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

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.

Music Therapy in Hospice and Palliative Care | Gwen’s Story

Guest blog post by Jennifer Buchanan of JB Music Therapy – a Canadian company based in Calgary, Alberta. “Our mission at JB Music Therapy is to transform lives through excellence in clinical practice and education by bringing music into the foreground. JBMT has been providing music therapy services since 1991. We offer personalized programs for individuals coping with brain injury, mental health issues, learning challenges, dementia, palliative care, addictions, long-term care, autism, as well as youth at risk.”

 

The Music Therapist’s primary aim is to assess, identify and provide music experiences that will evoke the greatest positive response from individuals and groups in the areas of: comfort, communication, self and social expression, mood, motivation and perception of self-worth.

Music Therapy is the study and practice of how music affects people.  Our music therapists use music as their primary intervention when working with all population groups.  The music therapists will incorporate singing, vocalizing, instrument improvisation, exploration of unique sounds and other sensory and sensitive experiences.  Tempo, timbre, melody, harmony, pitch and genre of music are always considered – with the primary aim of supporting the needs of the clients/patients by easing anxiety/stress, opening doors to communication, engaging  and creating opportunity for inclusive social interactions.

Integrating music with supportive care of the dying is becoming more common in hospice and palliative care programs.  Our clinical work has indicated that music therapy in Palliative Care can:

  • Help to Decrease Anxiety.
  • Help with General Feelings of Discomfort.
  • Address Spirituality
  • Enhance Quality of Life.

A certified music therapist is a graduate of a Canadian Association for Music Therapy recognized music therapy education program.  Music Therapist Accredited (MTA) is given to music therapists who have completed their education (undergrad or masters) in music therapy, a 1000-hour internship, and have passed the Certified Board of Music Therapist’s exam.

 

Gwen: will you remember me?

            Being aware of your personal soundtrack can have some profound consequences.

For Gwen, music enabled her to become all that she could be just a month before she would die. Gwen, a fifty-five-year old blonde beauty, sat in a warmly decorated room near the window. Sixteen months prior, she was diagnosed with cancer. Now she sat in a hospice room near the outskirts of town. She was a model patient going through many rounds of chemotherapy and radiation. After her initial diagnosis and for several months, her family and friends were not aware of her cancer. Gwen would rarely ask for help. The care staff were just around the corner and would often enter her room to check on her. Except for occasional pain medicine she would smile at them and say, “I’m okay.’ Her husband had passed away many years before and she would often say she was glad he went first as this would have been very difficult for him.

She never expected the breast cancer to metastasize at such a rapid rate until she heard those fateful words, “There is nothing more we can do for you but give you a comfortable place to rest.” She had dreaded telling her only daughter and her sister the news. When she told them, they both broke down in tears and were soon making sure the doctors had done everything they could. Now in hospice, Gwen did all she could in her fragile state to prepare her loved ones for the inevitable.

When I was introduced to Gwen, she was wearing a colorful head scarf that covered what was once blond hair. Pictures of her and her family were all around the room, interspersed with colorful paintings and drawings.

“Come, sit close to me, I have been expecting you,” she said.

She pointed to the chair next to her chair by the window and rested her hand on my shoulder as I sat down. She turned slightly and in a sweet, gentle voice said, “I have had a lot of time to process what is happening to me, and understand I must die. I am worried about my daughter, Hailey, and my sister Julia. They are very angry. She took a deep breath and said, “They are not accepting that this is happening to me or to them.” She brushed a few strands of what was left of her hair away from her eyes and said, “I need you to help me.”

She pointed to several pieces of art around the room that she had created over her lifetime. She spoke of how her daughter was as passionate about painting as she was. “It’s in the genes,” she assured me and mentioned to me her sister had started taking lessons over the past few years. She told me that she had some ideas of how to integrate art and music while also helping her daughter and sister come to the understanding that she is going to die—and soon.

Just as my grandmother had a plan years earlier reaching into a desk drawer for my grandfather’s favourite song, Gwen’s plan also rested in the desk drawer she had asked me to open. “Take out the small stack of papers.”

I looked at the ten songs in front of me.

“Will you please play the songs on your guitar on Saturday and meet us here precisely at 2:00 p.m.?”

Before I had the chance to say, “I don’t work weekends,” her blue eyes crinkled and she touched my shoulder again. I would change my weekend plans.

That Saturday, I had the songs prepared and arrived precisely at 2:00 p.m. Her daughter and sister were sitting on either side of her. She asked me to sit in the corner on a chair. Once we were all in place she sat up a little further in her bed. She started by saying, “Thank you for coming.” She then turned to her daughter Hailey and her sister Julia and said, “I invited you here today because we need to say goodbye.” Silence. “I know that this is hard for you as it is for me, so I came up with an idea that could perhaps help all of us. Hailey will you please go into the side closet and take out the piece of canvas I asked Julia to bring last week.”

Hailey slowly walked over to the closet, opened the door, and brought the canvas that had been leaning against the wall inside. “Julia will you please reach into that top drawer and bring out the pastels that one of the nurses brought for me.” Julia walked to the end of the bed and opened the top drawer where the pastels were. There were many colors.

Once the two women were back on either side of Gwen, they heard her speak again. “I have asked Jennifer to play ten songs today. During the first song I am going to start drawing and when the song ends I am going to pass the canvas to you Julia and you are going to continue the picture adding in whatever the music brings to your mind.

“When the second song is finished then you will pass the canvas to Hailey who is going to continue from where you left off. We will pass the canvas back and forth after every song for the first nine songs and then relax and reflect during song number ten. The tenth song is a special song I have selected for the three of us.”

Julia and Hailey stared at Gwen not saying a word. Gwen’s determination was clearly visible on her face and to say anything would break the spell she had on all of us. Hailey passed the canvas to Gwen and reached into the box on Julia’s lap to select a couple of pastels. I took a deep breath. When Gwen looked at me and nodded slightly I started to play. I could not see what was being created on the canvas, but I could definitely see a transformation happening on the faces of the three women. The canvas did what it was supposed to—passing between each family member at the end of each song. No tears were shed, just a change of focus and an occasional smile as they passed on their contribution.

We sang many powerful songs. What a Wonderful World. Lean On Me. You’ve Got a Friend. Soon it was time for the last song. I was nervous as I strummed the first few chords as I knew there would be no more pastels on the canvas, only reflections of what was created. The highly emotionally charged song Gwen selected as the last piece was Louis Armstrong’s, “Wonderful World.”

Gwen put a few finishing strokes on the canvas and then held it up for each of them to look at. The tears they held back released and two arms went behind Gwen in an embrace as they gazed at the piece of art they created. I finished the last words and put my guitar down quietly. Gwen passed the canvas in my direction as both her daughter and sister’s faces were now embedded in both of her shoulders. I carefully put the canvas on a high shelf looking down on them so it could dry. It was a beautiful meadow with flowers of many colours. I left the room so the women could say goodbye.

Gwen had set the intention of using her life’s music soundtrack as the backdrop to already powerful relationships. It was a non-verbal means of sharing herself and her heart, and those songs allowed her to say a touching goodbye.

Follow JB Music Therapy on Facebook, Twitter, and YouTube.

Three Big Reasons to Talk Now About Dying

[written by guest blogger Ann-Marie Gilbert]

3 Big Reasons to Talk Now About Dying

A few weeks ago the CBC dedicated an hour of their news show “The Current” to talking about end of life care. On the heels of the news coverage surrounding Brittany Maynard’s right to die, it seems appropriate to talk about death, dying, quality of life and dying with dignity. Are Canadians talking about their preferences for death and dying?  Dr. John You1  tells us that when Canadians are asked about their preferences, they generally prefer a care plan that does not include medical interventions.

“We actually went straight to pretty sick patients in Canadian hospitals as well as their family members and we asked them directly what their preferences would be for the kind of treatment they might want if they were to become really sick to the point of being life threatening. What they told us was they generally preferred a care plan that didn’t include resuscitation and other heroic measures and the majority wanted care that was focused on quality of life and comfort.” Dr. John You.

If you are one of those people that doesn’t want interventions, then this is the first reason for talking about your preferences.

Many of us will die after years of slow decline. What if you can no longer speak for yourself? That’s the second big reason.

Fortunately for Canadians there is The Speak Up Campaign from CHPCA. It provides a downloadable workbook to guide people through decision making for their own care at end of life care, death and dying. It encourages people to discuss these decisions and document their preferences, because there may come a time when we can no longer speak on our own behalf.

I’ll tell you a story of the Speak Up Workbook. My family and I used these resources a little over a year ago at Thanksgiving. We sat in a sunny dining room after breakfast, with our coffee cup and worked through the questions. Each of us wrote in our own workbook. We talked about our preferences for care, for Alternate Decision Makers and Advance Care Plans. Even funeral planning. Because no one was imminently dying the conversation was sort-of easy – it was hypothetical, calm, sometimes absurd and sometimes comical. I thought that was ok though, because these were tough topics to talk about, especially with your parents.

I was surprised by some of the answers others talked about. Whew it was a good thing we had talked together because there wasn’t any way I would have anticipated some of their choices!

It is now a year and a few months since we completed the Speak Up workbook together. Declining health in my parents prevents us from having this type of meaningful conversation now. That’s the third big reason to talk now about dying. I find comfort in knowing there is an Advance Care Plan in place to guide decision making. We know what they want.

If you are with family this holiday season or in the new year, consider taking time to talk about your preferences for death and dying with each other. Have a look at the Speak Up Workbook. Consider planning time to discuss it and work on it together.

It will be a priceless gift for you and for your family.

 

1 Associate Professor at McMaster University’s Michael G. DeGroote School of Medicine