Do we really need a web-based guide to discuss end-of-life values and treatment preferences?

Do we really need a web-based guide to discuss end-of-life values and treatment preferences?

An article written by Magnolia Cardona

The answer is yes because personal values and preferences are not systematically registered in clinical records. In the past couple of decades, it has become increasingly clear that patients are claiming their autonomy to be involved in decision making. No longer do they want to leave it all to their doctors to decide what’s best for them. Our previous survey of older members of the Australian public confirmed that they were eager to know about their prognosis if they had less than a year to live and preferred to be actively involved in treatment decisions. [1] Yet, these conversations about what level of management would be acceptable to people with progressive chronic illness are often delayed until it is too late. Despite feeling reasonably confident in their communication skills, the clinician’s main reasons to not initiate these conversations are the uncertainty of time to death, lack of time to hold an in-depth discussion that involves psychosocial support, family requests to not take hope away from patients, and feeling that patients are not informed enough about the decision-making process.

To alleviate the concerns about prognostic uncertainty we had previously developed a rapid screening tool to identify people with risk factors for short-term death. [2] It was important to make this a simple instrument, so trainees and junior clinicians could lead the identification of the risk flags if specialists were too busy. In this new study, in collaboration with older people with chronic illness, informal caregivers, and clinicians, we developed a conversation guide with key questions that investigated patient values and preferences and integrated them with their risk of death. Software engineers turned the risk-of-death tool and questionnaires for chronic kidney disease and dementia treatment choices into a web-based interface. We called it CHAT (Communicating Health Alternatives Tool). Having access to this information via a secure web interface means documentation can be saved, and the conversation can be held in stages and printed for future reference, or modified at a later date if patients change their decision. The tool does not have graphics, prognostic tables, videos, or any animations, as hospitalised older patients told us they just wanted the direct verbal news and a copy of the discussion to take home for reference. [3] We listened.

Our testing yielded good acceptability by patients about the ‘ground-breaking’ idea of being asked for their perspective on their own dying care plans. Nurses, who are well placed to initiate these conversations given their more in-depth knowledge of patients and their families, perceived CHAT as user-friendly and of appropriate duration for use in general practice or hospital wards, not in emergency departments. The next step would be to acquire funding for its implementation into routine care, as the tool is compatible with the electronic health record. CHAT can offer a systematic approach to patient-centered care, preparation for decision making, and encouragement to embrace the concept of a good death in routine health services.

The idea of a conversation guide is not to instruct clinicians on what to say, or what treatments to recommend, but to give them and their clinical assistants confidence in starting the honest discussion journey with patients, and a road map for preparing for a decision before patients lose capacity. The integrated suite suggests what aspects to highlight for patients who might be unaware that some treatments choices may be non-beneficial at the final stages of illness. For some, the palliative care pathway might be an appropriate alternative aligned with their wishes.

 

You can read more about how we developed and tested the CHAT app

Cardona M, Lewis ET, Bannach-Brown A, Ip G, Tan J, Koreshe E et al. Development and preliminary usability testing of an electronic conversation guide incorporating patient values and prognostic information in preparation for older people's decision-making near the end of life. Internet Interventions. 2023; 33 100643, 100643. doi: 10.1016/j.invent.2023.100643
 

Watch this video to see how the CHAT tool works
 

We are indebted to all participants past and present for their contributions to improving the inevitable experience of dying for patients, treating clinicians, caregivers, and families.

 

Authors:

Magnolia Cardona, PhD, MPH, MBBS

Associate Professor of Implementation Science

School of Psychology, The University of Queensland

& advocate for the reduction of non-beneficial treatments

 


References

  1. Cardona M, Lewis E, Shanmugam S et al. Dissonance on perceptions of end-of-life needs between health-care providers and members of the public: Quantitative cross-sectional surveys. Australas J Ageing. 2019 Sep;38(3):e75-e84.
     
  2. Cardona-Morrell M, Hillman K. Development of a tool for defining and identifying the dying patient in hospital: Criteria for Screening and Triaging to Appropriate aLternative care (CriSTAL). BMJ Support Palliat Care. 2015 Mar;5(1):78-90.
     
  3. Lewis ET, Hammill K, Culbert R et al. Delivering prognostic news to older people with chronic disease: What format preference and level of involvement in decision making? A hospital survey. Healthcare (Basel). 2023 Feb 3;11(3):444.

 

 

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1 comments on article "Do we really need a web-based guide to discuss end-of-life values and treatment preferences?"

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Anne

Would this tool be able to be used by allied health clinicians visiting older people in their homes, after having identified they might be at such a stage in their life?

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The views and opinions expressed in Palliative Perspectives are those of the authors and are not necessarily supported by CareSearch, Flinders University and/or the Australian Government Department of Health and Aged Care.