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.

 

 

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

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.