Medical oncology outpatients’ preferences and experiences with advanced care planning: a cross-sectional study

Despite advances in treatments, cancer remains a leading cause of death worldwide [1]. High quality cancer care has been defined by the Institute of Medicine (IOM) as care that is safe, effective, patient-centered, timely, efficient, and equitable [2]. Quality indicators of end-of-life care have been developed globally, however there is wide variation across care domains and service providers [3‐5]. There has been increasing recognition over the past decade that many cancer patients receive aggressive medical care at the end of life [6], including receipt of cancer-directed procedures and therapies; emergency room and intensive care admissions; and in-hospital deaths [3, 4]. Between 5 and 55% of patients with advanced cancer receive chemotherapy in the last month of life [7]. A US study of 28,731 patients aged < 65 years found 71–76% of patients with varied cancer types received aggressive care in the last 30 days of life, including 30–35% of patients who died in the hospital [8]. It is estimated that between 33 and 38% of inpatients will receive futile treatment [9]. In addition to clinical criteria, inappropriate hospital admissions at the end of life have been attributed to poor availability of alternative care options, failure of preventive actions by healthcare providers; family requests; or too late an admission to be of benefit [10]. While aggressive medical care often results in disproportionately greater health expenditure, it may not correspond to increases in length or quality of life for patients. An Australian study found that overall health care costs were significantly higher among those who died from cancer than those dying from other causes, with 40% of costs expended in the last month of life [11].

ACP is an “ongoing process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care” [12]. It can include: making a written document (such as an advance care directive) to express values and instructions about health matters and/or the appointment of substitute decision makers (SDM) to make health and personal decisions during periods of incapacity [12, 13]. The benefits of ACP are well established. For example, engaging in ACP has been shown to reduce non-essential transfers to hospital and decrease life-sustaining treatment at the end of life [14], improve family satisfaction with end-of-life care [15, 16], and increase use of hospice and palliative care [16]. ACP has been shown to increase the concordance between preferred care and the care actually delivered. Despite its potential benefits however, some evidence suggests that ACP is not systematically implemented in cancer care. The reported proportion of advanced cancer patients who engage in end-of-life discussions varies, with some reporting fewer than 40% [16, 17] and others as high as 73% [18, 19]. Rates of documentation of ACP with an oncologist have been as low as 10%; with rates of documentation increasing to between 30 and 40% in intervention studies [20].

Extensive research has examined the factors influencing uptake and the utility of ACP for individuals with cancer. A recent systematic review examined patient, caregiver and healthcare provider experiences and perceptions of ACP in cancer care, and concluded that uptake of ACP is a function of a range of complex relational, emotional and social factors [21]. Studies examining barriers to ACP report that unrealistic patient or family expectations of prognosis and poor understanding of care outcomes can hinder timely end-of-life conversations [22]. Limited provider time, skill and confidence in implementing ACP are also recognised as important barriers [23]. However, our knowledge of the extent to which ACP activities are valued by cancer patients, particularly in the Australian context, is uncertain [21]. Prospective surveys that assess participation in ACP activities at a particular time point should be interpreted in the context of a patients’ readiness to engage in activities [24]. Understanding patient willingness to participate in ACP activities can provide greater clarity about whether rates of uptake represent a gap in care or are a result of patient preference.

Therefore, this study examined the perceived importance, rate of uptake, and preferences for participation in ACP activities in a sample of medical oncology outpatients attending two Australian cancer treatment centres. Specifically, the aims of this study were to determine in a sample of medical oncology outpatients, the:

The value of ACP as a key component of optimal care is increasingly acknowledged by professional oncology organisations and in practice and policy documents [18]. This heterogeneous sample of medical oncology outpatients, of mixed cancer types, at various stages in the cancer care pathway, appeared to share this view. Discussions with families about end-of-life care wishes was particularly valued by patients. This is consistent with previous studies in which patients who choose to engage in end-of-life conversations typically prefer their family be involved [26]. The majority of patients also acknowledged the importance of having end-of-life conversations with doctors. Health professional involvement helps to ensure that patients and their families hold accurate views about end-of-life issues such as prognosis and treatment intent [27, 28]; and that decisions are appropriate to patient circumstances. Fewer patients viewed the appointment of substitute decision makers as important when compared to other ACP activities. It may be that patients believe family members already know and will enact their wishes without the need for formal appointments; or wish to avoid burdening family with this role [21].

The positive views held by patients did not consistently translate into action, with only one third of respondents having actually discussed their wishes with their family. Previous studies suggest that patients may avoid discussions if they have concerns that confronting end-of-life issues may have negative impact on family members [21, 29]. Very few had already spoken to their doctor about the type of end-of-life care they would like to receive, and less than one third had discussed life expectancy with their doctor. This low uptake is consistent with previous studies in similar populations [16‐18]. While not here, low recall by patients that discussions have occurred; or provider- or other system-related barriers (e.g. lack of provider skills, fear of depriving patient of hope) have been reported to contribute to low reported rates of discussion between patients and health care providers [21, 23].

Despite recommendations that more formal ACP activities be a routine part of care [30], very few patients had recorded their wishes in a written document, such as an advance care directive (ACD). Increasingly, the field is moving toward implementing ACP as a process that encompasses ongoing discussions and the appointment of substitute decision-makers; rather than relying solely on the completion of ACDs [31]. The low rate of written documentation reported by respondents in this study may therefore reflect this change in focus. Previous studies also show that some patients are unaware of the availability of legal written documents such as ACDs or their function [32]. Some express concerns about not being able to change written documents [33], preferring instead that decisions are made at the time by their health care team and/or family members. Family members may also play a role in a person’s decision to complete ACDs [34]. Only one third of respondents reported having already appointed a SDM, perceiving this as less important when compared to other ACP activities. This is despite SDM appointments having been identified as one of the key outcomes of successful ACP [13]. There is a need to ensure patients and families are aware of the purpose and potential benefits of appointing substitute decision makers and formally documenting wishes.

Despite the positive attitudes held by the majority of patients towards the range of ACP activities described, the lack of participation in ACP activities appeared concordant with the current preferences of some patients. A perceived lack of importance may have contributed to unwillingness to participate, particularly for activities such as appointing a SDM. Given the majority of patients perceived ACP activities as important in this study, it may be that patients instead did not feel that these activities were relevant to them yet. As many patients perceived their cancer to be curable or in remission, the one-month timeframe may also have been a factor. That many patients, including those who self-reported having advanced disease, had not already participated in the ACP activities did express a desire to do so suggests there is a gap between what patients want and what they are actually receiving in relation to informal and formal end-of-life communication.

Advance care planning aims to support patients and SDMs to participate with clinicians in making the best possible in-the-moment medical decisions. While medical oncology outpatients hold positive attitudes toward key ACP activities, these attitudes do not consistently translate to ACP uptake. This is despite many patients who have not participated in these activities expressing a willingness to do so. Efforts to promote the adoption of ACP in oncology should focus on ensuring patients and families have clarity about the legal and other ramifications of ACP activities, particularly the importance of designating SDMs; and better education and training of health care providers in initiating conversations about end-of-life issues.