Thinking back to high school science, we learnt that an interface was a term used in chemistry to mean “the surface separating two phases”. That the concept of an interface – with its implication of barriers and immiscibility – has been applied to the oncology-palliative care nexus is not surprising, as historically the two have always been separate. Contemporary palliative care services have their origin in the British Hospice Movement (BHM), which arose in the 1960s out of a reaction to the sense of abandonment created by oncologists-of-the-day when they told their incurable patients “Sorry, there’s nothing more we can do for you”.
We now live in the electronic era, and the word interface has taken on a somewhat different meaning to describe “the point at which two systems interact”, such as between a computer and some machine that it controls. In everyday parlance, interface is now used to reflect this sense of interactiveness and usually refers to communicating and exchanging ideas. The relationship between oncology and palliative care has also moved in this way, particularly in tertiary hospitals in Australia, where the plane of interaction between the two disciplines is broad.
The “mixed management model” of end-of-life care, proposed by the US Institute of Medicine (IOM) in its monograph Approaching Death takes this evolving concept further, seeing control of disease, symptom control, psychosocial support and advance care planning as the four components of a single endeavour1. In such a model of care, which is advocated for patients with eventually fatal illnesses from the time of diagnosis, any interface between oncology and palliative care is removed completely as the two concepts mix freely. It is unclear what the implications will be for oncology and palliative medicine will be if the mixed management model was to be adopted widely.
In this paper, these concepts are discusses in more detail.
The standard World Health Organisation model of cancer care has four phases: prevention, early detection, treatment and palliative care. Ideally, cancer should be prevented; if not, hopefully it can be detected early. Failing that, when it is detected at an advanced stage, effective treatment should be available. When this no longer works, there is pain relief and palliative care (see Figure 1). This is the traditional “sequential” model of palliative care, with palliative care becoming part of cancer care only after anti-tumour treatment options have been exhausted. In combination with the sense of abandonment of patients by the mainstream health care system, the sequential model led to the BHM being established outside the UK National Health Service (NHS). The issue of abandonment is raised here not to cause offense but merely to help understand why things happened they way they did. Thus, there has been a clear distinction between oncology and palliative care from the outset, and a chemistry-type interface has been easy to identify.
While the sequential model of palliative care was a definite improvement on the situation before the 1960s, it is extremely limited in the way in which palliative care is able to help patients, especially when palliative care services are situated outside the mainstream hospital setting:
Over the past 20 years, the limitations of the sequential model of palliative care have been recognised, and this has given way to more of a “concurrent” model. Pain, symptom control, psychosocial support and advance care planning are acknowledged as having a role at an earlier stage of disease and are provided concurrently with anti-cancer therapy (see Figure 2). The concurrent model has flourished where mainstream specialist palliative care services (SPCS) are available, such as in Australia’s tertiary hospitals, because these SPCS are made up of health care professionals who have some training in oncology and are therefore able to communicate and exchange ideas with the oncologists from the time of diagnosis2. Advice on the palliative care needs of patients undergoing cancer treatment in hospital is given, and in addition, palliative care is provided for those cancer patients who are admitted to hospital but for whom further anti-cancer treatment is not possible.
The realities of the concurrent model are reflected in the current situation of the Palliative Care Service at Royal Prince Alfred Hospital where approximately one-third of patients referred to the service are still pursuing disease-controlling therapy, the median survival after referral approaches two months and approximately 10% of patients survive more than six months. Reflecting the training of the SPCS personnel, biomedical aspects of the illness are emphasised under this model: physical symptoms are given priority and a mechanistic approach to assessment and therapy is adopted. Invasive procedures are carried out in many cases. Patients are even admitted to the tertiary hospital to receive palliative care.
Despite the interchange of ideas between the disciplines, the concurrent model is similar to the sequential model in some ways. The two disciplines are separate and there is still a linear sequence to thinking. Oncology and the emphasis on disease control dominate patient care in the earlier stages of the patient’s illness, while palliative care dominates in the latter stages. While the hospital’s Palliative Care Department is part of the Cancer Services clinical grouping administratively, it is clinically separate and is not involved in multidisciplinary clinics designed to plan cancer treatment.
For various complex reasons, mainstreamed SPCS as we understand them have never really caught on in the USA. Community-based multidisciplinary palliative care teams (usually comprising a nurse and a social worker and little or no medical input), which the Americans call “hospice”, are widespread but fit very much in the old sequential model: patients have to acknowledge they have a very poor prognosis (officially less than six months to live) and agree to forgo further anti-cancer treatment or hospital care to receive hospice services. Not surprisingly, the median survival after referral to hospice in the US is three weeks.
In 1996, the IOM convened a committee to address the deficiencies of end-of-life care in the US. As a result, the IOM published the committee’s report in the monograph Approaching Death. In the report a “mixed management model” of end-of-life care is proposed (see Figure 3). Essentially, it is predicated on three basic assumptions that affect the interface of oncology and palliative care:
1. The traditional transition of “cure to comfort” inherent in the sequential model rarely occurs anymore in the real world – patients want to pursue disease control and palliative care concurrently and equally throughout the duration of their illness, whatever its outcome.
2. Distinctions between treatments that are preventative, curative, rehabilitative and palliative are arbitrary. Bisphosphonates to prevent fractures, treat hypercalcemia and relieve pain are a good example of this.
3. High quality end-of-life care is the responsibility of all health care professionals and should not be left to specialists in palliative care to provide. Consequently this report has not recommended the recognition of palliative care/palliative medicine as a specialty in the US at this time but rather the education of all clinicians in the specifics of symptom control, psychosocial support and death preparation, as well as the delivery of disease-controlling therapies. In such a model of care, which is advocated for patients with eventually fatal illnesses from the time of diagnosis, the concept of interface is removed completely as the two “phases” mix freely.
While the first two points are indisputable and apply under the prevailing concurrent model the third point is contentious3. Can the present interface be totally removed? Can oncologists be expected to be experts in end-of-life care? Can oncologists try to control disease and prepare patients for death at the same time? Do patients and their families want to prepare for death while they are having anti-cancer therapy? What happens to SPCS in this model?
While the Royal Australasian College of Physicians has recently recognised palliative medicine as a specialty and created a Chapter of Palliative Medicine under its auspices, it is true that a small number of individuals in Australia are seeking dual qualifications in medical oncology and palliative medicine. Is this the beginning of the mixed management model here? We suspect that it is not and that for the foreseeable future the two will remain distinct. While that means there will always be an interface between the two, it needs to be an interface based on communication and the exchange of ideas and not a barrier between two immiscible substances.