Medical Assistance in Dying – One Year Later

In the year since Bill C-14 passed, legalizing Medical Assistance in Dying (MAID), over 1300 Canadians have exercised their right to die[1] [2]. Depending on your feelings about this topic, this may feel like a large or small number. It terms of total deaths, MAiD accounts for approximately 0.6% of the total number of deaths in Canada.

Country

Percentage of total deaths

Netherlands (2015)3

3.75%

Belgium (2015)[3]

1.83%

Canada (2016-2017)

0.6%

Oregon (2016) [4]

0.37%

Compelling accounts of people who have requested and received MAiD are freely available online, and in the popular media for people wishing to learn what the process is like, and how family might be affected by the dying person’s decision to end their life. Two examples of such stories are:

Where Do You Stand on Medical Assistance in Dying/Physician Assisted Dying?

Excerpted from Essentials in Hospice and Palliative Care: A Practical Resource for Every Nurse, 2016

What is currently missing from the commentary is information about how nurses and other health care professionals (HCPs) are deciding whether to support MAiD, participate in MAiD or oppose MAiD. Dr. David Wright, from the University of Ottawa, developed a series of questions to assist HCPs in discovering how they feel about MAiD. This series of questions are included in the Nurse’s text to specifically assist nurses to understand their own response to MAiD. At the end of the series of question is feedback that can assist and guide the next steps for health care professionals.

Featured below is the first of these questions . Respondents use the horizontal colour thermometer to identify the intensity of their If you are struggling to determine your position about MAiD, you may want to consider using these questions.

 

Accessing Education to Make an Informed Choice About MAiD

Fortunately, there are many webinars and online courses that will help new and established health care professionals learn about MAiD, the rights and obligations of health care professionals, and to make an informed decision about their desired level of participation. Examples of education currently available are:

  • Association of Registered Nurses of BC (ARNBC)

ARNBC offered a webinar, “Medical Assistance in Dying: A Year in Review,” with a special focus on the context of nursing. A video and PowerPoint series are available at this URL

  • College of Registered Nurses of BC (CRNBC)

CRNBC offers online course for assessors and prescribers involved in MAiD, running until September 2017. Access this course using this URL

  • Life and Death Matters – In our own corner of education the nurses text, Essentials in Hospice and Palliative Care: A Practical Resource for Every Nurse, includes an extensive section on MAID/Physician Assisted Dying that includes relevant information for nurses in Canada and the US. A preview of the nurses text can be viewed here.

Life and Death Matters also has a newly published resource on MAiD for front line caregivers using the text, Integrating a Palliative Approach: Essentials for Personal Support Workers or Integrating a Palliative Approach: Essentials for Nursing Assistants. This resource discusses the latest legislation about assisted dying (passed after the text was published), the roles of front line caregivers and ways to communicate about assisted dying. The resource is available free of charge – please email us for your copy.

Moving Forward with MAiD

New CNA Code of Ethics for Registered Nurses Includes MAiD

The ethical and moral rights of Canadian registered nurses to make their own decisions about MAiD are protected in the new Code of Ethics for RNs issued by the Canadian Nurses Association.

Part 1: D Honouring Dignity, 12 reads:

Nurses understand the law so as to consider how they will respond to medical assistance in dying and their particular beliefs and values about such assistance. If they believe they would conscientiously object to being involved with persons receiving care who have requested such assistance, they discuss this with their supervisors in advance.

Code of Ethics for Registered Nurses (CNA, 2017)

Participants Needed to Research Nurse’s Perspectives on MAiD

Dr. David Wright and his team are currently recruiting across Canada for a research study on the perspectives of hospice palliative care nurses regarding the ethics of MAiD. They are interviewing registered nurses now and possibly a second time in one year. Anyone interested in participating, but especially anyone from the provinces of Saskatchewan, Manitoba, Quebec, or any of the Maritime provinces, as well as any of the territories, please contact MAiD.Nursing@uottawa.ca.

Input Requested to Expand MAiD to People Not Addressed in Current Legislation

Bill C-14 does not address the needs of people diagnosed with dementia who want to request MAID in advance, nor does it address the requests from mature minors or from individuals who sole medical condition is mental illness. The Council of Canadian Academies (CCA) was asked by the Government of Canada to further study three particularly complex types of requests for MAiD. They have been charged with the following question:

What is the available evidence on, and how does it inform our understanding of medical assistance in dying (MAID) in the case of mature minors, advance requests, and where mental illness is the sole underlying medical condition, given the clinical, legal, cultural, ethical, and historical context in Canada?

Your input is requested and can be provided in one of these ways:

  • Organizations: Submit information here
  • Individuals, you may be able to offer your input through your professional association. For example, the ARNBC is requesting your input as they prepare their submission to the expert panel. Complete their questionnaire before August 18th.

HPNA Position on Assisted Dying

  1. HPNA Position Statements Endorsements – HPNA recently updated 2 new Position Statements listed below. If your association is interested in endorsing the Position Statements, please contact HPNA.

Last Thoughts

My hope is that all individuals will be encouraged and able to participate or not participate in MAID to the degree that they are comfortable, and that every person will be supported with kindness and empathy, just as we desire to provide kindness and empathy to those we care for.

What does this mean in action? I am interested in hearing your views….


[1] http://www.cbc.ca/news/health/medically-assisted-dying-canadians-rob-rollins-1.4056700

[2] https://www.canada.ca/en/health-canada/services/publications/health-system-services/medical-assistance-dying-interim-report-dec-2016.html#t1

[3] http://www.dyingforchoice.com/docs/AssistedDyingPracticeInBeneluxWhitepaper1b2016.pdf

[4] http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/
DeathwithDignityAct/Documents/year19.pdf

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.

Assisted Dying….

Two physicians are diagnosed with a terminal illness.  Both physicians worked at Mt Sinai Hospital. Both physicians discuss dying, death, and their thoughts on Physician Assisted Dying.

Dr Donald Low, Canada’s SARS physician.

Dr Larry Librach, Palliative Care Physician.

Both physicians are articulate, and both have great rationale behind their viewpoints.

In the coming years the courts will decide whether or not to legalize Assisted Dying. Guidelines and parameters will be set.

What do we need to know in order to enter discussion and make informed choices?

First and foremost, we must have clear definition of words and terms related to the topic.  (Who will define?  What definitions will we use?)

Second, we need to listen and learn from those who face death, those who work with the dying, and those who care for the living.

Third, if Assisted Dying is legalized, then how will we as a society provide these services?

Your thoughts?