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Integrating early palliative care (EPC) in the management of lung cancer: The role of the thoracic oncologist
Lung Cancer, Volume 90, Issue 2, November 2015, Pages 135 - 138
- Early palliative care (EPC) for lung cancer patients need to be implemented in standard oncological care.
- We determine the assignment for the thoracic oncologist in EPC.
- We give some practical tools how to start EPC in collaboration with the palliative team.
Early introduction of palliative care in the management of patients with metastatic lung cancer is recommended since it improves quality of life and improves survival rates. In many hospitals the focus of palliative teams is often on terminal care due to limited resources. How is Early palliative care (EPC) in this setting implemented in daily oncologic care? It seems obvious that thoracic oncologists will have to become involved in EPC for lung cancer patients. In this review we want to determine the assignments for the thoracic oncologist in EPC and to give some practical tools how we started EPC in collaboration with the palliative team.
Keywords: Lung cancer, Early palliative care, Practical tools, Thoracic oncologist.
Early introduction of palliative care to the management of patients with metastatic lung cancer improves their quality of life (QoL) and mood, results in less aggressive care at the end of life (EoL), leads to a better understanding of prognosis and even correlates with improved survival , , and . EPC needs to be integrated with regular oncologic management to better address supportive needs  . Early access to palliative care is not always possible, due to differences in its organization and availability  . Most palliative care teams nowadays focus on terminal care at home or in the hospital and are not tailored to outpatient settings  . It seems obvious that thoracic oncologists will have to become involved in this early palliative care (EPC) for lung cancer patients  . In this review we will determine the assignment for the thoracic oncologist in EPC. This review expands upon research by the first author in Medline of the relevant literature published in English from the year 2000 until now.
2. Early palliative care: definition and content
Palliative care (PC) is defined by the World Health Organisation (WHO) as “an approach that improves the quality of life (QoL) of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual”  . According to the National Consensus Project for Quality Palliative Care  , PC consists of eight domains: structure and process of care, physical, psychological/psychiatric aspects and social aspects of care, spiritual, religious and existential aspects of care, cultural aspects of care, care of the patient at the end of life and ethical and legal aspects of care. EPC is defined as concurrent palliative and standard oncologic care at initial diagnosis. The optimal timing for EPC is still to be determined  . It is still unknown which aspects of the EPC intervention leads to the observed improvement in patient-reported and healthcare outcomes  .
3. The assignment for the thoracic oncologist
Which domain(s) need(s) focus from the thoracic oncologist? As treating physician, he/she needs to structure and carry out the EPC. The essential steps are summarized below  . The availability of a multidisciplinary EPC team from the beginning – consisting of a expert palliative care physician, a palliative nurse, a psychologist or a psychiatrist, a social worker, chaplain and dietician – is essential. Patients suffering from lung cancer show a high burden of comorbidities and symptoms, as well as unfulfilled needs, specifically psychological and daily living problems  . It is these unfulfilled needs in which the other team members play an important role. The thoracic oncologist has to involve and motivate not only the patient and their family but also the palliative care team members to participate in EPC.
The physical aspect of EPC (comorbidities and symptoms) consists of standard oncology care (palliative chemo- and/or radiotherapy) in combination with treatment of pain and other symptoms. This part needs to be addressed by the thoracic oncologist. An important domain, not mentioned in the National Consensus is the communication with the patient and his/her family about the palliative setting of the treatment and its implications. This is the most challenging part of EPC.
Symptom control and communication about the palliative setting are the cornerstones for the thoracic oncologist in integrating EPC.
4. Symptom control
The most common physical symptoms reported by patients with lung cancer, receiving palliative chemotherapy, are fatigue, loss of appetite, shortness of breath, cough and pain  . It is a mix of tumor-specific and therapy-related symptoms. Although the thoracic oncologist is trained to treat these symptoms, in practice this is not always so easy. First, there seems a disagreement between the assessment of symptom intensity from the perspective of the patient and the physician  . The use of patient-reported outcome questionnaires, such as the Lung Cancer Symptom Scale (LCSC)  or the EORTC QLQ-LC13  can overcome this problem. As most chemotherapy studies showed a positive impact on QoL and disease-specific symptoms  , the focus is too much on chemotherapy and its side-effects and less on the associated best supportive care measures which must be part of the intervention. In Temel et al.  , the overall QoL improved significantly at week 12, but this was not the case for the seven symptoms specific for lung cancer (shortness of breath, weight loss, clear thinking, cough, appetite, tightness in the chest, difficulty breathing) using the LCSC questionnaire, despite the extra attention to these symptoms during the intervention. This lack of improvement is probably due to the chemotherapy. It was the physical, social/familial, emotional and functional well-being which significantly improved with EPC at 12 weeks. This emphasises the fact that symptom control in metastatic lung cancer is not only about pain and pulmonary symptoms. Also, psychological symptoms such as sleep and mood disturbances need to be discussed and treated. Lung cancer patients report the highest frequency of psychological distress (43.3%) among different types of cancer  and . A depression rate of 12.4% was reported in a sample of 1334 lung cancer patients  . It seems that we need to readdress our efforts if we want to improve QoL and create a more holistic approach for the patient. One of the basic principles of palliative care is the comprehension of the multidimensional nature of symptoms, with each dimension contributing in differing extent and complexity to the suffering in the individual patient  . Education programmes on this holistic approach are needed, with a focus on when to consult and what can be treated by the thoracic oncologist.
An EPC programme starts with the communication with the patient and his family about the palliative care setting, already at the beginning of the diagnosis and the start of the treatment. Literature shows that 70% of family caregivers only realize that the illness is incurable only after being informed that this is the case, mostly late in the course of the illness  . Chen et al.  showed that most of patient with advanced lung cancer did not understand that radiotherapy was not at all likely to cure their disease. A similar finding was reported by the same authors in patients receiving palliative intent chemotherapy  . They concluded that there is a need to improve communication regarding the goals and limits of palliative therapy. Of course it is not as simple as revealing these facts to the patient. Communication between doctor and patient is an interactive process. In this interaction, there are patient- and physician-related factors which interfere with the final message at the patient’s receiving end  . Nevertheless, communication leading to thorough understanding of the illness is important for the patient and their family care givers. Understanding of the prognosis may impact decision making about the care near the end of life. Temel et al. reported that patients with accurate perception of their prognosis received less intravenous chemotherapy near the end of their life  .
What exactly do we need to communicate? Breaking bad news will remain an unpleasant necessity. There are many guidelines, recommendations, training schemes and workshops using a variety of theories to improve provider skills in bringing bad news, and assuming that these interventions lead to a better psychological outcome for the patient  . A proposed communication tool for breaking bad news is the SPIKES protocol  . There is however, presently little evidence that a bad news dialogue according to these guidelines results in an improved patient well-being  . All indicate how to bring bad news but not what needs to be said. The final goal of the communication in EPC is to achieve a better QoL by a better illness understanding, leading to realistic therapeutic goals. We assume that a patient with metastatic lung cancer understands his/her disease when he/she knows that he/she cannot be cured, also not by the proposed treatment. He/she has to understand that the main treatment goal is to optimize QoL, in which chemo-and/or radiotherapy plays an important role. He/she must be critical about therapies with high toxicity.
So what do we need to tell the patient to achieve this level of understanding ?
First of all, we need to explain EPC. For most patients, palliative care has a negative connotation, as it is traditionally delivered late in the course of a disease when patients are terminally ill. So, palliative care is often mistakenly confused with terminal care. It is important to discuss this with the patient and his/her family and explain that palliative care is a positive choice when choosing for QoL.
Secondly, we wonder if frank disclosure of prognosis is necessary to achieve illness understanding. Several guidelines recommend clear and consistent communication about prognosis of patients with a terminal illness and a life expectancy of one year or less, as in metastatic lung cancer , , and . In real life, only 37% of physicians give a frank survival estimation  . And on the other hand, when prognosis is frankly told, only 24% of family caregivers agree with this estimation  . It is well known that patients with metastatic lung cancer overestimate their prognosis  . The challenge with metastatic lung cancer patients is the fact that the time between initial diagnosis and terminal phase is often short. The question remains whether to discuss the individual prognosis at the start of EPC. It seems important to assess the readiness of the patient to enter into this emotionally difficult discussion in order to move toward acceptance. This can be achieved by ‘unlinking’ the discussion of palliative treatment from the one of prognosis during the course the disease  .
The third aspect is one of the most difficult – and also most important – topics to deliberate with the patient and his family: what to expect from the terminal phase, the dying process itself. This discussion about the end-of-life (EoL) care is not necessarily linked with depression or anxiety, but rather with acceptance and preference for a treatment focused on relieving pain and discomfort. A worse QoL was reported in patients who did not report having such a conversation  . When is the appropriate time to discuss this? We assume that it is more appropriate to have this communication when the patient is still feeling well, instead of delaying until later, at which time the news is often broken someone other than the treating physician  .
Even when the patient and his caregivers understand their illness and choose for QoL, the issue of a Do Not Resuscitate (DNR) order remains challenging. Literature shows that a DNR code in patients with metastatic lung cancer is designated in only 30%  . Nevertheless, a clear DNR status in the electronic medical record of the patient goes along with less likelihood of death in hospital and is not necessarily associated with increased anxiety or depression  . Early discussion of DNR order is recommended  , but it is not clear how it should be performed  .
6. Implementing EPC in daily practice for the thoracic oncologist
How can we integrate EPC in our daily practice? We piloted a so-called “palliative hour” to improve symptom control and communication about the palliative setting. Each patient diagnosed with metastatic lung cancer is seen at the outpatient clinic by the treating thoracic oncologist, within 12 weeks of the start of first line chemotherapy and every 8–12 weeks from then on. Making the appointment is already the start of EPC. The meaning of the word ‘palliative’ needs to be explained and understood by the patient and his/her family. This appointment is often a landmark in which the patient and his family realize that the disease is incurable. We have standardised this consultation by a semi-structured interview, consisting of eight components.
- 1. Check the readiness of the patient to talk about palliativecare by the following open question: what does the patient and his caregivers expect from this consultation? What do they think palliative care is? This gives the opportunity to repeat the diagnosis and explain again palliative care and its goals. The emphasis is on the incurability of the disease. A frank prognosis is only given when the patient or his/her family asks for it.
- 2. Symptom management is an important aspect of palliativetherapy. Disease- and therapy specific symptoms are asked and treated where possible.
- 3. Routine check of the wishes concerning EoL care. Most patients andfamily care givers are willing to talk about this issue. We start this conversation with open hypothetical questions: “ Imagine that your condition worsens and you are not capable of taking care of yourself. Have you already thought about this situation? What would you prefer? To stay at home with extra help from others or go to a hospice?” Hypothetical questions are more effective in encouraging to discuss this topic  . If a patient is not considered ready to enter this topic, it will not be addressed in this session. It can be too soon for some patients and a new attempt to discuss EoL care will be taken in the next session. We note the wishes of the patient in the medical file or that the patient was not yet ready to talk about this topic.
- 4. Start palliative home care. The GP is informed of the patient’s participation to the EPC programme and we ask for his/her contribution in this EPC. It means contacting the palliative network and to start, depending on patients needs, with nursing aid. The GP is the coordinator of this palliative home team.
- 5. The deliberation about the DNR code is performed according to “allownatural death” (AND)  . This emphasizes that the order is to allow natural consequences of the disease and the ongoing EoL  . It makes this topic easier. The DNR code is discussed with the patient and his family and noted in the patient file.
- 6. A non-medical member of the palliative care team is presentedto the patient. If he/she needs to be hospitalized later on, the palliative care team knows the patient and family, which avoids mistakes and redundancy at hospitalization.
- 7. We finish by emphasizing that we realize this diagnosis isdifficult for the patient and his/her family. A lot is going on and this can cause psychological distress for the patient as well for his/her family. This is an attempt to estimate the need for and the openness to psychological help from a professional. If they have access to counseling already, it is a way to emphasize the importance of psychological support to achieve a better QoL.
- 8. A second appointment is made 8–12 weeks later to assesssymptom control and to discuss any topics that were not covered before, and to check if palliative home care has been initiated by another member of the palliative care team.
7. Implementing a holistic approach by the other team members
The strength of EPC is its holistic approach. Input from the palliative care physician, palliative care nurse, psychologist and social worker with their specific focus is needed. Each team member (including the thoracic oncologist) alternates attending the palliative hour with his/her own focus on palliative care. It makes the workload for each member of the team manageable. The first appointment is always with the thoracic oncologist. It makes an immediate statement that is the process is integrated into standard oncology care. When making a follow up appointment, we make sure that the patient attends at least to each team member to assure a better psychosocial support.
Integrating EPC in standard oncologic care is recommended since it improves QoL and leads to a better survival. It seems obvious that the thoracic oncologist will be involved in EPC. In this review we have addressed the specific tasks with pragmatic tools for the thoracic oncologist to implement EPC in his/her daily practice. These tasks mainly consist of caring for an adequate symptom control and a transparent communication toward the patient, relatives and team members. Since EPC needs a holistic approach, collaboration with other team members of the palliative care team is warranted. The question of how the reported better QoL is linked to EPC remains. Illness understanding about the palliative setting of the disease seems to have an impact on decision making about the care near the end of life. Better symptom control and/or the extra attention by (para-) medics probably are also important factors, and future research in this area is needed. A validated questionnaire to measure illness understanding would enable us to investigate if illness understanding goes along with a better QoL. This research can give insight into how and what to communicate with patients in a palliative care setting.
Conflict of interest
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a Thoracic Oncology, Antwerp University Hospital, Wilrijkstraat 10, 2650 Edegem, Belgium
b Multidisciplinary Pain Team, Antwerp University Hospital, Wilrijkstraat 10, 2650 Edegem, Belgium
c MOCA, Antwerp University Hospital, Wilrijkstraat 10, 2650 Edegem, Belgium
⁎ Corresponding author. Fax: +32 3 821 41 21.
© 2015 Published by Elsevier B.V.