|Year : 2021 | Volume
| Issue : 1 | Page : 50-54
Can hospital doctors provide quality palliative care informed by end-of-life care legislation: An Australian perspective
Aaron K Wong1, Susan E Carey2, David J Kenner3
1 Department of Palliative Care, Eastern Health, 5 Arnold St, Box Hill; Department of Palliative Care, Peter MacCallum Cancer Centre, 305 Grattan St, Melbourne Victoria, Australia
2 Department of Medical Education, The University of Melbourne, Parkville, Victoria, Australia
3 Department of Palliative Care, Eastern Health, 5 Arnold St, Box Hill, Victoria; Department of Palliative Care, Launceston General Hospital, Launceston, Tasmania, Australia
|Date of Submission||31-Aug-2020|
|Date of Decision||11-Feb-2021|
|Date of Acceptance||12-Feb-2021|
|Date of Web Publication||26-Jun-2021|
Dr. Aaron K Wong
Department of Palliative Care, Peter MacCallum Cancer Centre, 305 Grattan St, Melbourne, Victoria 3000
Source of Support: None, Conflict of Interest: None
Background and Aim: Approximately 50% of deaths in Australia occur in hospitals, and this number is growing. Studies consistently show that doctors have poor knowledge of end-of-life decision making; however, this has not been examined in specific groups of hospital doctors. We examined hospital doctors' knowledge of key elements of end-of-life care legislation. Materials and Methods: We conducted a prospective, observational, cross-sectional study of doctors from a large Australian public tertiary health network using six questions formulated on basic key elements of the legislation. Demographic data collected included years of work experience, clinical unit, and proportion of work hours spent with dying patients. Results: Of the 201 doctors censored, senior doctors (>10 years' experience) were the least knowledgeable group. Only approximately 20% of doctors correctly answered all questions. Thirty-two percent would potentially provide futile treatment if demanded by a competent patient. Fifty percent did not know how to locate an advance directive in the hospital record. There was confusion regarding the role of the substitute decision-maker. Conclusions: Approximately a quarter of hospital doctors practise with a poor understanding of the law over the various domains. The urgent call for education is further highlighted not only for students and junior doctors but also for senior doctors who scored poorly. Educational efforts could begin from addressing the simple key areas of legislation covered in the survey.
Keywords: Hospitals, knowledge, legislation, medical law, palliative care
|How to cite this article:|
Wong AK, Carey SE, Kenner DJ. Can hospital doctors provide quality palliative care informed by end-of-life care legislation: An Australian perspective. Arch Med Health Sci 2021;9:50-4
|How to cite this URL:|
Wong AK, Carey SE, Kenner DJ. Can hospital doctors provide quality palliative care informed by end-of-life care legislation: An Australian perspective. Arch Med Health Sci [serial online] 2021 [cited 2021 Nov 30];9:50-4. Available from: https://www.amhsjournal.org/text.asp?2021/9/1/50/319384
| Introduction|| |
It is common for patients to die in a hospital. In 2014–2015, 50% of deaths in Australia occurred in hospitals where the number of hospital deaths has increased by approximately 8% over the preceding decade. A significant proportion of deaths involve withholding or withdrawing futile medical treatment. Hospital-based doctors play a major role in making these decisions and in deciding when to shift goals of care and/or provide palliative care. This can however be a challenging process for doctors. A systematic review found that a third of hospital patients receive nonbeneficial treatments in their final 6 months of life.
Studies have consistently found that doctors do not fully understand the laws surrounding end-of-life decision-making, including withholding and withdrawing life-sustaining treatment.,, This impacts medical practice and may result in poorer patient outcomes.
In Australia, each state and territory has its own legislative framework to guide end-of-life decision-making. Previous studies into end-of-life legislation in Victoria have called for law reform,, which has since been achieved by the Medical Treatment Planning and Decisions Act 2016 (referred to as “the new act” from here onwards), which replaces and clarifies conflicts and issues within its previous counterparts, the Medical Treatment Act 1988 and the Guardianship and Administration Act 1986.
The aim of this prospective, observational, cross-sectional study was to examine the understanding of hospital doctors' knowledge on the basic key elements of end-of-life care legislation in a large health network.
| Materials And Methods|| |
To fulfill the aim of examining basic key elements of the legislation and the ability to carry them out, six questions were formulated to capture basic key elements of the legislation. One question each was asked relating to decision-making processes for completing the consensus resuscitation form, the hospital document that contains information about the degree of medical intervention or resuscitation a patient is to receive, refusal of medication to alleviate distressing symptoms at the end of life, ability to demand futile treatment, and ability to find the advance directive on the hospital electronic medical record. Questions were asked in relation to the decision making ability of the competent patient, and of the Medical Power of Attorney in a non competent patient. The questions asked are listed in [Table 1].
|Table 1: Score schema for palliative care and the law questions and the percentage of respondents who answered correctly (n=199)|
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The legal definition of “palliative care,” advance directives, and end-of-life decisions differs between Australian states and territories and around the world; as such, for generalizability, the questions were worded to capture the essence of common instances of conflict in patients receiving palliative care: the refusal of appropriate medications to relieve distress at the end of life and the appropriateness of demanding futile medical treatments. Participants responded to each question on a six-item Likert scale where 1 = Strongly Agree, 5 = Strongly Disagree, and 0 = N/A. [Table 1] shows the percentage of respondents who correctly answered each item.
For face validity, the questionnaire was piloted with a group of medical oncologists (n = 3), palliative care physicians (n = 2), general medical doctors (n = 4), palliative care nurses (n = 7), oncology nurses (n = 3), and general medical nurses (n = 3). The questionnaire was refined accordingly.
Data were collected for years of clinical work experience (<5, 5–10 and >10 years), and whether the majority (>50%) of their work hours were spent with palliative patients (defined as likely to die within 12 months) or terminal patients (defined as dying within days). Data on the clinical unit were also collected: general medicine, acute specialty medicine (oncology, nononcology), subacute specialty medicine (palliative care and nonpalliative care), critical care emergency Department intensive care unit, and surgical/other.
Sample and participant selection
Participants were recruited from a large metropolitan public tertiary health network, comprising five inpatient campuses and two medical schools.
Doctors from all 29 wards were approached in person by palliative care staff at each campus to complete an anonymous questionnaire. A study envelope was placed at each ward to collect participant responses over a 3-day period. Further responses were sought from all medical staff via organizational email, through an online questionnaire platform (Google forms). Participants were all recruited from January to February 2016.
Analyses were conducted using Statistical analyses were conducted using IBM SPSS Statistics for Windows, Version 26.0. Armonk, NY, USA. Each item had a correct response where agreeing/strongly agreeing to items 1, 2, and 5 were correct and disagreeing/strongly disagreeing to items 3, 4, and 6 were correct. Items 1, 2, and 5 were reverse scored so that correct responses resulted in higher scores. No or N/A responses were scored 0. Item scores were summed to create a total palliative care law score, with a minimum of 0 (no and/or N/A responses for all six questions) and a maximum of 30 (all items correct with the highest confidence).
Chi-square analyses were conducted to examine variation in percentage of correct scores for each item for years of experience, units, time spent with palliative patients, and time spent with terminal patients. Experience (<5, 5–10, and >10 years) by working hours spent with palliative patients (<50% and >50%) by working hours spent with terminal patients (<50% and >50%) between-subject general linear model analysis was conducted on the data to determine the main effects. Alpha levels were set at 0.05 and unbiased Hedges' g with 95% confidence intervals was reported to demonstrate effect sizes where appropriate.
Ethics approval (QA31-2015) was obtained from the Office of Research and Ethics, Eastern Health.
| Results|| |
In total, 201 responses were obtained, with an 82% response rate for participants directly approached. Total response rates were unable to be quantified as it was not possible to determine the total number of participants who received the emailed questionnaire link.
The score schema for questions regarding palliative care and the law and proportion of correct answers are shown in [Table 1]. Only 19.4% (n = 39) of doctors correctly answered all questions. Assumptions of homogeneity of variance were met for all independent between-subject analyses. Two participants provided N/A responses to all items, resulting in scores of zero. Their data were removed from subsequent analyses. Only five participants had one NA response, and 2 participants had 2 NA responses. These were marked as “incorrect.”
Sixty-eight percent of doctors were correctly aware that competent patients could not demand futile treatment.
Approximately a fifth of doctors (21.9%) indicated they did not know that completing the consensus resuscitation form was a medical decision. Doctors with 5–10 years of experience were more likely to answer this question correctly (93.0% correct) than those with more than 10 years' experience (70% correct), χ2 (2) = 8.32 and P = 0.016.
Refusing palliative care
Most doctors (79.4%) correctly believed that competent patients could refuse medication to alleviate distressing symptoms at the end of life. Doctors who spend <50% of their working hours with palliative patients were 3.9 times more likely to know that patients can refuse medication to alleviate distressing symptoms (84.9% correct) than those who worked more with these patients (59.2% correct), χ2 (1) = 14.54 and P < 0.001. Most doctors correctly identified that the substitute decision-maker (SDM) could not refuse medication to alleviate distressing symptoms at the end of life (69.2%) and could not demand futile treatment (80.6%).
Finding the advance directive
Half the participants did not know where to locate the advance directive on the health service electronic record. Doctors working under subacute units were more likely to know how to locate the advance directive (84.0%) than surgical/others (25.8%), χ2 (4) = 18.81 and P < 0.001. Doctors who spend >50% working hours with palliative patients were 1.96 times more likely to locate the advance directive (63.3% correct) than those who do not work with these patients (46.7% correct), χ2 (1) = 4.06 and P = 0.032. No further significant variations were found in correct item response by experience, or time spent with palliative patients, or terminal patients.
There were statistically significant differences in palliative care law knowledge between the experience groups, F (2,163) = 3.83 and P = 0.024. [Table 2] shows the mean palliative care law score (out of 30) for each level of experience and unit. Post hoc differences were examined with Bonferroni t-tests. The group with 5–10 years' experience demonstrated better palliative care law knowledge (mean = 24.51, standard deviation [SD] = 3.25) than <5 years' experience group (mean = 22.54, SD = 4.26). The effect size indicated that this difference was medium to large, unbiased Hedge's g = 0.50 (95% confidence interval [CI]: 0.11–0.89). There were no further statistically significant differences between the experience groups.
|Table 2: Mean palliative care law scores by years of experience and units|
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There were statistically significant differences in palliative care law knowledge between units, F (4,163) = 2.77 and P = 0.029. Post hoc differences were examined with Bonferroni t-tests. Doctors in subacute units (mean = 4.04, SD = 4.39) and critical care (mean = 24.27, SD = 40.6) had better scores than surgical doctors (mean = 21.00, SD = 3.79). The effect size indicated that these differences were large, unbiased Hedge's g = 0.73 (95% CI: 0.19–1.27) for subacute versus surgical units, and unbiased Hedge's g = 0.82 (95% CI 0.28–1.37) for critical care versus surgical units. The remainder of the units (general medicine, oncology, and acute specialty nononcology) did not demonstrate statistically significant differences.
There were no statistically significant differences in palliative care law knowledge based on time spent looking after patients “palliative” or “terminal” patients, based on the study definition.
| Discussion|| |
Consistent with other similar studies, we found poor knowledge of key legal frameworks surrounding end-of-life decision-making and several important areas of concern. Naturally, this impacts clinical decision-making and contributes toward unnecessary physical and psychological harm for patients, carers, and clinicians.
In line with the old legislations, Section 8 of the new act reinforces that clinicians are not required to provide futile treatment. Medical futility is a subjective concept, defined as “a clinical action serving no useful purpose in attaining a specified goal for a given patient.” The “Consensus Resuscitation Form” is the health service's version of what is otherwise commonly known as a “Resuscitation Plan.” It documents appropriate ceilings of care and with whom this has been discussed. While there is no legal obligation to obtain consent, this form is ideally completed following discussion with the patient and their SDM to respectfully guide patients or SDMs who are requesting futile treatments that offer greater harm than benefit.
In our study, a significant proportion (32%) of doctors felt obliged to provide medically futile treatment at the request of the patient and 19% at the request of the SDM. Similarly, a qualitative study on doctors' knowledge of futility and the law found that 35% of doctors believed that patient consent was required to withdraw or withhold futile treatment. This also corresponds to a systematic review that found a third of patients received futile treatment in the last 6 months of life. Reasons for providing futile treatment are that doctors fear legal consequences in response to refusing demands for treatment, and many doctors practice defensively. Some doctors provide a range of treatment options to avoid uncomfortable discussions about dying, while others provide futile treatment as a means to help patients maintain hope.
Most patients are unlikely to know the exact legal requirements in terms of provision of futile treatment nor the clinical ramifications that they may experience as a result of receiving futile treatment. In practice, it is common for a patient to ask for “everything to be done” but at the same time want to avoid medically futile treatments – although by doing this, they unintentionally convey a demand for all treatments to be applied to them. Without an open discussion between patient and doctor, the goals of each party cannot be properly established, and when doctors are not clear on these legal requirements, they may direct futile treatment simply from an unexplored basic overarching patient request.
Improved education targeted at the clinician to improve knowledge and confidence regarding obligations on offering futile treatment could avoid unnecessary harm and help navigate these complex yet common decision crossroads.
Refusal of palliative care
In line with the old legislation, “Palliative Care” is defined in the new act as “the provision of reasonable medical treatment for the relief of pain, suffering and discomfort,” and “the reasonable provision of food and water.” Palliative care may be provided with or without a designated palliative care team. Competent patients can decline palliative care, provided an informed decision is made to decline the medications or interventions offered. However, when a patient is not competent, palliative care may be provided despite the refusal by the SDM, provided the values and preferences of the patient are considered.
Patients may refuse palliative care for several reasons. A qualitative study exploring this found key reasons include patients not wanting to acknowledge death, a misunderstanding that palliative care is for the last few days of life, and a misperception that palliative care hastens death. The intent of the law concerning refusal of palliative care is to uphold patient autonomy, but still protect vulnerable patients without capacity against unnecessary suffering. The majority (87%) of doctors correctly believed that a competent patient can refuse medications to alleviate distressing symptoms at the end of life. Interestingly, those who worked more closely with dying patients were less likely to correctly identify this. A third of doctors (31%) incorrectly believed that in a noncompetent patient, the SDM can decline palliative care. This again represents doctors' confusion between the powers of the competent patient and their SDM.
On our study, junior doctors (<5 years' experience) were the least knowledgeable group. Knowledge on end-of-life legislation seemed to improve with time, peaking at 5–10 years' experience. Although other studies have shown improved knowledge with greater experience,, our cohort did not demonstrate superior knowledge among doctors with >10 years' experience. Along with poorer general overall knowledge, this latter group was also less likely to know that completing the consensus resuscitation form was a medical decision. This is an important finding, as this group is more likely to include consultants responsible for educating junior staff on decision-making and setting goals of care. Poorer knowledge among senior medical staff may perpetuate the provision of futile treatment and promote late institution of appropriate palliative measures.
As expected, doctors who have more contact with palliative patients are more knowledgeable on the legislation, regardless of the specialty unit. Stratified by unit, doctors in subacute units (palliative care, aged care, and rehabilitation) and critical care were more knowledgeable compared to surgical units. This is also an important finding, as surgeons are responsible for performing and withholding invasive procedures which carry important sequelae.
Finding the advance directive
Half of the participants did not know where to locate the advance directive on the electronic medical record. Doctors spending >50% of their working hours with palliative patients were twice as likely to know where to find it.
Not being able to find the advance directive could significantly impair medical decision-making processes, especially when a patient is no longer competent and there is no SDM. Furthermore, the new act gives statutory recognition to advance directives, meaning doctors are legally obligated to respect these wishes. The inability to find the advance directive unnecessarily exposes doctors to legal penalties. It is important for health services to address systemic issues relating to where the advance directives are stored on the electronic medical record.
The study was done in Victoria, Australia, thus specific legislation may not be generalizable to other legislative areas; however, the lack of knowledge in this area and in specific groups is important to note and may be generalizable. The results may have been easier to interpret if responses were binary rather than graded; however, a large proportion of participants that did not confidently answer “Strongly Agree,” or “Strongly Disagree,” is an interesting finding in itself.
| Conclusion|| |
Clinician knowledge of end-of-life law is variable, and approximately at least a quarter of hospital doctors in this sample are practising with a poor understanding of the law in various domains. There was significant confusion regarding legislation relating to provision of futile treatments and refusal of palliative care. In particular, a third of doctors felt obliged to provide futile treatments on patient request. A third of doctors also would incorrectly withhold palliative care if an SDM was to decline this on behalf of a patient without capacity. Greater years of experience working did not necessarily correlate with better knowledge.
Incomplete knowledge of legal frameworks governing end-of-life decisions compounds the problem of unclear goals of care, which results in inappropriate treatments and compromises optimal palliative care provision. This negatively affects patients, caregivers, and clinicians and may add toward pain and suffering.
Echoing findings from other studies in this area, educational needs are greatest among junior doctors, with a focus on training during medical school, and also as ongoing professional development in workplaces and conferences. Senior doctors, who hold the final decision-making and are responsible for training junior doctors, could benefit greatly from further education that could begin from addressing the simple key areas of legislation covered in this survey. Systemic issues of educating clinicians on where advance directives are located on the electronic medical record should be considered. To achieve better quality end-of-life care, the urgent call for education in this aspect is further highlighted. Future studies need to explore the most effective method for educating hospital doctors in this area.
We acknowledge the palliative care consultancy team at Eastern Health for their efforts in participant recruitment and data entry.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2]