Many physicians and other health professionals, as well as patients and the public at large, think of death and dying when they hear the word “palliative”. They equate it with the last days or weeks of life; also referred to as the terminal phase or end-of-life (EOL). This has many negative consequences.
Opportunities are lost, in patients whose disease is life limiting and progressing (whether it be cancer or an illness such as end-stage heart or lung disease), to improve symptom control, improve quality of life and engage in goals of care discussions and advance care planning in a timely manner. Lack of preparation in turn results in inappropriate treatment choices and poor use of health care resources. In Ontario, for example, Cancer Care Ontario reports that a very high proportion (42%) of cancer patients visit emergency departments in the last two weeks of life¹. In a recent retrospective audit at The Ottawa Hospital of patients who visited the TOH Emergency Department in the last two weeks of life, only about 1 in 10 had a “do not resuscitate” (DNR) order in place.
There is the concern that initiating palliative care early will increase psychological distress for patients and even shorten their lives. Evidence shows otherwise. “Late” palliative care (i.e. only in the EOL phase) versus “early” palliative (at the time of diagnosis) were compared in a recent randomized study involving patients with newly diagnosed metastatic lung cancer². In the “late” model, which is what usually happens, patients were first referred to medical and radiation oncology. They were referred for palliative care only in the last days or weeks when they entered the terminal (or EOL) phase. Patients randomized to the “early” model started palliation at the same time that they were referred for chemotherapy and/or radiotherapy treatments. Those who received early palliative care experienced significantly better symptom control, reported better quality of life and actually lived almost three months longer than those who received late palliative care.
Other studies have found similar results. In a large US study of almost 4,500 Medicare patients who died of congestive heart failure or cancer, palliative care was associated with increased survival³. In a study involving patients with lung cancer, hospice care was not associated with increased mortality and chemotherapy use in last 2 weeks of life did not improve survival4.
In 2002, the World Health Organization modified its definition of palliative care from an approach for “patients with terminal illnesses” to “patients with life threatening illnesses”. While this definition may be considered too broad by some, it serves to make the point that “early is better than late”. Even cancer survivors and patients whose life threatening illnesses are under control (not progressing) may benefit from palliation early (including symptom control, improvement of quality of life, goals of care discussions and advance care planning).
This does not mean that all patients with progressive life limiting illnesses have to be referred to specialist-level palliative care teams and services. With some basic training, primary- or generalist-level palliative care can be delivered effectively by family physicians, oncologists, internists, cardiologists and other specialists treating patients with progressive life limiting illnesses. The Regional Palliative Care Consultation Team (RPCT) – a merger of the Bruyère Palliative Pain and Symptom Management Consultation Team and palliative care nurse practitioners at Champlain CCAC – is available across Champlain to assist family doctors in providing palliative care and EOL care in the home or hospice. The contact number is 613-562-6397 or 1-800-651-1139.
If, for whatever reason, you are not able to provide palliative or EOL care, there are groups of palliative care physicians providing palliative EOL care in Ottawa who could provide that care. For contact information on the groups, please visit www.alavidapalliativehelp.ca, then click on the Hospice Palliative Care in Champlain link and then the City of Ottawa link.
Dr. José Pereira
Head and Professor, Division of Palliative Care, Department of Medicine, University of Calgary.
Medical Chief, Department of Palliative Medicine, Bruyère Continuing Care.
Medical Chief, Division of Palliative Care, Department of Medicine, The Ottawa Hospital.
Medical Lead, Champlain Regional Hospice Palliative Care Program.
¹ Cancer Care Ontario. CSQI Annual Report (2013)
² Temel J, et al. Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer NEJM 2010; 363:733-42
³ Connor SR, et al: Comparing hospice and non-hospice patient survival among patients who die within a three-year window. J Pain Symptom Manage 2007;33:238-246
4 Saito AM, et al: The effect on survival of continuing chemotherapy to near death. BMC Palliat Care 2011; 10:14