End-of-life care

ALSO KNOWN AS: Palliative care, supportive care, hospice care

DEFINITION: End-of-life care is palliative or supportive care given to terminally ill patients whose treatment goals have switched from curing cancer or extending life to achieving the best possible quality of life.

Goals: Palliative care is patient- and family-centered care focused on achieving by managing pain and other distressing symptoms. It also addresses the intellectual, emotional, social, spiritual, and existential needs of patients and their families while facilitating patient autonomy and control over care. Many cancer centers are integrating palliative care with life-prolonging treatments as a part of comprehensive cancer care. Over the course of treatment for a potentially fatal illness such as cancer, goals are constantly evaluated based on the response to the disease. When a disease progresses despite treatment and no further treatment is available, or if a person decides that the burden of treatment outweighs the benefit, palliative care becomes the main focus of care. The goals of end-of-life palliative care are set by patients in consultation with their families and healthcare providers. The treatment plan is based on the goals and is shaped by the patient’s definition of quality of life, treatment preferences concerning the type of care and the care setting, and physical and emotional condition.

Aspects of care: An end-of-life palliative care plan is developed with the healthcare provider in consultation with family or, in some cases, a palliative care consultant. Symptom management and patient function are constantly assessed so that appropriate interventions can be made. When deciding on a course of treatment, care can be categorized as that which should be given, care that is optional, and care that should not be given because the patient or medical proxy refuses, it is not aligned with the patient’s goals, or it presents a burden of treatment that outweighs the benefits. There are many physical symptoms that are the focus of end-of-life palliative care: pain, fatigue, difficulty breathing, loss of appetite and weight, dry mouth, bedsores, depression, confusion or delirium, vomiting, constipation, and diarrhea.

Of these symptoms, pain, fatigue, and difficulty breathing are among the most common and distressing in people dying of cancer. Pain, as a direct result of the cancer or treatments, is treated with opioids and other pain medications, given orally or through a skin patch, rectal suppositories, injections, or patient-controlled devices in which a pump injects medication intravenously, subcutaneously, or into the spine. Around-the-clock dosing is recommended for chronic pain, while intermittent pain is treated as needed. Pain is often inadequately treated because of poor communication between patients and healthcare providers, fears of adverse side effects and addiction, and the healthcare provider’s lack of knowledge or experience in managing pain.

Fatigue that cannot be relieved by rest is caused by the disease, treatment, medications, psychiatric comorbidities, difficulty breathing, infection, nutritional or chemical imbalances, sleep disturbances, or uncontrolled pain. It profoundly affects a person’s quality of life. Treatment of fatigue primarily involves addressing the cause, some drug therapies, and having the patient engage in exercise.

Difficulty breathing, or dyspnea, can be caused by heart and lung conditions or infections, anemia, anxiety, malnutrition, urinary retention, or constipation. Treatment involves medical intervention when appropriate and focusing on comfort, which can include the provision of oxygen, having the patient sit up, moving the air around a room, relaxation techniques, and discontinuation of intravenous fluids to reduce the amount of fluid in the lungs. Some patients in the later stages of dying elect to use a or take opioid pain medications or sedatives to ease the distress.

In addition to the management of physical symptoms, end-of-life care provides psychological and psychiatric care to patients and families to provide support, assist in making difficult decisions, and help with depression, grief, life completion, or life closure issues. Education concerning the prognosis and the dying process provides autonomy over care and helps prepare patients and families. Information is often provided concerning patients’ legal rights to receive relief from pain and suffering, to make their own healthcare choices, to document those choices through advance directives, and to have those choices enforced by a medical proxy if their decision-making capacity becomes impaired. Financial planning may also be provided with respect to facilitating insurance coverage of services or accessing community resources to provide or pay for services. Patients’ religious, spiritual, and cultural needs are assessed so that care can be delivered in the most respectful and effective manner possible.

End-of-life care can be provided in the home, hospital on an inpatient or outpatient basis, nursing homes, or long-term care facilities. Since the 1970s, the most developed and available form of end-of-life palliative care has been hospice care, provided in freestanding hospice centers or off-site in the community. People are typically eligible for hospice care if their doctors estimate they have six months or less to live, and they have refused or exhausted all treatment options.

In the twenty-first century, improvements have continued to be made to end-of-life care. Options for end-of-life care are discussed earlier in a person’s disease progression and with increased empathy and openness. Holistic and interdisciplinary approaches have been developed to ensure the patient is considered a whole being with diverse needs. The proliferation of telehealth, made even more popular by the COVID-19 pandemic, made receiving services at home more accessible. Electronic health records have allowed for a more seamless transfer of information between healthcare providers. Finally, educational initiatives have aimed to inform healthcare providers of end-of-life protocols. 

Imminent death: Special end-of-life care provisions are made when a person is actively dying, or death is imminent. These provisions include focusing on comfort care; discontinuation of diagnostic tests or monitoring, especially unnecessary needle sticks; ensuring access to pain medications if the oral route is not available; relieving dry mouth and lips; repositioning for comfort; ensuring patient privacy; and facilitating the family’s desire for round-the-clock presence and uninterrupted time together. Education of patients and family members on the signs and symptoms of the stages of death will help ease their anxieties and fear and assist in decision-making. Patients and families also often benefit from psychological or religious support.

Patients or families may be faced with difficult decisions, which ideally should be discussed ahead of time. These include withdrawing or withholding medical interventions such as nonoral feeding, artificial hydration, mechanical ventilation, medications other than those for pain, dialysis, and cardiopulmonary resuscitation (CPR). Patients and families may also have to decide if termination sedation is appropriate. Sedation is indicated when a patient is removed from a ventilator and is expected to die shortly thereafter, or for control of refractory symptoms that cannot be controlled despite aggressive efforts.

Legal and ethical considerations: The federal Patient Self-Determination Act of 1990 gives patients the right to participate in and direct their own healthcare. State law protects these rights through advance directives, which legally document a patient’s healthcare choices and designate a medical proxy who is authorized to make decisions if the patient loses decision-making capacity or is deemed incompetent by a court of law. Decision-making capacity is determined by physicians based on a patient’s ability to receive and evaluate information, communicate wishes, understand the risks, benefits, and alternatives to treatment, and make consistent and logical decisions, regardless of whether the person agrees with the physicians. If there are no advance directives and the patient loses decision-making capacity and has not designated a medical proxy, the healthcare provider must make the medical decisions.

The intent of treatment dictates whether it is ethical. If the intent of treatment is desirable and helpful to a patient, then adverse effects, such as dying, are acceptable in end-of-life palliative care; however, it is unethical to take measures solely to hasten death. There is no ethical or legal mandate to continue medical interventions if it is against the wishes of a patient with decision-making capacity or of a legally designated medical proxy, or if the healthcare provider determines the burden of medical intervention outweighs the benefits. The decision to withdraw or withhold medical intervention is not euthanasia or assisted suicide. Medical interventions are distinguished from pain relief and from ordinary care that can be given by a layperson, which should be given to ensure quality of life.

Bibliography

Lynn, Joanne, and Joan Harrold. Handbook for Mortals: Guidance for People Facing Serious Illness. New York: Oxford University Press, 1999.

“Palliative Care.” World Health Organization (WHO), 5 Aug. 2020, www.who.int/news-room/fact-sheets/detail/palliative-care. Accessed 12 June 2024.

Shannon, Joyce Brennfleck, ed. Death and Dying Sourcebook: Basic Consumer Health Information for the Layperson About End-of-Life Care and Related Ethical and Legal Issues. 2d ed. Detroit: Omnigraphics, 2006.

Steindal, Simen A., et al. "Patients’ Experiences of Telehealth in Palliative Home Care: Scoping Review." Journal of Medical Internet Research, vol. 22, no. 5, 2020, doi.org/10.2196/16218. Accessed 12 June 2024.

Young, Carolyn, Cyndie Koopsen, and Daniel Farb. End of Life Care Issues Guidebook: A Guide for Healthcare Providers and the Public on the Care of the Dying. Los Angeles: University of Health Care, 2005.