Professor, Palliative and Supportive Services, Flinders University, Adelaide, Australia.
Chief Cancer Officer, New South Wales, Australia.
Chief Executive Officer, Cancer Institute of New South Wales, Eveleigh, New South Wales, Australia.
The Tom Reeve Award for Outstanding Contributions to Cancer Care, offered annually by the Clinical Oncology Society of Australia (COSA), formally recognises a national leader who has made a significant contribution to cancer care. Since its inception in 2005, when the inaugural Award was presented to Professor Tom Reeve himself, there have been nine recipients from diverse cancer disciplines.
In its 10th year of this prestigious Award, the 2015 recipient of the Tom Reeve Award was Professor David Currow. Professor Currow is the Chief Cancer Officer, NSW and Chief Executive Officer, Cancer Institute NSW, the NSW Government’s cancer control agency. He was appointed to the position in March 2010. Prior to that he was the foundation Chief Executive Officer of Cancer Australia, the Commonwealth’s cancer control agency.
Professor Currow accepted the Award at the COSA Annual Scientific Meeting in Hobart on 18 November 2015 and delivered an inspiring and meaningful oration that challenged the audience to consider their personal and professional perspectives on end of life care.
“It’s satisfying to see how far we have come, and to think about where we can go towards improving cancer patient care and treatment.” Emeritus Professor Tom Reeve CBE, AC. Cancer Forum. October, 2013
Patients with life-limiting illnesses such as cancer are able to simultaneously hold hopes and wishes often even in the same sentence – hope for something that is likely to be achievable and wishing for things that are highly unlikely, yet still bear talking about. The level of insight this reflects and the level of courage to acknowledge both is remarkable at such a potentially traumatic time in a person’s life. How do we honour patients’ hopes and their wishes to ensure that they can make the most of whatever time people have?
To try and understand what this may look like, what would each of us change were we to learn that life was suddenly very finite? Priorities in this setting are interesting. For example, lots of people who are employed continue to work, but not because they need the money. In part, work defines who they are. Most people reprioritise to spending as much time as possible with family and friends.1 For most people, good symptom control is a means to an end – quality time with the people who mean the most to them – and not an end in itself.
Many of us have been at the bedside of thousands of people facing death. What have our patients taught us about caring for people at the end of life in order to continually improve our care? How do we ensure that the care that they get is the best possible care, and that we focus on the things that will best support patients and their caregivers in order to optimise outcomes? Clinicians and the health system can learn a great deal about the care that we offer from people as they face the physical decline associated with late stage disease. By carefully listening to people facing death, we can find key ways to improve the care that we offer and the way that it is delivered to all patients, not simply those at the end of life.
Don Berwick, now head of Institute for Healthcare Improvement, was formerly the head of the Center for Medicare and Medicaid Services, providing the funding to 95% of Americans over the age of 65 and a high proportion of the most socio-economically disadvantaged people in the rest of the population. With such a critical role in the health of the nation, it may have been surprising that he wrote an open letter when he was due to have a knee replacement in 2005.2 In this article, he started to outline a patient-centred manifesto for a good health care system. In this personal plea, he was keen to ensure that avoidable mortality was addressed, that the things that were done in the name of clinical practice were likely to benefit him, that needless pain could be avoided, that people were not made to feel helpless, that his time was valued by not keeping him waiting and that resources were not wasted.
Subsequently, this manifesto was expanded and slightly reworded. Relief of pain was clarified to include both physical and emotional pain. Ensuring that people did not feel helpless was juxtaposed with the need for clinicians to actively share information. Waste appeared at a personal level (‘don’t do things that cannot help me’) and at a systems level (‘don’t waste resources – mine or anyone else’s’). This lecture focuses on concepts from Don Berwick: firstly ‘don’t hurt me’ and ‘relieve my physical and emotional pain’; and secondly ‘don’t make me feel helpless’ and ‘share information’.
It is frightening that patients need to tell us that symptom control is important. The studies from the 1980s on post-operative analgesia when a regular prescription was compared with pro re nata prescribing are very telling – people after major surgery were provided with very little analgesia.3 Yet even 30 years ago, it was known that good analgesia helped to improve patient outcomes directly – out of bed sooner, out of hospital sooner, few complications, quicker recovery.4
In 2015, people are still telling us that physical symptom control is poor and yet we have a strong evidence base that, when used, it ensures predictable and safe symptom control for almost all people. People’s psychological wellbeing is also something which patients want to tell us is not looked after as well as they hoped.
Symptom control and the ability to look after oneself for as long as possible are important patient-centred goals.1 How much effort across cancer services is focused on optimising people’s physical functioning – during and after therapy or when physical decline is apparent at the end of life? Yet, patients consistently tell us that the ability to care for themselves is highly valued throughout their life, including at its end. Cancer and palliative care services have systematically under-invested in ensuring people’s physical independence is a key goal of care. Rehabilitation services have often been difficult to engage in this process, often citing funding models that do not support better maintenance of current function in the face of predictable decline. With physical symptom control and physical independence optimised, people at the end of life can focus on the important work at the end of life – spending time with people they love and care for. Optimising function and physical comfort allows for people to be themselves and focus on things that they value – dignity, humour, being treated as a whole person – the things that make each of us who we are.1
But there are real challenges even in eliciting people’s physical symptom burden. We were taught to ask open-ended questions, and we have (mostly) learnt that lesson very well. Yet the comparison between patients’ responses when asked about symptom control with open questions and the use of a systematic symptom screening tool is dramatic.5 One tenth as many symptoms are elicited when only open questions are asked compared to using a simple screening tool. Of great concern is that 69% of symptoms whose intensity was rated as ‘severe’ or ‘very severe’ were not reported in response to open-ended questions. The proportion was even higher for not reporting distressing symptoms – 79%. Together such figures challenge our current models of care and ask that we focus urgently on patient-reported measures every time we have contact with patients.5,6,7
In Australia, recent work paints a picture of less-than-ideal symptom control despite contacts with health services. A consecutive cohort of patients and caregivers were asked to fill out a questionnaire on current symptom control using the Palliative Outcomes Scale.8 One thousand eight hundred respondents from 49 palliative care services nationally responded.9 One in four patients reported ‘severe pain’ despite having contact with a specialist service, well above the rates of pain control that should be seen when guided by what can be achieved in the literature.10 Likewise, one in five people have other symptoms that patients rated at ’severe’ or’ ‘overwhelming’.9 A high prevalence of distress was not limited to patients. One in five caregivers identified that they were experiencing ‘severe’ or ‘overwhelming’ anxiety. Such distress at such a challenging time of life suggests that there is much more to do to improve outcomes for patients and the people who provide almost all of their care.
At a national level, Australia is in a unique position in seeking to understand and improve its performance in delivering palliative care.11 The national initiative – the Palliative Care Outcomes Collaborative – has now been collecting point-of-care data since 2006 and coverage now includes more than 85% of all people referred to specialist palliative care services in the country. It spans direct inpatient care, inpatient consultations, outpatient clinics and community-based care. Most importantly, these data tell us that we are able to systematically improve the care that is offered, with significant improvements in all domains in the last three years (2012-14) building on significant improvements in all domains except pain in the previous three years (2009-11).12 Continued improvements need to be made, but this program demonstrates that this can be achieved.
Some of the angriest patients I have ever seen were not angry because they had cancer, nor necessarily because their cancer was progressing. They were angry because they felt cheated. Clinicians they trusted had not outlined (or outlined in a way that they could hear) that their prognosis was now limited or, in some cases, very limited. These people felt that one of their most precious commodities – time – had been stolen from them. Most importantly, they were adamant that they would have used the time they lost very differently if only they had known that their life-expectancies were so limited. Of course, this is not to say that conversations about prognosis between treating clinicians and patients had not taken place – but we can say that these patients had not heard the message in a way that could inform really important decisions.
As clinicians working with people who have advanced cancer, we have really good signposts about how each person’s disease is progressing and how the systemic changes help to inform their prognosis. Rate of change in functional status has been confirmed as a factor that adds to the accuracy of an individual’s prognosis.13 Along with consideration of the person’s co-morbid conditions, evidence of the systemic manifestations of uncontrolled cancer (anorexia, weight loss and fatigue) and the natural history of that particular cancer, the rate of changing functional status, form a way of generating a prognosis with high levels of accuracy if the broad measures of time (days, days to weeks, weeks, weeks to months etc.) are discussed with the patient.14
The other factor that can assist in helping to refine estimates of prognosis is whether the person has a special event to which they are particularly looking forward. Evidence does exist that such occasions do influence the timing of death at a population level.15 With all of these factors, a reasonable estimate of prognosis can be discussed with a patient and their family.
Providing a prognosis is not always about breaking bad news. Some people have a very pessimistic view of their life expectancy. Equally, at times, discussing a longer-than-expected prognosis is not always met with a positive response. Sadly, providing any prognostic information to patients with advanced cancer is not something that physicians who work daily with this population necessarily do well. One study from the United States reported that 28% of clinicians would provide a conscious over-estimate, 22% would disclose no prognostic information and only 37% of clinicians would provide a frank estimate.16 How would any of us feel drawing on the expertise of another professional – architect, engineer, account, lawyer – if their most honest estimates were only conveyed one in three times? Any of us would walk away in disgust, but this is the approach of many practising clinicians. With knowledge of a likely prognosis, where is the intellectual honesty if that knowledge is not shared in a timely way in a language that the patient can understand and assimilate?
Caregivers remain the other group for whom discussions around the future care needs of the patient and the timelines for that care are really important. The impact of caregiving is seen during the role and in the years after the role has been completed.17 Most notably, there is an association between improved caregiver survival at 18 months and the use of community-based palliative care supports.18 Evidence exists at a population level of an association between better met informational needs for day-to-day hands-on caregivers and accessing palliative care services.19 Outcomes suggest real differentials at a population level between caregivers who do and do not access specialist care services, with significantly higher rates of ‘moving on’ with life up to three years after care was completed in those who used specialised palliative care services.19
Australian data confirm that family and friends who provide care at the end of life are not always willing to provide that care again were the opportunity to arise once more.20 Predictors of lower rates of being willing to provide this care again included lower educational levels and increasing age. Given the almost absolute reliance of the health and social system on family and friends to provide care for people with advanced cancer, and the fact that most of us will be asked to do this more than once in lifetime, this finding has far reaching implications.21,22
Ultimately, there is an opportunity systematically to improve the quality of care provided to patients and the level of support offered to the families and friends who provide care for them. This requires a vigilant approach to building a health care system directly around the needs of patients and their families – at every clinical encounter. This is currently aspirational, but it is the expectation of the people we serve. As patient reported measures – experience and outcomes – are more widely collected and reported, the need for every clinician to focus on each individual person will become greater. The challenge is whether we as a clinical community can deliver this. The opportunity is that patients and their families know the difference when we get it right.