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

“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.

Music Therapy in Hospice and Palliative Care | Your Personal Soundtrack

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

Exercises

Your Personal Soundtrack

With a piece of paper by your side, or on your computer, construct the following chart. Make one age category per page. That way, if you need to use more paper—say for your teen years – you can do that and not get the age groups mixed up. That’s very important actually as you want to recognize when you were listening to what music.

 

Age The Music You Listened To During this Time Associated Memories
Birth to Grade School
Grade School
Adolescence
Adulthood
Later Life

 

Identifying Preferences

Your preferences are your greatest triggers to snap you into the mood you want to be in but first we have to identify our preferences. In order to do that we have several considerations: style preferences, tempo preferences and timbre preferences.

Style preferences are often one of the easiest markers of music preferences. This is the kind of music we like. From classical to country, there are definite styles that we gravitate towards. It is fun as well as important to recognize what your style preference are, but always leave yourself open to surprises. The activity forms on www.tuneintomusic.ca will help you begin to address the styles you most gravitate towards.

Your tempo preferences vary more often each day. The tempo of a song we like in the morning is often different than the speed of songs we like in the afternoon or just before we go to bed. When selecting a song for a party we often think of tempo first and select what we perceive is upbeat or relaxing depending the mood we want to evoke.

Finally there is your timbre preferences. Every instrument or voice carries with it its’ unique timbre. All timbres attract or repel the person who hears it.

Once you have addressed your music preferences, perhaps even documenting them you may begin to see patterns to your day, week, month or experiences.

So as you tune in to your music, may you find the peace, the joy, the laughter, and even sometimes the tears, that I have found with my music.

 

The McDonald Family

The McDonald family thought they were choosing just the right music until they heard it. This wonderful family spent every Christmas together. When the matriarch of the family was in the hospital, the entire family came to visit. Sharon McDonald, the head of the family, had always been close to each of her four children. Even after they were grown they all continued to live near each other and visited regularly.

Now in the hospital for Christmas, Sharon always had at least one family member at her side, if not two. When you walked past their door, the room was regularly filled with animated voices and laughter. I first met them a week before Christmas. I was walking to another patient’s room when Sharon’s son ran up to me and asked if I would come into their room for a moment. As I entered I was greeted by four other smiling faces. Each person had a bit of red in their hair, and it was easy to tell they were related. In the centre was Sharon. She lifted her hands and welcomed me with a two handed shake.

Then she said, “Christmas is a very important time for our family. We would be grateful if you would sing some of our favourite songs.”

I agreed. Before I started everyone was lively and cheerful. I sat down amidst the group and pulled out my guitar. Sharon turned to me and said, “Jennifer, I think we need a song that we won’t cry to. How about ‘Jingle Bells’?”

I played my liveliest strum and opened into the first verse, “Dashing through the snow,” I didn’t even make it to the chorus when the entire room stopped singing and started crying. The Christmas music, although the most suitable choice, was reminding the family more about what they wouldn’t have this Christmas (their mom at home) than what they did have. I slowed the music down and was about to stop when Sharon started laughing. And soon everyone else was laughing with her. “I guess it doesn’t matter what we sing I guess we are needing the music to help us cry.”

Music can positively and negatively trigger our feelings and memories. When we choose our music intentionally, amazing things can happen. Our choices are critical when finding the right music for the right moment and for the right purpose. However sometimes, as Sharon recognized, the music can help you understand what you truly need in a moment more than anything else can.

Jennifer Buchanan, MTA is the owner of JB Music Therapy and Author of this story and exercise found in her book ‘Tune In: use music intentionally to curb stress, boost morale and restore health.’  Jennifer is a popular keynote speaker at healthcare and education conferences.