Despite advances in the treatment of cancer, many people will die from their disease. This summary is intended to address care during the last days to last hours of life, including common symptoms, ethical dilemmas that may arise, and the role of the cancer care professional in caring for patients and their families during this time.
In this summary, unless otherwise stated, evidence and practice issues as they relate to adults are discussed. The evidence and application to practice related to children may differ significantly from information related to adults. When specific information about the care of children is available, it is summarized under its own heading.
Children with cancer need information that is right for their age.
Studies show that children with cancer want to know about their illness and how it will be treated. The amount of information a child wants depends in part on his or her age. Most children worry about how their illness and treatment will affect their daily lives and the people around them. Studies also show that children have less doubt and fear when they are given information about their illness, even if it is bad news.
Although greatly feared by our death-denying society, the end of life can be a time of great personal growth for patients and their families. This growth depends on thoughtful discussions and careful decision making about advance care planning, optimally beginning soon after diagnosis and continuing throughout the course of the disease. Planning includes establishing the goals of care, clarifying acceptable treatment options (including discussions regarding palliative care and hospice), and determining where a patient wishes to spend the final days of life. When these discussions do not take place and plans are not made, the final hours may be filled with suffering and distress.
In a large study of people with advanced cancer, patients who reported having end-of-life discussions with their physicians (n = 188) had significantly lower health care costs than did patients who did not have these discussions (n = 415). This was demonstrated by a reduction in resuscitation, ventilator use, and intensive care stay. There was no difference either in survival time or in the likelihood of receiving chemotherapy for patients who discussed end-of-life preferences with physicians (n = 75) and those who did not (n = 70). Higher costs were associated with worse quality of life at death, as rated by the patient's caregiver (hospice nurse or family member).
In a U.S.-based multisite, prospective, longitudinal study, advanced cancer patients and their caregivers were followed to assess the association between end-of-life discussions and medical care, patient mental health, and caregiver adjustment. The cohort consisted of 332 patients who died a median of 4 months after enrollment, with 123 (37%) reporting end-of-life discussions with physicians at baseline. Results demonstrated an association between discussions and less aggressive medical care near death and earlier referrals to hospice. Aggressive care was associated with worse patient quality of life and caregiver adjustment. (Refer to the PDQ summary on Transitional Care Planning for more information on home care needs.)