both the child and the family unit’s beliefs and cultural practices, and respecting diversity.

The pediatric palliative care team provides comfort and support to reduce or alleviate suffering. Physical and psychosocial symptom management is required.  The Canadian Psychological Association’s “Psychology Works” Fact Sheet: Pediatric Palliative Care speaks to “Interdisciplinary palliative care, including effective communication, psychological support, spiritual care, comprehensive pain and symptom control, and grief and bereavement support are appropriate from the time of diagnosis. Palliative care goals and life-prolonging goals can be pursued simultaneously. “

The pediatric palliative care team generally consists of many team members – physicians, nurses, personal support workers, clinical psychologists, social workers, dieticians, physical therapists, pharmacologists, spiritual leaders and respite caregivers. Interdisciplinary care across settings can be extremely beneficial to the child and the family unit.

Shared decision making (again, developmentally appropriate) allows the child and the family to actively participate in their treatment and decisions in regards to their care.

Worth a watch: Little Stars is tells the surprisingly life-affirming stories of young people around the world living with life-limiting illnesses.  Against the odds, these children and young adults are making the most of every moment thanks to the support of their loved ones, working in harmony with passionate ‘pain and palliative care’ teams.

Education and Resources

Children and Youth

 

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Ted and I have been travelling for the past week and have packed a lot into a short period of time!

We attended the PSNO PSW Conference 2014 in Markham, ON on October 21st. It was wonderful to meet 300+ personal support workers! One PSW, Derek, spoke about his work in hospice palliative care and highlighted some of the challenges. What stood out me was his emphasis on the value of team.

A big thank you to the PSW’s who stayed for the closing plenary. I know you were tired after attending for the entire day. I appreciate being able to tribute you and reflect on my learnings in HPC.

Next was the OCSA Annual Conference on October 22nd and 23rd.  Harry van Bommel, M.Ad.Ed., CTDP, spoke on Putting the ‘Care’ Back into Healthcare. Mr. van Bommel has developed resources to help people navigate and negotiate the system and these resources can be used and adapted to people’s local areas. He is as warm and as kind as when I met him in 1992 after the CHPCA conference in Winnipeg (my first HPC conference). I had the pleasure of meeting with Kathy Duncan from PalCare Network.  They have regular courses they offer in Newmarket, ON and an extensive library of palliative care books, manuals and journals available for loan. They also have a special conference coming up in March 2015 for PSW’s and community members that sounds fabulous, so if you’re in that area you may want to contact them to find out more information.

In the morning I met a beautiful woman named Jenny from Thunder Bay. She spoke about her work with such joy. Then she talked of the challenges and violence that has been happening in her community.  Within an hour she came to our table and told us about the shootings f the soldier in Ottawa.

As the day progressed and the story unfolded, my heart went out to those who mourn the death of Nathan. And along with other Canadians I share the collective sorrow that comes with witnessing violence born in mental illness.

Next up is Niagara Falls, Ottawa and then the OLTCA Fall Symposium in Markham which we’re really looking forward to.

 

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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 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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