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

Thoughts on Physician Assisted Dying

It has been an incredible month. We attended conferences in Texas, Ontario and California. We are home now, absorbing the learning, and trying to integrate what we learned into our beings. Most profound for me was the opportunity to attend sessions addressing Physician Assisted Dying.

The debate is over. Physician Assisted Dying has been legalized in Canada. Health care professionals and administrators in hospices and palliative care (HPC) now need to develop policies outlining what services their HPC program will and will not provide. Physicians need to decide how to respond to requests, whether or not they are willing to provide a “hastened death” and if not, then decide who to refer people to. Nurses need to decide how they will respond, both within their formal work setting, but also, how they will respond as a family member or friend when the questions about hastening death are raised.

The entire health care team will need to reflect on how to respond when someone chooses a hastened death over the services of hospice and palliative care. Will we feel like we have failed? And if we feel that we have failed, how will we sit with that in the coming days, or more particularly, in the nights ahead?

As a nurse, if I choose to attend a death that has been hastened, how will that be for me and for the others who attend? Rather than witnessing the physical changes that often occur over a matter of days and hours, how will it feel to watch a person go from alive and cognitively intact, to waxen, cold, and dead,…. in just moments?

A few people have asked me what I think and feel about Physician Assisted Dying. I have avoided sharing my thoughts over the past years… but am willing to share my thoughts and the process I am going through today. Please read my thoughts knowing that like many of you, I am trying to make find my way in this new territory. These are my thoughts of the moment.

For much of my life I have been involved with caring for people and creatures who were dying. I cared for family, friends, community members and patients. For decades I sought meaning in caregiving and in dying. I found meaning and value in the last weeks, days and hours at the bedside. I searched for the benefits of family sitting vigil. I tried to find the good in the challenges that occurred. I came to believe that there was growth at the end of life, growth in the dying days, and sacredness in the act of caring for and being with.

Not only did I find value in the process of dying, I also sensed that on occasion the dying person was able to choose when they wanted to die naturally. Over the years I have been asked by friends to be with them when they were dying. Interesting to me, is the number of times when despite my limits and inability to be with someone constantly, I was there when they died.

For example: many years ago, when we were both young moms, my friend was diagnosed with breast cancer. I went to Vancouver to bring her home to the island. As I left her side at the hospital that night, I told her that I would not be able to return for ten days. I felt awful that I could not be there until then. I kept in touch by phone, and sent messages along. Ten days later I drove the island highway and made my way to her hospital room. Alongside her husband and her sisters, we companioned her. We waited with her and she died.

A similar story has played out many times since. Someone asking, “Kath, can you be with me when I die? Can you be with my family?” Try as I might to be there, I was often not able to attend 24/7 because of family and work commitments. Yet, often, death and I, were there at the same time. Natural death seemed to have a plan of its own.

With the legalization of assisted death, I look ahead and consider a new request. I can imagine that if I was in the Washington or Oregon, the request might be, “Kath, can you come and be with me when I take my medications?” or if in Canada, the request might be, “Kath, can you be here when I receive the injection from the doctor? Can you be here with my family?”

I wonder. How will I respond? In both cases, I do not have to be the one to give the medication. All that I am asked is to be present.

The request is simple enough. But then the planning. The planning seems surreal.

In Oregon and Washington states, once the person has met all the criteria, the person can set their own time and take the medications in the privacy of their own home.

In Canada, the dying person will need to arrange with a physician to inject the medication into their blood stream. What happens if the person decides they would like to live for another day, another hour? Would the person feel they need to go ahead with the plan because the doctor had arrived?

And as I think of the injections, I am reminded of the presentation at the Canadian Hospice Palliative Care Association conference by Dr David Wright, a nurse at the University of Ottawa, who is exploring the nursing perspective on this issue. David asked excellent questions: What does the nurse experience if the dying person chooses a hastened death over hospice palliative care? ….. He then asked… or was it someone else who asked, “Even though the physicians inject the medication, how many physicians do you know who can start an IV without the help of a nurse?” Nurses are a part of this process.

At the California Hospice and Palliative Care Association Conference, Anne Koepsell put forward four categories for how hospices respond to the requests for Physician Assisted Dying:
Embrace: hospice designates a social worker to respond to the requests, physician provides the prescription, staff are permitted to be present at time of death, and the hospice coordinates with Compassionate Choices.
Educate and support: hospice staff provide referrals to someone who is willing to discuss and assist with hastening death, the staff may or may not be present when death occurs.
Distance: hospice staff refer to a resource who will address the request.
Denial: hospice refuses to allow staff to discuss the request, and does not make referral.

At this moment in time, these are the three things that I know for sure:

1. I do not like the term “Physician Assisted Dying”. It is my opinion and my hope that physicians should assist every person in dying. Hospice physicians assist the dying person. They do not hasten it. So, I prefer instead to use the term, “Physician Hastened Death”, or “Hastened Death”.

2. I would like to see a world where everyone does have a CHOICE, a real choice, and I would like to see that Hospice and Palliative Care are one option. At this time, less than 30% of dying people receive services from a specialty Hospice Palliative Care team. When a person lives in remote and rural areas, when a person is not from a middle class Caucasian family, the person is much less likely to access HPC!

3. Finally, all HPC professionals need to be comfortable with talking with dying persons about the option to have a hastened death. They need to be able to hear the concerns and questions, to share the resources for hastened death, and to share what hospice and palliative care have to offer.

We, hospice palliative care professionals are at the bedside of people when they ask these questions. We, know how to talk about difficult things, how to talk about goals of care. We know the resources, we know the options, we can advocate. We are with friends and family when they ask questions about hastening death. No matter what people decide, we need to be comfortable with the conversation.

What are your thoughts on “Physician Assistant Dying”? Please leave your thoughts below, or chime in on our Facebook page.

Behavioural Changes: The Importance of “Knowing the Person”

This story is shared with us by our colleague Andrea Leatherdale – RN, BScN, Practical Nursing Program Coordinator at Centennial College. In this story, the nurse observes changes in behaviour of one of the residents. The nurse is not able to shake off the concern that something significant is about to happen. The story illustrates the nurses listening skills and her attempts to alert others to the changes. 

A woman in her late 80s with advanced dementia and COPD with limited communication.  She was usually kept engaged in hand activities, like folding laundry and dressing dolls.  The usual practice on the unit was for nursing staff to play music during morning medication rounds and engage residents with singing and dancing.  Usually this woman wouldn’t engage, even though her family said she loved music.

This woman’s COPD was typically mild, but one morning she developed a new respiratory congestion, that was relieved with inhalation medications.   At the time that the morning congestion started, she started to sing spontaneously.  She was singing “Wake me up before you go-go, I’m not planning on going solo”.  She sang this phrase over and over again.

The nurses were surprised at this sudden change. The resident did not normally engage verbally. The nurses wondered what caused this change in behaviour, they discussed it as a team and reported it to the doctor and asked the doctor to assess the woman’s chest congestion. The doctor said that since the chest congestion cleared with the morning inhalation treatments, it was not a concern.

When her family heard their mother singing, they were excited that their mother was more alert and active. They attributed this as a positive change to the way the staff was interacting with her.

The nurse assigned to care for her, who was most familiar with her, still felt that there was something else happening. She talked with the doctor again. The doctor still said since the woman was eating and drinking normally and her temperature was normal, no further investigation was needed.

The resident sang this song every morning for 5 days.  On the fifth day, she had a sudden increase in congestion. She was sent to hospital.  She died 2 days later in hospital from pneumonia secondary to COPD. Her daughter was with her at time of death. Other family members were not there. The family was concerned that she had not died in place, in her home, at the facility.

 

We’d love to hear about your experiences and thoughts on this story. Please leave your comments below.

 

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.