8. Integrated Palliative and Supportive Care
You have a right to:
Receive optimal supportive and palliative care, as relevant, during any part of your cancer journey.
Three key questions that every cancer patient may choose to ask:
- Will I be given supportive and palliative care on my cancer journey, based on my individual needs?
- Can I ask to be referred to the supportive and palliative care service at any time?
- Is the supportive and palliative care service provided at home and in hospital?
Explanation
European cancer patients should have access to supportive and palliative care at any point of their cancer journey, from diagnosis, as survivors or in end-of-life care. Most cancer patients require supportive and palliative care at some stage of their care pathway. This may be particularly true of patients whose disease will prove ultimately not to be curable, but is also relevant for many patients who, sometimes following complex and difficult treatment programmes, achieve long term survival and good quality-of-life. As a patient, you have the right not to receive specific anti-cancer treatment such as surgery, radiotherapy or chemotherapy, but to choose supportive and palliative care to alleviate your symptoms. You have the right to make your own end-of-life decisions and for your choices to be respected as far as they can be within the current laws of the country within which you are receiving your care. You may choose to make decisions about your care in advance of the immediate need for them so that your wishes are clear for the future.
Supportive and palliative care can be provided from many sources within healthcare, in the community, in hospitals or hospices, from patients’ families and carers and from patient organisations. It may be provided by the cancer care team and by full-time palliative care professionals. Expert supportive care is often to be found in specialised palliative care units, where skills in the patient’s psychosocial support and symptom relief complement the complex often highly technical treatment options that are tailored to maximise quality-of-life.
There is evidence that involving supportive and palliative care early in the management of patients with cancer can improve their quality-of-life and in some circumstances improve their survival. Providing patients with good communication and supportive and palliative care may improve wellbeing and outcomes, reduce hospital admissions and length of stay and lower overall healthcare costs.
In most European countries, palliative care is a separate clinical discipline from oncology and the teams providing palliative care are responsible for many patients, not only those with cancer. However, the support of cancer patients is a large part of palliative care and the multidisciplinary palliative care teams have substantial expertise in the support of cancer patients and the management of their symptoms at all stages of their cancer pathway. Close working between cancer care and palliative care teams is a feature of good clinical cancer practice.
Supporting Literature and Evidence
WHO defines palliative care as “an approach that improves the 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” (176) which has been extended to include “Palliative care is applicable early in the course of illness, in conjunction with other therapies which are intended to prolong life (177).
Over the last decade, there has been a growing body of research to support earlier integration of palliative care into oncology care. Evidence clearly supports the benefits of earlier referral to palliative care and this should be promoted more widely, both for its ability to improve patient care and QoL, and as an important step to counter the perception that referral represents oncological failure or imminent death; Developing more integrated clinical practices between oncology and palliative care would be helpful (178-179).
The research evidence for early intervention consists of a number of randomized controlled trials (RCTs), largely from North America and Europe, which have demonstrated an association of early palliative care with improved symptoms, better QoL, and reduced acute hospital admissions and aggressive cancer treatments at the end of life (180-183). Systematic reviews and pooled analyses of routinely collected data have also demonstrated an association between early palliative care intervention and an increased proportion of home deaths as the preferred place of death and a reduction in emergency admissions (178-183). The American Society of Clinical Oncology (ASCO) recommends that the integration of palliative care into oncology management should be considered early in the course of illness for any patient with metastatic cancer or a high symptom burden (184). In Europe, patterns of practice vary considerably. For example in the UK, only two-thirds of cancer patients are referred to palliative care services before they die, and typically late in the course of their illness (178, 181). This is a much shorter duration of palliative care involvement than US research evidence suggests is optimal. Individual patient experience reflects this. The ideal timing of palliative care is dependent on the patient’s needs, but it helps to introduce and clarify the real definition of palliative care from very early on in the diagnosis, so patients aren’t afraid when they hear that they can be given palliative care. Palliative care can become a valuable support rather than a harbinger of death (178-186).
Determining the right time to refer is difficult. Referring all patients at diagnosis with advanced disease is not currently feasible in most European practice; the palliative care services would be overburdened and not all patients at diagnosis with advanced disease have complex symptoms or are receptive to a palliative care referral. Determining an accurate time from death even in patients with cancers that have a relatively predictable prognosis, is challenging. Studies have shown that oncologists’ estimates of life expectancy in patients with incurable cancer are imprecise: 35% were too optimistic (>1.33 times the actual survival time) and 39% were too pessimistic (<0.67 times the actual survival time) (178, 181). Society’s views on palliative care are another factor that influences prompt integration of palliative care into oncology care. Studies exploring patient barriers to referral to palliative care report misconceptions regarding the role of hospices and community-based supportive and palliative care teams, which included assumptions that palliative care was only for patients at the very end of life, and a lack of appreciation of the breadth of services provided (178-186). Palliative care services should be explained in more detail when first introduced and information materials should be provided to reinforce understanding. An example of the impact of increased awareness of the need for supportive and palliative care early in many patient’s pathway came from an audit of one of Europe’s largest OECI cancer centres, the Christie Hospital in Manchester, UK, of patients receiving systemic anticancer treatment (SACT) for metastatic breast cancer (179). Few patients had been identified as being in the last year of life and they had often become separated from support in the community. Consequently, admissions were frequent. As a consequence, the centre integrated supportive and palliative care into breast cancer care, then in a wider range of MDT’s and finally into 23 other centres. The benefits included less need for hospital admissions, especially emergency admissions, reduction in length of stay in hospital, fewer intensive care hospital days, lower overall healthcare costs, including expenditure on high-cost SACT, reduced mortality within 30 days on SACT, and increased trial recruitment (179).
