Providing nutrition to patients at the end of life is a very complex and individualized decision. Ideally, the options for nutrition support for end-of-life care should be discussed in advance, and information on all nutritional choices and their consequences should be provided to the patient and family. Patients are best able to make decisions if they are well informed about the possible risks and benefits of artificial nutrition. Considerations of financial cost, burden to patient and family of additional hospitalizations and medical procedures, and all potential complications must be weighed against any potential benefit derived from artificial nutrition support. Supplemental nutrition may be beneficial in the treatment of advanced cancer, where quality of life would otherwise suffer and death would be caused by malnutrition rather than the underlying disease, such as in mechanical obstruction or malabsorption resulting in intolerance of oral intake.
The rationale for providing artificial nutrition at the very end of life is less clear. One study has concluded that artificial nutrition—specifically, parenteral nutrition—neither influenced the outcome nor improved the quality of life in terminally ill patients.
The controversial nature of providing artificial nutrition at the end of life has prompted the American Academy of Hospice and Palliative Medicine (AAHPM) to recommend that individual clinical situations be assessed using clinical judgment and skill to determine when artificial nutrition is appropriate. Recognizing that the primary intention of nutrition is to benefit the patient, AAHPM concludes that withholding artificial nutrition near the end of life may be appropriate medical care if the risks outweigh the possible benefit to the patient.
The goal of end-of-life care is to relieve suffering and alleviate distressing symptoms. The patient’s needs and desires must be the focus, with their best interests being the guide for decision making, influenced by religious, ethical, and compassionate issues.[4-6]
Broadly defined, resuscitation includes all interventions that provide cardiovascular, respiratory, and metabolic support necessary to maintain and sustain the life of a dying patient. It is important for patients, families, and proxies to understand that choices may be made specifying what supportive measures, if any, should be given preceding death and at the time of death. People often believe that there is plenty of time to discuss resuscitation and the surrounding issues. However, many dying patients do not make choices in advance or have not communicated their decisions to their families, proxies, and the health care team. If these issues are unresolved at the time of end-of-life events, undesired support and resuscitation may result. Studies suggest that this aggressive care is associated with worse patient quality of life and worse adjustment to bereavement for loved ones.[7,8]
Narrowly defined, a Do Not Resuscitate (DNR) order instructs health care providers that, in the event of cardiopulmonary arrest, cardiopulmonary resuscitation (CPR, including chest compressions and/or ventilations) should not be performed and that natural death be allowed to proceed. DNR orders must be made before cardiac arrest and may be recommended by physicians when CPR is considered medically futile or would be ineffective in returning a patient to life. A DNR order may also be made at the instruction of the patient (or family or proxy) when CPR is not consistent with the goals of care. It is advisable for a patient who has clear thoughts about these issues to initiate conversations with the health care team (or appointed health care agents in the outpatient setting) and to have forms completed as early as possible (i.e., before hospital admission), before the capacity to make such decisions is lost. Although patients with end-stage disease and their families are often uncomfortable bringing up the issues surrounding DNR orders, physicians and nurses can tactfully and respectfully address these issues appropriately and in a timely fashion. Lack of standardization in many institutions may contribute to ineffective and unclear discussions around DNR orders.
Fewer patients with advanced cancer will undergo resuscitation and ventilatory support when discussions regarding goals of care and advance directives begin early in the course of the disease. However, when advance directives are not available or when the directives are not adequately communicated, intubation may occur despite low likelihood of survival.
When ventilatory support appears to be medically futile or is no longer consistent with the patient’s (or family’s or proxy’s) goals of care, ventilator withdrawal to allow death may take place. Extensive discussions must first take place with patients (if they are able) and family members to help them understand the rationale for and process of withdrawal. When no advance directive is available and a patient can no longer communicate, it is helpful to reinterpret in a more realistic light, or reframe for family members, that they are not making a decision to “pull the plug” for their loved one. Rather, they are helping the health care team interpret their loved one’s wishes or discontinuing a treatment that is no longer considered effective. Such reframing is essential to help family members and significant others understand that the underlying disease process, and not ventilator withdrawal, is the cause of the patient’s death.
Two methods of withdrawal have been described: immediate extubation and terminal weaning. Immediate extubation includes providing parenteral opioids for analgesia and sedating agents such as midazolam, suctioning to remove excess secretions, setting the ventilator to “no assist” and turning off all alarms, and deflating the cuff and removing the endotracheal tube. Gentle suctioning of the oral cavity may be necessary, but aggressive and deep suctioning should be avoided. In some cases, patients may appear to be in significant distress. Analgesics and sedatives should be provided even if the patient is comatose. Family members and others who are present should be warned that some movements may occur after extubation, even in patients who are brain dead. Such movements are probably caused by hypoxia and may include gasping, moving extremities, or sitting up in bed. Immediate extubation is generally chosen when a patient is brain dead, when a patient is comatose and unlikely to experience any suffering, or when a patient prefers a more rapid procedure.
Terminal withdrawal entails a more gradual process. Ventilator rate, oxygen levels, and positive end-expiratory pressure are decreased gradually over a period of 30 minutes to a few hours. A patient who survives may be placed on a T-piece; this may be left in place, or extubation may proceed. There is some evidence that the gradual process in a patient who may experience distress allows clinicians to assess pain and dyspnea and to modify the sedative and analgesic regimen accordingly. In a study of 31 patients undergoing terminal weaning, most patients remained comfortable, as assessed by a variety of physiologic measures, when low doses of opioids and benzodiazepines were administered. The average time to death in this study was 24 hours, although two patients survived to be discharged to hospice.
Paralytic agents have no analgesic or sedative effects, and they can mask patient discomfort. These neuromuscular blockers should be discontinued before extubation. Guidelines suggest that these agents should never be introduced when the ventilator is being withdrawn; in general, when patients have been receiving paralytic agents, these agents should be withdrawn before extubation. The advantage of withdrawal of the neuromuscular blocker is the resultant ability of the health care provider to better assess the patient’s comfort level and to allow possible interaction between the patient and loved ones. One notable exception to withdrawal of the paralytic agent is when death is expected to be rapid after the removal of the ventilator and when waiting for the drug to reverse might place an unreasonable burden on the patient and family.
Regardless of the technique employed, the patient and setting must be prepared. Monitors and alarms should be turned off, and life-prolonging interventions such as antibiotics and transfusions should be discontinued. Family members should be given sufficient time to make preparations, including making arrangements for the presence of all loved ones who wish to be in attendance. They should be given information on what to expect during the process; some may elect to remain out of the room during extubation. Chaplains or social workers may be called to provide support to the family.
Some families may need continuous information and professional guidance when palliative sedation is used, and this need increases with the duration of the sedation. Individuals or groups outside the family and health care team may have strong opinions about palliative sedation and may offer unsolicited guidance that conflicts with what the patient desires. Concerns identified in a study conducted in The Netherlands relate to the following:
- Aim of continuous sedation.
- Patient well-being.
- Family well-being.
The use of palliative sedation for psychosocial and existential symptoms can be particularly controversial. The clinician may face many ethical and clinical questions—questions that are more easily resolved in the case of palliative sedation for pain and physical symptoms. Useful resources include the framework for the use of sedation in palliative care recommended by the European Association for Palliative Care  and the position statement developed by the American Academy of Hospice and Palliative Medicine.
For example, the ethical basis for the use of terminal sedation (double effect) is less clearly applicable in the case of psychiatric symptoms. Under the principle of double effect, the intended effect (relieving psychological suffering) would be considered allowable as long as any risks or negative effects (i.e., shortened survival) are unintended by the health care professional. The difficulty arises because the principle only discusses the professional’s intention, when it is the patient’s intention that can be unclear and potentially problematic. Is the depressed patient who no longer wants to suffer depressive symptoms asking only for that relief, or does the patient also intend to ask the professional to shorten his or her life? A clinician who feels uncomfortable in such situations may wish to seek guidance from his or her ethics committee.
Other difficult questions can arise from the potentially negative value that is culturally assigned to detaching oneself, or “zoning out,” as a lower form of coping. Should the anxious patient who no longer wants to face the anxiety associated with the end of life and who wants to be sedated be encouraged to work through such issues? Or is it allowable for these patients to have sedation for dealing with their anxiety? How many alternatives should be tried before anxiety is considered unacceptable? When dealing with such requests, professionals should consider their own cultural and religious biases and the cultural and/or religious backgrounds of patients and their families.
Few studies detail the use of terminal sedation for psychosocial symptoms. Four palliative care programs in Israel, South Africa, and Spain participated in one survey. One unique study has described the Japanese experience around the issues of palliative sedation therapy.[20,21] A retrospective study at the MD Anderson Cancer Center in Houston included 1,207 patients admitted to the palliative care unit. Palliative sedation was used in 15% of admissions. The most common indications were delirium (82%) and dyspnea (6%). Sedation in these circumstances is often on a temporary basis and was reversible in 23% of this group of patients.
- McCallum PD, Fornari A: Nutrition in palliative care. In: Elliott L, Molseed LL, McCallum PD, eds.: The Clinical Guide to Oncology Nutrition. 2nd ed. Chicago, Ill: American Dietetic Association, 2006, pp 201-7.
- Torelli GF, Campos AC, Meguid MM: Use of TPN in terminally ill cancer patients. Nutrition 15 (9): 665-7, 1999. [PUBMED Abstract]
- Statement on Artificial Nutrition and Hydration Near the End of Life. Chicago, Ill: American Academy of Hospice and Palliative Medicine, 2013. Available online. Last accessed July 16, 2014.
- Langdon DS, Hunt A, Pope J, et al.: Nutrition support at the end of life: opinions of Louisiana dietitians. J Am Diet Assoc 102 (6): 837-40, 2002. [PUBMED Abstract]
- Maillet JO, Potter RL, Heller L: Position of the American Dietetic Association: ethical and legal issues in nutrition, hydration, and feeding. J Am Diet Assoc 102 (5): 716-26, 2002. [PUBMED Abstract]
- Balboni TA, Vanderwerker LC, Block SD, et al.: Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life. J Clin Oncol 25 (5): 555-60, 2007. [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]
- Miyashita M, Morita T, Sato K, et al.: Factors contributing to evaluation of a good death from the bereaved family member's perspective. Psychooncology 17 (6): 612-20, 2008. [PUBMED Abstract]
- Zhukovsky DS, Hwang JP, Palmer JL, et al.: Wide variation in content of inpatient do-not-resuscitate order forms used at National Cancer Institute-designated cancer centers in the United States. Support Care Cancer 17 (2): 109-15, 2009. [PUBMED Abstract]
- von Gunten CF, Weissman DE: Ventilator Withdrawal Protocol, Part 1, 2nd ed. Milwaukee: Medical College of Wisconsin, End-of-Life Palliative Education Resource Center, 2005. Available online. Last accessed July 16, 2014.
- Marr L, Weissman DE: Withdrawal of ventilatory support from the dying adult patient. J Support Oncol 2 (3): 283-8, 2004 May-Jun. [PUBMED Abstract]
- Heytens L, Verlooy J, Gheuens J, et al.: Lazarus sign and extensor posturing in a brain-dead patient. Case report. J Neurosurg 71 (3): 449-51, 1989. [PUBMED Abstract]
- Truog RD, Cist AF, Brackett SE, et al.: Recommendations for end-of-life care in the intensive care unit: The Ethics Committee of the Society of Critical Care Medicine. Crit Care Med 29 (12): 2332-48, 2001. [PUBMED Abstract]
- Campbell ML, Bizek KS, Thill M: Patient responses during rapid terminal weaning from mechanical ventilation: a prospective study. Crit Care Med 27 (1): 73-7, 1999. [PUBMED Abstract]
- Truog RD, Burns JP, Mitchell C, et al.: Pharmacologic paralysis and withdrawal of mechanical ventilation at the end of life. N Engl J Med 342 (7): 508-11, 2000. [PUBMED Abstract]
- van Dooren S, van Veluw HT, van Zuylen L, et al.: Exploration of concerns of relatives during continuous palliative sedation of their family members with cancer. J Pain Symptom Manage 38 (3): 452-9, 2009. [PUBMED Abstract]
- Cherny NI, Radbruch L; Board of the European Association for Palliative Care: European Association for Palliative Care (EAPC) recommended framework for the use of sedation in palliative care. Palliat Med 23 (7): 581-93, 2009. [PUBMED Abstract]
- American Academy of Hospice and Palliative Medicine: Statement on Palliative Sedation. Chicago, Ill: AAHPM, 2006. Available online. Last accessed July 16, 2014.
- Fainsinger RL, Waller A, Bercovici M, et al.: A multicentre international study of sedation for uncontrolled symptoms in terminally ill patients. Palliat Med 14 (4): 257-65, 2000. [PUBMED Abstract]
- Morita T, Chinone Y, Ikenaga M, et al.: Ethical validity of palliative sedation therapy: a multicenter, prospective, observational study conducted on specialized palliative care units in Japan. J Pain Symptom Manage 30 (4): 308-19, 2005. [PUBMED Abstract]
- Morita T, Chinone Y, Ikenaga M, et al.: Efficacy and safety of palliative sedation therapy: a multicenter, prospective, observational study conducted on specialized palliative care units in Japan. J Pain Symptom Manage 30 (4): 320-8, 2005. [PUBMED Abstract]
- Elsayem A, Curry Iii E, Boohene J, et al.: Use of palliative sedation for intractable symptoms in the palliative care unit of a comprehensive cancer center. Support Care Cancer 17 (1): 53-9, 2009. [PUBMED Abstract]