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Personal reflection: Medical Assistance in Dying

Today Bill C-14 was presented to parliament. big smooth rock in water

Today the Canadian Government introduced legislation to make medical assistance in dying legal. The facts about the proposed legislation can be found here.

People have asked what I think about Medical Assistance in Dying. I have not presented my thoughts openly on this topic, for a number of reasons. Tonight, I will respond to those who have asked, and I will share a few very personal thoughts.

April 14th. My reflection on Medical Assistance in Dying

In an ideal world it would be nice to not have this issue before us. But we do not live in an ideal world.

In an ideal world, people would have access to hospice and palliative care services, holistic person centered care would be available from time of diagnosis through to and following death. But we do not live in an ideal world.

In an ideal world, community would care for one another, people would not be lonely, and needs would be addressed from childhood on, fear would not exist. But we do not live in an ideal world.

In an ideal world, there would be funding to assist community to address sorrows and suffering. But we do not live in an ideal world.

In an ideal world, people would not struggle for air, pain would not saturate a person’s being… but again, we do not live in an ideal world.

Ideal is defined as a standard of perfection or excellence, existing only in the imagination, not real or actual…  And this type of ideal does not exist.

So, for these reasons, I know that there are situations where medical assistance in dying is needed.

I understand that for many people, that this is not about the degree of suffering, but rather the desire to have control over how, when and where people die. I appreciate that as Canadian, North Americans, that autonomy is a most important value. And so, I am satisfied that this is what the Canadian people want.

For me, the lesson that I am forever having to learn, is to let go of control, and to allow life. I think that this may yet be one of my lessons in dying, to let go and let life – and death – occur.

Years ago I heard of a midwife in Australia who commented on the decision that some women were making to choose and plan a cesarean section in advance, preferring the surgery over natural childbirth. The midwife asked, “Have women lost confidence in their ability to birth naturally?” and in reflecting on that comment, I wonder, “Will we… or more importantly, will I have the confidence to die naturally?”

I understand the rationale for this new legislation. I understand the desire to want to choose.

And I will continue to hope that my living and my dying, will afford me the opportunity to go sweetly and naturally into that good night.

Kath

PS, another day I will write about the specifics of this legislation… there are a few things that I am especially glad about.

PPS, You are invited to share your thoughts and feelings here. Please be kind and respectful though. I have no space and time for turning this into a debate… the decision to allow Medical Assistance in Dying has been made. We now look ahead to developing and influencing policy to protect the vulnerable, those who want the service, those who don’t, those who want to assist, and those who do not want to be involved in any way. How are we going to do that? And, as evening and night falls around you, what are your thoughts and feelings? What are your concerns as a person and as a professional? What do you worry about? What are you glad about? What process are you using for understanding and grasping this new legislation?

PPPS, I am honoured to have David Wright from the University of Ottawa provide a piece on Medical Assistance in Dying for the new text for nurses that we are working on. He is a gifted writer, and has done some great research on this topic.

 

Advance Care Planning Day – Speak Up!

Advance Care Planning Day in Canada, and National Healthcare Decisions Day in the USA, is quickly approaching. On April 16, 2016, it’s time to speak up – and have discussions with friends and family members about your wishes for end-of-life.

 

 

Life and Death Matters created Care Planning Cookies, edible cookies with a message inside, each one intended to stimulate conversations about living well and dying well. One hospital in Ontario is ensuring that each patient receives a cookie on their meal tray, and that family and staff are given cookies with their food and beverages in the cafeteria, leading up to April 16th.

 

Care Planning Cookies - ACP DAY 2016

 

There are many online resources to help you with advance care planning.

Speak Up offers “an interactive workbook to help you complete an advance care plan that outlines your wishes about health care decisions in the event you are unable to do so”, along with printable workbooks and quick guides.

NHDD (National Healthcare Decisions Day organization) offers advance care planning resources, and ways to join the movement.

Five Wishes is used in all 50 states and in countries around the world. Five Wishes can be used in any part of the world as a helpful guide and documentation of your wishes, and is available in 28 languages.

The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care. Watch the co-founder, and Pulitzer Prize Winning Columnist, give an overview on The Conversation Project and why it is so vitally important.

To find out what’s happening in your community, use a Google search for “advance care planning day events 2016 in [city]” and you’ll get a plethora of ACP Day activities that are happening in your area.

Leave a comment and share what you’re doing on April 16th,
and let’s start the conversation.

 

 

What’s in a name? Why conceptual clarity about “a palliative approach” is important

Guest post by authors Pat Porterfield, Kelli Stajduhar, Rick Sawatzky, and Cara Pearson of iPANEL. A recently published article by the iPANEL team is the focus of this blog post. The goal of this research was to clarify the meaning of a “palliative approach” to healthcare for people who have chronic advancing life-limiting conditions. Read the full article for more information about a palliative approach and prominent care delivery models.

Palliative care … palliative approach … hospice palliative care … end of life care – Phrases and terms often used interchangeably, often misunderstood, and often the cause of extended discussions among those of us interested in the care of people who are living with and dying from serious illnesses.

Since 2011, we’ve been part of a group of British Columbia nurse researchers, clinicians and administrators examining how we could best integrate a “palliative approach” into the care of people with chronic life-limiting illness. This group is iPANEL (Initiative for a Palliative Approach in Nursing: Evidence and Leadership). We recognized that people who were dying from chronic, life-limiting illnesses, such as dementia, frailty, COPD and kidney disease, were not receiving adequate palliative care services. We also recognized that most people with these long-term advancing illnesses need a different type of service. What they need is a palliative approach to care, which can lead to better care planning throughout the course of their illness, before they are recognized as imminently dying.  Proper care planning acknowledges that these individuals will not recover from these illnesses, and that the best care we can give will include clear communication about what they can expect and how we as care providers can meet their needs.

Our research has taken many forms, but at its core is a recently completed knowledge synthesis project and subsequent publication entitled Conceptual Foundations of a Palliative Approach: A Knowledge Synthesis. This paper is open access so that everyone can read it for free.

Since we became involved in this work, we commonly hear, “Why do we need to clarify what a palliative approach is? After all, the World Health Organization (WHO) already defines palliative care as an ‘approach’ which includes ‘life-limiting illness’ and ‘early identification.’ Isn’t that what you mean by a palliative approach?”  We recognize the importance of the World Health Organization’s work in using the term “approach” to indicate that palliative care implies an attitude and manner of care appropriate for life-threatening illness earlier in the illness trajectory. However, this definition does not address all the characteristics inherent in our understanding of a palliative approach.

Based on our analysis of the literature, we propose using the term palliative approach to describe the attitude and “processes” by which the foundational principles and knowledge of palliative care are adopted, adapted, and integrated to improve quality of life and relief of suffering for all those with chronic life-limiting conditions.

A Palliative Approach to Care

  1. Mandates upstream orientation of palliative care principles to meet the needs of patients, residents, clients and families;
  2. Requires adaptation of palliative care knowledge and expertise to different patient populations and their unique disease profiles; and
  3. Is operationalized through contextualization and integration into all healthcare sectors and settings.

As described in more detail in the paper, the work involved in adopting, adapting, and integrating palliative care principles and knowledge requires the expertise of health care providers familiar with these illness trajectories. These health care providers already work within existing systems of chronic care management and are familiar with providing care to patients with life-limiting illnesses. What is key is finding ways to support more effective partnerships between existing health care providers. Improving collaboration between primary care, chronic disease specialists and palliative care services is essential to enacting a palliative approach at clinical and system levels.

One such way to support effective collaboration is a shared understanding of a palliative approach, with conceptual and linguistic clarity. When palliative care is understood as a service, there can be ambiguity in who is responsible for delivering that service. Whereas if a palliative approach is clearly the philosophy that everyone uses and is understood to be delivered by a wide circle of care providers, discussion can more effectively focus on patient and family needs, with each health care professional doing what they can to meet those needs. Consider the following brief scenarios that illustrate this difference.

Care planning discussions for “Mrs S,” who is an 83-year-old patient recently diagnosed with end-stage renal failure:

 

Scenario One:  Using “palliative care” as the descriptor for the care required

Nephrology clinician: “This lady needs palliative care” (intent: as in philosophy or approach to care, acknowledging that the patient has needs related to her life-limiting illness).

Palliative care clinician (PCC): “She isn’t ready for palliative care right now; she really needs a discussion with you” (intent: “not ready” is in reference to a palliative care specialist service; the PCC supports that the patient needs information about her illness progression and options, but feels this information is best provided by nephrology and wishes to ward off what would be an inappropriate referral) “and she certainly isn’t eligible yet” (intent: referring to palliative care benefits which are intended for those patients within the last six months of life; additionally, the phrase “not eligible” adds to the confusion about what palliative care is).

Clearly there is lots of room for misinterpretation of what is meant by “palliative care.” The back and forth between using “palliative care” as a philosophy and as specialized services, often with eligibility attached to those services, is evident in the literature. This scenario demonstrates the lack of clarity.

 

Scenario Two: Using “palliative approach” as the descriptor for the care required

Nephrology clinician: “Mrs S needs a palliative approach” (intent: palliative approach as a philosophy or approach to care, acknowledging that patient has needs related to her life-limiting illness).

Palliative care clinician: “I agree. What do you think are her most immediate needs?” (there is no ambiguity; it is clear that the intent is for the nephrology team to assess the patient’s needs).

Nephrology clinician: “We need to talk with her about how her illness may progress and let her know what her renal care options are” (intent: acknowledges the information about illness trajectory and treatment is best provided by nephrology).

Palliative care clinician: “Sounds good. Let us know if we can help you provide care as her illness progresses” (intent: the specialized palliative care clinician is available for support, but ongoing care will be provided by the renal team).

Although this second scenario is obviously idealized, the term palliative approach contributes to clarity of focus, which is the evolving needs of the person and an approach to her care based on partnerships.  In fact, partnerships were identified by our knowledge synthesis as being enablers for integrating a palliative approach.

 

What are your thoughts?

What do you think are the implications when we use terms like palliative care and palliative approach interchangably, or when we don’t have a clear understanding of what these terms mean?  Do you see possibilities to improve care through refining our understanding and use of the term palliative approach? Do you have ideas for integrating a palliative approach in your care setting?

 

iPANEL is a group of BC nursing researchers, practitioners and administrators that formally came together in 2011, with funding from the Michael Smith Foundation for Health Research. The iPANEL team is committed to improving care for people with chronic advancing life-limiting conditions, and their family members, by furthering the integration of a palliative approach throughout the British Columbia health care system.

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

“I don’t have time for this!” – A Compassionate Guide to Caring for Your Parents and Yourself

Guest blog post by Katherine Arnup – life coach, speaker, and a retired Carleton University professor.  Author of the award-winning book Education for Motherhood, a history of advice for mothers, she has pioneered studies on the diversity of family life. In her latest book, “I don’t have time for this!” A Compassionate Guide to Caring for Your Parents and Yourself, she tackles the last taboo—death itself. 

Almost twenty years ago, my sister Carol died of cancer.

She was a gifted Special Education teacher, director of countless school musicals, and my big sister. In January 1997, 19 years after her first encounter with melanoma, her cancer returned with an unstoppable force. As part of a team of friends and family, I cared for her during her final six months: the saddest, most terrifying and most transformative experience of my life.

Shortly before her death, Carol quipped, “You’re going to be an expert at this by the time you’re done with me.”

“Maybe,” I protested, “but I don’t want to learn it from you!”

We both laughed, knowing that, of course, this was precisely what was happening. I had a lot of learning to do because, before my sister got sick, I was more terrified of death than you can imagine.

Caring for my sister as she was dying transformed me.

Four years after her death, I took the volunteer training course at a local residential hospice program. From the moment I entered the hospice, I knew that it was where I belonged. Week after week, I found myself talking to family members, caring for dying people, helping to teach others what my sister had taught me.

I was 47 when my sister died (she was 51). Though often scared that I might not be able to endure the situation, my love for her enabled me to face my own fear of cancer, illness – even death itself. In facing those fears which had both dominated and limited my life, I was able to bring comfort to hospice patients and their families, to friends and relatives facing their parents’ aging. And I was empowered to face my own parents’ final years when that time came.

Throughout my years of caregiving, including 14 years as a hospice volunteer, I have written about my experiences. That work culminated in the publication of my book on caring for our parents and ourselves.

The book provides a roadmap for the journey into aging, illness, and dying that we will all travel—ourselves and the people we love. With stories from my family, my coaching clients, and my years as a hospice volunteer, I encourage people to overcome their fears of aging and loss so they can show up for the challenges in their lives.

We will all go through this in our lives. Everyone has either already lost their parents or is going to at some point in their lives. That’s just a hard fact of life. And of course, each one of us will face our own death.

I want people to know that they’re not alone.

When you are faced with caring for someone you love, you feel as if you’re the only one. It’s a very difficult time, especially if you still have children at home. Hence the title of my book – “I don’t have time for this!” But you don’t have to do it all by yourself. Family members, friends, neighbours, and professionals are all able to ease our load if we are willing to reach out for help.

You can contact Katherine Arnup at katherine@katherinearnup.com.

iPanel – Conceptual foundations of a palliative approach: a knowledge synthesis

Over the past few years I have cited the iPANEL research (Initiative for a Palliative Approach in Nursing: Evidence and Leadership) as one of the most important research projects in hospice and palliative care today.

Today the iPANEL team announced the publication of their latest article – Conceptual foundations of a palliative approach: a knowledge synthesisThe article can be found here.

Please distribute this article widely! This is an open access journal, so SEND people to the LINK instead of sending the PDF. The number of hits impacts the ranking of the article on the journal’s website!

If you are citing the article, Rick has provided the citation to save you the time and effort of figuring that out!
Sawatzky, R., Porterfield, P., Lee, J., Dixon, D., Lounsbury, K., Pesut, B., Roberts, D., Tayler, C., Voth, J., & Stajduhar, K. (2016). Conceptual foundations of a palliative approach: A knowledge synthesis. BMC Palliative Care, 15(5). doi: 10.1186/s1290401600769. Available: http://www.biomedcentral.com/1472-684X/15/5

Congratulations to the iPANEL team!

Love Your Life to Death

Yvonne Heath is a wife, mother to three amazing children and a nurse since 1988. She has worked in ten different hospitals in Ontario, New York, Louisiana and Texas, and has nursed in the emergency room, long term care, medical and surgical units, intensive care in chemotherapy and hospice. Yvonne has witnessed a great deal of suffering, pain and death phobia, and felt it in her own life. She is the author of Love Your Life to Death.

To those who want to live well…and die well.

What if we planned our lives well instead of just going through the motions? What if we planned our end of life—long before a diagnosis, long before we were dying? What if we learned about grief before the grief so that we could be better prepared for it? Imagine…

We have come a long way with palliative care and hospice, but have a long way to go. Many still cling to quantity of life at the expense of quality of life. Over the years, I have had many patients tell me they are ready to die but their families are not ready to let them go.

Death phobia causes excessive suffering for the dying individual and for those who are left behind to pick up the broken pieces. Parents often do not want to expose their children to death, creating death phobic adults in the future. How then, can we build resilience? How can we learn that our broken hearts will heal?

While I love being a nurse, I have always felt I also had another purpose – to help more people than I could reach in my day-to-day work. My mission now is to bring death out of the darkness and into our conversations, to help eliminate excessive suffering when grief and death do arrive.

When we learn to talk about and plan our life and death, something amazing happens. We live more fully and suffer less at the end of our lives. And so do our loved ones.

I am devoted to helping people learn to live well and die well, and to create compassionate communities. It takes a village to care for the ill, the caregiver, the dying and the bereaved. We need to take good care of each other, but we must start with taking care of ourselves.

I have learned from those who have grieved deeply, care for the dying, from patients and those who have a story to share. As an author and speaker, I share these beautiful stories, as well as my own experience.

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.

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.