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

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.

 

New Competency Profile for Licensed Practical Nurses in Alberta

I am deeeeelighted to share that the College of Licensed Practical Nurses of Alberta has launched the 2015 updated Competency Profile for Licensed Practical Nurses!

And most exciting for me is the section on Palliative Care!

Have a look at the new Competency Profile for Licensed Practical Nurses, in particular (document) pages 142- 146 for the Palliative Care Profile. I was honoured to be asked to provide input in the development of these competencies, and am thrilled with the outcome of this document. These are the most specific palliative care competencies for LPN/RPN practice that I know of.

Why are palliative care competencies for Licensed Practical Nurses important?

When I started writing our new text for Practical Nurses (to be published in 2016), I looked for any competencies for Practical Nurses. I looked at the CASN competencies for Registered Nurses. I looked at the National education standards for “Unregulated Care Providers”, the “Ontario Personal Support Workers Vocational Learning Outcomes”, the European Interprofessional Competencies… but did not have a set of competencies that focused on the role of the Practical Nurse.

It is important to have competencies to use when developing and offering education. It is helpful to have competencies to standardize education within a province and across the country. As an individual, it is helpful to have competencies to help identify areas to learn and grown.

 

If I have missed competencies, and if you know of other competencies for Practical Nurses, or Vocational Nurses (as they are sometimes referred to in the USA), please leave a comment below, and/or email me.