The International Journal of Whole Person Care
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Sunset haematology: improving the end-of-life journey for patients and caregivers, in patients with haematologic malignancies
Get PDFBACKGROUND AND AIM
Haematologic Malignancies (HM) are diverse diseases with differing illness trajectories and therapeutic pathways. Unfortunately HM patients may rapidly and unexpectedly clinically deteriorate, resulting in suboptimal engagement of palliative and end-of-life (EOL) care. Compared to patients with solid tumours, HM patients have many different factors affecting their end-of-life (EOL) journey. Uniquely, a subset of HM patients with bone marrow failure (BMF) can be supported for significant, but highly variable, periods of time with red blood cell transfusions (RBCT), platelet transfusions (PT) and prophylactic antibiotics. Availability of chronic RBCTs and PTs make HM patients with BMF similar to elderly and poor prognosis patients with end stage kidney disease (ESKD). Multidisciplinary Palliative Supportive Care programs have been shown to be effective for these EKSD patients and may serve as supportive care models for EOL journey in HM patients. This project is a pilot study aiming to provide a template for management of EOL for patients with HM with BMF, and their care-givers.
METHODS
Three components are being developed: 1) Survey of patient opinions around treatment decision-making. 2) Analyses of the impact of patient, disease and treatment factors on the probability of survival from start of PT, to inform patients. 3) Collaborative involvement between Haematology and Palliative Care staff involved in the local ESKD program, to develop a template for earlier EOL pathway planning in HM patients.
CONCLUSION
Progress of work to date will be presented including preliminary findings and next steps
ICU Bridge Program: Working with staff towards no family members feeling like "the elephant in the room"
Get PDFThe intensive care unit (ICU) provides specialized care to critically ill patients. Given the traumatic nature of critical illness and its treatments, up to 75% of family members of ICU decedents and survivors experience long-term psychological consequences, termed post-intensive care syndrome family (PICS-F). Anxiety, PTSD, and depression are common manifestations that significantly impact families’ quality of life and the recovery of those dependent on their caregiving. Although PICS-F can be mitigated by engagement with ICU staff, critical care workers are at risk of burnout and requesting closer liaisons with families is unfeasible. Bridging visitors and the ICU health care team would ensure that family members never feel like “the elephant in the room”.The ICU Bridge Program (ICUBP) is a unique volunteering and shadowing initiative designed and run by university students. Bridge Program volunteers are assigned to hospital ICUs in Montreal to be the first point of contact for visitors. This program addresses PICS-F by humanizing the ICU experience through compassionate human contact, continuous support, and an open line of communication. The diverse applicants are carefully selected and trained to maximize soft skills, such as emotional intelligence and active listening, which ensures that families feel welcome and understood in this tense environment. Furthermore, the ICUBP’s self-sufficient structure off-loads administrative responsibilities from resource-constrained hospitals and makes its implementation feasible and cost-efficient. By continuously monitoring its effect on patients, families, and staff, the ICUBP aims to improve and expand its contribution to whole-person care in the ICU
Ethical challenges for children undergoing surgery: Evaluation of graduate nursing students' learning
Get PDFBackground
Multiple barriers can impede the holistic care of children and their meaningful involvement in their healthcare in the context of surgery. These include lack of clinician knowledge of the ethical concerns impacting children and scarce educational resources. Our team created an open-access training module (https://childsxethics.net) to enhance clinicians’ understanding of ethical challenges for children undergoing surgery. Objective
To evaluate the level of Bloom’s Taxonomy cognitive, affective, and psychomotor learning reached by graduate nursing students after completing the module. Methods
A qualitative descriptive study was conducted. Data sources comprised of participants’ course assignments. Data were analysed inductively and deductively using Bloom’s Taxonomy and the Childhood Ethics Framework. Results
Nineteen participants wrote online reflections and peer responses. Two subgroups completed group assignments. The module and associated class assignments successfully promoted high levels of cognitive and affective learning of ethical challenges impacting children undergoing surgery. The type of assignment influenced participants’ level of learning and achievement of learning objectives. Cognitive and affective learning processes were enhanced when integrating reflections and fostering dialogue/interaction among peer learners. Implications
Study findings will be used to improve the module. Future iterations will include collaborations with international clinicians to enhance the global relevance of the module contents, which will be evaluated with other clinicians/trainees. Providing educational resources for clinicians on ethical challenges in children’s surgery will help facilitate the recognition of children as active moral agents and improve their surgical experiences by promoting holistic patient care
Narrative Medicine: Reigniting our sense of purpose as clinicians and protecting against depersonalization and burnout
Get PDFWhole Person Care in philanthropy - healing & giving
Get PDFStatic reimbursement, rising expenses and decreasing margins for hospice and palliative care programs in the US, limit funding for innovative and creative education, care-giver well-being and resilience efforts and workforce development. Whole Person Care in philanthropy can lead to healing not only of grateful patients, families and friends but can also be a source of healing, connectiveness and meaning for donors, board members, foundations and the community.
This presentation will share leadership practices which engage grateful patients, families, prospective donors, board members, foundations and the community to raise significant funds for innovative education and program development. Conversely, the presentation will share innovative education and program development which engages and excites patients, families, donors, board members, foundations and the community to give significant philanthropic gifts. A small but excellent hospice foundation staff (5 people) with the help and support of the clinical leadership team raised over 4 million dollars in 2022 for a community-based hospice serving over 300 patients/day and community-based palliative programs serving over 600 patients/day, both adults and children
Challenges and opportunities of relationship centred care in health care settings. My journey and the evolution of my approach
Get PDFUnderstanding the complexities of relating in a health care context invites practitioners to anticipate and identify challenges and opportunities as they arise in their practice. This experiential paper will attempt to explore and illustrate some of the complexities of adopting a relationship centred approach in healthcare settings, from the perspective of one practitioner.
This paper will consider how the organisational culture can impact on the practitioners ability to interact with patients. In this context the influence of the organisational culture with its emphasis on task, diagnosis and treatment of disease, functioned to undermine this practitioners capacity to relate and take up a relationship centred approach.
This paper, with reference to clinical material, will highlight the tension that exists between task and relationship in healthcare settings. Special reference will be made to how in some situations the wish to relate interrupted the task focused work, causing co nfusion and great challenge for the practitioner . The invitation to adopt relationship centred practice , while still attending to the task in hand restored the practitioners belief in the medical consultation’s potential to create a receptive , responsive and relationship centred space .
Finally, this paper will conclude by considering how to navigate this complex context and to achieve a balance which includes relationship centred care , using these opportunities as they arise to ensure optimum health care outcomes for both practitioner and patients
Financial incentives as an unexpected path to whole person care
Get PDFA physician's exploration of substance use disorder by re-defining and expanding the definition of serious illness told through the lens of the patient-physician relationship. 
Considering life through death - introduction to lessons of life
Get PDFI am a palliative care physician for 30 years. And I have been teaching " Lessons of Life " to medical students and elementary, junior high, and high school students for 30 years. Based on the words left behind by the deceased patient, these are classes to think about life through death. I would like to introduce some of the lectures at this conference.
When I took care of a 23-year-old female terminal cancer patient, her pain of bone metastasis, which could not be removed, was relieved by a wedding ceremony. I was taught that pain is relieved not by drugs but by supporting the hopes and dreams of patients. A 21-year-old woman with cancer of unknown primary cancer, who had not been told of her prognosis, realized that she was dying and left a letter for her mother. She wrote, "I am glad I was born as your daughter” with gratitude. A 17-year-old high school male student, who had a brain tumor, left a diary. In the diary, he wrote, "If I were to die tomorrow, what would I do today? All I can do now is to live my life to death as I am.”An 18-year-old woman, battling rhabdomyosarcoma,said,“Walking, talking, seeing, hearing, laughing, crying, and living. You may think it’s normal as someone who always takes it for granted, but that’s not the case.” Through the words and actions left behind by my patients, I learn that we are living a day that is irreplaceable.
 
The art and skills of compassion in practice
Get PDFEmpathy, or the ability to “feel” another person’s experience, evokes strong emotions and activates the neural pathways in the pain region of the brain. Compassion is empathy combined with purposeful action to relieve suffering and impacts the brain’s reward centres.
What are the outward impacts of compassion? Compassion is human connection, reciprocity, feeling cared for and caring for another. It reduces stress and cortisol for the receiver and giver. It reduces suffering and impacts all areas of the Quadruple Aim. Yet nearly half of the population of America and 63% of providers believe that the health system is not compassionate.How do you build “compassion skills”? Being a compassionate clinician is not about knowledge, but the quality of communication and relational interactions. Many hold the belief that this ability is naturally acquired or inherent in medical practice, but this ability is technical, rooted in capabilities, intentional, and requires continuous practice and refinement. Healthcare practitioners are at a disadvantage: the rigours clinical learning and the perceived time pressures of practice take precedent, limiting the opportunity for refinement and practice of these interpersonal communication skills.
Looking to bridge the gap on continuous professional development and learning from other sectors, the Royal College of Physicians and Surgeons of Canada has been considering approaches for practice improvement in compassion. To make compassion skills tangible, the presenters offered a “coaching skills” program for physicians. Early evidence is pointing towards the positive impacts of this type of communication skills training on the therapeutic alliance