End-of-life care is care given in the period leading up to death, when it is acknowledged by all involved that death is inevitable.
Because of advances in medicine, the dying process can be significantly extended. As a result, patients and their families and friends may face decisions about end-of-life care. As difficult as it might be to talk about one’s own death, expressing thoughts, values, and desires regarding a “good death” can help a person’s loved ones understand the end-of-life care that person desires. This includes discussions about using life-prolonging measures like life support with a breathing machine or ongoing aggressive medical treatments in the end phase of life. Also, the desired location of care (such as in the hospital or at home) can be discussed. A conversation with your physician can provide guidance when deciding on end-of-life care preferences.
Effective end-of-life care requires an understanding and acceptance by the patient and family that death is inevitable. The goals of care in this phase focus on quality, not life prolongation, since in this situation, life-prolonging measures invariably mean prolonging dying. This type of care is also called palliative care or comfort care and is an important part of medical care at the end of life. It is care that helps or soothes a person who is dying. The goal is to prevent or relieve suffering as much as possible while respecting the dying person’s wishes. Comfort needs near the end of life include physical comfort, mental and emotional needs, spiritual needs, and needs regarding practical day-to-day tasks. Appropriate pain control, measures to ease breathing difficulties, paying attention to skin irritations, and attending to problems with digestion like constipation and lack of appetite meet the main physical comfort needs.
The health care team can offer guidance about how medical comfort care can also be provided at home. In some cases, the dying person might experience depression or anxiety or feel like a burden to others. Reassurance, talking about feelings, and, at times, medications can bring relief. Music at low volume and soft lighting are reported to improve mood, help with relaxation, and lessen pain. Comfort care can also mean avoiding bothersome procedures like blood tests, repeated blood pressure measurements, injections, or taking difficult-to-swallow pills.
Spiritual needs, which can include finding meaning in one’s life or resolving unsettled issues with family or friends, can be as pressing as physical needs. Talking to family and friends who share memories, allowing the opportunity to resolve disagreements if possible, can be of help. Involving people from the religious community or a spiritual counselor might bring more peace and comfort to the dying person. Some people close to death might have practical concerns about the tasks and responsibilities they have, like taking care of a pet or plants or checking the mail. Addressing these concerns could bring additional peace of mind to the person.
When a person expresses a desire to speed up or initiate the dying process during the end-of-life phase, careful evaluation of any unmet needs is very important. Guidance by physicians with experience in end-of-life care will be invaluable in these situations.
National Institute on Agingwww.nia.nih.gov/health/publication/end-life-helping-comfort-and-care/introduction
To find this and previous JAMA Patient Pages, go to the Patient Page link on JAMA’s website at www.jama.com. Spanish translations are available in the supplemental content tab. A JAMA Patient Page on advance directives was published in the February 24, 2015, issue of JAMA.
Sources: Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: National Academies Press; September 17, 2014.
Topic: Palliative Care
Razmaria AA. End-of-Life Care. JAMA. 2016;316(1):115. doi:10.1001/jama.2016.2440