Don’t go whistling past the digital graveyard!

Written by Angela Bruce, RN

Thanks to Kaylee for directing us to a blog post that reminds us how important it is to get our digital house in order.  On August 10, 2019 she provided the link to this comprehensive guide containing current advice and instructions on how to plan for your digital legacy and your assets after you die. The author of the blog states,

With hundreds of millions of social media users, the number of social media accounts of dead people may outnumber those of the living in a few decades. 

But as you consider the eternal limbo of those accounts remember this cold, hard fact: In this digital age, your loved ones will be faced with the complexities of managing your digital assets after you die.

Accessing digital devices like computers, hard drives, tablets, and phones, may be impossible if your loved ones don’t have passwords or encryption keys. Not only may they lose irreplaceable photos, important letters and documents, there are financial assets that may be forever lost.

These monetary assets go far beyond your bank account. For example, Bond Brand Loyalty estimates there are currently $16 billion dollars in unredeemed loyalty points in Canada alone, and many of those dollars will never be redeemed if the owner has died with no arrangement to transfer ownership of the points. According to a report in the Globe and Mail, by the end of 2020, the average Canadian will have accumulated $10,000 worth of digital assets, including money stored in online payment accounts, loyalty program rewards, virtual currencies and online investment or bank accounts.[1]  Keeping track of your digital presence is a sound, personal, and economic practice.

Digital assets to consider when making an inventory of  your online presence include:

Financial Access

  • Bank accounts
  • Online payment accounts (such as PayPal)
  • Online seller accounts (like Amazon™ or eBay®)
  • Brokerage accounts
  • Cryptocurrency investments

Communication

  • Email accounts
  • Social media accounts
  • Forums or chat rooms
  • Blogs or websites you own
  • Online gaming accounts

Cloud Storage

  • OneDrive; Dropbox, GoogleDrive etc
  • Digital photos, videos and music files
  • E-books or audio books

Loyalty/Rewards Programs

  • Credit card loyalty program rewards
  • Travel rewards programs (such as Air Miles)
  • Retailer loyalty programs

Copyrights

  • Logos, illustrations, artwork or animations you own
  • Digital copyrights, trademarks or patents[2]

Adding to the confusion, there is a wide diversity in policies for dealing with the death of platform members.  Legislation on digital death has not kept up with the rapid pace of technological advancement.  Worldwide, there is a lack of established laws and this has allowed companies to choose their own rules.  Social media platforms have a patchwork of ways for dealing with a member’s death.  Customer loyalty programs may not be transferable. Purchased digital media assets, such as iTunes or eBooks, cannot be transferred.

Three decades ago, there was no such thing as planning for your digital death. Now it is increasingly seen as a task that is essential to ease the work of our loved ones after our death, allowing access to funds to pay bills, cover other expenses, and to manage or close accounts. Think of it as advance care planning for your digital life. Tackling this chore will save many hours of stress and heartache for your loved ones and potentially save priceless memories, assets, and facets of your life from being irretrievably lost in the cold vacuum of cyberspace.

Have you had any experiences dealing with digital death? Please share your story in the comments section!

Warm regards,

Angela Bruce

Looking for more information on this subject.

Death and Digital Property: What happens to your online life when you die?

 March 29, 2015 by Kath Murray

Creating a Digital Estate

April 5, 2015 by Kath Murray

 


[1] https://www.theglobeandmail.com/investing/globe-wealth/article-dont-forget-about-digital-assets-in-your-estate-plan/

[2] https://www.cibc.com/en/personal-banking/advice-centre/family-finances/estate-planning-for-digital-assets.html

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 <[email protected]>