Specifying WHO Recommendation: Moving toward Disease-Specific Guidelines

Background information

Patients with metastasized and inoperable or locally advanced and inoperable lung cancer have a mean survival time of less than 1 year and a 2-year survival rate of less than 15%. The mean survival time of patients with relapsing lung cancer after initial systemic chemotherapy is a few months. Therefore, the physical state of most of these patients deteriorates considerably within a short period of time despite standard chemotherapy or novel treatment options according to innovative clinical study protocols, and patients often suffer from burdening symptoms (e.g., pain, dyspnea) and psychosocial burden, which requires specialized PC.

Analogous to the WHO and American Society of Clinical Oncology (ASCO) recommendations for PC, the integration of PC is advocated early in the course of lung cancer therapy at time of diagnosis. Reasons for this are: (1) attainment of best possible symptom control and quality of life through conjoint interdisciplinary treatment, (2) provision of best possible cross-sector PC infrastructure to optimize home care, (3) comprehensive care for patients and proxies also in psychosocial and spiritual issues, (4) prevention of the patients' and proxies perception of being abandoned after tumor-specific treatment, (5) to ensure that patients and families know where to obtain specific support in case of problematic situations or symptoms in addition to the primary treating department, and (6) support of the primary treating oncology teams.

Timing and place of PC integration

Specialized PC is recommended regularly for all patients with lung cancer without curative treatment options, specifically for patients with metastasized and inoperable, locally advanced and inoperable, or relapsing lung cancer. Integration of PC is recommended shortly after starting tumor specific therapy (Table 1). In this context, initial PC should be delivered to the patient at the same place as specific treatment, which is the interdisciplinary outpatient unit of CIO or an oncology ward.

Terminology and infrastructure

PC assignments do not include supportive measures (treatment of side effects of tumor-specific therapy) or palliative therapies. These are tumor-specific interventions (e.g., chemotherapy or radiotherapy or surgical intervention) that primarily aim at prolonging life by modulating the progress of the disease. These therapeutic interventions are delivered by the particular specialty (e.g., hematooncology, radiotherapy, surgery; Table 1).

Depending on the patient's needs, the Department of Palliative Medicine provides inpatient unit, day clinic, consulting service, and palliative home care teams.

Is the WHO recommendation helpful to implement early integration of PC?

The necessity of this early integration of PC in the course of any life-limiting disease has become widely accepted among PC providers.^6–8 WHO states that “PC is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy.” ¹ However, the recommendation does not contain any further suggestions about how this could be accomplished. Despite this shortcoming, our institution decided to include this recommendation in the administrative directives for principles of cancer care and to establish a palliative care hospital support team (PCST) following the European Commission recommendations to enable “early integration” into cancer disease trajectories. ² The PCST was set up in addition to the existing inpatient and home specialized PC service. The data from the experience of the first 2 years of early integration was analyzed. ⁵ The main finding of this evaluation was that our approach did not suffice to implement early integration. Specifically, despite the recommendation described above and the provision of a cross-sector PC infrastructure including a PCST, most patients were seen rather late in the course of the disease. This was reflected by the fact that a large number of patients died directly after the first PC consultation and that at the time of first contact to the PCST they were already in a reduced performance status or suffering from symptoms often associated with advance disease (e.g., dyspnea). ⁵ This is in line with the statement of the National Comprehensive Cancer Network (NCCN), which reported about the difficulty of implementing PC guidelines into everyday practice.^9,10

Decision for disease-specific PC SOPs

Because of the experiences described above, our interdisciplinary working group decided that the sole adoption of the WHO recommendation in the administrative guidelines plus the provision of a PCST in addition to preexisting home-care service and inpatient ward did not suffice to integrate PC early enough. Therefore, we decided to develop a PC SOP that would be adopted disease specifically for integration into the 19 cancer-therapy SOPs that had been developed previously for the vast majority of hematooncologic malignancies. This approach differs from the NCCN concept, which tries to trigger early PC integration by the expected survival time or symptom burden of the patients.^9,10 Yet, correctly identifying the expected survival time of a specific patient is often problematic^11,12 and using only symptom burden as a trigger for PC integration may lead to (too) late referrals.^3,13 Therefore, our institution decided to go for the development of disease-specific standard operating procedures (SOPs). Such guidelines should provide disease- and stage-specific points to institutionalize and ensure early integration of PC and provide information about PC assignments and competencies within the comprehensive cancer setting.

When should specialized PC be integrated (green flags)?

Paradigmatically, we presented the SOP for lung cancer in the section above. It specifically advises easily identifiable points in the disease trajectory when the therapeutic options are no longer curative.

By this, it provides a clear algorithm when to integrate PC. This is necessary since despite factual knowledge many clinicians are still afraid that patients with cancer and their relatives might be discouraged after talking to PC professionals.^14,15 Others do not perceive that the patients and their families benefit from the early integration of PC structures in their treatment. ¹⁶

What PC services should be integrated?

Although the integration of PC has become acknowledged to be imperative for the treatment of patients with cancer,^{12, 21} PC infrastructure has evolved differently around the globe. ¹⁷ While some countries traditionally support the development of palliative home-care services, others focus on in-patient care such as hospice and/or PC units. ¹⁸ Others argue that the implementation of PC consulting teams (hospital support teams, PCST) meet the needs of patients with cancer best. ¹⁹ To ensure that appropriate PC is available at all stages of the disease a cross-sector approach is being increasingly suggested. ¹⁸ Therefore, the SOP states that a PCST should be provided. The multiprofessional team consists of a qualified and specially trained PC nurse with long-term experience and a physician specialist in PC. The PCST is to meet patient in the same location as the oncology team (e.g., within the comprehensive cancer care outpatient unit) to ensure a familiar environment and “seamless” care. To coordinate the PC services, PC case management was established and the PC staff routinely attends the interdisciplinary tumor board meetings. Outpatients can also be cared for by our PC-trained nurses and specialized PC physicians by our outpatient palliative care team to support general practitioners and home care services. The inpatient PC unit has proved to be an essential component of specialized PC infrastructures to provide adequate support for severely affected patients.^23–25

Terminology

As von Gunten ¹⁷ and Cherny ²⁰ pointed out, a close look at terminology is crucial to successfully implement PC programs. As in other languages, in the German language it is important to distinguish PC expertise from supportive therapy or palliative therapy to prevent watering down of PC assignments, or therapeutic confusion.^17,21 It is becoming increasingly accepted that as treatment options for systemic cancer therapy are increasing rapidly, it is crucial to clearly distinguish specialized PC assignments from mere oncology.^22,23 Therefore, some red flags (Table 1) were included to avoid misunderstandings such as the confusion of PC with the provision of therapies primarily aiming at prolonging life. Accordingly, the SOP explicitly states that “PC assignments do not include supportive measures (treatment of side effects of tumor specific therapy) or ‘palliative therapies.’ The latter are tumor-specific interventions (e.g., chemotherapy or radiotherapy or surgical intervention), which primarily aim at prolonging life by modulating the progress of the disease. These therapeutic interventions are delivered by the particular specialty (e.g., hematooncology, radiotherapy, surgery).”

Perspective and limitations

Meanwhile, the IOPs of 19 other hematooncologic diseases decided to develop disease-specific PC SOPs based on the SOP presented here. To date, we are unable to provide data about the acceptability of this SOP and its impact on referrals to PC. The evaluation of this concept by a randomized controlled trial has been designed. Additionally, detailed disease-independent guidelines for PC skills, attitudes, and knowledge are being developed.

Although the authors hope to provide valuable information and initiate a discussion about the necessity to specify WHO recommendations, beyond such SOPs, future developments are necessary. These should aim at implementing PC as a mandatory component of cancer therapy, ensuring that beyond the mere provision of guidelines, PC attitude and culture becomes an integral part of patient care, and keeping palliative care a holistic attitude and approach that should not be limited to treatment algorithms.