The evolving definition and scope of palliative care

Is our health system’s definition of palliative care correct?  The World Health Organization (WHO) describes palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness.” Keeping this in mind, most of us associate palliative care with comfort-focused care that is delivered within the last few weeks of a person’s life, also often described as end-of-life care. Based on this definition, we also assume that when palliative care begins, curative therapies that aim to prolong life end. That palliative care is essentially the beginning of the end and that death is inevitable for the patient in question.

However, more recently palliative care has been distinguished from end-of-life care, and its scope has been broadened to begin palliative care earlier on in the disease trajectory, rather than simply in the last few weeks of life. There has been growing recognition that symptomatic and quality of life problems for patients with advanced life-threatening disease may in fact manifest themselves earlier on in the disease trajectory, rather than solely at the end of life. Additionally, there is evidence that within its current narrow scope, palliative care provided only to patients suffering from advanced and incurable illness, and only in the last few weeks of life, undertreats symptoms and can result in devastating consequences for patients and their caregivers. Thus, palliative care with its primary aim of relieving suffering from pain, and improving patient function and quality of life overall, may in fact be suitable throughout the disease trajectory, even from the time of initial diagnosis of advanced, life-threatening disease.  Consequently, the curative versus comfort care dichotomy whereby palliative care is initiated only following the exhaustion of all curative life-prolonging care need no longer exist.

Conceptually this makes sense, but is it supported with evidence? Being a relatively new recommendation, evidence is just starting to accumulate on the benefits of initiating palliative care earlier rather than later in the course of a patient’s illness trajectory. One well-cited study conducted by Temel and colleagues in 2010 demonstrated highly positive effects of providing palliative care concurrently with oncological care, in patients with metastatic lung cancer. These benefits included improvements in quality of life, delivery of less aggressive care at the end of life, and increased survival for those receiving concurrent palliative care. Moreover, these patients were found to be more realistic of their prognoses, and health care providers also predicted their prognoses with greater accuracy. Another randomized controlled trial study conducted at Princess Margaret Hospital in Toronto by Zimmermann and colleagues in 2014 on advanced stage cancer patients, similarly demonstrated statistically significant differences in scores of quality of life and satisfaction with care between patients receiving an early palliative care intervention versus patients receiving standard oncological care. Other studies on this patient population, using intermittent components of palliative care, have also demonstrated improved quality of life, mood, and symptom intensity suggesting that concurrent palliative care with oncological care, earlier in the course of the disease, has the potential to improve patient and family disease experiences. Additional evidence remains to be accumulated for advanced chronic conditions other than cancer, such as chronic obstructive pulmonary disease and chronic heart failure, whose patients may also benefit from receipt of palliative care.

Initiating palliative care earlier than in the last few weeks of life, so that it supports patients as they receive curative and maintenance treatments, will help to greatly improve patient symptom management and quality of life. As Ontario begins to shape its palliative care policies, making decisions on the nature, scope and definition of palliative care will help ensure that patients with advanced life-threatening disease receive the care they need from our health care system.

The comments section is closed.

  • Subhash Bansal says:

    The approach seems to be more rational and relevant.

  • kathy kastner says:

    So glad you’ve brought this issue to the fore: I am a public member, sitting on Palliative Care Steering committees in complex continuing care facilities. We’ve instituted the ‘surprise’ question ‘Would you be surprised if your patient died with in the next 12 months?’ If ‘No’, then referral for a Palliative Consult is immediate, as are the benefits. This is exactly the patient population you’re talking about – COPD, CHF, CKD along with ALS. Still to be evaluated – as you’ve pointed out – is the impact of the Palliative approach on cost effectiveness for these patients. To this end, here’s a lit search from 2013
    “Evidence on the cost and cost-effectiveness of palliative care: A literature review” http://pmj.sagepub.com/content/28/2/130

    It is my fervent hope that funding models shift, so that palliative consult and approach can can kick in earlier than the current envelope allows.

  • Paul Webster says:


    ‘Noting that Canadians are twice as likely as Americans to die in hospital, and are twice as likely to see 10 or more doctors in their last six months of life, Dr. Rob Fowler, a senior scientist at Toronto’s Sunnybrook Medical Centre, emphasized that patient preferences are far too often discounted.

    Citing data from a survey of 278 very elderly patients and 225 family members at 12 Canadian hospitals that was recently published in JAMA Internal Medicine, Fowler noted that only 11.9% preferred life-prolonging care, and that agreement between patients’ expressed preferences for end-of-life care and the documentation in their medical records was found in only 30% of cases.

    “We’re not responsive to what patients want,” Fowler said.’


Suman Budhwani


Suman Budhwani is a PhD Student at the Institute of Health Policy, Management & Evaluation at the University of Toronto.

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