Background

CarerHelp (carerhelp.com.au) provides online information and resources to Australians caring for someone with an advanced disease. Launched in 2019, over 42,000 people have visited the website to connect with information on diverse carer topics and pathway options from care after diagnosis and across serious illness, though to caring when someone is dying and bereavement. 

 Aims

The aim of this presentation is to explore the most frequently viewed information and resources on the website, thereby improving our understanding of the key information needs of CarerHelp users and to help drive ongoing redevelopment, redesign and diversifications of resources to better reach the needs of carers.  

Methods

Web statistics provide information on which CarerHelp webpages, topics, resources and videos are the most popular with users. A pop-up on the website collects data on who is using the site and what they are looking for.

Results

Visitors most commonly sought information on imminent death and the days following death. Information sought included caring for the dying person, recognising dying, and what to do immediately after the death. Similar patterns were seen in video use.  Of the 125 CarerHelp users completing the online pop-up evaluation, over half were health professionals (n=71) looking for information to give their families or family members who are caring for someone with advanced disease (n=34).  

Conclusions

Usage patterns support the importance of information on caring for someone who is imminently dying.  Post release evaluation can assist in understanding the needs of users and identify future directions for resource development. Thus, targeted implementation activities will continue to assess the usefulness of the resources in practice. 

 

Background: Without objective screening for risk of death, the palliative care needs of older patients near the end of life may be unrecognised and unmet. Aim: This study aimed to estimate the usefulness of the Criteria for Screening and Triaging to Appropriate aLternative care (CriSTAL) tool in determining older patients’ risk of death within 3-months after initial hospital admission. Methods: A prospective cohort study of 235 patients aged 70+ years, who presented to two rural emergency departments in two adjacent Australian states, was utilised. The ‘risk of death’ of each patient was screened with the CriSTAL prognostic tool. Their 3-month follow-up outcomes were assessed through telephone interviews and a clinical record review. Findings: A CriSTAL cut-off score of more than 7 yielded a sensitivity of 80.7% and specificity of 70.81% for a 3-month risk of death. Palliative care services were only used by 31% of the deceased in their last trimester of life. Conclusion: Prognostic tools provide a viable means of identifying individuals with a poor prognosis. Identification can trigger an earlier referral to palliative care, which will benefit the patient's wellbeing and quality of life.


Project published in International Journal of Palliative Nursing February edition (29: 2)

Further to published extract, the following findings will also be discussed:

-Only 2% of survivors who were assessed as prognostically vulnerable were seen by a dedicated palliative care service in the 3 months
-Over 60% of survivors assessed as prognostically vulnerable were assessed as clinically frail (5=+ on Rockwood Clinical Frailty Score)
-Survivors assessed as prognostically vulnerable also self-reported statistically significant poor quality of life when compared to survivors not deemed as prognostically vulnerable (42% compared to 23% respectively P=0.013)
-50% of the deceased had a diagnosis of Advanced Malignancy, while 25% Congestive cardiac failure and 30% COPD.

Discussion points:
-Importance of objective assessment of prognostic vulnerability.
-Poor uptake of palliative care services in inpatient setting for those that are dying and prognostically vulnerable.
-With our focus on early referral and supporting living aspects of life limiting illness (which are noble and just causes), are we missing elements of our core business, which is supporting the dying?  Are we resourced adequately enough to do both?


Pitman, S; Mason, N; Cardona, M; Lewis, E; O'Shea, M; Flood, J; Kirk, M; Seymour, J & Duncan, A 2023; "Triggering palliative care referrals through the identification of poor prognosis in older patients presented to emergency departments in rural Australia", International Journal of Palliative Nursing, 29  (2), https://doi.org/10.12968/ijpn.2023.29.2.83

From 1 January 2023, Voluntary Assisted Dying (VAD) became available to all Queenslanders who meet the criteria. This heralded a change of practice for health services across Queensland, both in the public and private sectors.

In this presentation, the presenter, a Palliative Care Nurse Practitioner, will discuss the process undertaken for the implementation of VAD in a large, not for profit, faith-based organisation. Encompassing residential aged care, specialist disability accommodation, housing and homelessness services, community services and both an adult and paediatric hospice, the organisation is diverse.  Drawing on her palliative care experience the presenter will discuss the successes and challenges of implementing the new process and model of care and will discuss the first 6 months of VAD in Queensland to share learnings.

The presenter will touch upon the juxtaposition of working in both the VAD and Palliative Care space and share personal reflections with the aim to create a conversation within the palliative care space.

 

BACKGROUND: 

Telehealth services during the COVID 19 pandemic were used as an alternative method of health care delivery. At the height of the COVID 19 pandemic, Renal Supportive Care (RSC) was one of the outpatient services that utilised telecommunication technology to deliver uninterrupted and continuous care to patients who had advanced chronic kidney disease. The COVID 19 pandemic necessitated urgent adoption of telehealth and there was little time to gauge patients’ readiness for this type of care delivery.  Despite the increasing availability of telehealth video consultations, older adults have faced challenges in getting care through this type of care delivery. 

PURPOSE: 

To demonstrate the barriers and challenges encountered in using telehealth as an adjunct method to deliver health service and its effect on patient outcomes. 

METHODS: 

 Voluntary surveys were distributed to RSC patients. Semi structured interviews were conducted with participants who consented. Patient reported experience measures (PREMs)were evaluated. 

CONCLUSION: 

 It was found that significant barriers exist for older adults in connecting with their health care team through telehealth, particularly through video visits. The barriers identified were difficulties with technology and using video platforms, hearing problems, living alone, language barriers, internet connectivity and lack of desire to see the health professionals virtually.  Finding practical and achievable ways to address the digital divide which is common in older populations is crucial in ensuring quality and equity of health care.  Despite the challenges, patients and carers reported overall satisfaction with the quality care that they received from RSC. 

 Background: 

Along with the rest of the healthcare sector, there was a rise in the uptake of telehealth services in palliative care in response to Covid-19. The urgent need to protect patients and staff also necessitated a move away from face-to-face interactions. There was widespread concern from health professionals, about the possible disruption to rapport when using telehealth with patients and families at home with little evidence available at the time. 

Aim:
This PhD study aimed to explore patient, family, and palliative care professionals’ perspectives of rapport in telehealth encounters in the community.
 

Methods:
An Interpretive Description methodology was used with the Theory of Human Relatedness providing the theoretical framework. Data was gathered in two phases:
 

 Data was analysed using Reflexive Thematic Analysis.
 

Results 

Key themes were:
 

Alongside these findings an adapted “Model of rapport and relatedness”  was developed which highlights participants experiences of interactions characterised as Connectedness, Disconnectedness, and Pseudo-rapport. 

Conclusions

The implications for practice are that rapport is teachable and achievable via telehealth, and that reflective practice, and rapport specific telehealth education and training are recommended. 

This research explored what was important for the person and family receiving care, and what was of importance to the health professionals providing care at the end-of-life. Using a phenomenological methodology, this research incorporated unstructured audio taped interviews with people receiving care, their family members, the bereaved, and members of the interprofessional teams delivering care.  The process of being open to the direction participants wanted to journey through this research invited a co-constructed method of engagement.  

The outcome of the research revealed the lived experience of silence in end-of-life care, incorporating the themes:

 

Silence is a complex phenomenon, with implications on how to ‘be with’ another in the final acts of living.  It is a powerful and helpful form of communication and compassionate, supportive companionship.  It is person-centred and can convey meaning when there are no easy answers.  For health care professionals to be effective with the art and science of silence we must be comfortable in silence ourselves.  Our caring intention begins with the self and ripples out to colleagues and supports compassionate communities of care.

 

This research reconnected with the history of caring for the dying in our community and with some of the ancient wisdoms about silence, offering insights from the past that may support the path to our future. 

Background: While traditional palliative services have cared for people dying of a malignancy, there has been a developing focus on the end-of-life needs of people dying from chronic illness. Models of care to support quality-of-life differ, but all aim to enhance an individual’s quality-of-life. Telehealth has proven beneficial in consultations with this client group and has come into its own consequential to the COVID pandemic. 

Aim: To examine the impact of telehealth services on quality-of-life of those with end-stage chronic illness.

Method: All those referred for palliative care with a diagnosis of chronic illness, were offered telehealth support via a program called Palcare Go, consisting of routine and urgent video calls with a palliative care specialist focusing on symptom management and end-of-life planning. A quality-of-life questionnaire (Rand 36-item Health Survey 1.0) was administered when commencing the program and repeated three and six months later.

Results: 31 people were enrolled during the trial period. Twenty returned sets of questionnaires indicated health being fair or poor for all when completing the initial questionnaire, and most reported everyday activities were very limited by their health status. Subsequent questionaries reported few improvements. But improvements in social functioning scores were seen across questionnaires, in terms of physical and emotional health interfering with social activities. Perceived changes in health over the time of the questionnaires was minimal. Favourable qualitative responses at the end of the survey indicated satisfaction with the support received, as well as the ability to control engagement with their own health issues.

Discussion & implications for practice: While those who are dying with chronic illness report few health improvements from using the program, improvements in social functioning were seen.  Telehealth seems a supportive option, particularly in empowering individuals to maintain control over their own healthcare, including interventions.