Ethical Considerations on the Meaning and Decision of Death - Issues and Criticism in the Hospice, Palliative Care, and Life-sustaining Treatment Decision-making Act -

Background: Despite NCCN Guidelines and clear definition of palliative care, patients often carry misperceptions about palliative care and how it can be beneficially integrated into a patient’s care plan. In order to better understand the misinformation about palliative and hospice care, this study aims to assess patient-healthcare provider (HCP) communication regarding treatment decisions. Methods: An online survey was conducted with individuals who have had a diagnosis of cancer (n=1,517) to better understand their healthcare experiences as well as the impact their cancer diagnosis had on their quality of life. Measures included agreement scale questions assessing patient information needs surrounding treatment decision making. Open-ended questions where respondents were prompted to provide a written response allowed researchers to further assess patients’ understanding of palliative and hospice care. Responses to agreement-scale questions were evaluated using descriptive statistics. Openended question responses were analyzed using Dedoose qualitative data analysis software. Results: Among patients with a diagnosis of cancer, there were a broad range of patient misperceptions regarding palliative care, hospice care, and how they are used in cancer care. The majority of respondents (81%) stated that their HCP played a role when deciding on their treatment plan. Despite this, only 46% were confident they knew about the treatment’s impact on their daily life, 56% were confident they knew about the potential side effects of treatment, and 57% felt they had all of the information they needed. Themes identified through qualitative analysis include: patient conflation of palliative and hospice care, belief that palliative and hospice care are only relevant to end-of-life decision-making, and uncertainty about whether quality of life can actually be improved. Conclusions: Institutions and HCPs are recommended to integrate palliative care into cancer care. However, as this research shows, oncology patients are often misinformed about the benefits of palliative care. This follows a parallel concern of patients making treatment decisions without optimal information. A potential factor behind this unmet need may be lack of effective communication between patient and HCP. Palliative care may be mentioned by the HCP, but not discussed with enough empathy or depth, leading to patient misunderstanding and lack of inclusion in treatment plans.

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How does parental status influence preferences for cancer treatment and palliative care?

Journal of Clinical Oncology ◽

10.1200/jco.2014.32.30_suppl.65 ◽

2014 ◽

Vol 32 (30_suppl) ◽

pp. 65-65

Author(s):

Devon Check ◽

Eliza Park ◽

Katherine Elizabeth Reeder-Hayes ◽

Deborah Mayer ◽

Allison Mary Deal ◽

...

Keyword(s):

Decision Making ◽

Palliative Care ◽

Cancer Treatment ◽

Metastatic Cancer ◽

Treatment Decision ◽

Treatment Decisions ◽

Family Characteristics ◽

Parental Status ◽

Treatment Decision Making ◽

Parental Concerns

65 Background: When patients with metastatic cancer have dependent children, they may be less likely to acknowledge the terminal nature of their illness and more willing to accept toxic treatments for small improvements in survival, compared to patients without children. Our mixed methods study sought to clarify the role of parental concerns in treatment decision-making. Methods: We recruited 63 patients with metastatic cancer who have children <18 to complete measures of physical and social wellbeing. 47 (75%) also participated in a semi-structured interview, which included questions about whether parental status influences patients’ decisions about anti-cancer treatment and whether patients would consider using palliative care, including hospice. We used univariable logistic regression to examine the relationship between patient and family characteristics and 3 outcomes: 1) influence of parental status on treatment decision-making, 2) interest in palliative care, and 3) interest in hospice. We used participants’ qualitative comments to describe the context for their preferences. Results: Average patient age was 44; average number of children was 2, and average child age was 13. 70% of patients reported that being a parent influences their treatment decisions. 64% cited parental status as motivation for life-extending treatment. 15% prioritized preserving parental functioning. Half of patients said they would consider using palliative care, and 57% said they would consider using hospice. Reasons for disinterest in palliative care and hospice included concerns about being perceived as giving up and children’s exposure to death at home. Parents with older children (OR 0.85, p=0.03), and those with increased social support (OR 0.96, p=0.05) had lower odds of reporting an influence of parental status on treatment decisions. Children’s age (OR 0.85, p=0.02) and low performance status (OR 4.3, p=0.02) were associated with palliative care interest. Conclusions: Parental concerns may influence treatment decision-making for metastatic cancer patients with children. Information about parental concerns may help oncologists to align treatment with patients’ priorities.

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