Department of Palliative and Supportive Services, Flinders University
Director, Southern Adelaide Palliative Services, Adelaide, SA
In this edition of Cancer Forum, five authors examine the interface between oncology services and palliative services from differing perspectives. The interface has changed substantially as both areas have developed in the past three decades. For optimal patient, family and staff outcomes, there is more that can be done to effectively utilise the expertise of the wide range of clinicians and disciplines that should be involved in the care of people with cancer1.
Although there have been advances in changing the course of cancer, for the population at large, the diagnosis of cancer is still inextricably linked with death. For 50% of people with cancer (other than non-melanocytic skin cancers) this is still the case. Although for many cancers, increased rates of cure have occurred in the past 25 years, living longer with cancer is one of the outcomes with which we have yet to come to terms fully.
Thinking beyond terminal care alone, many palliative clinicians have the ability to support people through their fears at and around the time of diagnosis. Talking of symptoms to a palliative care clinician is less likely to be seen as something which will result in curative or life-prolonging treatment being withdrawn. Talking to someone other than your primary treating oncologist (who may be perceived as the gatekeeper to active anti-cancer treatment) may be a safer place to reflect on fears. This role of supportive care is growing around the world.
The right combination of professional carers is also very important. Few of us in clinical practice would pretend that we can provide all of the care ourselves, yet many of us are still reticent to explore the breadth of the impact that cancer, its treatment and ultimate outcomes has on patients, their families and our fellow staff. We have often not been strong enough advocates for a true interdisciplinary approach to patients and their families at this challenging time. The opportunity afforded by involving and learning from different disciplines as a quality improvement mechanism is not fully utilised by many cancer services that remain fragmented and uncoordinated. Unless the mechanisms have been negotiated for excellent communication, such teamwork is unlikely to be established or survive.
In thinking about the disciplines that need to be involved, the comments are not limited to different brands of oncologists or the inclusion of a nurse in the discussions. The inclusion of rehabilitation and pain specialists are such examples2. (The nexus between pain and cancer is not as widely understood as we may think. When the National Health and Medical Research Centre (NHMRC) Acute Pain Guidelines were distributed, oncologists and palliative physicians were not included in the mail out. If you would like to look at chapters relevant to cancer or supportive care (chapters 4 and 8), please go to the website3.)
The involvement of occupational and physiotherapists, dietitians, speech pathologists and social workers still does not have enough emphasis. Sharon Bover and Tracey Quarmby reflect on some of the models and potential benefits from the better involvement of allied health in this clinical setting.
The inclusion of a psychologist with their contributions to this area of clinical care emerging in the literature is still seen as a luxury for many services, not an integral part of care4. Psychiatrists have a wealth of experience to add to the care of people with cancer, yet the links are still ad hoc for many cancer services nationally5. With mounting evidence for a change in outcomes from adequate psychological support and, where appropriate, psychiatric support, in people facing cancer, resources need to be examined in the broad context of cancer services. Where does a unit spend $50,000 of new recurrent funding? More chemotherapy? Another member of the administrative team? A clinical psychologist with a broad palate of interventions and a special interest in cancer to bring to the bedside?
In practice, how can this interface be generated? Patient-defined needs are complex. People bring to the crisis of the diagnosis of cancer all the baggage of their life – their hopes and fears, successes and failures6. Support at this time requires a detailed focus on the whole person. Communication is everything in this process and mechanisms that support this should be fostered.
Generating a team that can cope with the complex and changing needs of patients and their families is at the crux of good care in the twenty-first century7. Paul Glare and Stephen Clarke outline some of the models for the interface between cancer services and palliative or supportive services. Sanchia Aranda and Donna Milne suggest further refinements to the interface. Formal evaluation of these models, their benefits, burdens and cost effectiveness have yet to be done8,9.
The role of the primary clinical carers (nursing and medical) is highlighted by Greg Crawford. Recognising from the outset their pivotal role in providing care to which other health professionals can contribute changes the way care is offered. Often, general practitioners have enjoyed a long relationship with the patient, and are able to provide continuity and, when oncologists (medical, surgical and radiation) don’t coordinate care with each, fill this role too.
Within the broader community, there are groups for which health outcomes are not as good. In many communities, the rates of cancer are higher per head of population, rates of early detection and presentation lower, and treatment options limited. In Australia, geography alone will almost certainly limit choices for early detection, multi-modality treatment and community-based support. There are additional challenges addressing communities where cancer may have a particular negative meaning. For example, in some cultures, it is seen to be a specific curse. Confirmation of the diagnosis in this setting may be difficult, even late in the clinical course of the disease. If there are cultural and language barriers that influence options available to the population, then outcomes will not improve without these issues being addressed in a sensitive but systematic way. Ofra Fried, whose day-to-day work encompasses many of these challenges, writes for this edition of Cancer Forum.
At the same time, it is not enough for palliative service providers to ask that patients and their families are referred earlier (and hopefully not in crisis) without ensuring that they are up-to-date with the clinical decisions and service provision of the referring oncologists. Palliative service providers have an onus on them to be excellent clinicians; up-to-date not only with the symptom control and psychosocial issues, but also disease modifying treatments, their benefits and morbidities. Interdisciplinary clinics demand not only expertise in one’s own area, but current knowledge of the other disciplines represented. Patient advocacy in such a setting is a balance of the available evidence for the cancer being treated, the co-morbidities that the patient has and the patient’s own preference.
A fresh set of eyes can be a wonderful thing. The longer we know a patient, the more is assumed and often we fail to have important issues drawn to our attention10,11. Further, the longer we have known a patient, the more likely our prognostication will be overly optimistic, whatever else is happening in their illness12. The risk of missing these signposts is probably reduced by a review of that patient by someone who hasn’t met them before.
What ultimately is our role in health care? One can argue that it is about healing, a word that is not synonymous with cure. As health care professionals, trying to influence the process of healing is often difficult given the constraints that our service models inherently have. If we are committed to the care of the whole person, where every interaction has the opportunity to improve health, then we will continue to better meet the needs of those whom we are here to serve.
Optimising the relationship between oncology, supportive and palliative services can only add to the quality of the care that we offer. Teams, as living organisms, need energy and commitment. As with any team, recognising the strengths and weaknesses that each player brings to the care of that particular patient is an essential part of planning care. Providing structure and support for teams to work together is something that will pay dividends.
The continued evolution of both oncology and palliative services dictate that the interface will need to continue to change. Properly structured, both add greatly to the care of patients, their families and staff with cancer.
1. K E Steinhauser, E C Clipp, M McNeilly, N A Christakis, L M McIntyre, J A Tulsky. “In search of a good death: observations of patients, families, and providers.” Ann of Internal Medicine, 132 (2000): 825-32.
6. K E Steinhuaser, N A Christakis, E C Clipp, M McNeilly, L McIntyre, J A Tulsky. “Factors considered important at the end of life by patients, families, physicians, and other care providers.” JAMA, 284 (2000): 2476-82.
11. C J McPherson, I J Higginson, J Hearn. “Effective methods of giving information in cancer: A systematic literature review of randomized controlled trials.” Journal of Public Health Medicine, 23, 3 (2001): 227-34.