Incorporating Love In Professional Practice

Written by Kath Murray and Misha Butot. This writing was inspired by Misha’s original research and was lovingly edited by Coby Tschanz, Allyson Wightman and Joanne Thomson

 

Misha Butot was a counselor with 14 years of professional experience when she became curious about how love was a factor or perhaps the essence of quality physical and emotional care. She explored the ways that self-reflective and social justice oriented care providers thought and practiced “love” in their work with those they served by speaking with both clients and colleagues. She traveled through western Canada interviewing a small but diverse group of care providers of different ages, genders, sites of practice, and cultural and spiritual backgrounds. In spite of this diversity, many of their perspectives on the key role of love in their work were remarkably similar.

Fourteen years later I (Kath) asked if we could revisit her research and simplify it to make it more accessible to health care providers. Together with another nurse and counselor we were delighted to delve into this dialogue once more. These conversations led to this latest conceptualization of love in practice.

Our words are an invitation to reflect on what might be considered a “loving” way, a “compassionate” way, of engaging in providing holistic health and psychosocial care through the life trajectory and specifically in the last months, weeks and days.

I present the summary findings of “Love in Professional Practice” and “A Personal Creed on Love in Professional Practice” and invite you to be inspired and to consider what love in professional practice might look like for you.

Ten Principles of Love in Professional Practice

  • Recognizing that all beings are whole and interconnected
  • Recognizing that human beings, in all their diversity, have intrinsic value, and deserve rights, respect and reverence.
  • Caring with deep presence, compassion and mindfulness
  • Committing to creating an atmosphere of acceptance, non-judgement and the possibility of mutual honesty
  • Being willing to engage with you even when one of us is vulnerable, uncomfortable or uncertain
  • Being open to be changed by you, and open to be changed by this work
  • Being willing to support, recognize and bear loving witness to your changing
  • Committing to self-reflection, and to ongoing personal and professional growth
  • Coming to you fully engaged in my own life, relationships and community
  • Being open minded, open hearted and deeply curious about who you are, what is true for you, and how to care for you best

A Personal Creed on Love in Professional Practice

To you, for whom I will care,

I want to care for you with love in my professional practice. I want to live an ethic of love in professional practice.

I recognize that dying is a blessed and bewildering path of personal growth. And I recognize that caring for you, I will have the opportunity to learn with you, and I thank you for teaching me.

When I love in professional practice, I will see you as whole and dignified, with strengths and challenges that maybe unfamiliar to me. I will respect and revere you, as a beautiful child, visiting the fields near my home.  I will honour your hopes and concerns for yourself and others. And I will care for you with tenderness.  And, I will realize that we are connected, that you and I, we breathe the same air, and we need one another.

When I love you in professional practice, although your face, your body, your thoughts are shifted with disease, I will remember that you have rights to justice, to equity, care, and warmth.

When I love you in professional practice, I will honour that you know your needs and the needs of your loved ones the best. I will open my eyes, my ears, and my heart, to try to understand what is important to you and how you would have me care for you. I will feel for you in your suffering, empathize and care deeply about you. I will adapt the care plan to best meet your desires and concerns. Your desires and concerns will mean more to me than efficiency, checklists, assessment forms, and the tasks that I have been assigned – and even the tasks that I assign myself. I am here to help you to live as you are and contribute to the well-being of your family and community. I will wait with you.

When I love you in professional practice, I will know that I cannot change or fix what is happening, but I can be with you. I will know that I cannot tell you how to die, what to do, what to talk about or think about, or what to believe. However, I will also take the risk at times to share my truth with you, to share my observations and understanding with you, if that is where our conversations take us. I will also support you to act on your insights as you will. Even so, I will respect that you may not want to talk, to change, to grab hold, to step back. I will respect that sometimes you may hope for what seems impossible, and I can be present with you all the same.

When I love you in professional practice, I will come fully immersed in my life, living my life fully, engaged in my relationships and in my community. I will not expect you to fill that for me. I will engage with you, support your desire and ability to engage fully in your life, relationships and community. And I will stay engaged with you, even if there is conflict, if it is not comfortable.  I will build my stamina and ability to be with you in times of uncertainty, vulnerability, and fear.

When I love you in professional practice, I will understand that while you are dying, you are also living, and I so want to support you fully.

When I love you in professional practice I am willing to know and to not know, to make mistakes and to do things “right”. I will know that I can read about you in your chart and think that I know you, but I am willing to find that you are different than I thought.When I love you in professional practice, I am open hearted and open minded. I am willing to meet you where you are, to be open to you as you define yourself and to your experience of life. I will withhold judgement. Harvey Chochinov suggests that people see themselves through the eyes of their caregivers; may my eyes behold you as someone who is loving and beloved.

When I love you in professional practice, I am willing to be changed by you and willing to be changed by this work. Yes, when I love you in professional practice, I can join you on the path of personal growth, in living-dying.  Always I will celebrate and remember the opportunities to provide loving care to someone who is beloved.

When I love you in professional practice, I am willing and I want to take action to support you in your suffering.

With love in professional practice,

Kath Murray and Misha Butot

 

 

Copyright © 2016 Life and Death Matters
Copyright © 2016 Misha Butot

Saying Goodbye and sharing memories with a simple online solution

Guest blog post by Maxime T, co-founder of www.remember-me.co website. Remember-me is a simple and safe way to share, preserve and send on personal messages and memories to loved ones once you’re gone.

The idea of a web-based service that would give the power to people to communicate a little bit longer than life normally allows came to me a few years ago. It was initially a response to my childhood anxieties about the death of my parents, but became more urgent after the loss of my grandmother to the progressive dementia of her Alzheimer’s. What remained unacceptable is not being able to say a proper goodbye after either sudden death or long degenerative disease. I had to find the time and the funds to give life to the project, but finally in October 2015 www.remember-me.co was born.

Unlike some “after life” websites, the purpose of remember-me is not to offer a one-stop-shop where people manage their digital afterlife. We used today’s technology to create a simple platform purely intended for our users to create and send posthumous messages. Besides taking all necessary security measures, our focus was to make this service simple, easy and accessible to the widest of audiences. What developed was a three step process: write a message and add some content such as a video or a selection of pictures, assign a contact and decide the moment of delivery.

Besides giving the possibility to users to reiterate their affections for their loved ones, family members and friends, remember-me can be a great support for those left behind, for those in grief and to get the proper closure they need. But mourning has to end and so does the messaging. This is why we decided to limit our service to the year following the death of the user.

As in my own case, remember-me can be a priceless tool for users suffering from dementia to be remembered the way we all deserve to be. For the users unable to do it alone, working together with a close friend or family member can be such a meaningful project.

There are as many good reasons as there are individual cases and personal situations to use remember-me, each one with their own value. We purely created this service to give the chance to those who feel the need to say a proper goodbye; the words that really matter.

We won’t solve the pain caused by death, but we hope it might help in some small way.

Advocating for the Family of Persons with Dementia

This piece was written by our friend and colleague, Andrea Leatherdale – RN, BScN, Practical Nursing Program Coordinator at Centennial College.

 

Depending on a long-term care agency’s policies, when a person with dementia enters the end-stage of life, management/administration may seek to transfer care to an alternate level of care (palliative care unit) away from the familiar long-term care setting.  Families are often caught unaware of this practice and often desire their loved one to remain in the known setting until death.

Families benefit from familiarity with staff, continuity of care, the permanent room setting is set as the person’s “home”, often for years, and it is less disruptive at the time when impending loss/grief is occurring.

The Practical Nurse can advocate for families to be informed of the level of care process/policy/practices upon initial admission to the agency.  This is more than advanced care directives. It is making sure the family knows the long term care policies and past practices on progression of care from admission to death.  The family should know if transfers may occur to/from acute care but also within the long-term care facility if/when their loved ones condition changes.

A key question to the family should ask is “Can the dying person remain in place (“home” room) in the final weeks/days/hours of dying?”

A woman in her late 90’s had been LTC for at least 20 years.  She had entered the facility walking and cognitively aware 20 years previous.  As her dementia progressed over the years, she was transferred within the facility to the special care unit (secured unit) in the last 10 years of her life.  She became familiar with that environment, could navigate room to dining room and back to “her apartment” which was filled with memories, trinkets and objects from her past.

Her family was highly involved and felt comfortable coming to the unit, knowing other residents there as well over the years.  Suddenly she experienced a rapid decline which required an acute care transfer.  Upon her return to the LTC facility, she was identified as requiring “palliative care”, and administration made plans to transfer her to an alternate unit in the facility.  Administration of the agency said she no longer had “special care unit” status and would be transferred to the palliative care unit.

When the family was informed about the decision to move her, they were very surprised and upset.  They expected her to be able to remain in the familiar setting until her death. The nursing staff of the special care unit went to the administration to advocate for the resident/family to remain on the unit.  However, the administration said the resident no longer fit the criteria of the unit and must be relocated in order to make space for a new admission to special care.  The nursing staff on the special care unit said that palliative care could be provided by their staff and they already knew about the resident and had a strong connection with the family to provide support.  The special care staff argued that the staff on the other unit would not have time to achieve the same level of trust with the resident and family especially since it was clear that the resident had little time remaining.

The resident’s condition was significantly deteriorated and was apparent death was imminent within days.  Administration still said the resident must be transferred off the unit.  Nursing staff went to the attending physician, who agreed that the woman should remain in a familiar “home setting” and also went to administration to add that it would not benefit the resident to have a new doctor on a new unit to take over care at this point.  Administration still said the resident would be transferred.  In the midst of all this, the family was kept informed of nursing and physician advocacy.  Unfortunately, the consistent message by administration kept adding more and more stress and worry to the family while they were coming to terms with their mother’s condition.  Ultimately, the nursing staff advised the family to advocate for themselves directly to administration.  The administrators were still saying no to the family until a member of the family identified themselves as a lawyer and commented that the situation was not fair or legal.  Upon this discussion, the administration agreed and the woman remained on the unit for two more days until she passed peacefully with the family present and familiar staff.

Ultimately, the person and family’s needs were able to be met.  However, this was not without significant worry and upset at a time when more support was needed.  The other resident’s family members were also witness to this (as they were present for the family since they were all consoling each other).  The other families could see the process of advocating that the nurses and physician were attempting.  This precedent did result in changes to agency policies and allowing a dying person to remain on the special care unit is more common though not guaranteed. Nurses are continuing to advocate for change.

 

What are your thoughts on moving persons with dementia when death is imminent? Please leave your comments below.

My life with Alzheimer's disease by Gary Quinton

In Nov 2012 I had the privilege of speaking at the Manitoba Alzheimer’s Conference.  I spoke in a large gym.  Tables and chairs were set up throughout the entire space. I was nervous. The conference participants were people with Alzheimers and family caregivers.  I was going to talk about Alzheimer’s Disease as a terminal illness.  How was I going to do this without being offensive… How were the people going to receive this information?

As I spoke someone caught my eye in the left hand, front, corner of the room.  A nice looking man.  He smiled, nodded, smiled and nodded.  I thought, “this man knows what I am talking about… he must be a family caregiver or a nurse or doctor”.

When the session was over a few people gathered to speak with me. After a bit  I turned around and there was the man with the smile.  “Who are you?” I asked.  And he told me his name, “Gary Quinton”.

“But WHO are you?” I asked again, trying to find out “Why do you know this information? Why did it resonate with you?”

Gary then proceeded to tell me his story.

I am honoured a year later to receive his story via email.  He is happy for me to share his story with you. I am grateful that he has also shared his story on video with one of my favorite resources… it should be available in the coming months…. stay tuned!

Thanks to Gary – the man with the smile, an incredible attitude and a wonderful wife!

My story

By David Gary Quinton

I will start with giving you my age. I am 71 as of last Dec.

My wife Judy realized something was wrong long before I did. For me, the first real indicator happened while I was teaching a tai chi class. I was giving an example and saw my students look at each other a little quizzically. I asked them if I had been repeating myself and they said yes. I realized that this had been happening a few times already.

The diagnosis was not a shock but it was definitely a blow for us. I knew immediately that I had a choice to make. I could go downhill and get depressed or I could make the best of the hand I had just been dealt. Not even a minute went by before I decided to face this thing head on. I have not wasted time regretting that impulse but it does create some questions for others.

I want to maximize my time and do what I can, when I can, for as long as I am able.

Being honest and straightforward from the start has allowed our family and friends to be open with us. A classic example of the support I receive is the two friends I meet with every Wednesday afternoon to go walking, skiing, or cycling. This helps me to connect with friends and allows Judy some time for herself.  What a wonderful gift they are giving us.

The decision to tell people that I have Alzheimer’s has never caused me regret.

It is part of me, my circumstance. I operate on the basis that I will have lapses.  I will forget names, and other things. I don’t mind being reminded of details.

I am comfortable with explaining my situation to anyone who wants to know, or who has dealings with me.

A change was to surrender my driver’s licence. I took a breath and did it. As a result I have discovered two things: one, I still love riding a bicycle, and two, bus drivers, and bus rides, are wonderful. When I am unsure of my situation, I tell the bus driver I have Alzheimer’s and get confused sometimes.   Unfailingly, he or she is most helpful and clear. When I travel around Winnipeg I can rubber-neck and enjoy the scenery and incredibly varied architecture we have in our city. A further bonus, I am in great shape now and have ridden through the winter and into this summer.

*When I meet people, I tell them my name and that I have Alzheimer’s disease and apologize for likely needing to ask their names again and again. I have yet to see anyone act as if offended. (this is really liberating for me — I was always poor at recalling names)

The clients and people who volunteer and work at the Alzheimer’s Society are helpful and wonderful.  It is like going to a new school and meeting class-mates who are newcomers too. We bond pretty quickly.

The society provides material and programs that are informative and reassuring and, best of all, practical. We all get a chance to share — and I am learning to listen a bit better too.

About me, I am a father of two daughters and a grandfather of three grandsons — what gifts I have been given.

For my working years, I taught junior and senior high school English for thirty years — loved them all. Who but a fortunate person could be exposed to so many wonderful people and experiences as I was there?

I am retired now, that is like a long holiday — with house and ground – keeping privileges.

Last, but so easily first, my partner, Judy, has been a wonderful support, very active, patient,  adaptive and energetic — so I never could get in a funk if I so wanted.

Judy and Gary Quinton, Kath Murray, MB Alzheimer's Conference 201