End-of-life is usually defined as the final stages of a terminal illness, typically when the prognosis is considered to be ≤6 months. A more meaningful and broader definition used by many palliative care programmes defines people to be at the ‘end-of-life’ when they have a chronic, life-limiting condition (e.g. end-stage renal disease, class IV congestive heart failure, and so on) for which it would not be surprising for death to occur within the next year. Confining end-of-life care to the actively dying may limit important service opportunities for patients and their families who also require care for the final stages of their illness.

End-of-life concerns are varied among patients and healthcare providers, although individual issues often focus on several important themes (Table 9.1). Critical end-of-life issues focus on safe and comfortable dying, self-determined life closure, and effective grieving for those left behind. Healthcare providers need to establish open, nonjudgmental communication with both patient and their support network to address end-of-life issues effectively. Healthcare providers need to clearly and caringly inform patients about their terminal condition to allow the patient to have an opportunity for growth during the dying process and achieve closure to his or her life. Healthcare providers also need to ensure that each patient will have a treatment team who will work closely with them throughout the terminal process, available until death for the patient and into the period after death for remaining family members.

In 1997, the Institute of Medicine reviewed end-of-life care practices and determined there were four deficiencies¹. First, patients suffer needlessly due to failure to administer effective palliative therapy. Second, legal and economic obstacles impair good end-of-life care, including excessive concerns about opioid addiction and difficulties in securing payment for palliative services. Third, healthcare providers are inadequately educated to care effectively for the dying. Finally, insufficient data are available to understand accurately end-of-life experiences. These problems can be corrected with changes in education for healthcare providers, updated guidelines for medical providers and regulatory agencies, increased utilization of palliative and hospice services, and increased research and public discussion about death and dying issues. Since this report, end-of-life care opportunities have improved for patients. For example, palliative and hospice care have recently been recognized as unique medical subspecialities in the United States and a recent survey reported that the number of United States hospitals offering palliative care programmes nearly doubled from 2000 to 2005².

Pain is a common symptom during the final weeks and days of life, with about one in three patients experiencing untreated or ineffectively treated moderate to severe intensity pain (9.1)³. A retrospective review of 185 patients dying during a 12-month period in five long-term care facilities in Canada evaluated symptoms during the last 48 hours of life⁴. Patients experiencing sudden, expected deaths were not included. The most common causes of death, each accounting for one in three deaths, were cardiac and respiratory diseases. Cancer accounted for 14% of deaths. The most common symptoms and treatment for each were catalogued (Table 9.2). Pain was noted in nearly half of patients, with most treated with analgesics. An earlier prospective study of 200 consecutive hospice patients reported similar symptoms during the last 48 hours before death, with pain reported in 51%, with about half of these patients developing new pains and the remainder experiencing exacerbations of previously controlled pain⁵. Opioids were used by 91% of patients prior to the last 48 hours of life, with the dosage increased during the last 48 hours in 44%, unchanged in 43%, and decreased in 13%.

Nine of 10 cancer patients prefer to die at home in order to continue a ‘normal’ routine as long as possible and maintain close contact with loved ones⁶,⁷. Over half of terminal patients rate the importance of dying in their preferred place to be very important and an additional 20% consider location to be important⁶. Unfortunately, only a minority of terminal patients actually spend their remaining days and hours at home (9.2)⁷,⁸,⁹,¹⁰. The likelihood of dying at home increases when a patient lives with a caregiver, has stated a preference to die at home, and has a family physician who makes home visits¹¹. Healthcare providers need to identify preferred end-of-life locations for their patients and help facilitate achieving death in their preferred environment.