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

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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This week I was thrilled to find this article. Thought you might be interested in the findings.

Article: The role of healthcare support workers in providing palliative and end-of-life care in the community: a systematic literature review. By Herber, Oliver R.; Johnston, Bridget M., published in Health & Social Care in the Community (HEALTH SOC CARE COMMUNITY), 2013 May; 21 (3): 225-35. (40 ref)

Literature review to look at the tasks/roles of Health Care Workers, (AKA PSWs, HSW, CCAs etc.) in providing hospice palliative care in the home setting.

Findings show that the workers provide emotional and social support, assist with personal care, care for the dying, respite care and some housekeeping services. Challenges include: emotional attachment, role ambiguity and inadequate training.

“Support factors such as informal peer grief-support groups, sense of cohesiveness among HCSWs and task orientation enabled HCSWs to overcome these challenges. To conclude, induction and training programs, a defined period of preceptorship, appropriate support, supervision and clearly defined role boundaries may be helpful in reducing the challenges identified in HCSWs’ roles.”

The very things that help with reducing the challenges for the health care workers are similar to those things that reduce stress and compassion fatigue.

I just attended the compassion fatigue conference with Francois Mathieu in Kingston. The leading factors to prevent compassion fatigue were not self care items that we typically talk about…but include:  education to do our job, role clarity, strong social network, and work flexibility.

 The article, supporting what Francois and speakers presented, provides clear guidance for the agencies providing home support services…. Help the PSWs develop strong social support. Strive to develop flexibility in work schedules. Provide education and mentorship so that people feel confident in doing their work. Get clear and provide clarity on the role of the PSW. 

What application does this have for those providing care in the long term care facilities?

What do you do in your agency to support the PSWs with education, opportunity to network, etc..?

I look forward to your ideas.

Kath

PS For those who don’t know, Canadian Nurse has an online library and members of CNA can access this article free of charge. :)

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In Sweden the Nurses Assistants provide much of the direct care, similar to Personal Support Workers (HCAs, CCAs etc.) in Canada. In this study they were interviewed and shared what they observed in the last days and hours before a person’s death. They identified clear physical changes as well as more subtle changes.
Recommendations include:

  • “Reports of signs observed by Assistant Nurses must be taken seriously,to increase the possibility of offering the best possible palliative care at nursing homes.
  • Assistant nurses must be seen as a significant part of the care team in order to take advantage of their practical knowledge.
  • Assistant nurses need to be offered continuous education and support regarding palliative care in order to develop their skills and practical knowledge.”

These recommendations are very appropriate for Canada as well. This past week I attended the Canadian Association of Continuing Care Educators (CACCE) conference in Vancouver. Discussions included the need to advocate for Health Care Workers to be recognized as significant contributors to the health care team, the need for Health Care Workers to open their mouth and provide input, and finally, discussion of ways to decrease the hierarchy in the health care team.

Discussion of Interprofessional Education may help to level the team, as people learn more about the role of the Health Care Workers.

Articles such as “Unsung Heroes” published by major newspapers in Ottawa, Vancouver, and others… will help people to see and talk about their contribution.

Celebrating and expressing gratitude are two simple ways that we can advocate and pay tribute to these workers.

Of course, the most important thing that the health care team can do is encourage Health Care Workers to observe, gather information and to share the information they received.

Finally, the last recommendation includes offering continuing education. And that of course is my  love and I hope that “Essentials in Hospice Palliative Care” a resource for Personal Support Workers” will be a great resource for students in the core curriculum, and for students working in clinical practice who want to learn! Keep on growing!

Kath

Reference: Assistant nurses’ descriptions of signs of dying among older people in nursing homes. Sahlberg-Blom, Eva; Hårsmar, Anna-Lena; Österlind, Jane; Nordic Journal of Nursing Research & Clinical Studies / Vård i Norden, 2013; 33 (3): 20-4. (journal article – research, tables/charts) ISSN: 0107-4083

 

 

 

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The past few weeks Ted and I have been in Ontario. First at the Hospice Palliative Care Ontario Conference (HPCO), and now at the National Association of Career Colleges (NACC).  In between we met with a class of PSW students with the Catholic Continuing Education School Board program (CESBA) , and leaders from Ontario Community Support Association, (OCSA) and CESBA, and a marvelous educator from Centennial College. OH, and we had the very exquisite privilege of awarding Jackie McDonald with the very first Frances Montgomery PSW Hospice Palliative Care Award.

Wow.

I love to work with people with passion…I love to meet people with passion… passion for palliative care, passion for educating, passion for caregiving, passion for learning… and passion for excellence.  I am reminded that passion for excellence, passion to help the individual and to change lives, is not defined by titles or territories or trends. It does not matter the name of your college or the type of school.  It does not matter whether you are a private or a public institution. It does not matter if your classroom is on a big campus or a small city block… miracles can happen in all sizes, shapes and forms.

The NACC student of the year award went to a woman who graduated from the Willis College – SOAR Challenge program (to help women move forward from really really difficult life situations), then went on to another business course and is now working in a job that she loves… the Educator of the Year was awarded to a woman police officer who after finishing that part of her career, went to work with triOS college and has “found her calling teaching” and drives several hours a day to teach students in their ?policing? program. Wow.

Today we head home. And I give thanks for the people we have met who have inspired us to continue to do our best to create wonderful effective resources that will help front line caregivers integrate a palliative approach in their care, and provide excellent care for the dying and their families.

And as much as I have passion for work and learning… I love to have fun… Sooooo, I could not resist playing “Boy Scout” and I collected pins and badges, or in this case, SWAG from the conference exhibitors.  I include the photo here of the apron I collected from Jane at Meridian Uniforms, and I earned myself the title of “SWAG QUEEN”.  (Life is too short and too precious to not enjoy it!)

The SWAG QWEEN at the NACC Conference

The SWAG QWEEN at the NACC Conference

 

 

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With our aging demographics, it is vital that we prepare a health care system to provide the care that will be needed. Ontario politicians suggest that Ontario is the best place to live and the best place to grow old. Dr Samir Sinha presented the Ontario Seniors Strategy at the Hospice Palliative Care Ontario conference last week. Read the report:  Living Longer – Living Well”, or see key points and highlights.

A few interesting facts and programs Dr Sinha discussed in his presentation:

  • 70-90% of people want to die at home.
  • 23% of Ontario seniors are “socially frail”, meaning that they do not have someone they can rely on and call for help.(This is HUGE!)
  • In Canada, it costs a $1,000 per day to have someone in hospital, $130 to have someone in Long Term Care, $55 to have someone in their home. (Interesting that Denmark is leads in providing the best IN HOME care!)
  • We need more PSWs so people can stay at home. (Last week Ontario Minister of Health announced an increase in pay for PSWs working in the home settings.)
  • Interesting program, Red Cross developed a program to “Grow your own” PSWs, and educated 40 new PSWs in two northern communities.(Way to go!)
  • Palliative and Therapeutic Harmonization (PATH) “is a process that helps older people and their families understand their health status and guides them through the process of making health care decisions that protect their best interests and quality of life.” This process illustrates how adequate information sharing helps people better understand their situation,and supporting informed decisions can help people make decisions that better meet their goals. In one study,93% changed their minds and did not have further acute intervention.(How much suffering could be prevented!)
  • Although seniors account for the highest users in health care, it is the 10% of most complex older adults who use acute care the most. (Many seniors do NOT use acute care.)

Dr Sinha asks, “Is it the cost of caring or the cost of not having a good integrated system that accounts for the high cost of providing this care?”

Dr Sinha provides 13 recommendations including

  1. Promote health and wellness
  2. Strengthen primary care
  3. enhance home and community care
  4. improve acute care
  5. enhance long term care environment
  6. care for the caregivers
  7. address ageism and elder abuse
  8. address unique needs of aboriginal elders
  9. support the development of elder friendly communities…

Although palliative care is addressed within these recommendations, I would have liked to have seen a recommendation that targets the need for integrating a palliative approach early in disease process, for people with any life limiting illness, across all settings.

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