Unpredictable Disease Trajectory Research Articles

Perspectives of Patients With Relapsed and Refractory Acute Myeloid Leukemia and High-Risk Myelodysplastic Syndrome on Patient-Clinician Communication About Prognosis and the Future.

Patients with acute myeloid leukemia (AML) and high-risk myelodysplastic syndrome (MDS) experience unpredictable disease trajectories and high prognostic uncertainty, which serve as barriers to patient-clinician communication about prognosis and their values and preferences for the future in the event of worsening health. Little is known about patients' day-to-day lived experiences and how this shapes their willingness to engage in such conversations. To explore participant perspectives on living with their illness and patient-clinician communication about prognosis and the future. This is a qualitative study using semi-structured interviews. Patients with relapsed and refractory (R/R) AML and high-risk MDS from a northeastern U.S. cancer center. Interviews were transcribed verbatim and thematic analysis was used to generate findings. Of the 14 participants, the mean age was 66 years, 79% were men, 93% were White, married, and had AML. The overarching theme that describes the experience was "Taking One Day at a Time" in a Fog of Uncertainty. Uncertainty was a universal perception related to the challenges for clinicians to predict prognosis. To cope with uncertainty, most participants tried to focus on the present and maintain normality in everyday life. Participants valued encouragement and positivity in patient-clinician communication, however, the majority were not ready to discuss prognosis and the future in the event of worsening health. Of note, 7 of 14 participants died within three months after the interview. These data describe a unique perspective of patients with R/R AML and high-risk MDS that clinicians could use to enhance communication strategies.

Improving palliative and supportive care in advanced cirrhosis: the HepatoCare model of integrated collaborative care.

Patients with advanced cirrhosis experience an unpredictable disease trajectory but are infrequently referred to palliative care (PC) services and rarely undertake advance care planning (ACP). We assessed whether a novel model of care increased provision of meaningful PC in advanced cirrhosis compared with standard of care (SOC). Thirty consecutive hepatology clinic outpatients with advanced cirrhosis, meeting one or more cirrhosis-related PC referral criteria, consented to treatment in the HepatoCare clinic (PC physician, specialist liver nurse, pharmacist) in parallel with usual specialist hepatology care. A control cohort of 30 consecutive outpatients with advanced cirrhosis undergoing SOC treatment was retrospectively identified for comparison. The primary outcome was provision of meaningful PC using HepatoCare versus SOC. Additional clinical outcomes were assessed over 12 months or until death and significant differences were identified. The intervention and control cohorts had similarly advanced cirrhosis (mean Child-Pugh scores 8.7 vs 8.2, P = 0.46; mean model for end-stage liver disease scores 14.4 vs 14.6, P = 0.88) but a lower 12-month mortality rate (33% HepatoCare vs 67% SOC; P = 0.02). The intervention cohort experienced higher uptake of formal ACP (100% vs 25% for the control cohort) and outpatient PC referral (100% vs 40%), and were more likely to die at home or in a PC bed/hospice (80% vs 30%). The majority of the HepatoCare cohort (81%) had medications safely deprescribed and experienced fewer unplanned admission days (470 vs 794). HepatoCare is a novel multidisciplinary model of care that integrates effective PC and specialist hepatology management to improve outcomes in advanced cirrhosis.

Advance care planning for patients with chronic obstructive pulmonary disease on home non-invasive ventilation: A qualitative study exploring barriers, facilitators and patients' and healthcare professionals' recommendations.

Although home non-invasive ventilation for patients with chronic obstructive pulmonary disease and persisting hypercapnia prolongs time to hospital readmission and prognosis, they retain a poor long-term prognosis. Requiring non-invasive ventilation in this population should trigger advance care planning, yet only 50% of patients are engaged in such discussions. This study aimed to explore the barriers and facilitators to advance care planning for patients with chronic obstructive pulmonary disease on home non-invasive ventilation and generate recommendations for improving practice. A cross-sectional interview study took place with 10 patients with chronic obstructive pulmonary disease on home non-invasive ventilation and 12 North East Assisted Ventilation Service healthcare professionals from the North East of England. Three themes ('overlooked', 'disjointed care' and 'awareness and expertise') were identified. Patients with chronic obstructive pulmonary disease are a 'forgotten about' population, exacerbated by prejudice and unpredictable disease trajectories. Recognition as a distinct and underserved population may improve care and advance care planning. All participants recognised a lack of care continuity, including limited collaboration and communication between services, as a significant barrier to advanced care planning. Additionally, lacking understanding of the rationale and positive impacts of advance care planning, exacerbated by a lack of expertise in difficult conversations, was a barrier to advance care planning. Patients and healthcare professionals highlighted the need for individualised and ongoing advance care planning, particularly around prognosis and care preferences. Discussions should be initiated by familiar clinicians. Effective communication between services, clear agreements and protocols and upskilling healthcare professionals may ensure continuity of care.

Stakeholders' Perspectives on the Quality of End-of-Life Health Care Services for Chronic Obstructive Airways Disease: A Focus Group Study.

Delivery of end-of-life care for severe chronic obstructive pulmonary disease (COPD) has been hampered by an unpredictable disease trajectory and poor integration of health care and social services. To critically explore the perspectives, values, and experiences of stakeholders in COPD end-of-life healthcare services in a large district in Aotearoa New Zealand. Focus groups analysed utilising critical theory and Actor-Network Theory. Stakeholders in end-of-life COPD healthcare services were purposively sampled from a large healthcare network in Canterbury, Aotearoa New Zealand to participate in seven focus groups (bereaved carers, community-based health professionals, non-Māori, non-Pacific patients, and support people (two groups), Māori patients, supporters and health professionals, Pacific patients, support people and health professionals, and hospital-based health professionals). Participants discussed end-of-life care services for people with COPD. Transcripts were coded utilising descriptive and structural coding to develop themes related to provision of quality care. Participants were positioned as experts. We considered how the themes arising supported and disrupted the healthcare network for end-of-life COPD. Five themes related to quality of care for end-of-life COPD were identified: compassion, competence, community, commitment, and collaboration. The absence of any of these five themes required for quality care led to power imbalances within healthcare systems. Power inequities created disconnection among stakeholders which then disrupted commitment, community, and collaboration. A dysfunctional healthcare network impeded compassion between stakeholders and did not support their competence, leading to lower quality care. All five themes were identified as essential to delivery of high-quality end-of-life care in COPD. Stakeholders' perspectives of end-of-life care for COPD identified of core features of a health system network that enabled or impeded the actions of stakeholders and allocation of resources to provide quality care.

Doing palliative care research on hematologic cancer patients: A realist synthesis of literature and experts' opinion on what works, for whom and in what circumstances.

Research in PC (Palliative Care) is frequently challenging for patient's frailty, study design, professional misconceptions, and so on. Little is known about specificity in PC research on Hematologic cancer patients, who have distinct characteristics that might influence the enrollment process. What works, how and for whom, in increasing enrollment in studies in PC on patients with hematologic malignancies? Realist review: a qualitative review whose goal is to identify and explain the interaction between Contexts, Mechanisms, and Outcomes (CMOs). The theory was informed by a narrative, theory-based literature research, including an initialsystematic research, and the addition of papers suggested by experts of the field. We also used 7 interviews with experts in PC about patients with hematologic malignancies research and our own experience from a PC pilot study on patients with hematologic malignancies to refine the initial theory. In our initial theory we hypothesize that: - Access to palliative care could be beneficial to hematologic patients, even in early stages - Hematologists tend to under-use palliative care services in general, due to unpredictable disease trajectories and cultural barriers. - These factors may negatively impact the patients' enrollment in PC researchWe included secondary literature as narrative reviews, if they presented interesting propositions useful for our theoretical construction. 23 papers met our inclusion criteria.We also searched for relevant CMOs impacting referral in palliative care, and we selected a list of CMOs that could be relevant also in hematology. We accordingly theorized a group of interventions that could increase the enrollment in PC research and presented them using "social exchange theory" (SET) as a theoretical framework.Prominent researchers in PC in hematologic malignancies were interviewed on their opinion on our results, and additional CMOs. Before conducting research in PC on patients with hematologic malignancies, it's probably advisable to assess: - The perception of the different actors (physicians, nurses, other professionals involved), in particular the hematologists, in terms of pros and cons of referral to PC and enrollment in PC trials - The existing relationship between PC and the Hematology departmentAccordingly, it's possible to tailor different interventions on the various actors and choose a model of trial to increase the perception of benefits from PC and, consequently, enrollment.

EXPLORING SELF-MANAGEMENT CHALLENGES OF ADOLESCENTS AND YOUNG ADULTS WITH INFLAMMATORY BOWEL DISEASE IN AN ONLINE INSTAGRAM SUPPORT COMMUNITY

Abstract PURPOSE The purpose of this qualitative study was to explore disease self-management challenges posted in an online Instagram support community by adolescents and young adults (AYAs) with inflammatory bowel disease (IBD). BACKGROUND For the estimated 6.8 million people worldwide living with IBD, effective disease self-management is paramount to supporting positive disease outcomes including quality of life. IBD self-management is highly individualized and can include a combination of medication management, ostomy management, and lifestyle modification. Self-management can be a complex process as it is often influenced by unpredictable disease trajectory. AYAs are disproportionately affected by IBD and experience myriad psychosocial and self-management challenges considering their stage of development and disease status. Youth with chronic conditions often turn to social media as a source of information and support. Instagram is a popular social media platform among AYAs, with more than one-third of users falling between 13 and 24 years of age. Harnessing this real-world data can reveal the authentic self-management challenges of AYAs with IBD. METHODS Public Instagram posts between January and December 2019 were manually extracted from an online IBD support community with over 16,7000 followers (see examples in Figure 1). We extracted posts about self-management from Instagram users who: 1) indicated they had IBD; and 2) stated they were 13-24 years old or in middle school, high school, or college. Using thematic analysis, authors independently coded and identified emerging themes about IBD self-management challenges (Figure 2). Authors discussed any disagreement about identified themes through an iterative process until consensus was reached. RESULTS Out of 2,700 posts assessed for eligibility, 83 met inclusion criteria. Six major themes about self-management emerged: Desire for Normalcy, Dietary Changes, Education and Career, Healthcare System, Relationships with Others, and Symptoms and Complications. Additionally, nine subthemes emerged: Finding Balance, Wanting a Normal Life, Transitioning to College and Work, Handling School, Understanding Diagnosis, Accessing Health Services, Navigating Treatment and Side Effects, Managing Significant Relationships, and Seeking Peers with IBD. Self-management challenges permeated every aspect of life, including relationships, school activities, and aspirations for the future. CONCLUSIONS Our findings represent the first thematic analysis of Instagram posts in an online IBD community and provide a crucial perspective of the concerns of AYAs with IBD. Self-management challenges were wide-ranging and complex, highlighting the gap between self-management needs and skills in this population. Future research should further explore these challenges to develop tailored self-management interventions to improve quality of life in AYAs with IBD.

Abstract 11187: Perceptions of Patient Heart Failure Severity and Caregiver Inflammatory Markers: Interactions with Race and Education

Background: Heart failure (HF) caregivers (CGs) may experience stress due to unpredictable patient disease trajectory. Interleukin-6 (IL-6) and high-sensitivity C-reactive protein (hs-CRP) are reported to be elevated in dementia CGs, but less is known about HF CGs response to stress or relationships with social determinants of health such as education and race. Objective: To determine if social factors (race, education) modify the relationship between patient disease severity trajectory (NYHA class) and CG stress as measured by inflammatory biomarkers of IL-6 and hs-CRP among HF CGs. Methods: A secondary analysis was conducted using baseline data from Caregiver Opportunities for Optimizing Lifestyle (COOL) trial. Education was dichotomized into technical/high school or less versus college or post-graduate degree. Race was dichotomized as African American (AA) or White/Asian due to the low number of Asian CGs. Two-way analysis of variance tests were conducted for IL-6 and hs-CRP to test interaction effects between CG perceived NYHA class and education or race. Results: Participants (n=127) were predominantly female (n=117, 92.1%), AA (n=74, 58.3 %), and the majority (70.1%) reported a college or post-graduate education. Perceived NYHA class were reported as: I (n=32, 25.6%), II (n=31, 24.8%), III (n= 47, 37.6%), and IV (n=15, 12.0%). For hs-CRP, there was a significant interaction between race and NYHA class (p=.013). Higher hs-CRP levels were noted in class II, compared to class I or class III for AA CGs (p=.004). White/Asian CGs did not have significant hs-CRP differences between NYHA classes (p=.634). While similar trends were observed for IL-6 between race and NYHA class, it did not reach statistical significance. In the model for education and perceived disease severity, NYHA class was significant (p=.038) for hs-CRP. In the post hoc test for NYHA class, hs-CRP was highest among NYHA class II (p<.02) for lower education levels. For IL-6, NYHA class was significant (p=.047); but the interaction effect with education was not significant (p=.687). Conclusions: Our findings suggest that CGs of AA race and/or lower education may experience higher stress earlier in the HF disease trajectory and may therefore benefit from targeted CG support interventions.

P.078 Clinical Milestones in PSP and MSA may be Appropriate Triggers for Palliative Care Intervention

Background: Progressive supranuclear palsy (PSP) and multiple system atrophy (MSA) are progressive neurodegenerative disorders with complex symptom burden and unpredictable disease trajectories. The ideal timing of palliative care interventions is uncertain given the variable natural history of both diseases. Methods: A systematic review was conducted to identify publications investigating predictors of survival in PSP and MSA. A medical librarian assisted to ensure comprehensive search strategy. Relevant literature on palliative care in PSP and MSA was also reviewed. Results from both searches were qualitatively combined in order to suggest triggers for targeted palliative care throughout the disease trajectory. Results: ‘Milestones’ are well documented and clinically relevant disease points that prompt further care. Important milestones include: frequent falls, cognitive impairment, unintelligible speech, severe dysphagia, wheelchair dependence, urinary catheterisation, and nursing home placement. PSP-Richardson syndrome accumulates milestones earlier than PSP-Parkinsonism or MSA. Many PSP patients already have falls and cognitive impairment at the time of diagnosis. Time from milestone to death is variable. Conclusions: Milestones can be used to trace disease progression and help predict survival. Clinical milestones are likely to be important triggers for targeted palliative care interventions including the early incorporation of a palliative approach to care or referral to specialised palliative care services.

End-of-Life Care Preferences of Older Patients with Multimorbidity: A Mixed Methods Systematic Review.

Unpredictable disease trajectories make early clarification of end-of-life (EoL) care preferences in older patients with multimorbidity advisable. This mixed methods systematic review synthesizes studies and assesses such preferences. Two independent reviewers screened title/abstracts/full texts in seven databases, extracted data and used the Mixed Methods Appraisal Tool to assess risk of bias (RoB). We synthesized findings from 22 studies (3243 patients) narratively and, where possible, quantitatively. Nineteen studies assessed willingness to receive life-sustaining treatments (LSTs), six, the preferred place of care, and eight, preferences regarding shared decision-making processes. When unspecified, 21% of patients in four studies preferred any LST option. In three studies, fewer patients chose LST when faced with death and deteriorating health, and more when treatment promised life extension. In 13 studies, 67% and 48% of patients respectively were willing to receive cardiopulmonary resuscitation and mechanical ventilation, but willingness decreased with deteriorating health. Further, 52% of patients from three studies wished to die at home. Seven studies showed that unless incapacitated, most patients prefer to decide on their EoL care themselves. High non-response rates meant RoB was high in most studies. Knowledge of EoL care preferences of older patients with multimorbidity increases the chance such care will be provided.

Talking to children about illness and death of a loved one during the COVID-19 pandemic

Talking to children about illness and death of a loved one during the COVID-19 pandemic

Palliative Care in a Death-Denying Culture: Exploring Barriers to Timely Palliative Efforts for Heart Failure Patients in the Primary Care Setting.

Heart failure (HF) is a complex, life-limiting disease that is prevalent and burdensome. All major cardiology societies and international clinical practice guidelines recommend the integration of palliative care (PC) interventions alongside usual HF management. The purpose of this review of the literature was to evaluate the various barriers to the early initiation of PC for HF patients in the primary care setting. An integrative literature review was conducted in order to assess and incorporate the diverse sources of literature available. An EBSCO search identified relevant articles in the following databases: Medline complete, Academic Search Premier, CINAHL, PsycINFO, Cochrane Library, and SocINDEX. The search was limited to full text, peer reviewed, English only, and published between 2010 and 2019. Barriers to the integration of PC for HF patients include poor communication between provider/patient and interdisciplinary providers, the misperception and miseducation of what PC is and how it can be incorporated into patient care, the unpredictable disease trajectory of HF, and the limited time allowed for patient care in the primary care setting. The results of this review highlight a lack of communication, time, and knowledge as barriers to delivering PC. Primary care providers caring for patients with HF need to establish an Annual Heart Failure Review to meticulously evaluate symptoms and allow the time for communication involving prognosis, utilize a PC referral screening tool such as the Needs Assessment Tool: Progressive Disease-Heart Failure, and thoroughly understand the benefits and appropriate integration of PC.

Informal carers' experiences of caring for a person with heart failure in a community setting.

Heart failure (HF) is a life-limiting condition with a poor prognosis and unpredictable disease trajectory. HF brings physical and emotional challenges for patients and their carers. Predominantly the informal carer population consists of older females, however, caring is evolving as longevity increases and complex conditions are becoming more commonplace. Consequently, more men and younger people are contributing to daily care. The aim of this study was to explore the positive as well as negative dimensions of caring in HF across a range of carer characteristics. Fourteen semi-structured interviews were conducted with informal carers of people with HF in the UK (median age 71; female 10). Interviews were transcribed verbatim and analysed with the assistance of NVivo10 using Interpretative Phenomenological Analysis. Findings from the study demonstrated that most participants considered caring as integral to their relationships. Dimensions facilitating positivity in caring included compassion, thoughtfulness and understanding. An ability to cope was influenced by a range of attributes including quality of relationships in the carer/patient dyad and with formal social care providers who offered access to tailored and timely information and support. The unpredictable HF disease trajectory influenced the carer experience and enhanced the challenges encountered. The information needs of carers were not always adequately met and younger adult carers expressed particular difficulties with appropriate information and support. Expectations of our informal carer population are increasing and evolving. Health and social care policy requires innovative proposals for the funding and delivery of health and social care that has the contribution made by informal carers at its core.

The ENABLE study protocol: Understanding and characterising the value and role of self-management support for people living with cancer that is treatable but not curable.

Attention is turning to the needs of people living with treatable but incurable cancer, a group with complex needs, living with uncertainty over time. More research is needed to understand how this group self-manage the impact of cancer to strengthen the evidence base for interventions. This study aims to understand the value and outcomes of self-management support for people living with treatable but incurable cancer. Qualitative longitudinal methods will examine how support needs change over time in relation to self-management and unpredictable disease trajectories. Thirty patients and 30 carers will be recruited from two hospitals, each participating in three interviews over 1year. Patients will be purposively sampled according to age, gender, cancer type and anticipated survival. Carers will be recruited via nomination by patients but interviewed separately. One-off interviews will be conducted with 20 healthcare professionals, providing data from multiple perspectives. Based on interview findings, a modified Delphi process will map areas of consensus and disparity regarding conceptualisations and outcomes of self-management support. The key output will be practice recommendations in relation to self-management support, producing evidence to inform service innovation for those living with treatable but incurable cancer.

End-of-Life Trajectories of Patients With Hematological Malignancies and Patients With Advanced Solid Tumors Visiting the Emergency Department: The Need for a Proactive Integrated Care Approach.

Purpose:Patients with hematological malignancies (HM) have more unpredictable disease trajectories compared to patients with advanced solid tumors (STs) and miss opportunities for a palliative care approach. They often undergo intensive disease-directed treatments until the end of life with frequent emergency department (ED) visits and in-hospital deaths. Insight into end-of-life trajectories and quality of end-of-life care can support arranging appropriate care according to patients’ wishes.Method:Mortality follow-back study to compare of end-of-life trajectories of HM and ST patients who died <3 months after their ED visit. Five indicators based on Earle et al. for quality of end-of-life care were assessed: intensive anticancer treatment <3 months, ED visits <6 months, in-hospital death, death in the intensive care unit (ICU), and in-hospice death.Results:We included 78 HM patients and 420 ST patients, with a median age of 63 years; 35% had Eastern Cooperative Oncology Group performance status 3-4. At the ED, common symptoms were dyspnea (22%), pain (18%), and fever (11%). After ED visit, 91% of HM patients versus 76% of ST patients were hospitalized (P = .001). Median survival was 17 days (95% confidence interval [CI]: 15-19): 15 days in HM patients (95% CI: 10-20) versus 18 days in ST patients (95% CI: 15-21), P = .028. Compared to ST patients, HM patients more often died in hospital (68% vs 30%, P < .0001) and in the ICU or ED (30% vs 3%, P < .0001).Conclusion:Because end-of-life care is more aggressive in HM patients compared to ST patients, a proactive integrated care approach with early start of palliative care alongside curative care is warranted. Timely discussions with patients and family about advance care planning and end-of-life choices can avoid inappropriate care at the end of life.

"It's a disease of families": Neurologists' insights on how to improve communication and quality of life for families of Parkinson's disease patients.

Parkinson's disease presents an evolving challenge for patients and families due to an unpredictable disease trajectory and symptoms that complicate social interactions. In this study, we explore neurologists' perspectives on the challenges Parkinson's disease presents for families and the strategies they use to improve communication and quality of life. We conducted hour-long semi-structured interviews with 16 neurologists at 4 care delivery institutions in the San Francisco Bay Area, focusing on techniques neurologists use to support families through the Parkinson's disease journey. Neurologists identified strategies for addressing caregiver-patient disagreements around symptom accuracy and negotiating driving safety. Family education is needed to contextualize patient symptoms and to identify psychosocial support resources. Unmet caregiver needs remain, particularly in the form of psychosocial support, respite care and support for unequal gender dynamics in the Parkinson's disease caregiving experience. Family members of Parkinson's disease patients face unique caregiving and interpersonal challenges due to the nature of the disease. Targeted education and structural support are needed to alleviate current burdens and allow for improved patient- and family-centered care.

Palliative care nursing for patients with neurological diseases: what makes the difference?

Neurodegenerative diseases progress slowly, creating increasing physical disability with unpredictable disease trajectories. The disease's life-threatening nature often places these patients in palliative care. There are several factors that complicate the care of patients with neurodegenerative diseases in palliative care units. Owing to physical impairments, there are many communication barriers between patients and staff. Nurses are not able to duplicate the patient's meticulous daily routine leading to caregiver mistrust in the nurse's competencies. Even if the patient is hospitalised, caregivers may not take the much-needed time off to recuperate. The placement of patients with neurodegenerative diseases in palliative care is confusing, since they rarely die during in-hospital treatment but might even get better due to multidisciplinary treatment. Finally, patients and caregivers lack adequate knowledge about disease progression and available help and support programmes. Patients with neurodegenerative diseases urgently need palliative care and nurses and caregivers need better preparation to appropriately deal with these diseases.

WORKING COLLABORATIVELY TO IMPROVE ACCESS TO SPECIALIST PALLIATIVE CARE FOR PEOPLE WITH END STAGE LUNG DISEASE: AN EXPLORATORY PILOT STUDY

BackgroundThe need to improve access to specialist palliative care services for people with end stage non-malignant lung disease is well evidenced. The unpredictable disease trajectory however challenges the traditional model...

Palliative care for people with heart failure: Summary of current evidence and future direction

Background: Heart failure is a common condition with a significant physical and psychological burden for patients and their families. The need for supportive and palliative care: It is well recognised that palliative care is important in patients with advanced heart failure. What is known: Heart failure patients have limited access to palliative care services. Barriers to palliative care include difficult prognostication due to the unpredictable disease trajectory and inadequate initiation of conversations about end-of-life care. What is not known: There are gaps in the evidence for symptom control, especially for symptoms other than pain or dyspnoea, but recommendations are becoming increasingly evidence based. Implications for research, policy and practice: There are challenges to research in this area although progress is being made with increasing numbers of trials and use of novel research methods. Integrated models of care based on symptom triggers rather than prognosis are recommended. At the centre is excellent communication both with the patient and between services to ensure the best possible care.

UNDERSTANDING HOW CANCER PATIENTS ACTUALISE, RELINQUISH, AND REJECT ADVANCE CARE PLANNING: IMPLICATIONS FOR PRACTICE

BackgroundAlthough advance care planning (ACP) is recognised as intégral to quality cancer care, it remains poorly integrated in many settings. Given cancer patients' unpredictable disease trajectories and equivocal treatment options,...

Understanding how cancer patients actualise, relinquish, and reject advance care planning: implications for practice

Although advance care planning (ACP) is recognised as integral to quality cancer care, it remains poorly integrated in many settings. Given cancer patients' unpredictable disease trajectories and equivocal treatment options, a disease-specific ACP model may be necessary. This study examines how Australian cancer patients consider ACP. Responses will inform the development of an Australian Cancer Centre's ACP programme. A constructivist research approach with grounded theory design was applied. Eighteen adults from lung and gastro-intestinal tumour streams participated. Participants first described their initial understanding of ACP, received ACP information, and finally completed a semi-structured interview assisted by the vignette technique. Qualitative inter-rater reliability was integrated. Participants initially had scant knowledge of ACP. On obtaining further information, their responses indicated that: For cancer patients, ACP is an individualised, dynamic, and shared process characterised by myriad variations in choices to actualise, relinquish, and/or reject its individual components (medical enduring power of attorney, statement of choices, refusal of treatment certificate, and advanced directive). Actualisation of each component involves considering, possibly conversing about, planning, and communicating a decision, usually iteratively. Reactions can change over time and are informed by values, memories, personalities, health perceptions, appreciation of prognoses, and trust or doubts in their substitute decision makers. Findings endorse the value of routinely, though sensitively, discussing ACP with cancer patients at various time points across their disease trajectory. Nonetheless, ACP may also be relinquished or rejected and ongoing offers for ACP in some patients may be offensive to their value system.