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What are your plans for Advance Care Planning/Healthcare Decisions Day?

National Advance Care Planning Day/National Healthcare Decisions Day are on April 16

We’re curious about what types of plans have been made for April 16th – National Advance Care Planning Day / National Healthcare Decisions Day. Leave us a comment to tell us what is (or isn’t) happening in your area.

You’re not alone if plans have not yet been made. And it’s not too late to get involved. Anyone can participate in small and big ways – there’s something for everyone. You can begin by helping spread the word!

Resources in Canada

Resources in the United States

In the US, there are resources available for National Healthcare Decisions Day on April 16. In fact, this will be a week-long campaign, from April 16 to April 22, to help people understand the value of advance healthcare planning.

Tell us what your plans are – or tell us about the barriers to Advance Care Planning/National Healthcare Decisions Day.

Check back and see what others are doing as well.

The emerging role of the End-of-Life Guide and Death Doula

Guest post by Deanna Cochran

All over the world, people are coming forward who want to accompany and guide others through the end of life. Some of these people are in traditional roles of nurse, physician, chaplain, etc. working through hospices and hospitals. However, there is a phenomenon happening now; people with the calling to serve others at the end of life who are creating innovative services that bridge present health and death care. We are known as an End-of-life Guide or death doula. We are developing private practices that bring forth our unique gifts. I am honored to work with these pioneers today and for the past several years.

These are some of the questions I am asked.

Question: You are an End of Life (EOL) Guide and Mentor. What does this mean?

Answer: I serve families as they accompany a loved one through dying. As an end-of-life guide, I provide a loving presence and companion the dying person through to death. Most often I am the primary caregiver as well. Because of my end-of-life experience and nursing background, I assist with a variety of medical and practical needs. I provide emotional and spiritual support, offer assistance with rituals or ceremonies that honor the transition and facilitate family meetings. I may make meals or refreshments. I serve in whatever capacity is needed.

As well, I mentor other end-of-life guides and doulas in their private practice development, ensuring they have all the components that will ensure they are fantastic guides and doulas.

Question: How do you define a death doula and their role?

Answer: In one of my workshops, we defined the role of a death doula as the person who provides a loving, compassionate presence at the end of life. This is difficult to fully describe as not all doulas do the same things. They offer support in the area where they have expertise. But we do have one thing in common: we are people who provide loving compassionate presence at the end of life, regardless if we do practical services, medical services, spiritual services, or anything else.

Question: Are there any regulations governing death doulas in the United States?

Answer: No, we are self-regulating. There is no Board or governing body offering credentialing or certification at this time for death doulas in the USA. Each end-of-life certificate program is an in-house certificate program of the issuing organization.

Question: What kind of insurance does a death doula require in the United States?

Answer: None, as far as I know. It is wise though to have a professional liability policy, be bonded, have a business structure that will protect your assets (like a LLC for example) and have a general good faith agreement in writing with your families.

Question: Can you tell us about people who have developed a private practice as a death doula and how their business works?

Answer: Most death doulas have a private practice and offer their services on a sliding scale basis and are private pay. Insurance does not cover death doula services at this time. Some are forming nonprofits so they can raise money to fund their services. Most charge an hourly or per session fee. Their services range from helping with advance directives, to patient advocacy, to vigil services.

Question: What do you anticipate will be the need for and the role of the death doula in the future?

Answer: The baby boomers have always wanted innovative services during their lifetime and it will be no different as they continue to age. Death doulas are able to provide the extra support some people will want and need: support that mainstream health and death care may not be able to provide due to time and financial constraints.

Question: Do most death doulas have a professional background (i.e. as a nurse)? And what do you recommend for those considering becoming death doulas?

Answer: No, most are not medical. You do not need a medical background to be an amazing death doula. You need to be grounded emotionally, not afraid of death and dying and be able to deeply listen and hold space for tremendous suffering. None of that is even taught to medical professionals. For someone who is called to serve the dying, I recommend you volunteer at your local hospice and really see how it feels to do this work. You need experience with how you react in situations and with death. That’s a great beginning. I have a free series called 30 Day Death Doula Training: Primer, designed to assist people figure out what exactly they may want to do with this passion. This is a free training by Quality of Life Care: http://accompanyingthedying.com/30-day-primer-sign-up

About DeannaDeanna Cochran, end-of-life guide and death doula

Deanna Cochran, RN, is an End-of-Life Guide to families and Mentor to other Guides and Doulas. She is founder of Quality of Life Care, devoted to bringing awareness that palliative care should be initiated from day 1 of diagnosis and supportive of nourishing and mentoring those called to serve the dying and their families. Her book Accompanying the Dying: Practical, Heart-Centered Wisdom for End of Life Guides, Doulas and Families will be published soon.

 

 

 

 

Residential Immersion

Spiritual Care Programme and Quality of Life Care join together to support those who want to serve at the end of life as guides, doulas, coaches, or the go-to person in their circle. This program provides a beautiful foundation for the support of our work. We must learn ways of nourishing our being and spiritually supporting those we care for in this work.

Central to the “being” of the end-of-life practitioner is presence. And what better principles to guide us in this than the ancient wisdom and practices described in the writings of “The Tibetan Book of Living and Dying” by Sogyal Rinpoche. The Spiritual Care program has taken this wisdom and prepared a program that people of all faith traditions can use and incorporate in to their practice.

Hospice and Palliative Care Conference Calendar

Kath Murray - hospice palliative care speaker

Are you attending any of these upcoming hospice, palliative, end of life care conferences?

This is our schedule.

Let’s meet up and talk!

 

ABHES Conference in Palm Desert

February 22-24, 2017
Renaissance Indian Wells Resort & Spa
44400 Indian Wells Lane, Indian Wells (Palm Springs), California USA
Visit us at the exhibit booth.

Take home a bag of “Care Planning Cookies” to your school

AAHPM and HPNA Conference

February 23-25, 2017
Phoenix Convention Center, Phoenix, AZ
We are attending February 24-25 and are so looking forward to meeting our American hospice and palliative care colleagues. We won’t have a booth as we are just able to attend the last few days. Contact me to meet for a cuppa!

California Organization of Associate Degree Nursing Program Directors

March 1,2,3, 2017
Embassy Suites in Downtown San Diego
Visit us at the exhibit booth!

Hospice Palliative Care Ontario Conference

April 23-25, 2017
Sheraton Parkway Toronto North, Hotel & Convention Centre, Richmond Hill, Ontario
Visit us at the exhibit booth.
Workshop Presentation: Games, cookies and creativity: Addressing the needs of children when caring for adults.
I’m presenting this workshop with a few of the fabulous team from Roger Neilson House, Megan, Kat and Lynn!

Saskatchewan Association of Licensed Practical Nurses

April 25-26, 2017
Delta Regina, Regina, Saskatchewan
Visit us at the exhibit booth
Workshop Presentations:  Palliative Care: Is Every Nurse’s Business, by Katherine Murray

People go to acute care, oncology care and emergency to be cured, fixed and sent home. They go to long term care to receive assistance, person centered and restorative care. Eventually, the statistics confirm that 100% of people die. Where do people die and who cares?
The focus of these two sessions will be to discuss the realities of life and death, look at palliative care as part of the work that every nurse does, identify common patterns of dying, share strategies that will help you integrate a palliative approach in any care setting and increase your comfort and confidence in addressing the needs of the dying person and their families.

College of Licensed Practical Nurses of Alberta

April 26-28, 2017
Grey Eagle Resort and Casino, Calgary, Alberta
Visit us at the exhibit booth
Pre-Conference Workshop: Palliative Care: Every Nurses Business, by Katherine Murray

Summary: Hospice palliative care was developed to best address the needs of the dying person and their family. In Canada, less than 30% of dying persons receive services from a specialized hospice palliative care service. Although most people want to die at home, in reality, most will die with long term life-limiting illnesses, in acute and long term care settings. The purpose of this session is to explore palliative care as “every nurse’s business,” identify best practice interactions, and discuss practical tools and strategies to increase physical comfort and address psycho-social issues. The role of the LPN in responding to requests for Medical Assistance in Dying will also be addressed.
This one-day session is open to all care providers; however, the focus will be on the role of the Practical Nurse and the PN educator.
Link to Registration  Seating limited to 60 participants. Early registration is advised to avoid disappointment

Canadian Association of Continuing Care Educators (CACCE)

May 10-12, 2017
Hotel Fort Garry, Winnipeg, Saskatchewan

CECU Conference

June 6-8, 2017
Las Vegas

Career Colleges of Ontario (CCO)

June 14-16, 2017
Niagara on the Lake

If you would like to connect with me when I am in your area, if you are interested in a visit to your workplace or campus, or if you want to meet up for a cuppa something… please drop me an email

How to easily integrate hospice palliative care content into core curriculum

A few weeks ago, I wrote about competencies for nurses, health care workers and health care professionals. Exploring the competencies helps me identify and select appropriate content for teaching. The competencies helped guide me as I wrote the nurses text and the PSW text. Can the competencies also help educators to integrate hospice palliative care content into core curriculum? In short, yes they can. They can by helping address these questions,

“ What are the goals of this education? What do I need to teach? When in the program can I teach it?”

As educators, you may be looking at how to integrate hospice palliative care content into the curriculum that you teach. This can feel like a daunting task. However, this task has just become easier. This past month, the American Association of Colleges of Nursing (AACN) published a fabulous document titled, “CARES: Competencies And Recommendations for Educating Undergraduate Nursing Students Preparing Nurses to Care for the Seriously Ill and their Families.” In this document, they have laid out 15 competencies for nurses providing hospice and palliative care. The document also identifies where the hospice palliative care content aligns well with the pre-existing course content! By aligning the hospice and palliative care content with current content, (rather than specific course names), the AACN avoids the problem of trying to align HPC content to specific courses taught at different colleges.

 “Nursing schools use a variety of approaches to organize curriculum. There are common content areas, even though the particular courses may have different titles at different schools.”

This document might help you to integrate hospice palliative care content into your core curriculum by identifying common content areas in your current courses. To give you a preview,  an excerpt from the table in Appendix 1 of the AACN CARES document is provided below, showing two common content areas in nursing education where hospice and palliative care topics can be integrated seamlessly into the core curriculum. Click on the table to view the entire CARES document, including the table in Appendix 1.

Common Content Areas in Nursing Education where Hospice and Palliative Care Can be Integrated

When? When to begin teaching hospice and palliative care?

Articles on nursing education suggest that it is important to introduce the topic of death, and to discuss death before the student has their first practicum. In this way they will be prepared if they face death for the first time in their practicum. Monserrat et al[1] state,

“Specific training in end of life care should be offered at the start of nurse education through a combination of experiential and participatory methods. Adequate training of this kind would help to ensure that future nurses offer high-quality care to patients and the families, minimizing the impact of death and preventing emotional fatigue.”

As an end note, they suggest,

“Further research is needed to assess the effectiveness of training programmes.”

And so for now, we know that exploring the topics of death and dying before the student’s first practicum is a good way to begin.

I hope that the CARES document helps you to integrate hospice and palliative end of life content into core curriculum. No matter what country you live in, the ideas can be adapted to your curriculum. If you have questions about the how’s, and whens, and where, I would be happy to discuss these with you.

And although I focused today on integrating hospice palliative end of life care (HPEOLC) content in core curriculum for nursing students, the same process and ideas can be used when planning for continuing or workplace education, and the same process can be used when integrating HPEOLC content in core curriculum for Personal Support Workers, Health Care Assistants, Nursing Assistants.

 

Next time

I’ll share strategies for helping students understand content, and develop the knowledge, attitudes and skills for providing hospice and palliative care.

 

[1] Montserrat Edo-Gual, Joaquín Tomás-Sábado, Dolores Bardallo-Porras and Cristina Monforte-Royo. (2014). The impact of death and dying on nursing students: an explanatory model. Journal of Clinical Nursing.
doi: 10.1111/jocn.12602

Once upon a time, there were competencies

Once upon a time, competencies were developed for health care providers in palliative and end of life care. There were competencies written for nurses, health care workers (nursing assistants, personal support workers, hospice aides), physicians and social workers, and others. There were competencies developed in many lands, in Ireland and the United States, in Nova Scotia and Alberta, in Ottawa and Vancouver, to name just a few. After creation, competencies struggled to be heard and adopted and too often were not used to inform curriculum or education development.

According to the Palliative Care and End of Life Working Group (2009) in their article, Competency-Based Education Approaches in Palliative and End-of-Life Care in Cancer, sponsored by the Canadian Partnership against Cancer, (pp. 15) they suggest that competencies may not have been adopted because they were misunderstood as being the same as “goals” or “learning outcomes.” In other places, it is possible that they were not adopted because there was confusion about how to define the competencies1.

And it is possible that certain educators, (myself included), just did not know where the competencies were, and that they could be incredibly helpful, inspiring and an essential resource for planning and developing education and educational materials.

For me, it was exciting when hospice palliative end-of-life care (HPEOLC) competencies came to life in my heart and in my hands. Here is my story:

I was writing a book – a textbook (Essentials in Hospice and Palliative Care: A Practical Resource for Every Nurse). I wanted the text to be useful for nurses in Canada and the United States. I wanted the text to help prepare students to meet the national competencies set for registered and practical nurses.

At first, I took the competencies and put them in a table format. I compared the competencies. I looked for differences and I looked for similarities. I went cross-eyed and just about went nuts.

Then I took one set of competencies, spread them across a football field (also called a mind-map). Then I took competencies developed by other groups and placed them individually, alongside other like-minded competencies. Eventually all the competencies were grouped together.

I returned to the outline for my textbook and asked myself whether to, and how to address the competencies in the text. Then I researched and I wrote. A few months ago, the textbook, Essentials in Hospice and Palliative Care: A Practical Resource for Every Nurse was published. Competency based, competency driven, competency inspired.

Now, we (myself and my great team) asked, “What types of companion teaching and learning resources can we develop that will help nurse educators to teach the different members of the nursing family to meet their respective competencies?” and “What can we do to help educators integrate hospice and palliative care in core curriculum?”

On a personal level, as a new year begins, I returned to the competencies to help me reflect on my practice and determine what I need to learn, and what I need to do to improve my practice. The competencies guided me in my writing, and now inspire me in my personal professional reflection.

Following is a list of the competencies that I refer to when planning education, and is the list of competencies that I refer people to when they are looking for HPEOLC competencies.

My Favorite Competency Documents

There are differences in the competencies written by different professions in different countries and for different purposes. Each group has a unique way of articulating, formatting, prioritizing and organizing. I think that most of the competencies represent similar knowledge, skills, and attitudes. Regardless of whether you align with competencies for this group or that group, this country or that country, all the competencies guide health care providers toward similar outcomes. While you may be required to use a set of competencies designed in the area where you work, it is also possible that you may still be inspired by the competencies developed outside of your area. There are provinces and states that have not identified competencies related to hospice palliative end-of-life care for members of the health care team or have very limited competencies. If you are in such an area, you may find one of these documents helpful.

A guided tour of the competency documents that I refer to in my practice

These competency documents help me when planning education, reviewing, and reflecting on education, and reflecting on my own practice. The competencies may be of help to you as you identify what you want to address in education that you are planning. I hope this list of resources is helpful to you in your work.

Nursing Competencies in Canada

CASN identified competencies and indicators for educating Registered Nurses in their document, Palliative and End-of-Life Care: Entry to Practice Competencies and Indicators for Registered Nurses. Their goal is for Canadian colleges and universities to use the “ … competencies may provide direction to curricula development; indicators may be used by nurse educators and students as a guide for assessing the development and integration of a competency.” 2

In Alberta, Canada, the College of License Practical Nurses of Alberta wrote that a “profession has strength when their contribution is clearly articulated. For the Licensed Practical Nurse profession in Alberta, this articulation is seen in competencies and education that outline the knowledge, skill, behaviors, judgments and attitudes that are expected of the profession.” They updated and launched their hospice palliative and end of life competencies in 2015. These competencies are clear and concise and may be very helpful as you prepare and evaluate education for practical and vocational nurses.

Personal Support Workers in Canada

The Canadian Association of Continuing Care Educators launched the Canadian Educational Standards for Personal Care Providers in 2012. The Ontario Ministry of Training, Colleges and Universities published the Personal Support Worker Program Standards in 2014, which includes learning outcomes related to palliative and end-of-life care, and accompanying performance objectives.

In a Canadian research study, a group of Personal Support Workers serving as palliative care champions in their facilities developed the Quality Palliative Care in Long Term Care Alliance Personal Support Workers Competencies. These more advanced competencies may be most useful in developing continuing education for experienced PSWs.

Jackie McDonald who helped create the PSW competencies

On the right is the fabulous Personal Support Worker, Jackie McDonald, who helped to write the PSW competencies associated with the Quality Palliative Care in Long Term Care.

Nursing Competencies in the United States

The American Association of Colleges of Nursing approved the end-of-life care competencies developed by ELNEC, that are available in the 2017 document, Peaceful Death: Recommended Competencies and Curricular Guidelines for End-of-Life Nursing Care. ELNEC identified entry level competencies for Registered Nurses. In this same article, they identify content areas where the competencies can be taught in a nursing program.

Nurses and Nursing Assistant in the United States

The Hospice Palliative Nurses Association provide advanced certification for Nursing Assistants, Practical/Vocational Nurses and Registered Nurses and Registered Nurses working with children. Competency documents and study guides are available for each of these groups.

Interprofessional Competencies in Ireland

The Irish interprofessional team identified competencies that the entire health care team share as well as identifying those that are profession specific in Palliative Care Competence Framework. Currently there is a team in Canada that is finalizing their interprofessional competencies. I will add them to this list when they are approved.

Now, my question for you: What competency resources do you use to guide your work?

References

  1. The literature has found that educators have been attempting to accurately define the notion of competence for several decades and have not yet reached agreement. Many authors argue that this confusion in what actually constitutes competence is what has slowed down the progression to competency-based education. … what makes matters even more confusing is that it is difficult to separate a competency from what have been called goals and objectives, and in fact many competencies that have been developed tend to be a combination of what others may call goals and objectives.” Palliative Care and End of Life Working Group (2009). Competency-Based Education Approaches in Palliative and End-of-Life Care in Cancer, Canadian Partnership Against Cancer, pp 15.
  2. Canadian Association of Schools of Nursing (2011). Palliative and End-of-Life Care Entry-to-Practice Competencies and Indicators for Registered Nurses.
    http://casn.ca/wp-content/uploads/2014/12/PEOLCCompetenciesandIndicatorsEn.pdf

Reflections on Palliative Care in the Intensive Care Unit (ICU) by Siobhan Bell

Palliative Care and ICU

Siobhan Bell with Family 2016

Siobhan Bell, RN, BScN, MN

When people think about an intensive care unit (ICU), they usually picture the beeping and humming sounds of machines.  They picture nurses, doctors and other health care providers doing a dance that is going to fix or save their loved one.  While in many cases this is true, there is the other side to the ICU.  The side where the dance is the dance of comfort.  The dance that always ends in death.  The goal of this dance is to bring the end for the patient and their loved ones, in a way that we are providing comfort and the opportunities for goodbye’s.

In the ICU, we have hundreds of machines, medications and protocol’s meant to save someone’s life. In the last decade we have been exploring how to utilize all of these machines and medications, in a way that can help bring comfort in death instead of support living at all cost.  What can we do, or in some cases not do, that will help a patient to die in comfort is the question that we ask patients, their families and ourselves.

There is a misconception among patients and families that patients do not feel pain when they are in the ICU.  When in fact, every intervention, test and movement causes pain.  While we have access to many medications to alleviate pain, those same medications also can create challenges with breathing and assessing their neurological status.  They have side effects on their liver, kidneys and overall have side effects that can challenge our ability to keep them alive.  We use these pain medications to the maximum of their ability to control pain, while trying to keep the balance between pain relief and detrimental side effects.

All of this work comes at an emotional cost for Intensive care nurses.  Providing comfort and understanding to the family and to the patient requires selflessness.  Doing this over and over again can lead to being emotionally exhausted.  It is important when we are looking at plans and protocols to assist in the dying process and support of the patient and their families, that we also look at the support systems in place for the care givers such as nurses.  Support that is automatically activated and does not wait for the nurse to ask for help.  A check-in, shoulder to cry on and a chance to grieve as well.  The support should be followed by the ability to have this nurse assigned to a non-palliative or non-end of life patient for the next few shifts.  Allowing the nurse to re-ground herself emotionally.

“My experience in ICU and caring for people dying in ICU has led me to be a staunch advocate for palliation and the creation of palliative care protocols that support patients, their families and the healthcare team providing the care.”

My experience in ICU and caring for people dying in ICU has led me to be a staunch advocate for palliation and the creation of palliative care protocols that support patients, their families and the healthcare team providing the care.  I think that we have come a long way in our ability to support the dying process in the Intensive care units.  However, I think that there is still much work to be done.  There is an incredible need for more nurses trained and educated in palliation to work within critical care areas. There is also a need for them to work with the health care providers and families in the critical care areas to develop deeper understandings of the support required and education that is needed to make informed decisions.  Nurses are uniquely able to describe the step by step process of what the dying within a hospital setting, or specifically within an ICU will look, smell and potentially feel like.  This can bring great comfort to families and patients when they are able to anticipate the process with all their senses.

It is my hope and goal within my nursing career to continue to advocate for the continued education and support of nurses in all areas.  To continue to advocate for nurses to become more in touch with the needs of families and patients with regards to palliative end of life care and specifically with the discussions that are necessary for planning care at the end of life.

As an ICU nurse it has been my privilege to care for people who fight for their life as well as care for people who are dying.  The dying process and the care needed is just as intricate as trying to keep someone alive.  One patient in particular stands out for me, I will call her Alice.  Caring for Alice gave me the extraordinary opportunity to experience how important explaining the palliative process with all my senses was to patients and families.

Alice might have been 22 in chronological age, but she was 4-5 years old in developmental capacity.  This meant many things.  It meant that she showed love, fear and pain in the ways that a child would.  Her parents had fought for many years to give her the best and most normal life they could.  It was evident that they had succeeded.  Alice was a bright, loving and engaged young woman that everyone adored.  Her siblings loved and admired her for the courage and compassion that she showed to everyone, every day.  Alice demonstrated her ability to love without reserve.

I had the privilege to care for Alice a number of times when she was admitted to our ICU.  On her last admission, it was evident that the Alice we knew was tired and very ill.  Shortly after admission, she slipped into a coma.  Alice was put on a ventilator and we were assisting her organs to keep her alive with multiple medications and machines.

Alice’s family seemed on edge.  Unusually solemn and almost angry.  On one night in particular, Alice’s mother was assisting me with turning her daughter.  She broke down in tears mid turn.  We finished the turn before I went to hold her mother while she sobbed.  When she could talk, I listened.  What I heard was that they did not want to see Alice suffer anymore.  It was evident to them that she was in pain and that it was extremely unlikely that she would recover from this illness.  She just didn’t know how she would “push the button” and see her die.  This is when I realized that they did not know.  They didn’t understand….and this was my fault.  I had not prepared them.  I had not told them what it could be.  At that moment I realized that my job was not just to care, but to explain and describe what everything could look like and feel like if we chose a different path.  When her husband returned, I left to document and think about what I could say.  When I returned to check on them the parents looked solemn but determined.  Alice’s Dad looked me in the eye and said “Enough, she has had enough”.  I nodded.  I was too choked up with tears to speak.  I was in awe of the strength and courage that those words would take to express.  I left and arranged for the intensivist and ethicist to speak with the family.  Thankfully that meeting was quickly arranged.

After the meeting, Alice’s parents still seemed concerned.  I had thought the physician and the ethicist had explained the options well.  When I went in to speak to the parents about timing, they seemed confused.  I asked if everything was ok.  Alice’s father said, “We don’t understand, aren’t you going to push a button to turn everything off, or unplug something”.  I realized that they really didn’t understand the process still.  I sat down and had Alice’s parent sit with me.  We sat at Alice’s bedside.

I took Alice’s hand as I spoke to them, so that she could be a part of the conversation.  I explained that in the next few hours, I was going to give Alice a bath and change her pajamas.  Then the Respiratory Therapist was going to help me take the breathing tube out of her mouth.  We (her parents and I) were going to watch carefully to make sure that she was comfortable. Then I was going to give her medications to keep her comfortable.  I was also going to give her another medication to help dry up the secretions that were in her throat that may make her uncomfortable.

I described how I would turn off the monitoring machines and remove the machines from the room (except for the IV machine which I was going to use for giving medications to keep her comfortable). I described the kind of breathing and the sounds that she might make after the breathing tube was removed. I described all that we  would do  to keep her comfortable, such as keeping her mouth clean and moist, turning her frequently, talking to her, playing music that she loved and keeping her warm and dry.  We discussed their goals, which was that she would look and feel peaceful and comfortable.  We would keep her favorite quilt wrapped around her during and following death. We also determined that her teddy would accompany her to the morgue and I promised that I would ensure that her quilt and teddy were with her at all times until the funeral home picked her up. After our discussion, her parents took a deep breath and seemed at peace.

In reflecting on those moments, I realized that my most important job was not the physical care of the patient, but the emotional preparation of the patient and their families.  I am forever grateful to Alice and her parents for allowing me to experience their love as a family and for the growth as a nurse and human being that this experience brought to me.

Siobhan Bell, Ontario

YOUR MORTALITY IS AN OPPORTUNITY IN DISGUISE By Reena Lazar + Michelle Pante

Thanks to Michelle and Reena for this posting….
michelle-pante-and-reena
Earlier this year, we (Michelle and Reena) both spent time actively being with the fact that we’re going to die and we don’t know when; could be tomorrow, could be next week, or 37 years from now. It changed our lives.
 
We each wrote a Heart Will to be read at our end-of-life rituals, and Love Letters to our respective school-aged daughters to have when we die. The impact on us continues to be profound. Reena finds herself gushing with acknowledgements and expressions of gratitude to people around her and about everyday events, not something she ever did with abundance before. As a result she finds life to be so much brighter and lighter!
 
When writing her love letter to her daughter, Michelle asked herself, “What have I learned in my 48 years that will help this 10-year-old girl navigate her life, no matter what age she is when I die?” This process of letter writing helped Michelle uncover and crystallize one of her core truths; a truth that now calls her to account every day:
 
“I am my own best friend and my own worst enemy. It’s my relationship with myself not with anyone else that needs attention, tenderness and care.”
 
We launched WILLOW last spring with the radical goal of transforming the often-fragmented process of what is usually called “advanced planning” into a rich opportunity for personal growth and transformation. We want people to use that opportunity of getting clear and communicating their pragmatic and prosaic wishes about all matters ‘end of life’ — health and personal care, financial and legal matters, deathcare and funerals, legacy and remembering — to make a difference to the richness of their lives now no matter their age or state of health.
 
 
We’re all going to die, and we don’t know when. If you’ve experienced the death of someone close to you, then alongside your sorrow, or perhaps even your relief, you may have felt a force to renew or change something in your life. People in their dying days often speak of experiencing enormous growth and transformation while contemplating death. If death can provide this, so too can the conscious contemplation of your mortality. Let’s make our mortality work for us.
 
Your mortality is an opportunity in disguise.
At WILLOW, our core desire is to inspire personal reflection and action that will touch, move and inspire you, or make you stop and wonder, and perhaps even reconsider. To support you to reflect on your life and create lasting messages for those you love, we designed a weekly workshop series that will inspire you to live fully now.
 
LOVE LETTERS + HEART WILLS will be offered in Vancouver this WINTER (Jan 26 start) and SPRING (Mar 15 start).
 
In a thoughtful and dynamic group process we co-facilitate a small group process in which you will:
 
Uncover the source of your feelings about your inevitable death.
Reflect on your life and how you want to be remembered.
Write a Heart Will and at least one Love Letter to capture your wisdom, wishes and special messages to be shared at or before the time of your death.
 
“LOVE LETTERS + HEART WILLS was ground-breaking, transformative and essentials reflections for the soul.” – Helena Cynamon
 
With extensive training in deathcare—Michelle as a funeral director and hospice volunteer and Reena in all aspects of family and community-led deathcare —Reena and Michelle share a passion for using the conversation around death as a pathway to growth and healing for individuals, communities and the planet.
With every cell in our bodies, we believe that contemplating your inevitable and unpredictable death can actually light up and enrich your life now. To dive deeper into this area of personal reflection and discovery, we invite you to:

  • Forward this post to someone you know who loves to explore who and what matters most.
  • Forward this post to someone you know who loves to explore who and what matters most.
Warmly,
Michelle and Reena
Michelle Pante <michelle@willoweol.com>
 

New Award for a Compassionate Community Caregiver –

I am deeeelighted to announce, the new: Frances Montgomery Compassionate Communities Caregiver Award

frankie-and-kath-in-times-square-oct-2011

(Photo of Frankie and myself in Times Square in New York City a few years ago)

Created and Sponsored by Life and Death Matters

The Award

This award celebrates the immense contributions of the social community in caring for people at end-of-life and acknowledges that care of the sick and the dying is “everyone’s responsibility”.  This award acknowledges the invaluable contribution of community members who provide care and support for people throughout the living-dying and bereavement process. It is presented to an individual who is a dedicated “compassionate community caregiver”. It is hoped that the award will be used to help the individual access education or educational resources to increase their care competencies. (This award is for someone who lives in British Columbia.)

The Inspiration for the Award

The award is inspired by Frances Montgomery, an extraordinary compassionate community caregiver. Frankie, a retired nurse, has cared for her parents, in-laws, husband, extended family, friends and community members for over six decades. At 88 years of age, she continues to respond to and provide care for friends and those in her neighbourhood.

I (Kath Murray, founder of Life and Death Matters) often say that “I came to hospice nursing as a child”. It was Frankie (my aunt) who introduced me to care for the dying. Frankie taught me about community, casseroles, custard and caregiving. With her as my mentor, I learned about dying, care of the dying, care of the body after death. And watching her, I knew that care of the sick and the dying is “everyone’s responsibility”. From these childhood experiences, I became passionate about the need for excellent education and resources to help health care workers, nurses, and family members feel more confident and to be more competent in caring. This inspired my writing of the text, “Integrating a Palliative Approach: Essentials for Personal Support Workers” and the more recent text, “Essentials in Hospice and Palliative Care: A Practical Resource for Every Nurse”.

The Recipient

The award will be presented to a dedicated compassionate community caregiver, who works in a paid position, as a volunteer or as an informal caregiver. The caregiver might, like Frankie be a nurse or health care assistant, but the recipient might be a hair stylist, taxi driver, mechanic, gardener etc. This person will understand the needs of the dying and bereaved and will go out of their way to respond to those needs.

Eligibility

An individual, living in British Columbia, who has provided compassionate care and support to patients, loved-ones, neighbors and /or friends when dying or grieving, over a sustained period of time.  This person is one who could use the award to enhance their care competencies.

Application

An individual can apply for the award (requires two additional letters of reference) or can nominate another person for the award (requires one additional letter of reference).

In the application letter, introduce the person, and in a maximum of 500 words, describe the person’s contribution to caring for the dying and bereaved in their community. You may also want to describe what the person will do with the monies when received.

Selection process

The British Columbia Hospice Palliative Care Association’s (BCHPCA’s) Awards Committee will select the top applicants and forward the applications and recommendation to Life and Death Matters. Life and Death Matters will make the final award decisions, based on how closely the applicant reflects the inspiration for this award.  If there are several equally outstanding applicants, Life and Death Matters may enter the names in a draw to determine the recipient.

What

The award recipient will receive a cheque for five hundred dollars ($500). The recipient may use this to attend an education course/session, to purchase books, to participate in self-care, or any other project or initiative to enhance his/her care competencies.

Submissions
  • Print and complete Application Form
 Timeline
  • Award applications accepted between January 5 – March 31st, 2017
  • Award presented May 26, 2017 (BCHPCA Awards Luncheon)

Please submit your application and supporting documents to BCHPCA, by:

Mail:  Suite 1100 – 1200 West 73rd Avenue
Vancouver, BC V6P 6G5
Fax:    604-267-7026
Email: office@bchpca.org

APPLICATION / NOMINATION FORM

It Takes A Village….

It takes a village to raise a child, (and my mother added, “It takes a community to care for the dying”).

I often think of this quote and celebrate the people who helped me to raise my kids, and those who contribute to the development of hospice and palliative care education resources.

This past week I received some beautiful, inspiring, testimonials about our new nurse’s text, Essentials in Hospice and Palliative Care: A Practical Resource for Every Nurse. I want to share those testimonials, but do NOT want to share the testimonials until I acknowledge the people who contributed to the development and inspired or influenced or assisted with the writing of the text.

I understand that some people do not read the Acknowledgements section of a book, so I determined to publish these pages here on the website. In the coming days I will share the testimonials and you can thrill in the accomplishments of the larger group.

The new nurse's text, Essentials in Hospice and Palliative Care: A Resource for Every Nurse

Acknowledgement

I am extremely grateful to the people who helped me in the development of this book.

I am grateful for the hospice and palliative care nurses who strengthened my practice and who influenced the education I provide. I thank Terry Downing, Coby Tschanz, Della Roberts, Deanna Hutchings, Terry Webber, Jeanne Weis, Dr. Ann Syme, Uta Rach, Krystal Anne Murray Brown, Chelsea Knowles, Maggie Moreton, Sarita Van Dyke, Brenda Hearson, Ann Brignell, and nurse practitioners Camara Van Brennan and Janice Robinson.

Thank you to the educators who have mentored me, provided insight, and shared their passion for nursing and nursing education, teaching, and learning. In particular, I thank Jeanne Weis, Coby Tschanz, Joanne Thomson, Dr. Lorelei Newton, Dawn Witherspoon, Andrea Leatherdale, Leanne McKinzey, Dr. Carrie Mines, Laura Bulmer, Zola Goebel, Esther Aguilar, Dr. Gweneth Doane, and Dr. Kathy Kortes-Miller.

I am grateful for the privilege of working with these hospice and palliative care physicians in the clinical setting, with the Palliative Response Team, through educational endeavours and in international projects: Drs. Pippa Hawley, Deb Braithwaite, Josh Shadd, Sharon Koivu, Doris Barwich, Jim Wilde, Michael Downing, and Fraser Black.

Working with counsellors and spiritual care providers helped me to better understand the psychosocial perspective. I am thankful for the time spent with Allyson Whiteman, Elizabeth Causton, Michelle (Misha) Butot, Michelle Dale, Wendy Wainwright, Susan Brieddal and Dr. Carla Cheatham.

I am grateful for the personal support workers, including Jackie McDonald, who represents the many health care workers, health care assistants, and nursing assistants I have met through the years who have taught me much and who provide phenomenal care for the dying and their families.

I am grateful for all those who assisted in this project through research and contributions, specifically the following people:

  • Jeanne Weis, Terry Webber, Allyson Whiteman, and Terri Litfin for their help in searching the literature and identifying treasures of knowledge and best practice.
  • Kelli Stadjuhar and the Initiative for a Palliative Approach in Nursing Leadership and Education (iPANEL) team for their phenomenal work on integrating a palliative approach into care.
  • John Mastrojohn, Dr. Christy Torkildson, Pam Malloy, Dr. Ira Byock, Dr. Terry Martin, Dr. Cheryl Parrott, Lynn Tobin, Marlene Lee, and Sara Collins, who helped me to understand the perspective from the United States.
  • Michelle Dale, who shared her guidelines for family conferences and the analogy of the marathon of caregiving.
  • Lorelei Newton, Dr. Janet Storch, Barbara Mason, and Erika Paxman, who helped me to explore ethics in nursing and, in particular, ethics in dying and in caring for the dying person and family.
  • Kelsey Rounds, who contributed knowledge and research about marginalized populations and their experiences with health care.
  • Betty Davies and Dr. Rose Steele for their research on best practices health care professionals, which informed Chapter 3. Betty has been an example to me of excellence in nursing since the 1970s.
  • Misha Butot, who helped write the “Personal Creed on Love in Professional Practice” and, with creative support from Coby Tschanz, Allyson Whiteman, and Joanne Thomson, worked with me to summarize the “Ten Principles of Love in Professional Practice” (based on Misha’s initial research).
  • Darcy Harris and Dr. Phillip Larkin for their input on compassion.
  • Elizabeth Causton, who wrote the metaphor of the “Family Dance” and provided content on therapeutic boundaries, roadblocks to communication, and responding to questions.
  • Jim Mulcahy, who shared “A Story about Care,” which Virtual Hospice was wise enough to record and post as a YouTube video.
  • Bruce Kennedy, an expert and dedicated hospice palliative care pharmacist and researcher, who provided valuable input to the section on using opioids in hospice and palliative
  • Cari Hoffman who provided insight and guidance for the section on advance care planning.
  • David K. Wright who collaborated on the excellent piece on physician-assisted dying.
  • Andrea Warnick, a fellow student in the thanatology program at Hood College, who wrote the piece on working with children.
  • Ann Syme for sharing her ideas and resources on sexuality and intimacy.
  • Carla Cheatham for her research on spiritual care, and her contributions to the FICA Spiritual Care Assessment tool.
  • Françoise Mathieu, who contributed to the piece on compassion fatigue in the books I wrote for personal sup- port workers and nursing assistants: Integrating a Palliative Approach: Essentials for Personal Support Workers (2014) and Essentials in Hospice and Palliative Care: A Resource for Nursing Assistants (2015). The materials in those texts were adapted for this text for nurses.
  • Carrie Bergman from the Center for Contemplative Mind in Society provided insight and shared the illustration of the Tree of Contemplative Practices.
  • Many organizations and people helped form the foundation of this text. I gratefully acknowledge:
  • The two national education providers—Pallium Canada (Learning Essentials Approaches in Palliative Care [LEAP]) and, in the United States, the End-of-Life Nursing Education Consortium (ELNEC).
  • Betty Ferrell and Dr. Nessa Coyle, editors of and contributors to The Oxford Textbook of Palliative Nursing. They are leaders in palliative care nursing in the United States and internationally.
  • The two national, hospice and palliative care associations— the Canadian Hospice Palliative Care Association (CHPCA) and, in the United States, the National Hospice and Palliative Care Organization (NHPCO), and their respective leaders Sharon Baxter (executive director) and John Mastrojohn (chief operating officer).
  • Victoria Hospice Society, which provided me with almost 25 years of work experience, on-the-job education, and the opportunity to teach and attend some seminal educational events.
  • The College of Licensed Practical Nurses of Alberta, which gifted me with an in-kind donation of work time from Jeanne She provided her expertise as a strong hospice and palliative care nurse and a former licensed practical nurse. She has a Master of Nursing degree and brought with her to this project her experience in policy writing. This gift was a vote of confidence and support, and included the College’s express desire to have a resource that would help students in practical nursing programs achieve the competencies related to hospice and palliative care. Thank you, Linda Stanger, Teresa Bateman, and Glenda Tarnowski.

I need to acknowledge that my involvement with hospice and palliative care nursing started in my childhood. My dear aunt, Frances Montgomery, the master family caregiver, introduced me to caregiving and compassionate communities when I was a teenager, and my mother, Yetta Lees, not only taught me of community, but also asked and allowed me to be part of the community that cared for her when she died.

I have said often that I am very good at gathering together excellent people into a team. The team members that worked directly on this book are:

  • Joanne Thomson—How did I ever attempt to provide education without an artist in my life? Creating educational resources with Joanne has thrilled me. Together we wrestled with concepts and explored ways to create “delicious and digestible” resources, and then Joanne would retreat to her studio and later return with illustrations that inspired and strengthened the written materials. Thank
  • Greg Glover—Thank you for your outstanding work on the complex layout of this book, which helps make it visually delicious and educationally digestible. Your insight and experience have been invaluable to this
  • Ann-Marie Gilbert—This book would not have been finished if it were not for you. You endured and even enjoyed the process right through to completion. I thank you, Ann-Marie, and appreciate your many, many
  • Sarah Weber and Ann-Marie Gilbert—You are phenomenal editors. Thank you both. Your attention to detail is incredible. Wow! I stand all amazed!
  • Kim Garnett—We at Life and Death Matters knew when we first met you that we needed you, your leadership, and your ideas. Thank you for coming on board and for staying on board!

As well I thank Ted, my hubby of over 35 years. Thank you for your help, your encouragement, and your constant belief in me. ¡Gracias, mi amigo!

And to our kids—Jenny, Naomi, Michael, Krystal, and Geordie—thank you for all the lively dinnertime conversations about dying, loss, and grief. Thank you for helping me to live more fully and to love more deeply.

Kath

Introducing the new nursing text – and how it came to be

A bunch of years ago I met with a group of HPC leaders several times over a number of months. Each month George Eisler from the BC Academic Health Counsel, would ask the question, “How do we prepare the workforce for the coming tsunami of dying?” At the end of the series of meetings a project was developed for educating physicians and medical office assistants. As important as that was, I was concerned about the needs of the front line workers, in particular the health care workers and the nurses, who would be providing care for the dying.

My first book, “Essentials in Hospice Palliative Care,” was written for and provided to participants attending workshops on how to provide care for the dying. It was my hope that this book, the “Essentials text” would be a resource to help them to remember and use what we had talked about in the course as they continued in their practice. I eventually realized that it was the best resource available for Health Care Workers,(HCW), that I needed to “get over myself” and that marketing the Essentials text to colleges that were teaching Health Care Workers across the country would assist those students in learning how to provide care for the dying.

By 2013, the Essentials text and companion resources were integrated into the Personal Support Worker program in approximately one hundred colleges located in Ontario, Alberta and British Columbia. I had a contract with a college to supply them with the text for their HCW and their Practical Nurse (PN) programs. Four years had passed since the Essentials in Hospice Palliative Care text was published. So much had changed – it was time to update it and write the next edition.

Before I started writing a new text, I wanted to know if the Essentials text was helping students in their practice and whether they felt better prepared to meet the needs of the dying.  I wanted to know what to change to better meet the needs of the students.

I put together a great research team that included Dr. Anne Bruce, Dr. Antoinette Oberg, Elizabeth Causton, Ann-Marie Gilbert and Ted Murray. Through surveys and interviews we heard from Personal Support Worker (aka HCW) students and their educators who were using our resources. In response to the findings I decided to write a new text dedicated specifically to addressing the education needs and learning styles of Health Care Workers.

My goal for the new text was to create a book that was “delicious and digestible.” “Delicious” meaning that the student opened the book and wanted to turn the pages and read. “Digestible” meaning that the students could see themselves in the stories and would think “I can do that!” And my goal for the students was that they would feel more confident, be more competent and be compassionate in providing care for the dying person and their family.

In late 2014 the new text “Integrating a Palliative Approach: Essentials for Personal Support Workers” and companion teaching/ learning resources were born.

With that text complete, I then had to address the learning needs of students in the Practical Nurse program at the college I had the contract with. The new HCW text did not address their learning needs.

The Nursing Text

To write a completely new text for one small group of colleges? While not a great use of time, I felt it was necessary to honour the contract. An equally important motivator was the fact that the scope of Practical Nursing was increasing across the country. I knew that in long term care settings the PNs were often in charge – they were the leaders and they needed to know the basics. I also understood the need for palliative care to be integrated in caring for people with any life-limiting disease, early in the disease process and in all care settings. This content was needed by all nurses, before graduation – and was missing in the nursing curriculum. I also knew that there was no delicious and digestible, practical and pertinent, current and research-based text available. I decided to take on the challenge.

In the early stages I hoped to tweak the PSW text to meet the needs of the nursing students, presuming that they would want the basics and not want too much depth or breadth. I also wanted to help prepare the nurses to meet entry level competencies related to hospice, palliative, and end of life care.

This was the process that created the PN text.

The Competencies

To clarify the scope and depth of the content required for the nursing text, I reviewed and reflected on:

I felt it important to write a book that would help prepare nursing students to meet the required competencies while preparing nurses to provide excellent care for the dying person and their family.

Using concepts and keywords from the CASN (define)  competencies I began with a mindmap, then linked concepts from the supporting documents. This exercise inspired me to increase the scope and depth of the new nursing text. I talked with nurses in practice, and they affirmed, they needed and wanted more content. I was clear that I was not wanting to write an alternative to the excellent Oxford Textbook of Palliative Nursing (Ferrell and Coyle)!

I identified competencies that were best addressed through independent research and classroom discussion. I determined to provide a solid text for nursing students and an introductory text for nurses wanting to learn about hospice and palliative care.

The Process

If there is something I am expert at, it is connecting incredible people. Over the past two years I hired nurses, clinicians, counsellors, students and educators to research, summarize, write and review. With the additional input of more than a dozen other hospice and palliative care professionals across Canada, the USA and Ireland, the content was enriched.

The Gift

I was honoured to be approached by the College of Licensed Practical Nurses of Alberta (CLPNA) with an offer to help with the book. They donated time from one of their expert nurse consultants, Jeanne Weis, to work with us five hours a week for six months. Jeanne is a Practice, Policy and Research Consultant that is trained as an RN, LPN, palliative  nurse, educator, and just completed her Masters Degree.  This gift of Jeanne’s time was a message of support and recognition of the value of the work that I was doing. On many occasions I was buoyed up by their belief in the project

Linking with National Resources

In addition to collaborating with CLPNA, I knew it was important to align the text with national resources. I integrated the CHPCA Process of Providing Care which identifies two additional steps that are often missing when we describe the nursing process (read the book to learn more, or visit the CHPCA website) and I was inspired by the domains of care identified by the NHPCO in the USA, and the eight common issues identified by the CHPCA Model to Guide HPC. They served as the inspiration for the eight star image which I used to frame the nurse who is depicted as considering all the common issues that should be addressed when providing care. We also used this image to present the eight different nurses, representing “every nurse” from different backgrounds working in different care settings.

every-nurse

Content focusing on physical symptoms was aligned with Pallium LEAP (Canada) and ELNEC (USA) course materials. Joanne Thompson, (illustrator), drew a lovely image depicting how the text could prepare a nurse to participate in one of these two courses, or would serve as ongoing education to help embed the knowledge acquired at one of these two courses.

Checking the Research

I wanted to know what was new, if anything had changed, if the basics were still the basics, and what was still in question. I wanted to identify the basics of interactions, the most important themes in communication and ways of being with the dying person and the family.

Nursing Issues

I wanted to know what nurses were wrestling with, to understand the fears of nursing students and how they could overcome them. I wanted to know how education could enhance practice, increase confidence and competence and decrease compassion fatigue.  I reviewed the literature and I listened to nurses.

Education

I wanted to understand more about learning, learning styles, principles that I might be able to use to enrich the book and increase the likelihood of students enjoying the reading and integrating the principles in practice.

The Writing

As I said earlier, I thought that I could adapt the information from the earlier texts for the PN text. I was greatly mistaken. The writing of this text was the creation of an entirely new document, though it does share content, outline, and focus. I learned once again that teaching, learning and writing is an iterative process. I wrote, rewrote and wrote some more. I got feedback and we turned things upside down and around again. The ongoing feedback from esteemed colleagues was vital to the project. In the acknowledgement section you will read the names of those who contributed in an ongoing manner to the text. This text would not be what it is, without their support.

I had thought to title the text, “Essentials in Hospice and Palliative Care: A Resource for Practical Nurses and a Practical Resource for Registered Nurses.” However, as colleagues reviewed the text, they said, “This is not just for Practical Nurses, this is a text for every nurse who needs to understand hospice and palliative care”. And so, the title became, Essentials in Hospice and Palliative Care: A Practical Resource for Every Nurse.

nurses-book-cover-1080

The Team

Just as the inter-professional team is important in health care, an inter-professional team is essential in book writing and resource development. You can read the acknowledgements to learn more about our team… but I would like to mention just a few here…

Ann-Marie put my words on paper, she helped me to find words to express ideas, critiqued my writing and pulled me back time and time again to focus on the needs of the learner. She wrestled with this content on a daily basis for the past two years.

Joanne Thomson is “our” artist. Joanne is a former nurse and nurse educator as well as being a mighty fine artist. She uses her art to inspire, educate and to develop community. I so appreciate being able to work with an artist who can take concepts that I am trying to explain with words and put them into illustrations.

Sarah Weber edited and repeatedly asked difficult questions about the writing and what was intended.

Greg Glover is the designer who placed the words and images on paper and worked to make them beautiful and engaging.

Support

Ted, my incredible and supportive hubby of 36 years, has supported this project as he supported the development of the text for health care workers. He does whatever needs to be done to get the work done. In 2014 he tried to retire, and he is working as hard as he ever did in his professional work. People look at him and say, “Aren’t you supposed to be slowing down at your age?” and he, like the energizer bunny, keeps on going.

People have asked over the years, “Who pays for the development of your resources? Where do you get funding?” Together, Ted and I have funded the development, knowing that the need for excellent basic resources is there, and hoping that “if we build it, they will come”.

Next Steps

We will now take a breather and then we will develop companion learning resources, including student learning activities as well as PowerPoint presentations to assist educators and decrease the burden of preparation for educators. We will also be meeting with nurses, educators and students.

Please have a look at the “sneak preview” of the text. If you think it looks like a good resource, please forward to nurses, students and educators. If you have ideas or want to talk with us about integrating the resources in your program and how we might be able to help you, please contact me.

In Closing

This is the short story of how Essentials in Hospice and Palliative Care: A Practical Resource for Every Nurse came to be. On Monday the first shipment is due to arrive. I truly do hope that it will be a wonderful resource for every nurse.

Please email me with your thoughts about this blog posting… I would love to hear from you.