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.
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.
In a cross-sectional study of parents who lost a child to cancer, clear discussions between the primary oncologist and the parents were more likely to be associated with planning for the location of death, fewer hospital admissions, and parents feeling more prepared for the child's end of life.
Palliative care is an approach that can improve the quality of life for patients and their families facing life-threatening illness through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other physical, psychosocial, and spiritual problems. A randomized controlled study of early integrated palliative care with standard oncologic care versus standard oncologic care alone in patients newly diagnosed with metastatic non-small cell lung cancer revealed improved quality of life, fewer depressive symptoms, and longer median survival despite less aggressive end-of-life care in the group receiving palliative care.
Inpatient palliative care services are increasingly available in hospitals with more than 50 beds; between 2000 and 2011, the prevalence increased from 24% to 67%. There is also experience with outpatient palliative care clinics and home services. Regardless of the availability of palliative care services, all oncologists and other professionals caring for people with cancer must be proficient in aggressive symptom management and discussions of advance care planning. These activities are optimally conducted with the palliative care team so that both patient and family hear a consistent message and do not feel abandoned by the physician, with whom they have developed a strong bond.
Hospice is a specialized form of interdisciplinary palliative care that alleviates physical, emotional, social, and spiritual discomfort during the last phase of life. Hospice is a program of care provided by an interdisciplinary team designed to keep a patient at home with family and friends. Pain management and symptom management are paramount, along with bereavement and volunteer components. Hospice provides palliative care, with which it is frequently confused; however, the focus of hospice is on patients with life-limiting, progressive disease (usually with a prognosis of no more than 6 months if the disease were to take its natural course).
Utilization of hospice care has increased in the United States, with 1.5 to 1.6 million patients seeking such care. People who had cancer made up approximately 37% of these admissions in 2012. However, a disturbing trend is reflected in the very short median length of stay in hospice of just 18.7 days. This trend suggests that advance care planning is not taking place early in the course of the disease, that the ability of health care providers to prognosticate is poor, and that referrals are made too late; it may also reflect denial on the part of professionals, patients, or their families regarding disease progression.
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- Zhang B, Wright AA, Huskamp HA, et al.: Health care costs in the last week of life: associations with end-of-life conversations. Arch Intern Med 169 (5): 480-8, 2009. [PUBMED Abstract]
- Wright AA, Zhang B, Ray A, et al.: Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 300 (14): 1665-73, 2008. [PUBMED Abstract]
- Dussel V, Kreicbergs U, Hilden JM, et al.: Looking beyond where children die: determinants and effects of planning a child's location of death. J Pain Symptom Manage 37 (1): 33-43, 2009. [PUBMED Abstract]
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- Center to Advance Palliative Care: Growth of Palliative Care in U.S. Hospitals: 2013 Snapshot. New York, NY: CAPC, 2013. Available online. Last accessed July 16, 2014.
- NHPCO Facts and Figures: Hospice Care in America. 2013 Edition. Alexandria, Va: National Hospice and Palliative Care Organization, 2013. Available online. Last accessed July 16, 2014.