In addition to decisions about treating symptoms at the end-of-life, it is also helpful for patients to decide if and when they want this treatment to stop. A patient may wish to receive all possible treatments, only some treatments, or no treatment at all. These decisions may be written down ahead of time in an advance directive, such as a living will. Advance directive is the general term for different types of legal documents that describe the treatment or care a patient wishes to receive or not receive when he or she is no longer able to speak their wishes.
The patient may also name a healthcare proxy to make these decisions when he or she becomes unable to do so. Having advance directives in place makes it easier for family members and caregivers when very important decisions have to be made in the last days, such as whether to give nutrition support, restart the heart, help with breathing, or give sedatives.
When the patient does not make choices about end-of-life care, or does not share his choices with family members, health care proxies, or the health care team, treatment may be given near death against the patient's wishes. As a result, studies show that the patient's quality of life may be worse and the family's grieving process may be more difficult.
Studies have shown that cancer patients who have end-of-life discussions with their doctors choose to have fewer procedures, such as resuscitation or the use of a ventilator. They are also less likely to be in intensive care, and the cost of their health care is lower during their final week of life. Reports from their caregivers show that these patients live as long as patients who choose to have more procedures and that they have a better quality of life in their last days.
Nutrition support can improve health and boost healing during cancer treatment. The goals of nutrition therapy for patients during the last hours of life are different from the goals for patients in active cancer treatment and recovery. In the final days of life, patients often lose the desire to eat or drink and may refuse food or fluids that are offered to them. Also, procedures used to put feeding tubes in place and problems that can occur with these types of feedings may be hard on a patient.
The goal of end-of-life care is to prevent suffering and relieve symptoms. If nutrition support causes the patient more discomfort than help, then nutrition support near the end of life may be stopped. The needs and best interests of each patient guide the decision to give nutrition support. When decisions and plans about nutrition support are made by the patient, doctors and family members can be sure they are doing what the patient wants.
If the patient cannot swallow, two types of nutrition support are commonly used:
Each type of nutrition support has benefits and risks.
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An important decision for the patient to make is whether to have cardiopulmonary resuscitation (CPR) (trying to restart the heart and breathing when it stops). It is best if patients talk with their family, doctors, and caregivers about their wishes for CPR as early as possible (for example, when being admitted to the hospital or when active cancer treatment is stopped). A do-not-resuscitate (DNR) order is written by a doctor to tell other health professionals not to perform CPR at the moment of death, so that the natural process of dying occurs. If the patient wishes, he or she can ask the doctor to write a DNR order. The patient can ask that the DNR order be changed or removed at any time.
A ventilator is a machine that helps patients breathe. Sometimes, using a ventilator will not improve the patient's condition, but will keep the patient alive longer. If the goal of care is to help the patient live longer, a ventilator may be used, according to the patient's wishes. If ventilator support stops helping the patient or is no longer what the patient wants, the patient, family, and health care team may decide to turn the ventilator off.
Some patients may want to be allowed to die when breathing gets difficult or stops. It is important for the patient to tell family members and health care providers, before breathing becomes difficult, of his or her wishes about being kept alive with a ventilator.
Family members will be given information about how the patient may respond when the ventilator is removed and about pain relief or sedation to keep the patient comfortable. Family members will be given time to contact other loved ones who wish to be there. Chaplains or social workers may be called to give help and support to the family.
The decision whether to sedate a patient at the end of life is a difficult one. Sedation may be considered for a patient's comfort or for a physical condition such as uncontrolled pain. Palliative sedation may be temporary. A patient's thoughts and feelings about end-of-life sedation may depend greatly on his or her own culture and beliefs. Some patients who become anxious facing the end of life may want to be sedated. Other patients may wish to have no procedures, including sedation, just before death.
It is important for the patient to tell family members and health care providers of his or her wishes about sedation at the end of life. When patients make their wishes about sedation known ahead of time, doctors and family members can be sure they are doing what the patient would want. Families may need support from the health care team and mental health professionals while palliative sedation is used.