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Putting palliative care at the heart of the cancer pathway

Nathan I Cherny
1 July, 2006  

Nathan I Cherny
MB BS FRACP
Director
Cancer Pain and Palliative Medicine
Department of Medical Oncology
Shaare Zedek
Medical Centre
Jerusalem, Israel

Cancer patients with advanced and incurable disease are as much the responsibility of oncologists as those whose disease is potentially curable, according to the European Society of Medical Oncologists (ESMO). Oncologists must take responsibility for, and be skilled in, the care of their patients who cannot be cured, and this responsibility extends beyond the point when anticancer treatments may no longer be helpful.

As the editorial heralding the ESMO policy statements declares: “The division of cancer care into an initial trial of primary anti-tumor therapies followed by hospice or palliative care for patients who have progressive disease is anachronistic. Since the goals of medical oncology extend beyond the reduction of tumor burden and the deferral of death to incorporate a qualitative dimension, there is need for a continuum in patient care in which both primary therapies and supportive and palliative interventions are tailored to the clinical circumstances of the patient.”(1)

The care of patients with advanced and incurable cancer occupies a major part of most oncologists practice.(2) This comes as no surprise given that the cure rate for cancer is around 50% and that cancer continues to account for over 25% of all adult deaths.(3) ESMO recognises that a great many patients will not be cured, and that for them the issues regarding the quality of their remaining time is critical, irrespective of the duration of survival.

It has been almost five years since ESMO established a special working group to address the relationship between medical oncology and supportive/palliative care. No one at the time would have anticipated the impact of this initiative. Since then, ESMO has clarified and ratified definitions of supportive and palliative care (Box 1), defined the responsibilities of the oncologist in the provision of palliative and supportive care (Box 2) and established minimal standards for cancer centres (Box 3).(2) These policies are binding upon all individual members, associated organisations and bodies and affiliated centres.

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ESMO has also outlined training requirements for oncologists in relation to the supportive and palliative aspects of patient care. Specifically, nine core skills have been drawn up, as outlined below:

1. The oncologic management of advanced cancer
Medical oncologists must be expert in the appropriate use of antitumour therapies as palliative techniques when cure is no longer possible. This includes specific familiarity with key concepts of patient benefit, quality of life and risk/benefit analysis.  

2. Communication with patients and family members
Medical oncologists must be skilled in effective and compassionate communication with cancer patients and their families. Specific skills include:

  • Explaining diagnosis and treatment options.
  • Disclosure of diagnosis.
  • Explaining issues relating to prognosis.
  • Explaining the potential risk and benefits of treatment options.
  • Counselling skills to facilitate effective, informed decision-making.
  • Explaining the role of palliative care.
  • The care of distressed family members: fear, anticipatory grief, bereavement care.
  • Convening of family meetings.

3. The management of complications of cancer
Medical oncologists must be expert in the evaluation and management of the complications of cancer, including:

  • Bone metastases.
  • CNS metastases: brain and leptomeningeal metastases.
  • Neurological dysfunction: primary, metastatic, paraneoplastic and iatrogenic.
  • Liver metastases and biliary obstruction.
  • Malignant effusions: pleural, peritoneal and pericardial.
  • Obstruction of hollow viscera: oesophagus, airways, gastric outlet, small/large bowel, ureters.
  • Metabolic consequences of cancer.
  • Anorexia and cachexia.
  • Haematologic consequences: anaemia, neutropenia, thrombocytopenia, clotting diathesis.
  • Sexual dysfunction.

4. Evaluation and management of physical symptoms of cancer and cancer treatment
Medical oncologists must be expert in the evaluation and management of the common physical symptoms of advanced cancer, including: pain; dyspnoea and cough; fatigue; nausea and vomiting; constipation; diarrhoea; insomnia; and itch.

5. Evaluation and management of psychological and existential symptoms of cancer
Medical oncologists must be familiar with the evaluation and management of the common psychological and existential symptoms of cancer, including: anxiety; depression; delirium; suicidality and desire for death; death anxiety; anticipatory grief.

6. Interdisciplinary care
Medical oncologists must be familiar with the roles of other professions in the care of patients with cancer and with community resources to support the care of these patients.

7. Palliative care research
Medical oncologists must be familiar with research methodologies that are applicable to patients with cancer, including:

  • Quality-of-life research.
  • Pain measurement and research.
  • Measurement of other physical and psychological symptoms: dyspnoea, fatigue, nausea and vomiting, depression and anxiety, desire for death.
  • Needs evaluation.
  • Decision-making research.
  • Palliative care audit.

8. Ethical issues in the management of patients with cancer
Medical oncologists must be familiar with common ethical problems that arise in the management of advanced cancer and ethical principles that assist in their resolution:

  • Ethical issues related to disclosure of diagnosis and prognosis.
  • Ethical issues in decision-making: paternalism, autonomy, informed consent.
  • The right to adequate relief of physical and psychological symptoms and its implications.
  • Consent: informed, uninformed.
  • Ethical issues at the end of life: sedation for refractory symptoms, hydration and nutrition at the end of life, DNR, use of invasive palliative approaches.
  • Foregoing treatment.
  • Euthanasia, assisted suicide.

9. Preventing burnout
Medical oncologists must be familiar with the symptoms of burnout, the factors that contribute to burnout and strategies to prevent its development.

Delivery problems
Policy statements are not enough. ESMO knew it had a problem in the actual delivery of palliative care by many oncologists, and it wanted to know exactly what and how widespread those problems were. To this end, the organisation surveyed its membership to evaluate the attitudes and actual practices of ESMO-affiliated oncologists. This survey, the most comprehensive of its kind, found that as a whole ESMO oncologists had very favourable and appropriate attitudes with regard to their responsibilities in the provision of supportive and palliative care.(2) Overwhelmingly, they saw it as their responsibility and they expressed commitment to continuity of care and to the provision of high-quality end-of-life care in cooperation with other healthcare professionals. On the downside, however, the survey found that there was a substantial gap between expressed beliefs and actual practice. For example, whereas 88.4% of respondents agreed that medical oncologists should coordinate the care of cancer patients at all stages of disease, including end-of-life care, in practice only 43% of respondents reported that they commonly coordinate the care of cancer patients at all stages of disease, including end-of-life care, less than 50% collaborate commonly with any supportive/palliative care clinician (including social workers), only 39% commonly coordinate meetings with the family of dying patients and only 11.8% commonly manage delirium (despite the high prevalence of this problem among patients with far advanced cancer). Interestingly, whereas 60.4% of respondents reported that they were expert in the management of the physical and psychological symptoms of advanced cancer, only 37.0% said most oncologists they knew were expert in the management of the physical and psychological symptoms of advanced cancer.

Importantly, the survey highlighted that these was a close relationship between negative attitudes towards palliative care, lack of personal care delivery, lack of consultation with palliative care colleagues from other disciplines and a “catastrophic fear” of burnout from involvement in end-of-life care. Those clinicians with the greatest fear did the least and had negative attitudes, and not only did they not provide care, but they did not refer or consult with appropriate clinicians expert in end-of-life care. ESMO hopes that its new education policy will better prepare oncologists for these aspects of care.

ESMO recognises that oncologists work in a clinical context – some in private clinics, but most in hospitals and cancer centres. It is incumbent upon cancer clinics and hospitals to provide the infrastructure and support needed to ensure adequate supportive and palliative care. Every patient with advanced, potentially life-threatening illness must have access to a social worker to help evaluate emotional and social coping and to assist in coordinating care. Many patients will need ambulatory or inpatient care to manage physical or psychological symptoms, and some will need access to inpatient end-of-life care. These aspects will need interdisciplinary cooperation that will often incorporate palliative care or hospice specialists. Not all patients needing inpatient end-of-life care can or will be cared for in oncology departments, but the treating oncologist must ensure that this aspect of care is carried out with sensitivity and expertise. Dying patients must not be abandoned or be allowed to “fall between the cracks of the system”. Consequently, the third of its policy statements decries minimal standards for supportive and palliative care to be provided by cancer centres (Box 3). This policy applies not only to major comprehensive cancer centres, but also to private clinics and hospital-based services.

Conclusion
The steps taken are a beginning. ESMO recognises that it is trying to change a culture of care. Making palliative care a normative part of oncology practice, no less than the administration of chemotherapy or antiemetics, is going to take time, energy, initiative and reinforcement. ESMO regards the incorporation of supportive and palliative care into routine cancer care as an expression of “good clinical practice”. For oncologists, neglecting the issue is not an option and, indeed, it verges on malpractice.

Along with the policy statements, ESMO has undertaken a series of educational and incentive programmes to further promote this important endeavour. ESMO has further devised an incentive programme to give special recognition to cancer centres that provide a high level of palliative and supportive care as an integral part of their cancer services.

References

  1. Cherny NI, Catane R, Kosmidis P. Ann Oncol 2003;14: 1335-7.
  2. Cherny NI, Catane R. Cancer 2003;98:2502-10.
  3. Jemal A, Thomas A, Murray T, Thun M. CA Cancer J Clin 2002;52:23-47.