The 5th edition of the Oxford Textbook of Palliative Medicine is dedicated to the memory of Prof Geoffrey Hanks, one of three founding editors of the textbook, who died in June 2013. With a legacy spanning almost four decades as a clinician, researcher, teacher and editor, Geoffrey was a man of great compassion, wisdom, and courage. While we are greatly saddened by his untimely death, we are inspired by his legacy.
The two decades since the first edition of this textbook have witnessed truly remarkable growth in palliative care. Such growth is challenging to master, and brings both uncertainties and optimism about the future. In this three-part series of articles, we’ll take a look at some of the complex and challenging issues of continuity, development, and evolution in the field of palliative care.
One of the early axioms of palliative care was that it sought to provide an alternative to ‘aggressive’ or ‘highly technical’ medical care. Indeed palliative care was often presented as ‘strong’ on care, ‘low’ on technology. In the sixties and early seventies, when these concepts were initially articulated, low technology options were indeed often the very best that could be offered to help relieve patient distress. At that time, there were very few truly effective palliative anti-tumour options beyond radiotherapy, endoscopy, and interventional radiology.
The extraordinary development of non-curative, but potentially beneficial interventions to address so many of the conditions, symptoms and complications confronted by patients, has created new opportunities, tensions, and dilemmas for palliative medicine clinicians.
New therapeutic opportunities
The last 20 years have seen dramatic changes in the non-curative treatment options for many of the conditions we encounter, particularly in cancer, HIV, and cardiology. These interventions have shifted the natural history of advanced illness. While they cannot cure, they have created new opportunities to prolong life while better controlling the ravages of disease. Some interventions may add months, others, possibly years to survival.
Whereas previously it was often the role of the palliative medicine clinician to present a counterpoint to the high morbidity and low likely benefit of chemotherapy, these developments have necessitated a change. Palliative medicine clinicians now must possess a more sophisticated understanding of disease-modifying palliative approaches for a broad array of common diseases. They must contribute to a discussion of the risks and burdens verses the potential benefits of these therapies, even as they encourage a broader understanding of the options for care.
New palliative interventions exist not only for specific disease states but also for specific disease complications. Endoscopic interventions and interventional radiology have radically broadened the range of options in the cases of obstruction of luminal structures. These approaches have altered the management of intestinal, biliary, ureteric, and bronchial obstruction, venous compression syndromes and, in select cases, pain management. Surgical approaches have made major contributions to the management of complications of cancer such as spinal cord compression, brain metastases, and impending fractures.
Concern is often expressed that the increased availability of technical interventions somehow diminishes from the ability to care, or from the heart of palliative care. The worry is that palliative care is being excessively “medicalized” or “professionalized”.
However, just as there is a romantic image of the nineteenth century physician at the bedside of his patient, who offers perhaps a tincture of opium but primarily provides comfort through his mere presence, there is also a tendency to over-romanticize the early days of palliative care. Today, we and the patients we serve have better therapeutic options to promote the pursuit of our common goals. Increasingly, palliative care services are integrated with oncology, respiratory medicine, cardiology, and other medical specialties, so that appropriate sophisticated treatments may be used with the intent of either palliation or life prolongation. This integrated approach needs careful discussion with the patient and their family, including clear information about the likelihood of benefits, risks and alternative approaches.
Many dying patients are not in a rush to die, and their desire for life-prolonging treatments is understandable, and often within the bounds of potentially appropriate medical care. Although the World Health Organization’s definition of palliative care includes the statement that palliative care “intends neither to hasten nor postpone death,” one must recognize that there is a difference between prolonging dying and prolonging a life in the face of incurable illness. Unfortunately, this distinction is often confused, leading people to believe that non-curative disease modifying drugs or other high tech palliative interventions are not part of palliative care. The consequence of this confusion is substantial. Indeed, some patients are denied palliative care services because they are interested in these interventions or treatments, and others are denied access to treatments that would otherwise serve their goals of care because they are in a palliative care clinical pathway.
In some countries, service delivery models for palliative care were developed with the aim of offering a more cost-effective way of managing patients with incurable illness. Many programs are budgeted based on assumptions of great savings for the health care funders.
Cost savings is not a primary objective of palliative care, but it may be an unintended consequence of a focus on medically-appropriate care guided in shared decision-making by an informed patient and family. It is essential that policymakers understand this principle and also accept that cost savings is an aggregate concept. For some patients, palliative care is not inexpensive. Specialist palliative care always requires intensive skilled human resources, with adequate staff to allow for the provision of individualized care, and it may require costly technology or pharmaceuticals.
When a system of palliative care is supported in a capitated model, financial sustainability requires careful management of the care and a large enough group to benefit from a risk pool. In the United States, many hospices are small and are forced to limit access or deny treatment with accepted palliative interventions because reimbursements are too low. Even large hospices with access to a substantial risk pool cannot offer modern chemotherapy and targeted therapy for cancer, even if the treatment is clearly palliative and minimally life-prolonging. It is unknown how systems like this one and many others around the world, predicated on payment models that have not yet adapted to the evolving nature of palliative care, will cope with an ever-increasing need for services. The developed world has resources, but redistribution of funds to underwrite the development and dissemination of specialist palliative care is needed. Identifying the means to pay for this necessary care is among the greatest challenges we face.
Read the first two parts “Facing the challenges of palliative care: continuity” and “Facing the challenges of palliative care: development”.