Hello and welcome to December!
In the past months, summer and camping came to an end and the 2nd wave of the COVID-19 pandemic flourished. We are being asked to commit once more to physically distancing ourselves from those outside of our households. This is a difficult time that we all share. Globally people are preparing for December celebrations, including Christmas, Hanukkah, Yule (winter solstice) and Kwanzaa, in ways that honour the celebration but also follow the COVID restrictions. This year’s festivities will be quite different and will be coloured by the losses of not being able to gather with family and friends to celebrate, and the losses of our loved ones in the past year. Together we can get through this. In the words of Dr. Bonnie Henry, be kind, be calm, be safe.
We wish you and your loved ones peace and good health through the holiday season and in the new year.
In keeping with the season, I would like to share some of the good experiences that came my way this year and to offer you these following resources.
Grief and Bereavement Resources
If you or someone you know is finding the holidays difficult, or more difficult this year, know that there is support for you. In BC, we are fortunate to have the BC Bereavement Helpline. Each province has their own resources – find them using the search terms “grief support [your province].
- For anyone experiencing loss and grief, Virtual Hospice offers user identified discussion forums for anyone dealing with loss and grief where you can meet with others and share experiences. They also provide information to help you identify what you are experiencing.
- For health care providers, check these resources to support yourself as you support everyone else during COVID.
Working with FNHA to Support Family After Sudden Death
We know it is difficult when a loved one dies and that it is a more difficult experience for the family when the person’s death is sudden. Working with First Nation Health Authority in BC, I was honoured to develop webinars for nurses and health care assistants as they support people in their end-of-life journey.
Using the Wellness Wheel to Learn About the End-of-Life Journey
In collaboration with Darien Thira, and in response to the opioid crisis, we offer and will offer the following webinars.
Colonization and Sudden Death: First Response and Critical Incident Checklist
Trauma Braid and a Three Step Approach to Support Family and Community Wellness (December 9, 2021)
Walking Four Traditional Cultural Pathways of Health Grieving with the Bereaved (January 13,2021)
You are invited to listen to any or all these webinars from this website. We thank FNHA and Darien for making these wonderful presentations available.
NEW Online Program for PSWs/HCAs
Canadian Palliative Care Education Program for Personal Support Workers – Online Program
We have launched an exciting new education option for Health Care Assistants / Personal Support Workers, to support HCAs/PSWs to build skills to feel confident and competent when supporting people to live and to die. The pilot class began this week with more than fifty HCAs and community members from across British Columbia.
Contact us if you are interested and want to know more!
Supporting HCAs During COVID and Beyond
This project’s goal was to support Health Care Assistants (HCAs, also known as Personal Support Workers) across BC dealing with COVID stresses. I was honoured to work with the BC Centre for Palliative Care (BCCPC), where we met with HCAs, heard their fears and concerns, as well as a few of their stories of caring during COVID. The result was a series of interactive webinars titled, “Kitchen Table Chats with Kath and Misha” with presentations by either Misha Butot or myself, followed with time for HCAs to talk about their work and stresses of caring during COVID. I invite you to listen to the webinar recordings on the following topics:
- Social Connection in a Time of Physical Distancing
- Adapting Rituals of Grief for Growth
- Self Reflection to Support Grief for Growth
- Fear and Anxiety – Caring for People During COVID.
Stories of the Heart
From the HCA stories described above, Kathleen Yue from BCCPC produced a video titled, “Stories of the Heart.” The stories are a celebration of the work of HCAs, and are inspiring and educational. The full video as well as short clips of less than 30 seconds are available.
Preparing PSWs to Meet the Challenges Identified in the Ontario LTC Report
This is an important report with information that can help all health care providers and decisions makers to prepare for the coming years. This key paper from the Ontario Ministry of Long-Term Care, published in July 2020, reports on staffing in long term care. Their report identified the multiple challenges experienced daily by PSWs and indicated that one reason for staffing shortages was the high rate of PSWs leaving their careers. Significant recommendations included ways to help support and retain PSWs in the workforce, including the need to integrate PSWs as full members of the health care team.
We were excited by this report because it echos the challenges we have heard from PSWs/HCAs across the country over the past years. If was a great coincidence that the new PSW text, which identifies ways for PSWs to meet the challenges identified in the Ontario report, was released the same month!
I hope you and your colleagues will read the report or the executive summary, as a way to stimulate conversations on how to prepare, engage and retain PSWs/HCAs in the workforce.
NEW Textbook and Workbook for PSWs/HCAs
Second Edition, Integrating a Palliative Approach: Essentials for Personal Support Workers
The biggest accomplishment for LDM this year was the launch of the Second edition of the PSW text, Integrating a Palliative Approach: Essentials for Personal Support Workers. This new edition includes new content to help PSWs/HCAs and their educators to address current issues in health care. You can watch the launch video that highlights the new features in the text and companion resources.
The text, workbook and Instructor resources were updated, including new teaching decks (Powerpoints). Plus all resources are available online in the virtual classroom.
If you’re looking for excellent readable options for teaching palliative care, then take a close look at these!
One of the common symptoms experienced by people with COVID is difficulty breathing. We offered and continue to offer videos and textbook excerpts on how to support a person experiencing breathlessness related to COVID free to the community. These videos may be of interest to HCAs/PSWs/ other health care providers and family members.
We often think of writing as a way to present our ideas to others, to answer questions, and to illustrate what we know. However, Laurel Richardson suggests that she writes in order to LEARN!
I write because I want to find something out. I write in order to learn something that I didn’t know before I wrote it. I was taught, however, as perhaps you were, too, not to write until I knew what I wanted to say, until my points were organized and outlined.
Reflective writing helps students to become more aware of their “beliefs and baggage” – personal beliefs, their issues, values, preferences and fears, about dying, working with the dying, and their history with dying.
Student might find that reflective writing can help the writer bridge the inner and outer world, and connect new knowledge with practice. They might find that their writing helps to create new meaning and results in personal and professional growth.
Students may be new to caregiving and may be concerned that they have “nothing to write”, that they have “no work experience” in this area.
Students are invited to write reflectively. Naomi Goldberg (Writing Down the Bones) provides the following guidelines for writing practice, that can be adapted here for reflective writing:
- Keep your hand moving
- Lose control
- Be specific
- Quell the critic (silence the critic)
- Be easy about spelling or grammar
- Feel free to write junk
- Go for the jugular
Instructors will need to help students understand that this is not about right or wrong! In fact, inform and remind them that reflective writings are not marked for content, but only for participation. Students will need to adjust their mind set, to simply look at the statement or the question, and just write whatever comes to their mind. If they want to take a notebook, they might find that writing without stopping for ten minutes provides more opportunity for issues and ideas to come forward than writing for just a few lines.
Instructors can go through the Workbook exercises with the learners and brainstorm reflective responses to the different questions posed. Some questions such as, “list what you think would be a good death, a bad death for you” student respond to easily. They may have experience with a loved one dying, a pet dying, or their experiences may be limited to death as they have seen it portrayed in the media or how they have imagined dying might be. Any or all of their thoughts would be more than appropriate to write. “I don’t know” and “I have never thought of it” are reasonable answers. I would then ask the student to follow Naomi Goldbergs directions for writing, and see if any other ideas come forward.
Students may request permission to write their responses in their native language. This would be fine.
As students reflect, it is hoped that they will become more aware of themselves, their concerns, fears, issues, values about dying, death, caregiving etc.. With the increased awareness of themselves, they may be better able to focus their care on “the other”.
An image that may be helpful: airport and many suitcases. If you know which one is yours, you can pick up your own baggage. But if you are not sure which baggage is yours, and which belongs to someone else, you may mix up the bags. The analogy is, that if you are not aware of your baggage, you can trip over it, while trying to care for someone else with different baggage and different needs.
Please note: Students may have much experience with death, loss and grief. For a person who has immigrated to Canada, it may be that their experiences with death and dying occured in their home country before immigrating to Canada. These may be extremely painful experiences and be painful for the person to recall and difficult to explore. Instructors can support students by offering support as they work through their experiences as they prepare to care for people who are dying in Canada.
University of Birmingham offers a “short guide” to reflective writing here that details different methods for developing a reflective writing practice. I encourage you to read it and share with your students as a way to help them consider the various methods of tapping in to their beliefs and baggage.
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
- Mandates upstream orientation of palliative care principles to meet the needs of patients, residents, clients and families;
- Requires adaptation of palliative care knowledge and expertise to different patient populations and their unique disease profiles; and
- 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.