Aging & Health A to Z
End of Life Care
Basic Facts & Information
What is Life Sustaining Treatment?
Advances in medical technology have often created medical dilemmas. For example, health care providers may be able to successfully treat a sudden complication in a seriously ill person, but restoring function and improving the underlying disease may be impossible. In such a situation, treatment that only prolongs life may be appropriately withheld. In fact, the doctor may refuse treatment under a variety of situations:
- there is no specific medical rationale for the treatment
- the treatment has proved ineffective for the person
- the person is unconscious and will likely die in a matter of hours or days even if the treatment is given
- the expected survival is virtually zero
The doctor’s discretion in these matters may vary widely across the United States.
An informed person who is capable of making medical decisions may refuse life-sustaining treatment, such as cardiopulmonary resuscitation (CPR), intensive care, transfusions, antibiotics, and artificial feedings. An informed refusal should be respected, even if the person’s life may be shortened as a result and even if the person is not terminally ill or in a coma.
Decisions for people in nursing homes
Nursing-home residents may need additional safeguards when decisions about life-sustaining treatments are made. These people may not have close relatives to act on their behalf, and their relationships with health care providers may be superficial. There are also fewer caregivers involved in decisions at nursing homes compared with hospitals. In addition, substandard care is sometimes a problem in nursing homes.
The decision to transfer a nursing-home resident to a hospital when their condition worsens is a common dilemma. This is because the goal of treatment for many residents is to relieve discomfort rather than to prolong life. If individuals or their surrogates turn down the transfer to a hospital, their wishes should be respected. It should be a routine part of nursing-home care to discuss these decisions well in advance.
Federal legislation now requires inquiry into advance directives for all patients in institutions (eg, nursing homes) that receive federal funds. This leads to a more systematic approach to discussions about treatment status. Since this law was passed, nursing homes have transferred fewer patients to acute-care hospitals, while maintaining patient and family satisfaction with care.
Difficult emotional feelings are a natural part of decisions to stop, withdraw, or withhold care. We are torn between the impending sense of loss of our loved ones and our desire that their suffering be relieved and their dignity maintained. Regardless, there is little point in continuing a treatment that is not effective.
People often make a distinction between stopping treatment and not starting it in the first place. For example, some people are willing to withhold mechanical support of breathing (for example, the use of a ventilator), but are reluctant to discontinue it once it has been started. However—logically, ethically, and legally—there is no difference between not starting treatment and stopping it. If you feel that there is an important emotional difference for you between stopping a treatment and not starting one, you should explicitly discuss this with your healthcare provider.
End of Life Considerations
There are situations that ill older adults may find themselves in at the end of life that benefit from advance directives. These following situations can bring up emotional, moral, religious and other personal beliefs that complicate decision-making for patients, their caregivers and surrogate decision-makers.
Do Not Resuscitate Orders
Cardiopulmonary resuscitation (CPR) may be an effective treatment for unexpected sudden death, but it is not effective for people whose death is expected. Older adults generally do poorly after CPR because of serious illnesses and decreased functional status.
When CPR is medically pointless and therefore ethically inappropriate the physician should explain why CPR is not indicated. In some settings, however, the law may require that physicians offer the option of CPR even when it would be pointless. When CPR might be of benefit, the physician must make sure that all concerned are aware that the likelihood of survival is low even if CPR is administered.
Many people with chronic illnesses do not want CPR, and their informed refusal, called a do-not-resuscitate order, should be respected. The attending physician should indicate the reasons for the order and plans for further care in the medical record. Note that a do-not-resuscitate (DNR) order means that only CPR will not be performed. Other treatments may still be given.
Discussions with your healthcare team about DNR orders are excellent opportunities to review your total plan of care, including supportive care and appropriate treatments that would be continued after the DNR order takes effect.
Tube feedings clearly benefit people who want or agree to this treatment. In addition, feeding provides more time to diagnose and treat underlying conditions. However, providing artificial nutrition and hydration (fluids) is ethically and legally controversial in severely demented or debilitated individuals who cannot or will not eat. Also, it is unknown if these individuals suffer hunger or thirst if tube feedings are withheld.
Artificial feeding can become an even greater problem in severely mentally disturbed individuals who consistently refuse food offered by hand or who are unlikely to suffer hunger or thirst. Tube feedings can also cause medical complications such as pneumonia if the artificial nutrition is accidentally inhaled into the lungs.
Learn more about tube feeding in this Ask the Expert Q&A.
Because patients with dementia often pull out feeding tubes, they are often physically restrained (tied down). This removes what little dignity and independence these people have left. The situation is worsened because individuals with dementia usually cannot understand how the treatment benefits them. Restraints are also difficult to consider as humane care. Sedation or "chemical restraint" might seem more acceptable on the surface, but these medications also rob people of dignity and often have unacceptable side effects.
When a person pulls out a feeding tube, everyone involved should reconsider whether the feeding tube is appropriate. If so, a more permanent measure should be considered, such as a tube placed directly in the stomach or intestine. If the goal is to provide comfort, then giving the person more direct attention and affection may be better than trying to increase the intake of nutrients through tube feeding.
The use of restraints in the long-term-care setting has become closely regulated and monitored. Physical restraints have little, if any, value in preventing injuries from falls, and less restrictive alternatives are usually available. Physicians and surrogate decision makers should extensively discuss the legal and ethical implications of using physical or chemical restraint.
Euthanasia (also called mercy killing) is the act of helping a person to die, usually by the administration of lethal substances. There are three types:
- non-voluntary (where consent is not possible)
Euthanasia is illegal and not practiced in the United States except in cases of capital punishment. It is not considered euthanasia to honor advanced directives which limit treatment or lead to withdrawl of treatment which has already been started. In such cases, health professionals are considered to be respecting the patient’s wishes as they would with informed consent, and withholding treatments which the patient would not have wanted.
Requests for euthanasia generally come up because individuals suffer uncontrolled pain, want more control over their situation, or fear abandonment. However, many terminally ill people who have requested euthanasia change their minds after pain has been relieved.
There is great potential for abuse with euthanasia, even if voluntary. Because of this, opponents say that allowing voluntary euthanasia might all too easily lead to involuntary euthanasia of helpless people. Also, some feel that physician involvement in euthanasia may undermine trust in doctors, because doctors should be viewed as healers, not life takers. However, others believe that there are circumstances when it may be more compassionate to carry out a request for euthanasia than to have the person continue an existence that is degrading.
Difference between Voluntary Euthanasia and Physician-assisted Suicide
Voluntary euthanasia may sometimes be confused with physician-assisted suicide. The key difference is that in voluntary euthanasia, someone other than the patient administers the lethal substance. In physician-assisted suicide, the physician provides a prescription allowing the patient to obtain lethal medication, but the patient takes lethal medication on his or her own.
Healthcare professionals have traditionally felt it their duty to intervene to prevent suicide. In addition, many physicians believe that assisted rational suicide is unethical for the same reasons that they oppose voluntary euthanasia. That is to say, they feel that there is a great danger of abuse, that assisted suicide does not fit the role of the physician, and that it undermines a person’s trust in the healthcare profession.
For some people, however, suicide might be considered a rational choice. For example, a rational person might consider suicide if he or she has widespread cancer and unbearable symptoms that cannot be improved with medication. A person in this situation may feel that continuing to live with a progressive illness of this type is degrading, and may want to have control over his or her death. He or she might ask the physician how to end their life, or request the medications with which to do so. These are matters of individual conscience.
In most states, the law prohibits assisted suicide. However, the US Supreme Court has decided that physician-assisted suicide is not necessarily unconstitutional, leaving each state to settle the issue for its residents. For example, physician-assisted suicide has been legal in Oregon since 1997, although experience has shown that it is a rarely used alternative. During the 3 years after this legalization, only 91 people opted for assisted suicide out of 90,000 who died in Oregon during that time. Washington is the only other state which has legalized physician-assisted suicide.
Updated: March 2012
Posted: March 2012